Ryan's Story

8 months later.....

2011-02-01T15:23:00.000-08:00

Ok so I will start with a major apology! It has been almost 8 whole months since I posted anything. I am going to try to update at least once a month from here on out but please do not hold me to it. By the time I get off work, pick Ryan up from school, come home and eat dinner............EXHAUSTED!!!!

Health Update!!!

Let's see here.......gotta think back a while! I'm sure you probably don't remember but Ryan was sick A LOT last year! She constantly had a sinus infection and it never got better. After SEVERAL months of being sick and seeing the doc 13 times in 7 months, they finally figure it out. She went back to her ENT doc and he requested a CT scan of Ryan's face. (WHAT???) That's what I thought too! Turned out, every single sinus cavity and pocket in her face was filled with infection! YUCK!! Her adenoids were also HUGE! So, Ryan was scheduled for surgery on November 19. Before she could have the surgery, she had to see Cardiology of course......AND.....her heart is STABLE!!!! There has been no progression. THANK GOD! Dr. Hor approved her procedure. The surgery she had was an adenoidectomy (removal of adenoids) and a sinus wash out. The adenoid part was fine and no big deal, but the wash out sounded pretty painful! They had to fill BIG syringes with salt water, and then attach a skinny but long tube to the end of it. The tubes got stuck up her nose and pushed into her face in the cheek area where the sinuses are located. They then pushed the salt water in, then sucked the syringe back out! BLAH GROSS! They repeated this several times. The total time was about an hour and it worked wonders! She has gotten sick since then, but now the infection is able to drain out on it's own. The recovery wasn't so great. She had nosebleeds for 3 days and 2 black eyes from the tubes in her face. Seeing her like that was pretty difficult. It looked like somebody beat her up. Not a nice vision. It was worth it though because now she is better.

BIG EVENTS!!!

A few big events have taken place since the last post...2 of them being pretty recent. Ryan is now 3 YEARS OLD!!!! That's right! She turned 3 on December 13th and I'm pretty sure this year, she is going to be about 17 or so! The things she says just amaze me! (that's not always a good thing!) Pics of the BIG 3 YEAR OLD BELOW!!!

As you can see, she had a BLAST!! And spongebob had to come too her party to! HAHA. I really cannot believe she is 3 already! TIME FLIES! She got tons of stuff for her birthday and loved it all!

The next big event was Christmas! She was SO EXCITED about Santa bringing her a BIG KITCHEN. She saw this big kitchen at Children's Hospital when she had her surgery. They had one in the waiting area of "same day surgery." She HAD TO HAVE IT!!! So, Santa found it online at http://www.littletikes.com/

She was in total shock when she woke up Christmas morning and saw the very thing that she had talked about for 2 whole months! It came with a ton of food and everything! She must have been such a good little girl last year!

Ryan is doing great in school also! She can count to ten and knows all of her colors!!! (in sign language too!) She is so smart that it just blows my mind! She has been very sweet lately to. A few weeks ago she told me "Mommy, you are the best mommy ever!!!" TOO CUTE!!! and she calls me her "snugglebums" LOL. It just melts my heart!

Surprisingly, we really don't have anything new going on other than the stuff I mentioned. I will try to post more often!!! And hopefully soon I can muster up the energy to add more pics! I am also planning on trying to catch up on what has been going on with everyone else to.

Until next time....

It's been a while....

2010-06-21T13:22:00.000-07:00

Sorry it's been so long again. There have been a lot of people getting ahold of me on facebbok and through email stressing their concerns over Ryan. Well....she is doing great. Me on the other hand, not so much. I stayed home from work today VERY SICK. Fever of 101 and aching all over. Also, I have a sore throat. UGH!! I really hate feeling this way. I have no energy at all. :(

I thought I would post some pics of Ryan actually having a good time in Cumberland.

We took Ryan on June 8th to see Dr. Myer up at Children's. He is her ear, nose and throat specialist. He thinks that the reason her lymph nodes got so big is due to strep. He thinks the strep attacked her glands and lymph nodes. The only way to know for sure what made all of this happen is to biopsy the lump. NOT HAPPENING. Her lymph nodes are still somewhat enlarged but a lot better. She took a very strong antibiotic for 2 weeks and has been doing well.

This is a picture of Ryan at the hospital last Friday. She had her sleep study done and we should be able to get the results at the end of the week. We were expecting it to go really bad but it went great. We thought she would scream her head off while they hooked everything up to her but she didn't make a sound....except for chattering away of course. She slept through the night with no problems. It was so nice to see her being such a big girl. I will keep everyone posted with the results when we get them. This study will be the deciding factor on rather or not her tonsils and adenoids will be removed. I'm sort of hoping they just do it and get it over with. She snores and stops breathing in her sleep a lot. Hopefully we will get it all figured out. This girl is my hero. She has been through so much and I really do look up to her. She can handle it all. She will grow up to be a stronger person for everything she goes through.

I will post again when we get the results of the sleep study and let everyone know what is going on. Thanks again for all the support and worry for Ryan. It means more than you will ever know. :)

When it rains....it POURS!!!

2010-06-01T18:48:00.000-07:00

This update probably wont be very long because I have suddenly hit a wall of anxiety over the recent events that have taken place so I'm just going to get too the point. We left this past Saturday to go to Lake Cumberland. It's 4 hours south of us in Albany, Ky. We got to the lake at about 1:30 pm and my mom was there waiting for us with the boat ready to go. We were so excited to get away for the weekend...and Ryan loves the boat and lake. Everything was normal...and fine....and well.....GREAT!!! UNTIL....we were on the boat hanging out and we were getting ready to go for a swim. My mom had been holding Ryan while the boat was moving, and then handed her to me when we stopped so she could get in the water...and that's when I saw IT.....the strangest and scariest thing I have ever seen in my life.

I saw that on Ryan's neck!! I immediately freaked out!!! I have never seen anything like this before. I told my mom we had to go and we got the boat back to the dock as quickly as possible. I kept looking for a bite mark somewhere on her body just praying that she had gotten bit by a bug and was allergic to it....hoping that just some benedryl and she'd be fine. That wasn't the case. Jay and I left (leaving Josh with my mom) and took Ryan to the Clinton County Hospital a few minutes away. As soon as we arrived, they got blood from Ryan's arm and took her straight back for a CT SCAN of the neck and chest. The chest was fine and clear of pneumonia, but the neck didn't look so great. It looked as if there was some form of fluid in her lymph nodes. The doctor in the ER thought this needed to be surgically drained RIGHT AWAY but he wanted Ryan to see an Ear, Nose and Throat specialist first. Well, they don't have one at that hospital. He called the closest hospital which was in Somerset (an hour away) and they didn't have an ENT doc there or on call. Next on the list, UK (University of Kentucky...yes like the college) Medical Center. This was 2 hours away and only about 1 1/2 hours from home. The doc tried to get a helicopter but they couldn't provide one because it had started raining pretty bad.....not safe enough to fly. So, ambulance it was. I got into the ambulance with Ryan, and Jay was going to follow in our car. The ride was 1 hour and 40 minutes, even with us going about 90 mph and going through every light and stop sign. Ryan slept most of the way there and seemed to be peacefull. She acted normal the whole time. It was like she didn't even know it was there. Jay was following the GPS directions which was terrible because it took him down nothing but back roads to get there. He never even got on the highway. It should have only taken him about 2 to 2 1/2 hours but instead, it took him almost 3 1/2. Once we got there, they wheeled Ryan back to her room in the ER on the stretcher. A doctor came in and just started asking questions. I've never answered so many questions in my life at one time. I was terrified. I really cannot remember the last time I was this scared.

I took this pic with my cell phone in the ambulance. The first hospital had marked it with a sharpie so they could keep an eye on rather it would get bigger or smaller. We sat, and sat, and sat in the ER just waiting. I was getting worried that something had happened to Jay, and he FINALLY showed up. He was, of course, not very happy about the time it took him to get there. He just wanted to be with Ryan and he couldn't be. She was sleeping when he arrived and the doctor's came in and asked MORE questions. It seemed like everyone just wanted to talk to us, yet they weren't telling us ANYTHING. It was about midnight when Jay had shown up...time was going way to slow. At 2:30 am, Ryan was wheeled upstairs so they could get an ultrasound of her neck. She had already had an IV in because she recieved IV steroids and antibiotics on the way to the hospital. The results of the ultrasound showed that the lump was nothing but swollen lymph nodes. Ryan was admitted and given more IV antibiotics overnight.

Once we woke up, after only about 3-4 hours of sleep, an infectious disease doctor came in to examine Ryan. He decided that his diagnoses for her would be.....MRSA. Yes....MRSA, as in the worst staph infection you can get that cannot be treated with most antibiotics. The type of infection that once you get it, it stays dormant in your body FOREVER until it decides to show it's ugly self again. The type of staph infection that attacks heart valves and lungs....IS THIS GUY SERIOUS??? HOW CAN THIS BE HAPPENING??? This WILL NOT be good for her heart AT ALL!!!!

But then again, what makes him think it's MRSA?

There are a couple different ways to test for MRSA...one being a swab of the nose. It actually takes 3 different swabs over the course of 3 weeks. One swab per week. The other way, is blood cultures. The strange thing about this is, although Ryan's labs were run twice (the second time they got blood from her IV) no cultures were ever done. They had only swabbed her throat, and that was negative for strep and mono. Is anyone else confused here??

If you answered NO to this question....there is something wrong with you!! :)

Ryan was discharged at about noon on Sunday, and we decided we were going back to Cumberland to finish our vacation. The doc had given us the ok to take her back so we were looking forward to being out on the lake again. We got Ryan's prescriptions filled before we headed back down. The prescription was for a VERY STRONG dose of Clindomycin. The only antibiotic that gets rid of the MRSA infection (although it will stay in your body forever, the meds can get rid of the current infection.)

We got back to the boat and finished our trip and had a really good time, although we were exhausted!!! Once we got home, yesterday afternoon, I decided to do some research on sudden lymph node swelling, and what I saw, made me sick to my stomach and I have felt this way since. I called Ryan's cardiologist today and discussed everything with him and he wants us to finish the meds that she was given...which smell awful by the way....and if her labs are still abnormal a week after she is off medication, then some more testing will be done. Her white blood count is high, her iron is low (they are saying she is anemic all of a sudden) her platellites were really high and her liver funtion is high. So, whatever it is that she has, it has started affecting her organs. The "thing" on the search that I did that has made me feel so sick...and the testing that Ryan will be getting if her labs don't become normal in a few weeks....Leukemia. Her cardiologist agrees that it would be a good idea to test for it if her blood work isn't back to normal after these meds. I am disgusted and terrified at the thought of this being the case, but it is a possibility and a reality that we just have to deal with. I will, of course, keep everyone posted. Please keep Ryan in your thoughts and prayers as we try our best to get her through everything. Thank you for everyone's love and continued support.

lots to talk about

2010-05-25T17:28:00.000-07:00

Alrighty....it's been WAY TO LONG!!! We got a new computer...FINALLY! So, we are back. I can't say that I am going to update as much as I did before because being back to work full time is kicking my butt!! I'm so tired every night when I get home.

Ryan is doing SO GREAT in school!! She has a favorite teacher, her name is Katie. Ryan calls her "Tatie." She can say her ABC's now!!! Well, most of them. She does great with her colors too. She hasn't been at school this week though thanks to this little guy pictured below...

For those of you that do not know what this is....it's an optichamber. There is an inhaler that goes in one end and the mask goes on Ryan's face. She gets 4 puffs every 4-6 hours or as needed because she now has pneumonia. For the FIRST TIME EVER!!! For those of you with heart kids, you know what this means. We are VERY lucky that Ryan was not admitted to Children's Hospital after her peds visit Monday night. The x-ray came back with mild pneumonia and the doc says we caught in just in time. THANK GOD!!! We are going out of town this weekend to Lake Cumberland to go boating. The inhaler and antibiotics will be coming with us.

Mother's Day was great as usual. Jay brought me flowers to work on the Friday before Mother's Day. I also just got a new car....a 2006 Corolla S. VERY EXCITING!!! It's much better than the 1998 Chevy Cavalier that I was driving. It was a 2 door and my back couldn't take much more of getting Ryan in and out. Also for Mother's Day, I am getting a personalized liscence plate. It wont be here until December, but it will be the basic Kentucky plate and it will say RYS MOM. I cannot wait to get it!!!

Those are pics from our Mother's Day trip to the zoo. We had a great time!! I still have not caught up on everyone's blog but am going to try to get at least a couple in a day over the next few days. We are leaving Saturday morning for our trip so I should have time. I would love to post more but Ryan isn't doing so good so I've got to go for now. I hope everyone has a great weeked!!!

we are here

2010-05-12T17:40:00.000-07:00

I just wanted to let everyone know that we are still here! Our computer has totally died on us and we are looking into buying a new laptop. I am updating on my cell phone and cannot do a whole lot. I promise I will post again. Hopefully soon. And I cannot wait to catch up on whats going on with everyone!

update through pictures.....VACATION!!!

2010-04-22T15:56:00.000-07:00

all the soldiers on family day

my brother, I'm so proud of him!!!

smoke bombs

looking for her "Untle Fun Bob" (Uncle Sponge Bob)

The soldiers coming out of the smoke

My brother is the 3rd one over toward the right in the front row!!

SO PRETTY!!!! She loved the Hibachi grill and the big flames.

and then came the beach....FLORIDA!!!!

Ryan and her cousin Logan (wearing Morgan's flip-flops)

holding hands while walking to the beach

me and my Princess!!!

LONG OVERDUE!!!

2010-04-08T15:35:00.000-07:00

I'm sorry this update has taken so long but we have been VERY busy!!! Let's get right to it. Easter was GREAT!!! Ryan wasn't feeling well AGAIN/STILL Friday and Saturday but got a little better on Sunday. Thank God. She had fun finding eggs with her cousins and doing some arts and crafts too!! Here are some pics!!

she is spider man now!!!

new slippers :) courtesy of the Children's Hospital gift shop

That is not all of the pics that I took but you get the idea. She got tons of stuff from the Easter Bunny including the new spiderman backpack and blanket. The mask was given to her by our neighbor, Carter, who is 6 years old. They share the same passion for spidey.

I'm not trying to make this update super short, but once again, I don't have much time. Ryan's cardiology appointment didn't go as well as we had hoped. Her stenosis is worse. Her gradient on December 4th was at 41....last week, it was 48. Dr. Hor said he doesn't want to push another balloon procedure on her just yet because her right ventricle has not gotten any bigger since her last check up. We are waiting 6 months to go back. I took her to the peds office on Monday because she had blisters in her mouth and a rash on her back and chest. Any guesses yet???

Hand, Foot and mouth disease. They said she was already past the contagious stage and this would explain her not feeling well and running a fever on Friday and Saturday but not the high fevers for the past month that have done damage to her heart. So, when she goes back this Saturday, they are giving us a referral to see an infectious disease doc up at the hospital. UGH!!!! It really doesn't ever stop!!! I will try to keep you all posted.

On a lighter note....we are leaving on Tuesday!!!! When I get off work Tuesday at 4:45, I am coming home and loading up the car and we will start the 10-11 hour drive to Georgia to see my brother graduate from Army Basic Training!! YAY!!! After the 2 days that we will spend with him, we will drive 3 hours further south on Thursday night to Jay's parents condo in Ft. Walton Beach, Florida!!! We will spend all day Friday and all day Saturday at the Beach, then we will leave late Saturday night to drive back home!! I cannot wait to see my baby on the beach. It's going to be such a nice get-a-way!!! I will have TONS of pics of that too I'm sure!!!

Ok, well the princess is STARVING FOR ATTENTION since we don't see eachother that much anymore. GOTTA GO!!! I will eventually catch up on everyone's blogs!! Sorry :(

Hope everyone had a HAPPY EASTER and that everyone's weekend is GREAT!!!

Can you solve the riddle??

2010-03-25T14:56:00.000-07:00

If any of you are my friends on facebook then I'm sure you are wondering what is going on with Ryan. Well...nobody knows. She has, yet again, brought on another mystery. Only this time, it's a pretty big one. In the last post, I mentioned that Ryan had a sinus infection, fever of 103 and pink eye. Well, everything went away, except the fevers. For the last 3 weeks....yes 3!!!! Ryan has had fevers that have come and gone, but mostly stayed with her. This past Saturday, we alternated Tylenol and Motrin every 4 hours and then we went to sleep in my bed around 9 pm. Jay was at the neighbors house watching the UK game and when he came home, he came into our room and felt Ryan's head. She was ON FIRE!!! He woke me up and was freaking out. Josh was here and was already sleeping. I grabbed the thermometer and took her temp under her arm and then added a degree. 105.6 was the result. WHAT?!?!? THIS IS NOT happening!!!! Jay stayed with Josh because we didn't want him to be freaking out and I got Ryan in the car and HIGH TAILED it up to Children's Hospital. On the way, I called the ped that was on call and she said to make sure they get a urine sample to check for a UTI. She also called the ER to let them know we were coming. We always get right in with her because of the heart issues. The nurse in the ER triage checked her temp again and it was the same. She gave her a dose of motrin and within an hour, it had dropped to 103. She was M-I-S-E-R-A-B-L-E!!!! The nurses came in and said they needed to use a cathetor to get a clean urine sample for the test. I left the room!!! I've been there with her while she has had a cathetor at about 6 months old and I can't watch it. Anyways.....the test came back negative. Her urine was CLEAN. So, what is it? NOBODY KNOWS!!! We finally left the hospital at about 4:30 am. The doctor sent us home and said he thinks she caught some sort of virus and said to alternate tylenol and motrin again all day Sunday. He said "if she is still running a fever AT ALL on Monday, follow up with her pediatrician." OK.....will do.

On to Monday: Ryan woke up feeling pretty good. She hadn't had a fever since about 8 pm Sunday night, so I took her to school. 1 pm hit and I got the call. They had given her tylenol at about noon and the temp was still at 103. I couldn't leave work, so my mom went and picked her up and brought her back to our house. I left work at 4 and made an appt with the peds office for 6:45 pm. When we got there, the nurse practitioner sent us upstairs (into the hospital) to get a chest x-ray and blood work in the lab. I had talked to Ryan's cardiologist, Dr. Hor on the way and he sent an order for the labs. He wanted to know if there was bacteria in her blood for fear that it would get into her heart. We finally got home at about 9:15 pm. They said to follow up again on Thursday.

On to today: Jay took Ryan BACK to the peds office this morning. All of the blood work was fine except for her white blood count. The normal count is between 10 and 15 thousand. Hers was at 22,000. Hmmm.....all that means is that there is an infection SOMEWHERE in her body. WHERE?!?!? NOBODY KNOWS!!!! The x-ray was clean as well. Nothing in the lungs. Back to square one. She prescribed an anti-biotic for Ryan to take for 10 days JUST IN CASE!!! And, we are getting some prescription ear drops filled because the inside of her ear was just a little red. So, she will get the drops a couple times a day JUST IN CASE!!! Ryan's next cardiology appointment was not until June 7th......now it is next Wednesday. She will be getting her usual sedated echocardiogram. We didn't schedule an appointment to see Dr. Hor but he always stops by to say hello. He will call us later in the day with the results. His fear is that the high fevers may be doing more damage to her heart, or any other organ for that matter.

During the past 3 weeks, Ryan's energy level has been NON-EXISTENT. She doesn't want to do ANYTHING!!! I was pleasantly surprised yesterday that she even wanted to step foot outside. She has been laying on the couch basically for 3 weeks, not eating much but still staying hydrated. After the meds that she takes are over, if she still is having problems, we are going to follow up with the peds AGAIN! Can you solve the riddle? Do you know what could be wrong? Because we don't have a clue!!! All I know, is I feel SO BAD for her. I hate that feeling of not being able to make her better. Hopefully these meds will work some sort of magic and take care of whatever this is. Please keep Ryan in your prayers. I will keep everyone posted if anything else happens. If anybody has ANY idea's as to what could be wrong with her, please let me know. If you do not want to leave it as a comment on here for any reason, please email me at rysmom07@yahoo.com Any and all idea's or advice would be greatly appreciated. I'm sorry that I really have nothing posotive to write about right now, but I'm mentally and physically exhausted. I will post again sometime soon and will have to play catch up with all of your blogs again this weekend!!!! THANKS FOR ALL OF THE LOVE AND SUPPORT!!!!!

Where do I begin??

2010-03-16T16:54:00.000-07:00

I'm not really sure where to begin with this post. It's been a while. Well, my cousin tied the knot. You know? Kate, the one I always mention in my posts. Her and Justin got married this past Saturday and the ceremony was AMAZING!!! Ryan was supposed to be the flower girl, but she didn't make it down the isle. I'll get to that after the pics!!

dancing with my dad

she was EXHAUSTED!!!!

Josh and Ryan shaking it on the dance floor :)

she was happy after cake

Friday night at the rehearsal

My beautiful big girl!!!

Ok, so onto Ryan and her flower girl problems. She had her pretty white dress on and we thought things would be fine. However, all last week Ryan was VERY SICK!!! It all started last Tuesday when her fever was 103. Then, she woke up Wednesday morning with green mucus POURING out of her nose. BLAH!!! She went to the doc that day and the peds said they thought it was a virus and not an infection.....YEAH RIGHT!!! So, they didn't give her any meds. Thursday morning she woke up with both of her eyes GLUED shut with nasty eye slime and crusty stuff. Have you guessed what it is yet? If you said PINK EYE....you are right on the money. I have no idea where she got it because NONE of the kids at daycare have it. So, I called the peds office and they called her in some eye drops. Needless to say, last week, she was just plain falling apart. She is doing better now, although she still doesn't want to eat much and her sleep is MESSED UP!! She wants to sleep in my bed like she did when she napped while being sick. NOT GOING TO HAPPEN. I am trying to get her back into her bed and her old routine of doing great at bed time with no crying. Hopefully it happens soon. Ryan had a VERY hard day Saturday. She cried almost all day and was only in a few of the professional pictures. Her favorite part was riding in the "BIG TRUCK" which was the Excursion Limo. As you can see from the pics above, she ate some cake and then cheered up, but it didn't last long. During the ceremony, she slept on my mom's lap. :(

Kate and Justin Lang!!!

She has been better now that all the stress is over with, but her cough still sounds pretty yucky. Since she cannot cough the mucus up, she has had some random times of vomiting but other than that, I know she will be just fine. Since she was out of school so much last week though, she had it rough yesterday morning when I dropped her off. She was VERY upset and cried for some time but she did get better as the day went on. She even made a little something....

like the hat??? She got to paint it herself!!!

We are planning a trip next month to Georgia to see my brother graduate from Army Basic Training. I'm so excited to see him and to get away for a few days. This will be Ryan's first BIG trip. She has been to Lake Cumberland (a few hours away) and to Gatlinburg, TN (4 hours away) This drive will be 9 hours.....yes......9!!!!!!! We are hoping to leave in the middle of the night so she can sleep most of the way. Pray that this goes well.....I can't even imagine the way this trip will go if she doesn't sleep most of the time in the car.

I don't really have much else to update on now, I've been so busy with work and everything that I feel like I dont have time for anything...and I want to spend all my free time with Ryan.

I hope everyone is doing well and I am hoping to have time this weekend to catch up on what you have all been up to!!! Below is my new favorite picture!!! I wish Ryan's smile was a little better but I still think it's great!!!

School is now in session....

2010-03-04T18:21:00.000-08:00

Yesteryday was Ryan's first day of school!!! I dropped her off at 7:30 am and when I got to the car I cried!!!! I couldn't help myself. At first she was a little hesitant, and was asking me to hold her. But I didn't give in. She walked into her classroom (for 2 year olds) and starting playing with a toy. I asked her for a goodbye kiss and hug and she gave them both to me. I left and headed for work......after my tear session in the car!!

ready for school

me and Ryan before we left

AT SCHOOL!!!!

Jay got up early so he could see her off for her big day. Once I got to work, it was killing me. I just HAD to know how she was doing. So, after only an hour of her being there, I made the first call. She was doing great. She was eating breakfast which included a pancake, a piece of sausage, and some applesauce. She gets graded on everything she does for the day and she got a 90% for eating almost all of her breakfast. They said she was doing great and didn't cry at all!!! I am so proud of her. I called again at lunch time and she was eating. She had chicken nuggets, peas and carrotts, and peaches. She only got a 70% on that. Her nurse asked her "Ryan, don't you want some peas?" Ryan then said "I don't want it.....it's gween" (green) YUP....she doesn't eat anything that's green!!

When I went to pick her up, she was happy to see me and gave me a big hug and told me she had animal crackers for a snack. The nurse told me she took almost a 2 hour long nap and didn't have any potty accidents THE WHOLE DAY!!! I picked her up at about 5:20 ( I don't get off work until 5)

My new job is also going great!!! I really like it and I stay so busy that the days go by pretty fast. The only downside to all of this.....I dont get much time with Ryan. We wake up in the morning and get ready and just walk out the door. By the time I get off work and pick her up, we have enough time to come home, cook and eat dinner, give her a bath, get clothes and everything set out for the next day, and then bed. After everything is ready for the next day, we will spend time together. Tonight I read her a couple books that she picked out from her book shelf. I'm just used to being with her ALL DAY LONG. Although I'm not as stressed as I was before (mentally and financially) I still miss her TONS!!! I know it will take time for us to get used to. Jay is even seeing her less than me. Since he doesn't work on Friday's, he is picking Ryan up early from school tomorrow. She will be so excited to see him in the afternoon.

Before I go to bed and prepare for another long day at work tomorrow, please say prayers for BABY V!!!! She is in the hospital right now with fevers and low saturations!!! GET YOUR KNEES DIRTY AND PRAY!!!! www.kargfamilyupdates.blogspot.com

It all starts next week!!

2010-02-26T05:59:00.000-08:00

As most of you know, I have been looking for employment for 7 months now.....ever since I lost my job back in July. Last Thursday, I received a call from the site operations manager of a different Oncology group than the one I had worked for in the past. She had found my resume on careerbuilder back in November and held onto it in case a position in her office opened. I had my first interview on Friday, and the second one just on Wednesday. I START ON MONDAY!!! I am so excited to finally be able to get back to work and to be free from financial stress!!! We've made it this long, but it hasn't been easy on just one income. This also means, that Ryan will be starting daycare. She has never been before so I'm VERY nervous.....however, she will be attending The Kidz Club, which is the daycare that I posted about at an earlier time. Ryan seems very excited to go back and see her friends!! She also cannot wait to see the gold fish that they have again. I think at first I am going to ease her into it and have my mom pick her up a little bit later each day for the first week. My new hours are from 8:30-5 pm. Once she gets used to it a little bit better, she will be there full time.

giving herself a shot in the leg

this is her idea of a "pose"

wow.....almost all of her hair goes up....YAY!!!

Remember the obsession with spider-man that I told you about? Well, Ryan insisted on me taking a picture of the T.V. while the movie was on and she wanted him to be on the computer also. Here he is.....swinging into action!!!! (sorry it's blurry, he's VERY FAST!!)

Spider-man, spider-man, does whatever a spider can!!!

Oh the joys in life.

Josh is doing really well in school right now which is great!!! It's nice to see him trying so hard again after a few rough patches. He wasn't feeling well at all last weekend while he was here so he layed on the couch most of the time. Starting next weekend, we will have him 3 weekends in a row which is awesome!!!

no matter how old we get, playing in the bathtub is always fun :)

I hope everyone has had a great week and that you all have a great weekend!! I'm going to try really hard to get more pics of Ryan because I haven't had many lately. I just never think to grab the camera when I really want it.

It's always worse when a "heart child" has it.....

2010-02-23T18:08:00.000-08:00

Has anyone ever told you this before? If you are the parent of a "heart child" I'm sure they have. I took Ryan to the peds office today because when she woke up this morning, her cough was TERRIBLE!!! She has had a runny nose for a couple days, and yesterday, she sounded a little congested, but this was different. She's NEVER coughed like this before. She sounded like a seal!!! Anybody know where this is going yet??

Ryan's peds office works in the way, that you never really know which doc you will see until you get there. You can always request a specific doc if you want, but to me, as long as they all really care for my child, it doesn't make a difference to me. So, at 2:30 today, Ryan saw Dr. Lacount. He listened to Ryan's chest and then heard the cough and just simply said "yup....it's croup." This really didn't surprise me because Josh also has it. UGH. Josh, however, was diagnosed about a month ago when his mom took him to the peds office. She said they gave him a steroid which ended up not working and he now is on another steroid that he takes twice a day and they have also given him an inhaler. When he was here this past weekend, his cough was still pretty bad and he was just under the weather in general. He didn't get up too many times from the couch. So there ya have it....Ryan has croup. What does this mean for a "heart kid?" It means that if Ryan's O2Sats go below 92, she should recieve oxygen. Her cardiologist needs to be made aware of that anyways because 97 is her "normal" so anything below 92 is a concern anyway. We have to carefully monitor her breathing while this nasty cough consumes her. If she seems like she is struggling to breathe (any more than normal) then he said to take her into the bathroom, turn the shower on as hot as it will go and let her breathe in the steam from the room. Once we've done that for about 5-10 minutes, if she is still having problems, take her outside. He said sometimes the fresh cold air will help open the airway. If neither of those work, she needs to go to the emergency room. He did also tell me that 95% of these "heart kids" that end up with croup, have at least one emergency room visit within a month. Dr. Lacount also said this will probably last that long. GREAT!!! It just keeps coming. They gave her Decadron before we left (a small dose of liquid steroid) and said that is all she should need. If for any reason she starts to turn blue, we need to just go straight to the ER...which I would do anyways.

This is how our day was.....how was yours??

Why blog??

2010-02-22T19:04:00.000-08:00

First of all, I have to thank Shannon Carter (www.thecarolinacarters.blogspot.com) for the idea behind this post. She too did a post like this and I thought it was great to let people know why we share our personal lives and the lives of our children with anybody who wants to read.

So, WHY BLOG? Why put my life on the internet and the life of my daughter?

ONE WORD FOR YOU....... HOPE!!!

I blog to spread hope. To let other's know that they are not alone. To educate someone on the effects of CHD's and what it REALLY does to people. Not everybody know about CHD. I didn't know anything about it until Ryan was diagnosed when she was a month old. Since then, I have learned more than I could ever imagine!!! The most important thing that I have learned, is that I am not alone on this lifelong journey with my precious baby girl!! Other's feel the way that I feel and have good days and bad just like me. This is why I blog.....what about you?

Onto Ryan's appointment today. We got to the hospital 15 minutes early as it is always requested. We got Ryan checked in to see ENT and we sat......and sat.....and sat some more. We now fully understand why it's called a WAITING ROOM!!!! UGH!!!! ok..sorry about that...pent up anger!! So, after about 30 minutes, we FINALLY got called back. After we got into the room, the nurse asked if we had any issues with the tubes in Ryan's ears so far and then she said Dr. Myer would be right in. As soon as she left, Ryan told us she needed to go potty. I took her down the hall, and on my way back, I passed Dr. Myer in the hallway and he smiled and said he would be right in. Today's definition of "RIGHT IN: I will get to you whenever I have a free minute LITERALLY......ONE MINUTE and that means I will come into the room to see your daughter in about a half an hour!!!" eeeks.....more anger coming out.

There you have it. We waited ANOTHER 33 minutes to be exact for Dr. Myer to come in...meanwhile, Ryan went potty twice during that time...she is doing SO GREAT!!!

Anyways.....onto what was discussed. Ryan of course, screamed her head off as soon as the doc came into the room. He looked in her ears, which required us holding her down, and said everything looked great!! The tubes are still in placing and doing their job. When he looked in her throat, a different story. He said her tonsils are moderatly larger than they should be. Not average, not HUGE, but too big for her throat. He does believe this is what is causing her to snore and stop breathing several times during her sleep. (she does this during naps and at night) He said he DOES want us to speak with pulmonary medicine about them doing the sleep study. This means, we have to do a consultation, then schedule a night to stay at the hospital. We have to arrive at about 6 pm and then hopefully have Ryan asleep by 11. I'm not sure how it's going to go since she will have stickers ALL over her body. Her head, ears, face, arms, chest, legs AND feet. RIGHT....ALL OVER!!!! I am going to try to make it as pleasant as possible. With her recently found LOVE for spider-man, I'm hoping to get her excited about it by telling her we are going to have a popcorn and movie party at the hospital with stickers?? I hope it works. I spoke to pulmonary medicine today and they said it will take 4-6 weeks to even get the consult. Ryan is scheduled to see Dr. Myer again in 4 months. So to recap the check ups, cardiology is on June 7th and ENT is on June 26, and then a sleep study before all that. GRRRR......it is all very frustrating!!! I hope this whole ordeal with the sleep study is worth it. I really don't want her to have to go through anything else, but it's one of those things, where you don't wanna go through all the trouble of the study for nothing....does that make sense?

Potty training update

2010-02-17T18:30:00.000-08:00

I'm sure some of you have been wondering how Ryan's potty training has been going. Well, it's been AMAZING!!! She is doing such a great job and is such a big girl. Today was her 4th day in big girl panties and, just like yesterday, she only had ONE accident!!! She get's so excited when she goes on the toilet and she starts clapping and yelling!! I'm so glad to get the diaper thing over with. She is still wearing diapers for nap and bed time though. For the past 2 days, after nap, both diapers have been completely dry. Her diaper this morning, which she wore to bed all night, was only a tiny bit wet. I cannot believe how well this whole thing is going and I couldn't be more proud of her. She is just so awesome!!!!

One thing that is NOT so awesome is the amount of snow we got this week. It all started Sunday night and it didn't stop really until this morning. We had a few breaks here and there but that was it. We are even expecting some flurries overnight tonight as well as some ice. I am so sick of this weather and cannot wait until it gets warm again!!!

our deck....at one point in the middle there is 2 1/2 feet...YIKES!!

I want to say thank you to all those who prayed yesterday and today for my family. My previous post was about my cousin's son and he is doing well. He was actually released from the hospital last night and is getting some follow up care. I am sorry for not going into more detail about what is going on but it is a private matter. But thank you all again, SO MUCH!!!

Ryan has her follow up appointment on Monday with Dr. Myer. He is the ear, nose and throat doc. He will check her ears to make sure the tubes are still looking good and doing what they should be doing. She will also be getting a hearing test done. Since her ears were so infected and for so long, he wants to make sure it did not cause any long term hearing damage. She doesn't listen very well but I don't know if it's because she cannot hear or because she just chooses not to. HAHA. Either way, please hope and pray that her hearing is not damaged and that she just doesn't want to listen to us. :)

Dressed in Jay's boots, hat and gloves

We have a new obsession going on in the house also. It used to be dogs, then spiders, then Dora, then Sponge-bob AND NOW.......SPIDER MAN!!!! You would think that we have a boy with how much she talks about her beloved spider man. She says "spider-man does this...." and she sticks her hand out really fast and makes the noise like when his web shoots from wrist. TOO FUNNY!!! Every day she wants to watch him and she gets MAD if she can't. She also has tried to climb the walls a few times but soon realizes it's not as easy as he makes it look.

just got done going potty!! YAY!!!

I hope everyone is having a great week!!! If I don't update before Monday I will let everyone know how Ryan's follow up appointment goes. Jay and I are both not feeling well so I'm not sure how much energy I'm going to have for anything, especially with running around with Ry all day. :)

In need of URGENT PRAYERS!!!!

2010-02-16T18:36:00.001-08:00

I would so greatly appreciate it if everyone could please pray for my cousin, Kate's son. He is at Cincinnati Children's Hospital right now and we're not sure if he is coming home tonight or not. I cannot disclose why he is there but please just pray for him and his mom!!!! They are SO CLOSE to us and we are very worried. Please say prayers for them all!!!! THANK YOU SO MUCH!!!

The new Kidz club.....

2010-02-14T18:31:00.000-08:00

A friend of mine from high school's mom got a hold of me on face book and sent me a message that amazed me. She told me that she is a nurse at a daycare that has a new location in my area. The day care just opened on December 21, 2009. The name of the place is The Kidz Club. I was so excited when she told me about this place because it is different than most. This particular daycare is for medically fragile children. The staff consists of RN's and medical assistants. They accept kids with all sorts of medical needs. The web site is www.thekidzclub.cc if you would like to check it out. I just loved the fact that they opened a place like this. Instead of sending your child to just any daycare, you can feel better about it because your child is in the hands of certified health care providers. I am going to stop by one day this week and take a tour of the facility. I would love for Ryan to be able to get involved with other children and just get a taste of what "school" is like. The other great thing about it is the fact that the facility takes insurance. Your child's health insurance dictates how much the fee's are. I thought I would share this info because it is HEART DAY!!!! It's so great to see that other people think about parents needs as well as kids when you have a different life. I will keep everyone posted on how the tour goes. I'm not sure when it will be because we are supposed to have 6-8 more inches of snow by tomorrow.

OTHER NEWS!!!!! I am so excited to say that potty training is OFFICIALLY UNDERWAY!!! We put big girl panties on Ryan at about noon today and she did AMAZING! She had a few minor accidents and that was IT!! At one point today she looked at Jay and said "daddy, I poo-pooed." He took her back to the restroom and sure enought, poo-poo in the panties. He put her on the potty though and she finished her business there. Another time she barely tinkled in her panties and then she realized what she was doing so she stopped and held it until she was on the potty. I'm so excited to get this going and am so proud of her for doing such a great job!!! I will keep you all posted on this too!!! Hopefully I will have some good pics with my next update!! HAPPY VALENTINE'S DAY TO EVERYONE.......BUT MORE IMPORTANT....HAPPY HEART DAY!!!!!

A good ole' Kentucky blizzard...

2010-02-09T16:11:00.000-08:00

For those of you that are not familiar with the Northern Kentucky area, several INCHES of snow is a lot for us. Typically, we get a few inches and then it melts, and then we get a few more. This past weekend, we got about 4-5 inches. On Sunday, we heard on the weather update at our local news station that the snow would start last night at midnight and not stop until Wednesday afternoon. The entire tri-state area is on a winter storm watch until then.

Starting last night just before midnight and going through today, we now have about a foot of snow on the ground in most spots. It has only stopped snowing today for about an hour and we are expected to have another 3-6 inches by tomorrow. This is A LOT of snow for us to have all at once. Why not have some fun???

Ryan and me on the 4-wheeler (with a plow on the front)

Ryan in the snow. She could barely walk in it. HA

Daddy having a "heart-to-heart" with Ryan about eating snow

We had tons of fun in the snow today and we were outside for about 2 hours straight!!! It was cold but very fun. Ryan doesn't like coming back in at all!!! Jay was home today because since he works 2nd shift, they closed down early at his work so he didn't have to go in. MORE FUN FOR US!!! Tomorrow, he will probably have to go in but I'm sure at least me and Ryan will be back in the snow. She just loves it SO MUCH!!! I hope everyone is having a good week so far!! It's movie time for the family.

CHD Awareness Week....

2010-02-08T06:34:00.000-08:00

In honor of CHD awareness week (February 7-14 2010) let's talk about what CHD really means.

Having a baby is the best time in any family's life. But, what happens when that precious baby that you have is born with a heart defect?

Ryan Sue Sweeney 8 lbs. 7.4 oz. 20 inches

This means that your life is turned upside down. A huge amount of emotions go through your mind all at once, and you're left wondering what to do next. Will my baby live? Will my baby die? What exactly does this mean for my child?

It means life will be drastically DIFFERENT.

LIFE will turn upside down and everything changes. Having a CHD child means having a "new normal."

Ryan and mommy (almost 5 months old)

CHD means family coming together in serious times of need to be there for eachother as your child grows and thrives.

Ryan-8 months

Having a child with a heart defect affects the whole family. Parents, siblings, grandparents, etc. Everyone travels on this journey TOGETHER.

Ryan and her "Bubba"-10 months old

Having a child with heart disease means wondering if birthday's will come? Every birthday that comes is a HUGE celebration. The feeling of your child making it another year is unlike any other feeling.

Ryan's first birthday!!

The "new normal" becomes hospital visits and stays. It often involves wondering when your child's next surgery will be instead of when they will walk or ride a bike.

Ryan and mommy-before consultation for first surgery

Hospitals become your new home away from home. And some kids, spend more time in a hospital bed then their own bed at home.

Ryan-January 9, 2009-cardiac cath and balloon dilation

Having a child with heart disease, means surgical procedures not going as planned. It means more invasive things are to come. It means your child going through things you NEVER wanted for them or for yourself.

It means family time becomes more special than ever.

Ryan and Jay (daddy)-Summer 2009

Being the mother of a CHD child has changed my life FOREVER. I have support from people that I've never even met. I never knew anything about this disease until my daughter was diagnosed at one month of age. I've never been so grateful in my life. Every day with Ryan is more special than the last. She is my LIFE. She is my CHD SURVIVOR!!!

Ryan swinging at the park-Summer 2009

Ryan's 2nd birthday-December 13, 2009

SO happy to see this!!!! HAD TO SHARE!!

2010-02-02T16:37:00.000-08:00

Before I get started on what this post title is all about, I wanted to just share a couple new pics.

she is trying to get undressed but when she goes for the shirt, she always gets it stuck....she will learn eventually!!! :)

my cutie patootie sleeping on the couch. too cute!!

Ok....here it goes. I got the February issue of American Baby magazine in the mail today. I have no idea why I even get these magazines because I never signed up for it, but it got delivered. Of course, I flipped through it and when I came to page 22 in the BABY Health section, I was floored!!! It's not a big article, but THERE IS AN ARTICLE ABOUT CHD's!! WOW!!! This is amazing news because we all know that there is really not much talk about it. The article also mentions Cincinnati Children's Hospital. Here is the article:

Heart Smarts:

Each year, 36,000 babies are born with heart defects. But even kids with healthy hearts can develop cardiovascular disease later on. Keep your baby healthy with these tips from Elaine Urbina, MD, director of preventive cardiology at Cincinnati Children's Hospital. It's the ultimate Valentine!!

Limit daily juice intake: Give no more than 4 ounces of 100% juice.

Serve toddler size portions: This means about a quarter of the adult version. Good examples: a half-slice of bread, 1/4 cup of cereal, 1 oz. of meat or cheese, and half an egg.

Turn off the T.V: Instead, encourage 20 to 60 minutes of daily active play.

Don't light up: Harmful toxins can linger on clothes and skin.

Talk to your pediatrician: Let them know if you, your spouse, or any of your parents had an early heart attack or stroke (at or before age 55 for men; 60 for women). Your doctor may also recommend that your child drink low-fat milk rather than whole milk.

I know this article is geared towards people whose kids do not have heart disease but I still thought it was important to share this information. It was also nice to even see the words "heart defects" in the mag. This could be the start of more info to come and it could also be the start of more information being shared with the world about this horrible disease that is responsible for taking the lives of so many innocent children. Please pass this information on to anyone that you think could benefit from it. Thank you!!!!

2010-02-01T16:53:00.000-08:00

Hello everyone!!!! I just wanted to let everyone know that we OBVIOUSLY have a make over on the page, but that we have a new button as well. Grab it for your blog!!!

I wanted to share a picture that Ryan drew also. Jay was drawing hearts for her and then he handed her the pen, and this is what she came up with.....I'm SO PROUD!!! It actually looks really good given the fact that she is only 2!!! LOL

I hope everyone is having a good week so far even though it's only Monday.

Please keep Logan Jack's in your prayers!!! He had surgery 2 weeks ago and now, for no known reason, is having high fevers!! Visit his page at www.whenlifehandsyouabrokenheart.blogspot.com

Our prayers are always with you Stef, Ryan, Wyatt and Logan!!!

Another hospital stay coming our way??

2010-02-01T07:50:00.000-08:00

Wow, I feel like it's been FOREVER since my last post. Sorry about that, I've been a little busy. My dad had surgery this past Thursday to have his gallbladder removed so I spent the day at the hospital with him, and then he stayed with us that night since he wasn't able to drive. He is doing well and will be able to return to work next week.

Ryan has been up to no good lately. As usual right?? YUP. I unloaded the dishwasher the other day, then went to start a load of laundry. When I came back upstairs to load the dishes into the washer, this is what I found.....

LOOK....there's a baby white tiger in the dishwasher!!! WOW!!

I asked Ryan why her tiger (whose name is Kitty Cat....ORIGINAL!!!) was in the dishwasher and she just shrugged her shoulders and RAN RAN RAN!!! She thought she was in trouble. As long as the dishwasher didn't run through a cycle with Ryan's beloved kitty cat, it's no big deal.

little ms. guilty face running away from me!!

When Ryan had gone to get her tubes put in her ears, Dr. Myer, had asked me if Ryan snores when she sleeps. YES, she does. He then asked me if Ryan stops breathing in her sleep or if it seems like she has breath holding spells in her sleep? YES, she does. He asked if she has ever had a sleep study done? NO, and why is this necessary?? Dr. Myer suggested that Ryan get a sleep study done to test for apnia. From the way he made it sound, he things it's tonsil related, not heart related, HOWEVER, if she is having trouble breahing in her sleep, not matter what the cause, it isn't good for her "cardiac status." Ryan's peds office sent a referral form to pulmonary medicine in the hospital for the sleep study. I called and spoke with them, and for the study, they want at least 6 hours of sleep from Ryan. That is next to impossible for her. She only sleeps in her bed, or sometimes will fall asleep in the car or on the couch. I really don't think they will be able to get 6 hours out of her. Ryan is scheduled to go back to CCHMC on the 22nd for a follow up with Dr. Myer from her tube surgery. One we are there, I am going to discuss it further with him and find out if the study is really necessary or if he would consider just taking her tonsils out. I'm not sure where that conversation will end up, but I will keep you all posted.

Please say a prayer for the family off Jeffrey Fite today. It was one year ago today that Jeffrey was in the car accident that changed his and his family's life FOREVER. Jeffrey was driving and slipped on some black ice. His dad and my dad used to work together and are pretty good friends. That is how I came to know Jeffrey. Please stop by his carepage and drop off some prayers. The link is on the right side of this blog under carepages family. I'm sure today is not an easy day for any of them. Thank you and I hope everyone has a good week!!!

The nurses almost panicked...

2010-01-26T08:04:00.000-08:00

On Wednesday of last week, I took Ryan to the peds office to get her physial. Everything checked out just fine and she has actually grown a half an inch in a month. WOO-HOO!!! She is now 34.5 inches tall!! Almost to that 3 feet mark. The doctor said Ryan is growing nicely and she was cleared for her surgery on Friday. As I said before, we were not concerned about the ear tubes going on, we were worried about her having trouble with the gas again that would be used to sedate her.

at the peds office for physical

We got to the hospital at 10:15 on Friday morning and Ryan was already nervous. All she has to do is see the hospital in her view and the whining begins. Once we got upstairs to same day surgery, child life came by and gave Ryan some toys to play with, and also gave her a baby doll. Ryan refused to put her gown on so we got an extra one to put on her baby....it didn't help. She still wanted nothing to do with it. We also had an extra mask from the gas machine in the room and I kept putting it up to my face to make her realize there was nothing to be afraid of. That too, didn't help. The nurses asked us several questions just to make sure they had all of Ryan's medical history. I told the nurses and the doc about her having trouble coming out of the sedation with gas when she had her cardiac cath done last year. They appreciated the warning!!! Although Ryan's surgery wasn't scheduled until 11:45, they were able to get her back about a half hour early....YAY!!

the nurses were blowing bubbles to try to make her happy...this actually worked

We decided after a lot of consideration that we would go back with Ryan while she was put to sleep. I have been warned not do this in the past, but I thought it would probably be more comfortable for her. I really think she remembered having her balloon done because as soon as the OR doors opened, and she saw the medical team, the meltdown began. They closed the doors to make her feel better and she wasn't able to see them anymore. We were in a VERY small room where she was put to sleep. I held her in my lap while they held the mask on her face....not fun. I felt so bad because she just stared at me the whole time. The nurses warned me about how her breathing would change once she was asleep.....but OH LORD...it was SO SCARY!!! She honestly sounded like she was struggling to breathe. I knew she was ok, but it sounded pretty bad.

asleep on the bed, ready for surgery

We walked back to the waiting room, and it really was only about 15 minutes that went by until we got called back into a meeting room. Dr. Myer said surgery was done, and that they were waking Ryan up and we could go back to the PACU (post anesthesia care unit) in about 5 minutes. Well, we found it pretty odd that 30 minutes went by and the EPIC sreen in the waiting area, said that Ryan was still in the OR. We finally got called into PACU and asked what took so long. The nurse told me that if I hadn't warned her about Ryan having trouble with gas, they would have PANICKED. It took them 30 minutes to wake her up, after she was only under for 15 minutes?? The nurse seemed concerned, but once she was awake, she was acting pretty good. She wanted to eat and drink and walk. She got down and walked with me holding her hand and was doing really well. Everyone was very impressed at how well she was doing after it took so long to wake up. We went over the discharge instructions and we got to leave about an hour after she woke up. THANK GOD, because she was getting CRANKY!!! The affects of the gas were not bad the rest of the day....it all went pretty smoothly. So, the tubes are in, she is now done with her ear drops that she needed, and we are good to go. Dr. Myer did have to suck a pretty decent amount of infected fluid out of both ears first, but at least it's all out now. He said he is surprised with how bad her ears were that she was able to hear anything. She is scheduled to go back to see him on February 22nd for a post-op follow up.

back to normal once again!!

On to some Q&A:

I have received some emails with some questions....I will not say who they are from because if they wanted everyone to know, they probably would have posted them on the comment section of the blog instead of sending a private email.

1. Since you live in KY, has Ryan ever been taken to St. Jude Children's Hospital?

The answer to this is NO. Memphis, TN is not exactly right around the corner. We live 10 miles south of Cincinnati, OH. So, we are located in the VERY northern tip of Kentucky, not from the south. The other reason is, St. Jude's focuses more on pediatric cancer. I'm not sure if they have a cardiac unit or not. I have never looked into it. We are very confident in the doctors that she has at Cincinnati Children's.

2. Do you know how lucky you are to have a heart kid that likes to eat?

YES YES YES!!!! As most of you know, a lot of heart babies have a problem getting enough calories. Ryan has PLENTY!! In fact, she was always off the charts for her weight until she was a year old. At that point, she was still in 95th percentile. Now, she is in the 80th percentile. She doesn't eat near as much now as she did when she was a baby. When she was a baby, she wanted that bottle and baby food ALL the TIME!!! We didn't let her have it whenever she wanted, but she was VERY CHUNKY!!!

Ryan at 5 months old...check out the arm rolls

3. Did Ryan have any symptoms of heart disease when she was born?

Ryan was born with a blueness to her lips and nail beds, however, when we asked the nurses and docs about it at the hospital, they told us that because her head was in the birth canal for so long and I had such a long labor (17 hours) and Ryan was taken via c-section, she could have had a lack in oxygen. We didn't question it anymore because by that night, it was gone. It may have been cyanosis, but there is no way to know for sure now. We are just thankful that the doctor's found out about Ryan's heart when they did.

4. How old was Ryan when she was diagnosed?

Ryan was diagnosed at just under 1 month with her CHD.

5. Do I think I will have more kids and if so, are they at risk for CHD?

I will probably not have any more children. I would like to have a boy one day, but I'm not sure that will happen. CHD's are not genetic as far as we know, so another child would probably not be at higher risk for heart disease, however if I did have another baby, I would get tests done while pregnant to find out if the baby was ok.....I would rather know ahead of time, then get another surprise diagnoses.

That is all the Q&A that I have for now, but feel free to ask more!! I have no problem at all answering any questions about Ryan. Thank you for all the support once again for Ryan!! It is very much appreciated!! We are so blessed to have so many people in our lives that care so much!!! I have a pretty busy weekend ahead of me so I'm not sure when I will post again, but I hope everyone has a great week!!

Surgery Day and Q&A

2010-01-22T05:16:00.000-08:00

We will be leaving in about an hour to head over to the hospital for Ryan's ear surgery. I will keep everyone posted later today on how things went. Hopefully, she will be able to sleep when we get home. Also, I have been getting more emails with questions about Ryan and a few other things so I will post some Q&A as well. I hope everyone has a good day!! Wish us luck and please pray that Ryan wakes up from the gas with no problems unlike last time. That was scary!!! Thanks for all the support.

You obviously don't know Ryan

2010-01-20T06:06:00.000-08:00

Yesterday morning we left the house at about 9:00 am to make the 20-30 minutes trip up to Ohio to visit the ear, nose and throat specialist, Dr. Charles Myer. Once we got to Children's, Ryan had a feeling something bad was going to happen. Don't you hate that?? These kids just see a hospital or doctor's office and know something is up and they know they don't like it. We walked over to the C building and got on the elevator and went to the 2nd floor. Cardiology is on the 4th floor so it was a nice break to hit the "2" button on the elevator wall. Ryan was being very friendly to everyone on the elevator, as usual. She said Hi to everyone and then talked about the doctor that was going to "get my ears." HAHA. She hears what she wants to hear, because I told her the doctor was just going to look in them....not get them. :)

Once we got to Otalaryngology, the wait wasn't that bad but Ryan got nervous when her name was called. The nurse said she would give Ryan a sticker if she walked back like a big girl....so Ryan started running really fast to get to them. Once in the back, the nurse asked me several questions about Ryan....you know, the normal routine things. Dr. Myer came in and said he needed to LOOK in Ryan's ears. He also asked me a few questions, and then came the time to hold her down. She FLIPS OUT anytime anybody tries to look in her ears so I knew it was coming. I sat in the chair with Ryan in my lap facing away from me. I had to literally wrap my legs around hers, and then bear hug her from behind to hold her arms down. Dr. Myer held her head to look in her ears, and with all of that, Ryan still wiggled free!!! She's SO STRONG!!! It really amazes me how physically strong she is. Once we were done with wrestling the beast, the doctor told me what the deal is with Ry.

showing her HUGE muscles!!

Dr. Myer filled me in that Ryan's ears are both severly infected. His exact words to me were "after 35 days of 4 different medications, I cannot believe how bad her ears look." GREAT.....so what can we do about it?!?!?! When she had her last infection like this back in May, he said all of the fluid probably didn't clear up completely. Meaning, she has most likely had a minor infection in both ears for almost a year. He said he's surprised she can hear anything that anybody tells her. OH NO!!! At this point, I was highly concerned about the future of her hearing. Dr. Myer assured me that he feels very strongly that she will have no long term damage to her hearing. We will not know for sure until she gets another hearing test, which will not be until after her tubes are placed, and then fall out, which can be around 6-12 months. Ryan's peds office typically refer's patients that need tubes to the Head and Neck Associates in Ky, but with Ryan's heart issues, I always feel more comfortable if she is seen at the hospital because they have her records and know everything going on with her. Dr. Myer told me I made the best decision with that, because the Head and Neck Associates wouldn't have touched her due to her "cardiac status." POINT FOR MOMMY!!! haha. I know that when she is at the hospital, she is in good hands. I really do trust all of their staff. They are all amazing people.

Surgery info is as follows. Ryan is scheduled for the surgery this Friday at 4:30 pm. We have to arrive at CCHMC at 3:00 pm. I'm sure most of you know the food/drink regulations that go with anesthesia. NOTHING to eat or drink AT ALL for 4 hours prior to surgery, and for the 4 hours before that, ONLY clear liquids. She can have jell-o, applesauce and popsicles. Those are the only semi-solid foods. I didn't really have a choice as far as surgery date and time. It was either take the appointment this Friday at 4:30 or wait a month....which the doctor STRONGLY advised NOT to do. The nurses and Dr. Myer both assured me that Ryan would be fine, just let her eat as much of those things as she wants so she gets nice and full since she will have to go 4 hours without anything. Really?? You think she'll be fine?? YOU OBVIOUSLY DON'T KNOW RYAN!!! :) Ryan is the queen of eating. SERIOUSLY. She really doesn't eat near as much as she used to, but for her to not eat or drink for 4 hours is going to be TERRIBLE. I'm hoping I can get her to take a nice long nap so at least we will have some time where she won't care about her throat being dry or tummy being empty. UGH!!! The procedure itself, only takes about 15-20 minutes. Before they make the incisions in her ear drums, they are going to vacuum out the infected fluid that has been taking up residence in Ryan's ears for so long. Once that is done, surgery will begin. After she wakes up, we will remain at the hospital for about another hour or so. When Ryan was given the "gas" for her cardiac cath, she had a hard time waking up from the anesthesia and they said it will probably be the same this time around. She is not given the "gas" for her echo's, that is something different. Her discharge time from the hospital really depends on how well she wakes up. We will be there until at least 6 pm. It's going to be a L-O-N-G day!!

UPDATE: I just received 2 calls within 20 minutes of eachother from the hospital. Both to tell me that there have been cancellations on the surgery schedule. Ryan's surgery has now been pushed up to 11:45 am!!!! This is amazing news. Now, she will not have to wait as long to eat or drink which is great for all of us. Maybe they will call me tomorrow to make it even earlier!! HA.

Such a beautiful princess!!! (don't mind the messy hair :)

I have an idea that I would like everyone to do. We always are telling the stories of our kids being at the hospital, so I'm curious to know what your child's hospital looks like. I was not able to find an actual photo of the entire hospital online that we have here, but I found sort of a blue print photo. I will try to remember to take a picture Friday. The picture below is an overview of Cincinnati Children's Hospital Medical Center (CCHMC) or as us "locals" say....."Children's Hospital."

Our hospital is divided into concourses. Sort of like an airport. The main concourses where the different divisions are, are labeled as A, B, C, and D. Ryan's consultation yesterday was on C2 (concourse C, 2nd floor.) Her surgery will be on B3. Cardiology clinic is on C4 but her cardiac cath was done on A4. It can be a bit confusing, but once your there all the time like us, you get it down pretty quick. On your next update, include a picture of your hospital. I'm interested in seeing how different they look since we all live in such different areas. Next time, I will also try to include some pics of our town. Do the same, that way we can see the area where eachother lives.

Please say prayers for Ryan's surgery on Friday. Although it's nothing major, it is always a concern when she is sedated, especially with gas. Also, continue to pray for Logan Jacks and Derrick Carter. Thanks for all the support!!!

Logan's page: www.whenlifehandsyouabrokenheart.blogspot.com

Derrick's page: www.carolinacarters.blogspot.com

This is getting ridiculous...

2010-01-18T05:53:00.000-08:00

I'm sure many of you are probably wondering what it is that I feel is so RIDICULOUS. I promise I will get to that but first, prayers are needed.

Logan Jack's received another open heart surgery on Thursday and is still recovering in the hospital. The doctors see now that he has an effusion (thanks to his parents paying close attention to Logan's symptoms!! GREAT JOB STEF AND RYAN!!!) This may extend Logan's hospital stay to an extra 3-4 days. Please pray that he gets better and also say some prayers that his big brother Wyatt is doing well in school despite the constant worries of his little brother. They have a special bond with eachother so I'm sure he's very concerned. My thoughts and prayers are with you Stef, Ryan, Wyatt and Logan....get better soon!!! If you would like to stop by Logan's blog page to give them some words of encouragement, or just to let them know you're thinking about them, the site is www.whenlifehandsyouabrokenheart.blogspot.com

Derrick Carter is also having surgery, but his is today. Derrick is a very special little guy and he's ADORABLE as well!!! We are sending our thoughts and prayers to you all as well and hoping that D's surgery is a success and that he recovers quickly!! To visit Derrick's page, please go to www.carolinacarters.blogspot.com and leave them a message. Good Luck baby D and we are thinking about you today!!!

So, onto this ridiculousness I was speaking off earlier......Ryan is sick AGAIN!!! I'm so irritated about this whole situation I feel like ripping my hair out. She was on 4 different meds for a grand total of 35 days. Once on each med for about 3 days, she seemed great. No more cough or runny nose or anything. Her last medication ended just 2 days ago, and last night, the runny nose started. She woke up this morning with the runny nose continuing and she is having trouble breathing. I am not going to bother taking her back to the peds office just yet because she is scheduled with the ear, nose and throat specialist tomorrow morning up at the hospital. I am hoping and praying that he will schedule her to have tubes put in her ears so I can stop having to take her to the peds and we can keep her off the antibiotics. This is her 2nd ear infection since May but both of them lasted a month or more. The last one caused her to be on meds for 30 days, and this one, 35 days. I hope the doctor makes the right decision. I will keep everyone posted as to if/when Ryan will be scheduled for surgery. Thanks for the support!!! It's time to watch "Happy Feet" again, so I gotta run!!! :)

The missing pictures!!!

2010-01-10T17:57:00.000-08:00

I'm excited to say that my brother is here visiting!!! He flew home from Pheonix on Friday and is staying until Thursday. He is leaving for basic training for the Army on February 1st so its great to spend time with him before he goes. I'm on his laptop now in order to load a few pics from Ryan's birthday and from Christmas so everyone can see the fun. My brothers name is Robert but goes by Bob and Ryan calls him Uncle SpongeBob. HAHA. So, thanks to Uncle SpongeBob, we get to share pictures. I will try to update again asap but not sure when that will be. Just real quick though, Ryan is now on her 4th antibiotic so once she's done with it on the 16th, that will total 35 days of meds for her ear infections. POOR GIRL!!! I will try to update before her appointment at the hospital with the ear, nose, and throat doc but don't know if I will be able to. So, here are the pics....ENJOY!!

My dad, Joe, my brother, me and Ryan

Happy Birthday Ryan!!!

first time sledding...with daddy.

wee.....

loving the snow

cheeeese!!!!

new hoodie for Christmas.

wow.....a Dora kareoke machine!! Thanks Grandpa!!!

feeding her baby in the baby's new high chair!! Santa sure knows what to do!!!

look at all this stuff

Bubba and Sissy

listening to her baby's heart...so precious but sad that she knew just what to do.

opening more presents.

Dora and Boots cupcakes!!

getting ready to blow out the candle.....so much fun!!

cutest thing ever.....this dog says her name and all the things she likes!!!

sorry the pics are so scattered as far as their order. I am trying to get this done to spend more time with my brother!!! Hope you liked them!! There was, of course many more photos taken, but it would have taken DAYS to put them all on here. Until next time....I hope all of our followers are doing well.....and I promise I will get caught up soon with everyone else's blogs...I KNOW I'M A SLACKER!!!! SORRY!!!

Celebrations and a major tragedy

2010-01-04T14:24:00.000-08:00

Ok so I admit....it's been WAY TO LONG!! Our computer bit the BIG one and wasn't working. I am on it now, but am not able to get my pics on it. So, unfortunately I am not able to share any of Ryan's birthday photos, or pics from Christmas. I hope everyone had a VERY MERRY CHRISTMAS and a WONDERFUL NEW YEAR!!!

Ryan's birthday parties went great! Her favorite gift BY FAR is the Dora the Explorer backpack she received from my aunt, as well as the tea set she got from my dad (her pee-paw as she calls him.) She says that the tea cups are for FOFFEE (coffee) She is too funny. She also got a lot of clothes which were very much needed. A week before Ryan's party I had taken her to the doctor and she was diagnosed with a left ear infection and that's when she was put on Augmentin for 10 days. On the 14th, I took her back for her 2 year check up. A resident came in to do the exam and said her ear looked better. Once her meds were done, she got worse. She had a nasty cough and her nose wouldn't stop running. I took her back again and the doctor looked in her left ear and told me the resident was wrong. It was worse. Ryan was then put on Omnicef for 10 days. The ped was SURE it would take care of it this time. This past Wednesday, we were back AGAIN!!! They had told me to bring her back on January 21st to see if the infection was gone from the second meds. I'm glad I followed my intuition and didn't wait. When a different ped looked in her ears on Wed. she noticed that now BOTH ears were filled with a bunch of yucky fluid. I knew something was up because her cough and runny nose just wouldn't get better. So, after 20 days of 2 different medications, her ears were worse. This same thing happened to her back in May, where she was on 3 different meds and it finally went away. Therefore, the peds sent a referral up to the hospital. Ryan now has an appointment there on January 19th to see Dr. Myer who is an ear, nose, and throat specialist. I was really looking forward to not being back at the hospital until June, but that's just not going to happen.

Before I get to the tragedy that took place here, I will just quickly say that Christmas and New Year were great for us. We loved spending time with our family and feel so blessed to have them in our lives. Especially after what occurred just before Christmas.

When Josh played baseball last year, he played for a team called "Hustle." His assistant coach's name was Tony Campbell. He had been Josh's assistant coach for 3 years and his step son Devin played for the same team. Tony's wife, Emily, and myself were pregnant at the same time. She gave birth to their son, Ryker, on December 1, 2007. On Sunday, the 13th (Ryan's birthday) Ryker had a party for his birthday as well. The only thing missing, was his dad, Tony. Tony was deployed to Afghanistan in September while serving in the Armed Forces. On Monday, the 14th, Tony called home to speak to his family, and Ryker surprised him by counting to 10 on the phone, and he then said "I love you Daddy." Emily, Devin, Ryker and Jordan (Tony's 7 year old daughter by a previous marriage) had no idea that would be the last time they would talk to him. Sadly, early Tuesday morning, December 15th, Tony was killed while serving our country. His job overseas was to disarm roadside bombs. There was one that detonated and he was nearby. He was only 35 years old. On Tuesday, December 22nd, Tony was laid to rest in Williamstown, Ky at the veterans cemetary. He was also a Cincinnati Police Officer which was his dream job that he had fulfilled just last year. Even though you may not know them, please just say a prayer for his entire family. They are all wonderful people. Emily will now be raising the 3 kids without her best friend and Husband. Although she has many close friends and family and we are doing everything we can to help, it is nothing like having your life partner there with you. Tony will surely be missed and he was a very brave man. Once again, I remind you....never take anything for granted. Life is too short to sweat the small stuff. Live your life to it's fullest. It was amazing to see the amount of people that showed up to the funeral to show their support. Service men and woman lined the church to pay their respects, along with police officer's from all over. It was amazing to see and nobody deserved it more. He fought hard for this country and after his death, Emily received Tony's awards of The purple heart, a combat star and a medal of honor.

Please take a moment to remember all of our fallen soldiers, and those who are still fighting for us all.

One of the newest soldiers to join the U.S. Army is my brother. He is beginning his basic training on February 2nd at Ft. Benning in GA. He is flying home to see us (from Arizona) this Friday. I cannot wait to see him!! He has not seen Ryan in person Since August of 2008. I will try to post again soon and have pictures of everything going on lately. ENJOY YOUR WEEK!!

2 years ago.....Sunday???

2009-12-08T15:26:00.000-08:00

So, as most of you already know, my little princess will be 2 years old on Sunday. We have so much going on between now and then that I decided I will give my birthday tribute to Ryan now....what's a few days going to hurt?? We are having 2 birthday parties this weekend for Ryan to split up the amount of people. I know it sounds crazy but I'd rather do that then try to fit everyone in my house at one time. That would equal out to be almost 60 people. Last year for her first birthday, we had 65 people but we had rented out a clubhouse to the condo that my uncle owns. That was a lifesaver.

Ryan's medicine is doing it's just it seems because she is looking much better. Her 2 year well check up is Monday so we will see if the left ear infection is clearing up. The skin infection looks much better and with the help of our good friend Mr. Neosporin, the scab on her nose is almost gone now!! Her nose is also not running as bad as before. YAY for Ryan!!

So, here we go!!!

On December 11, 2007 I went to my last doctor's appointment as a pregnant woman. My due date was actually on the 10th but those are never accurate anyways. :) I had received a second ultra sound 2 weeks prior to get an estimated fetal weight because I had gained 65 lbs. They knew I had a big baby in there and needed to get an idea of what they were working with. At that appointment, the doctor told me that I was getting induced and told me to check myself into the hospital that evening at 6 pm. I was also informed that I should eat a really good meal before hand because once in labor, all bets were off. And, most of you know that you DO NOT tell a woman that is 9 months pregnant that she cannot eat!! That's just wrong on so many levels. haha. My mom treated Jay and I to Olive Garden that night and when we left, we went straight to the hospital. I was so nervous and anxious and just couldn't wait to meet my sweet little girl. I was just dying inside to see what she looked like!! When we got to the hospital, we settled in and just waited...and waited.....and waited.

At 8 am the next morning, December 12th, I was started on the I.V. drip to induce my labor. At 9 am I was considered to be in active labor. I remember thinking "wow...that was FAST!!!" My contractions were very strong and I was in a lot of pain, but I wasn't dialating. At noon, the doctor's broke my water for me to see if I would progress any. I received my epidural around 6pm and then we waited some more. I didn't know what was taking so long but I didn't like it. I was so miserable. Finally, at 1:00 am...yes....the NEXT morning, I had just hit 9 cm. The doctor told me since Ryan had been without fluid and that she hadn't dropped at all that the best bet at that point was to deliver her via c-section. Woo Hoo....let's just get this over with!!! I was disappointed that I wasn't actually going to "give birth" but at the same time, I just wanted to see her. I agreed to surgery and within 5 minutes, nurses and doctors were coming in to prep me. I went back to the operating room and got strapped to the table. (which by the way is a very scary feeling knowing that you cannot move because of the meds, and then having your arms strapped down also) The surgery started and I didn't even know it....I didnt feel a thing. But I guess that's the point right?? lol. At 2:14 am, I heard the cries. The most amazing sound I've ever heard in my entire life. The nurses took Ryan over to the table to get her wiped off and make sure she was ok, then told Jay to get her and bring her over for me to see. We both had tears of joy streaming down our faces. When I looked at her for the first time, I knew what true love was. She was BIG, and beautiful, and PERFECT!!!!

TO RYAN:

You are my everything, my whole life, and my precious gift. You will never in your life know just how very much you mean to me. You have made me so much more than I ever thought I could be and for you, I am forever grateful. You have brought a light to my life that I never knew could exist. Every day with you is truly a blessing and I couldn't ask for anything better. I cannot believe you are (almost) 2 years old. Time goes by way to quickly. I look forward to times when you are older, like your first day of school, your first sport that you try, and your first school dance. I cannot wait to share those special times with you and help guide you along your journey through life. You were born with a VERY special heart, and sometimes things that you will go through may not always seem fair, but GOD made you this way because He knew just how strong you would be. You have endured A LOT in your 2 years of life and will continue to go through many more things. Just know that I am ALWAYS here, holding your hand along the way. You are the BEST gift I have ever received and I thank GOD every single day for bringing you to me. Please know just how much I love you and care about you.....you are my everything princess!!!!

*wiping tears away* WOW....this is harder than I thought. I actually just took a 15 minute break in between these 2 paragraphs. I have added some pictures for all to see of Ryan when she was born, and a couple when she was just a few months old. I cannot believe how big she's gotten and how smart she is!! She really amazes me EVERY day!!!

Ryan Sue Sweeney 8lbs. 7oz. 20 inches long

sleeping beauty.....so precious

born on December 13, the 12 days of Christmas baby!!

just over a month old

almost 4 months

Oh how things change. I remember how much she loved that excersaucer. That was the best thing in the world to her!!! Now, she gets really happy when I paint her nails....haha. She is the love of my life and I am so blessed to have her.

I will update again sometime next week with pictures from the birthday bashes!!! I hope everyone enjoys the rest of their week and has a GREAT weekend!!!

It just keeps on coming.....

2009-12-06T08:14:00.000-08:00

Geez....sorry it's taken me a while to get back to the posting. Been pretty busy around here. Let's get down to it....Ryan's appointment went GREAT!!! We got to CCHMC on Friday morning hoping for the best and that is what we got. Ryan's gradient was 39 and is now 40 which is worse but not by much. AWESOME!! We have been told that as soon as the gradient gets up to 50, Dr. Hor (cardiologist) will be speaking to Dr. Hirsch (cath doc) about setting Ryan up for another Cardiac Cath with balloon. Last year, we found out just a week before her birthday that she would be getting this procedure in January, so her birthday and the Holiday's weren't that great. I didn't feel there was much to celebrate with everything happening to Ryan. This year, however, things will be totally different. We now have a lot to celebrate. This year, we will not have surgery on our minds.

Ryan's sats during her sedated echo

during the echo...sorry it's fuzzy, this pic was taken on my cell phone

After Ryan's echo, I swung by the gift shop to exchange a bracelet that I had bought for a necklace just like it. It's called the "always in my heart" jewelry....you can buy a bracelet, necklace or keychain and then you buy little charms to put inside of it. VERY CUTE.

you cannot tell what's in it, but I have 5 charms. A heart that says "hope" in it, a circle with a princess crown that says "mommy's princess," a red heart that says "daughter," a little girl with a dress on that has Ryan's birthstone in it, and a charm in the shape of the letter "R."

The ride home from the hospital didn't go too well because the nembutal that Ryan was on is the DEVIL!!! I cannot stand that med because of what it does to her the rest of the day. She was SO CRANKY. Once we got home though, she fell asleep. Dr. Hor called me to tell me that for the first time ever.....Ryan doesn't have to come back for 6 WHOLE MONTHS!!! That is amazing news. Ryan was down for the count for her nap so I started on getting some things done around the house, and that's when I heard the THUMP!!!

The thump was Ryan falling out of her bed. EEEEKKS......since she was still heavily medicated, she was unable to walk. Well, since I wasn't in her room I do not know exactly what happened but when I ran in her room, she had a pretty decent amount of blood on her face. Jay grabbed a washcloth and got it wet and we wiped her off. All of the blood was coming from the rug burn on her nose and not from the inside of either that or her mouth which was a relief. Poor girl....I can only imagine how bad it hurt. That wasn't the end of it though....it just kept coming.

Ryan was sitting on the living room floor and I went to the kitchen to grab her a little snack. I was getting some animal crackers ready in a bag for her to eat, when she suddenly jumped up and darted for the kitchen. We couldn't catch her quick enough and since she was so wobbly, she fell....HARD. When she slipped on the kitchen floor, somehow her left ear hit right on the corner of the wooden baseboard. So, the top of her ear is swollen and bruised. She's been through it!!!! It doesn't stop there...........it just kept coming.

As the day progressed on Friday, Ryan's nose began to run, and run, and run some more. I was hoping it was nothing more than a case of the sniffles, but I was wrong. Friday night was HARD on her because she wasn't feeling well. She woke up at 2 am and didn't go back to sleep until 5:30 am. When she got back up yesterday morning at about 8:30, she was S-I-C-K!! Fever was 100 but the amount of mucus coming from her nose was HORRIBLE!!! She couldn't breathe out of her nose AT ALL. I waited until 1 pm when the peds office opened and called to get her in, but they couldn't get her in until today at 1:20pm. We were ON IT.

We got to the doc today thinking they would just give her an antibiotic for the sinus infection and we would be on our way. Well, she got the prescription for augmentin, however, it's for her sinus infection, left ear infection, and skin infection. The skin infection happened because the scab on her nose came open, and her yuckiness leaking out of her nose, went in it. UGH. It doesn't look that bad though. I'm sure you all probably have this mental image of this disgusting looking infection on her upper lip but that's not the case. It's just a large scab that's red. Ryan will be on the meds twice a day for 10 days. We are still having her birthday party next weekend though because once on the meds for a few days, she will no longer be contagious.

St. Nick came last night to visit Ryan and she just LOVED everything he had to give her. Here are several pics!!!

digging into her stocking

wow....a GIANT pen.

scribbling on her new Disney Princess paper with her new GIANT pen

more nail polish...she loves having her nails painted.

her favorite....the "Dora the Explorer" bubble bath!!! (see the scabbed nose? :(

We have so many reasons to celebrate this year and I am so thrilled at how Ryan's appointment went, but I'm not forgetting the other families that are not so fortunate this year. My heart goes out to you all. Rather it's that an appointment didn't go well for your child, your child is in the hospital, or your child earned their wings way to early in life....my thoughts and prayers are with you all!!! ALWAYS!!!!!

this is now in our yard. the snowman moves up and down!!! TOO CUTE!!!

I am really looking forward to Ryan's birthday next weekend. I don't like the fact that she is one year older, but I love all the new things she is learning and seeing how much she changes on almost a daily basis. She talks better everyday and is just so amazing. Oh, and just an FYI, she weighs 31 lbs. and is 34 inches tall. ALMOST 3 FEET!! haha.

I may not get around to updating again this week but will post a birthday update next weekend for sure!!! I hope everybody had a great weekend and that you enjoy the week ahead!!

It was a Happy Thanksgiving...now we need prayers!!

2009-12-01T18:40:00.000-08:00

Oh what a Holiday!! We had a lot of running around to do this past weekend. I hope everyone had a WONDERFUL THANKSGIVING!! On Thursday, we packed up the kids and stopped by my mom's. We didn't stay long because we were headed to my Aunt's to eat, eat, eat!! Once we got to my Aunt Beth's house, we all hung out and talked and then it was to STUFF our FACES!! I was trying to relax as much as possible because I knew I had a L-O-N-G night of shopping ahead of me. LOL. After we ate dinner, we were going to drive over to Jay's sister's house. At Sue's house, we had some dessert and the kids had a GREAT time playing with all of their cousins. They always love it at their Aunt Sue's. (Just to anybody that doesn't know, Ryan's middle name is Sue. She was named after my mother, Sue and Jay's sister, Sue. Fits pretty well!!) After we had some good family time, we were ready to head home. I had forgotten my camera so I have no pics. UGH...I hate when I do that.

When we got home, Ryan was quickly put to bed since she had fallen asleep in the car. We changed her clothes and down she went. I was in a hurry to get some warmer clothes on and head to Toys-R-Us to meet up with my cousin Kate, and her fiance, Justin. We met at 10:00 pm in anticipation for the crowd. Their doors opened at midnight. The line was SOOOOO LOOONNNNGGGG. It was a mad house. It wrapped all the way the ENTIRE shopping plaza which is HUGE!! Once we got inside, we rushed around to get everything we needed and made a mad dash for the line. From the time we got in, to the time we left, was only an hour. YESSS!! We then got to our cars, threw everything in the trunk and headed to Wal-Mart. We got to wal-mart at about 1:20 am and their sales didn't start until 5 am. We got a spot in line for a camera that Kate was purchasing and then went to walk around. Justin stayed in line while Kate and I went looking. The employees at that particular store are not really that concerned about the little items that people want. All of the sale items have signs on them stating that no items can be put into your cart or taken from that spot until 5. However, items like clothes, and little toys, are not a huge concern. They are more worried about people getting ahold of the electronics because some people wait in line ALL NIGHT for those things and it's not fair is somebody just goes up and takes one. So, with that being said, we grabbed ALL the little stuff that we wanted. I got some new bath towels for us, as well as some clothes for Ryan. I also grabbed some "Dora the Explorer" strawberry scented bubble bath. She will be SO excited about that!! Since we had most of our stuff that we needed, we just sat and waited as the clock kept ticking. Once 5 am hit, it was CRAZINESS!!! We ran around the store to grab 3 or 4 last minute items and then headed for the checkout. It went by SO QUICKLY. We were checked out and out the door within 15 minutes. You just can't beat that!!! We headed over to Target where the doors were already open and picked up some more hot sale items. All in all it was a pretty good night. I got everything on my list at all 3 places and made it home by about 7:45 am. Not to bad. It was well worth it because with everything that I got, had I not gotten it all on sale, would have probably cost me about $200.00 more than what I spent on everything. NICE!! I'm sure you all think it's crazy but hey, isn't that what the Holiday's are all about??

getting ready to leave for Aunt Beth's house

aren't these 2 such a cute pair? Ryan has been thrilled to have her "Bubba" around more

OK, so here comes the prayer part of this post. Please say a prayer for Ryan. We are taking her to CCHMC on Friday morning for another echo WITH sedation. She will be given nembutal again but this time, it will be an injection. They gave it to her orally last time, and she didn't do so well. It took her longer then expected to fall asleep and they had to give her the MAX dosage. This time, with the injection, it should "hit" her quicker and be a little easier to deal with. Please just pray that everything goes well. She is then scheduled to see Dr. Hor on Monday and have an EKG. We may be able to get the results on Friday, but if not, we will wait until Monday. I will, of course, keep everyone posted.

MORE PRAYERS NEEDED!!! Please say a prayer for Logan Jack's. http://www.whenlifehandsyouabrokenheart.blogspot.com/. He had his cardiology check up yesterday and it didn't go so well. Another surgery may be in his near future. Logan has already been through so much so stop by his page and check it out. WE ARE PRAYING FOR YOU LOGAN!!!

Also, Derrick Carter needs your thoughts and prayers as well. http://www.carolinacarters.blogspot.com/. Derrick also had a follow up and his first open heart surgery will probably be scheduled to take place by the end of January. WE ARE PRAYING FOR YOU D!!!!

here is a silly video of Ryan....the second one is sort of dark but it is her dancing to Janet Jackson while we were watching the American Music Awards a few weeks ago...SO FUNNY!!!

Giving Thanks......

2009-11-25T06:03:00.000-08:00

Every year, Holidays will mean more and more to us here. We are so very thankful for Ryan being here with us. Instead of making a list of everything I am thankful for (because I think that's pretty obvious) I am going to give thanks.

Thank you to our blog/carepage family. You have all been there to support us from the beginning and your kind words and thoughtful prayers mean more to us than you will ever know. It takes a lot to have a complete stranger on your side, but you all stepped in and I don't feel like we are strangers any longer. I feel like I've known a lot of you for a LONG time. Sharing our journey's with eachother has helped me so much in knowing that we are not alone in this "CHD world."

I want to say thank you to our family. You have all been very supportive and caring through the great times, and the very difficult ones. I know I can count on each of you to be there for us no matter what. It's amazing to know that Ryan has such wonderful people surrounding her at all times!! She to, is thankful for your endless love!!

Thank you to our friends. We have such wonderful friends that always give words of encouragement and are there always when we need someone to talk too. You have all been so good to us and it is very much appreciated.

MOST IMPORTANT THANKS.....The doctors and staff at Cincinnati Children's Hospital Medical Center. Without you, I don't know where we would be. You have all done such an amazing job caring for our precious heart child. You do everything you can to make appointments with Ryan comfortable for her and we truly appreciate all of your hard work and dedication. It is because of you, that we are confident in knowing that Ryan will be with us for ALL of our Holidays ALWAYS!!! You have given us the best gift OF ALL!! and that is FAITH, LOVE, and HOPE!!

There are so many things that we are all Thankful for this Holiday season, but don't forget to give thanks as well. My heart goes out all the parent's whose babies became angel's too soon. May GOD be with you this Holiday season and always. My thoughts and prayers are with you all. God Bless everyone and have a HAPPY THANKSGIVING!!!!

Another scare....

2009-11-22T16:54:00.000-08:00

Oh boy, where to start? When I woke up on Saturday morning, I was in a rush to get out the door. I was meeting with Katie (my cousin) and her fiancee to go talk to a florist for their upcoming wedding in March. We were then going to Hobby Lobby to pick up some things for Christmas for her son. When I returned home, we had a bit of a scare. Jay looked at me and said "does Ryan look blue to you?" I scooped her up and started examining her lips, face, fingers and toes, and sure enough, she had a blue tint to them all. I immediatley grabbed the pulse-ox to see what was going on.

here is the results....98% for O2 sats. GREAT!! but......

If her O2 sats were 98....why is she blue?? We still do not know, but it went away. Jay said this blue tint started about 15 minutes before I got home, and after I got here, it lasted about another hour. We decided we will just keep an eye on her and make sure we are checking her sats at least once a day until she sees the cardiologist on December 7th. With this happening, I'm getting more nervous. Ryan is scheduled to be sedated for her echo on December 4th, and will then get her EKG and see Dr. Hor on the 7th. It was on December 5th last year that we were told she needed her cardiac cath done....eeks...her echo is the day before that 1 year anniversary of bad news. Let's hope that we do not get a repeat of that this year!!

Ryan has been fighting nap time more and more these days. Yesteryday, she refused. She wasn't acting to tired so we just didn't really push the issue. I do still want her to take at least a small nap everyday, but I know it's not the "end of the world" if she doesn't. So, she was hyped up on something ALL day yesterday and just didn't want to sleep. We had some coloring time, and played with her blocks. When she stacks them, she tries to count as well. She can easily count 1-2-3, then she goes straight to 5-6-7, and then it's 10!! lol she is really trying though.

don't you just love the shades?? She's SUPER COOL!!

Stef, we used your recipe and made some ornaments!!! That was too fun! Ryan loved it. I also wanted to get her handprint this year so we mixed the dough, and then flattened it out, and when she stuck her hand in, she yelled "oohhh SAND!!!" Too funny. It did feel like wet sand though. HA. We made a handprint ornament for ourselves and also for my mom.

Ryan's tiny little hand with her REALLY long fingers

With Ryan not napping yesterday, she CRASHED right around dinner time. We could tell as she was eating that she was just EXHAUSTED!! She started falling asleep in her high chair so I just had to grab the camera. You will notice in this video that she keeps saying "cheese" because she thought I was just taking pics of her....and sorry about the camera shaking. I was laughing so hard and I just couldn't help it.

This next photo is the end result.

OUT.....she was snoring SO LOUD!!

Pretty Princess....messy hair.

This last video is the one I have been trying to post on here for a few days. FINALLY. It's just her saying that she loves all the kids on the blog. TOO CUTE. ENJOY!!

(keep in mind you will have to pause the music playlist at the top left of the blog so the song doesn't mix in with the video)

I hope everyone has a GREAT Thanksgiving....I will try to post before then but may be too busy. We have a lot going on this week. :) I LOVE THE HOLIDAYS!!! BUSY BUSY BUSY!!

Another one of "those" days.....

2009-11-19T18:19:00.000-08:00

I know it's normal, and everybody has them, but today I'm just having one of "those" days. I was fine earlier this morning and most of the afternoon. Then, it just hit me. I looked at Ryan sitting on the couch watching "Finding Nemo" and I just started crying. I couldn't control it anymore. It's been a while since I've really just let it out. I know it's normal to ask why this life was chosen for you, but is it still normal after dealing with it for almost 2 years? January 10, 2010 will mark the 2 year anniversary of Ryan's diagnoses. Should I still be asking why? Should I still have breakdowns? It's just such a confusing state to be in but I know it's normal. I sometimes think to myself....I wonder if I will be able to watch Ryan get on the bus for her first day of school? I wonder if we make it to see her as a teenager if we are going to fight a lot or be close? I wonder if I will ever see my precious baby walk down the isle on her wedding day? Will she be a mommy and if so, what kind of mommy will she be?

I know I'm jumping WAY ahead and shouldn't be thinking/worrying about these things now, but then again, it's a reality. Some of us "heart families" don't get the chance to see these things happen. My heart goes out to them EVERYDAY!!! I know I'm blessed and will be FOREVER grateful to have Ryan NO MATTER WHAT!!! I know all of you other heart mom's have had some point where you've had a day like this.....so I'm asking for your help.....how do you cope when you have one of "those" days where you just breakdown and realize all over again that your child is "terminally ill?" Any tips would be appreciated...it's nice to help eachother through tough times. Hopefully I don't wake up tomorrow feeling the way that I do now. Tomorrow, I will wake up and give my wonderful blessing a BIG hug and kiss and remind her of how much I love her.

I tried once again to post the video's but for some reason they are not loading correctly. I guess I will try again some other time. I hope everyone had a great week!! Tomorrow is FRIDAY!!! YAY!!!!

more BIG changes....

2009-11-18T18:30:00.000-08:00

So, I just cannot seem to help myself. I know I get a little carried away on changing this blog but I think I'm going to keep it this time. I LOVE LOVE LOVE IT!!! Ryan gave me her nod of approval today to.

QUESTION: DOES ANYBODY GO SHOPPING ON BLACK FRIDAY?????

I DO!! I actually just started last year. My cousin, Kate, that I seem to talk about pretty frequently (because she's AMAZING) asked me to meet her at walmart last year on THANKSGIVING night at about 9:45 pm. We SPENT THE NIGHT there!! Her and her fiancee, Justin, were buying a HUGE plasma tv and there were only so many so we had to get there super early. NOW I'M HOOKED!! I got several things for Ryan while I was there and saved probably $100.00. This year, I am getting my game plan together so I'm FULLY ready. I have a list of items that I need to purchase at walmart and target. I'm getting so excited for this. It does seem like a long time to spend there but it's worth it. Last year, the sale actually began at 5:00 am. So, I got everything I needed to get while there, and got in line to pay and was home by 6:15. NOT BAD AT ALL!!! This year, though, it will be later because I need to go other places too. IF YOU'RE INTERESTED....... go to www.blackfriday.info they have ALL of the ads for black friday that have already been made available to see. If you click on a certain store, there will be a tab at the top of the listed items that says "ad scan" CLICK ON THAT!!! It pulls all items available up just like a normal store ad and you can browse all the WONDERFUL DEALS!!

Moving on....I'm not really sure what Ryan's deal has been lately. I don't know if it's that she's almost 2 and acting what her "new normal" is going to be, or if something more is happening. For the past 2 days, EVERYTHING is a CRISIS!!!! For those who know Ryan pretty well, she is a very happy go lucky kinda gal. She doesn't whine to much and is usually pretty content for the most part. NOT THE PAST 2 DAYS THOUGH. It seems like everything that happens is just causing her to melt down. I will tell her no, and she throws herself on the floor whining. She seems to be crying over EVERYTHING. And it's not just whining all the time, it's actual CRYING. I told her it was time to go too bed tonight (something she usually has NO problem with) and she started freaking out!!! She just jumped in my arms and was crying hysterically. It took me about 15 minutes to calm her down and I layed on the couch with her for a few minutes. I don't usually let her get tired to the point of exhaustion so that way the terrible tired mood doesn't kick in. That's why she goes to bed early around 8 pm every night. After laying on the couch with her she was fine, and went straight to bed. She may have just needed a few extra snuggles before she laid down I guess, but that doesn't explain her getting MAD about all this little stuff lately. Maybe it is just the terrible two's!! AHHHHH....SO NOT READY FOR IT!! Any tips or advice would be great on this subject if you have been there before. Please let me know if there is anything I should try to make this easier on all of us.

Also, I saw something on the news today about Santa not being safe this year. GERMS!!! So, I want your opinion.....do you think taking your kids to get their pictures taken with Santa should not be done this year because of all the illness going around??

HOT TOPIC...... As I'm sure many of you have heard, a little 5 year old girl's body was found in North Carolina. Her mother reported her missing, and then the police found out that her mother was involved. I'm not going to discuss what was done to this angel while she was still with us on this earth because it is heart wrenching. It brings tears to my eyes when I think about what some parents do to their kids...especially when there are people out there that cannot have kids and would love to be given the chance. Or in most of our situations, when we love and cherish our children beyond words, and they have this deadly disease known as a CHD. Do me a favor....before you put your kids to bed, or if you've done that already, then in the morning....Give your son/daughter an extra kiss and hug and explain to them how much you love them, and how big of a blessing they are in your life. Our kids need this!!! We need this!!! It's so hard to hear about ANY child losing their life. Just make sure your child(ren) know how much they mean to you. You never know what this life will bring to you, so treasure it while it's still yours!!!!

She wants it all and she's SERIOUS!!!!

2009-11-16T18:17:00.000-08:00

This time of year has always meant a lot to me. Time with family at Thanksgiving and Christmas. Time eating delicious food. Time putting up Christmas decorations. Time spent shopping for presents and then the time spent to wrap them. Every year we all have plenty of things that we are greatful for. This year, I am thankful for time. More time with my beautiful daughter. We all know that this CHD life can be turned around at any moment and it can change for the worse. So, with that being said, I'm most thankful for the chance to spend more Holiday's with Ryan. She has been the best blessing in my life and that will never change. There have been a lot of little one's lost to this HORRIBLE disease this year, and we should all take a moment to remember those that have been lost, and be thankful for what we have. Keep those families in your heart this Holiday season, because it's not going to be an easy time for them.

I usually do not put up our Christmas tree until after Thanksgiving, but this year, I'm really excited about it. Not that I haven't been in the past, but I just felt like getting started early. I put up the tree this past Friday and then Ryan helped put the ornaments on Saturday. It looks a little bare without being able to see the lights on but once they are on, it's so pretty. It is pre-lit with red and green lights and also has white fiber-optic lights on it. SO EXCITING!!!

Every single toy commercial that comes on t.v. now, Ryan feels the need to scream out "I want that!!" It's pretty funny because a lot of them are for video games and things that she doesn't fully understand yet. She just knows it looks cool so of course, she just has to have it. She has been doing so many funny things lately. When at my mom's one day last week eating dinner, Ryan was outside in the back yard just running up and down their hill. She stopped halfway down the hill and stuck her hands up in the air in a questioning gesture and just yelled "ARE YOU SERIOUS??" LOL I have never heard her say this before and just couldn't control myself. I was laughing so hard that the tears were just flowing. Because she saw the laughter just booming from my mom and me, she must have stood there for 15 minute straight just saying it over and over. It was probably one of the funniest things I have ever seen. She just cracks me up with her personality and the things she comes up with. Another funny thing is when she is doing something she shouldn't, I will ask her "do you want to go to time out?" Ironically enough, she often puts herself into time out. When she does something wrong, she will say "go to your room." Then she runs back to her bedroom and SLAMS the door shut and will sit on her bed for a few minutes before coming back out. Well, yesterday, I asked her if she wanted to go into time out because she wouldn't stop standing on the coffee table.....she looked at me with a very blank stare and shrugged her shoulders and said "uh huh!!" Then she just laughed right at me. I just cant believe her sometimes. She's getting to be quite the handful with her funny things that she says and her little attitude on top of that. I dont know what I'm going to do when she is a teenager!! AAHH. :) Those will be some crazy times I'm sure.

I have a couple short videos that I wanted to add but I'm having some issues getting them uploaded so I will try again next time.. Have a great week everyone!!!

Oh this darn computer

2009-11-11T11:31:00.000-08:00

Ok so we are having issues with out computer AGAIN!!! I'm so tired of that darn computer, so here I am using my mom's AGAIN!!! I don't know what else to do to fix it. It is just going SO S-L-O-W that it takes about 15 minutes for a page to load. Anyway.....there's not a WHOLE lot that we have been up to, but I have some good pics.

We are trying to get in the Christmas spirit already. Can you believe it's only 45 days away?? That means its getting closer to Ryan's birthday. Ryan will be 2 years old on December 13. CANNOT BELIEVE IT!!! Instead of giving the kids at the birthday party little goodie bags to take home, we give them Christmas ornaments with their names and the year. We did this last year and everyone loved it. It saved them from having to get ornaments for their kids. GREAT IDEA!! This year, I might have to make them...thanks to Stef for sharing the idea of home made ornaments. That sounds like tons of fun.

any idea who is hiding behind those curtains??? RYAN of course!!!

I am getting pretty excited about Thanksgiving, Ryan's birthday and Christmas. I just love this time of year. Although its been strange weather for us lately. I don't know how many of you, IF ANY, have ever been to Kentucky, but the weather is VERY unpredictable. Today it's been a bit chilly at about 60 degrees but 2 days ago it was sunny and 70!! It is usually NOT this warm in November. I'm not sure that we will have a white Christmas. This is just not normal. But I'm not complaining....I don't like the cold.

it seems like every time Ryan eats a peanut butter sandwich, she falls asleep in her high chair. LOL

time for the swing at the park with Me-Me and Pappaw. SO FUN!!

watch me slide all by myself

lots of bubbles in the bath!!! her favorite.

Other than going to the park and planning for Ryan's birthday, we don't have much more to update on. Ryan has been on her antibiotic for almost the full 1o days now for a sinus infection, but other than that, we have all managed to avoid getting really sick for now. *knocks on wood* I'm hoping we can all stay that way.

Other than today being Veterans day...SUPPORT OUR TROOPS!!! Today, is also DADDY's BIRTHDAY!! not my dad, Ryan's dad. HAPPY BIRTHDAY JAY!!!!! WE LOVE YOU!!!!! Ryan woke him up this morning but throwing his card in his face and then screaming out the birthday song. What a nice way to wake up in the morning huh?? It was precious!!

I guess I will try to update again asap but I'm not sure when that will be. For those of you whose pages I have not looked at lately, I apologize. Once everything is up and running again, I will have to play catch up.....Thanks for baring with us!!

What happened to his arms????

2009-11-05T12:30:00.000-08:00

Yesterday, Ryan and I were playing with Mr. Potato head and having a great time doing it. I opened up his back and got out his eyes, ears, mustache, etc. There were a few pieces in her toy bins in her room too so we got them out. As we were putting together Mr. Potato head, I started looking around at the pieces we had. "Ryan, where did his arms go?" The look she gave me was priceless. I wish I had my camera on at that time. She gave me a look that said "I'M GUILTY!!!" Then she said in a very shy and faint voice "where it go?" I knew something was going on at this point so I enlisted her for help on finding them. It's not that I would be upset if we didn't know where they were, I was just interested in knowing if she even remembered what she had done with them. For the past few weeks, she's been really into hiding things, and hiding herself for that matter. If she's being really quite, I will look around the house for her and she will be sitting in a closet somewhere or in her play tent and tunnel downstairs. When she realizes that I see her she will shout out "YOU FIND ME!!!" She loves this game a little too much because sometimes when I think she's in the typical spot, she'll surprise and scare me by not being there.

So off we went, to look for Mr. Potato heads limbs. I checked under all of the beds. (again, typical spot for her to hide toys.) NOT THERE. I checked in the bathroom cabinets. (another clever place for toys to end up.) NOT THERE. While I was doing this, Ryan was just following me closely as if silently laughing at me not being able to find a set of white plastic arms. I gave her a pretty serious look and said again, "Ryan, what happened to his arms?" This time she let out a nice giggle and said "arms?" With that, I gave up my search. I had other things that needed to be done. I was unloading and reloading the dishwasher and had to get laundry done also. I grabbed the hamper out of Ryan's room and made my way down to the laundry room. I sorted all of the laundry and put a load in the washer. When I looked down to grab the hamper and return it upstairs to Ryan's bedroom, you'll never guess what I saw sitting at the bottom.

look closely and you can see them....little white arms!!!

AHA....there they are!!! The funniest thing about the arms being in the hamper is that it was full. So, how did they get all the way to the bottom? Well, the holes in the side of it of course!! She must have been very focused on this task. I'm assuming since she's not far away for long periods of time, that this was done while she was supposed to be napping, or when she first got up in the morning. She must have sat on the floor concentrating greatly on getting those little limbs through the holes and into the bottom of the hamper.

I took the hamper and the arms back upstairs and asked Ryan what was in the hamper. She looked at me with BIG eyes and just gave me a HUGE smile. She didn't even have to look...she said "arms?" DING DING DING....you are a WINNER!!! Good job Ryan....your really smart. How did you know what was in there without even looking??? HAHA.

Later in the day yesterday, Ryan came to me and said "where baby go?" This time I knew she was just wanting me to find it because she thought it was funny. I didn't really have to do a great search. I walked into the living room and looked around and it sort of popped out at me.

Where's the baby? sitting under the end table next to the couch. SILLY GIRL!!

Does anyone else have any funny stories of their kids hiding either their toys or themselves? I want to hear about it!! Let me know if you have any good ones. I hope everyone is having a great week!!!

A Happy Halloween it was...

2009-11-02T05:38:00.000-08:00

I hope everyone had a VERY HAPPY HALLOWEEN. Our was great!! We had some family over to join in on the fun. My mom and her husband came, my cousin and her fiance, and then my Aunt. Ryan really didn't know what was going on, but she was excited about dressing up and kept talking about us having a party. Whenever she sees a lot of people, she thinks it's a birthday party and starts singing. FUNNY STUFF. So, we all ate dinner, and then starting getting the kids ready for trick-or-treating. Since it was pretty cold out on Saturday, staying at about 50 degrees all day and then colder when it got dark, I had to quickly think of a way to make Ryan stay warm but make it to where people could still understand her costume. I grabbed an old zip up hoodie that was a little bit too small for her, and my cousin, Katie, worked her magic. She cut it up in some places and put safety pins on it like the "punks" do. It turned out REALLY well.

here is Ryan before her hair was done. She kept wanting to put her hands in her pockets but forgot that there was a hole cut in it. haha

I knew that I wouldn't be able to give her a mohawk with doing little pony tails because her hair is so fine, and although it doesn't look like it, it's actually pretty long on top when you try to spike it up. So, I did 4 little pony tails and once I sprayed the pink in, I didn't even need hair spray. That hair coloring spray is like glue in a can. Here is the result.

again with the one hand in the HOLE pocket. As you can see, I also painted her fingernails black for just an extra touch. NICE.

this was when she was done collecting candy and decided to just hang out in the driveway with everyone to get warm by the fire in our fire-pit. Like the slippers?

Jay and I walked around with Ryan for about 45 minutes and then she sort of lost interest. We went back to our house, and she helped pass out candy and eat some of hers of course. She had a REALLY good time and we had so many compliments on her costume. A lot of people said she was the CUTEST punk EVER. I'm sure next year she will be able to tell us what she wants to be so I don't have to come up with something myself.

here is Josh (Michael Jackson) Ryan (punk) and Quintin (mob gangster) for those who do not know, Quintin is my cousin Katie's son. you can't see Josh's glove in this pic but he had a sequin glove that he wore.

Last night, we went to Jay's brother's house because his son Logan just turned 3. His birthday was yesterday so they had a party for him last night. We ate dinner there and watched Logan open his presents. Ryan got really excited once again because it was a PARTY!!! She just cracks me up because she waits until everyone is DONE singing, and then she yells out "hap bir-day to woo!!" I think she does it because she wants the spot light to be on her when she sings. lol.

I hope everyone enjoys their week. Make sure to stop by Logan Jacks' page tomorrow and leave a message to wish him a HAPPY 3rd BIRTHDAY!!! www.whenlifehandsyouabrokenheart.blogspot.com Logan is a very special little boy and we just LOVE reading his blog to hear about all the funny things he's up to. Until next time....

The protocol is sedation

2009-10-29T11:23:00.000-07:00

Does everyone just LOVE the newly re-designed blog? I spent a lot of time on this and am quite proud!! Here's the scoop...Ryan has another appointment scheduled to see Dr. Hor in December. He only sees patients on Mondays and she has to get an echo done every 3 months. Since her last echo was with sedation on September 4, she needs another one. The hospitals protocol is to give mild sedation with their echo's for children under 4 years old. When she saw her old doctor at the outpatient office, they didn't do sedation. So, Ryan is scheduled on Friday December 4th at 8:00 am for a sedated echo. She will then see Dr. Hor on Monday December 7th at 10:50 am for an EKG and follow up exam. Since his schedule fills up so quickly, I might call back next week and go ahead and schedule her for March as well. That would probably be a pretty good idea.

In the mean time..it's almost Halloween!!! Can you believe it's almost here? I love this time of year. I love the leaves changing color and the nice breeze we get on a sunny day. I could do without the illness and germs all over the place but hey, I guess you have to take the good with the bad. I want to hear what everyone's kids are being for Halloween. I'm sure I will see pictures later and I really look forward to that!! What is your little guy(s), girl(s) being this year? In case you didn't read the other post, Ryan is being a punk rock girl, and Josh is being Michael Jackson. I cannot wait!!!

I also want to hear about everyone's pumpkins!! I love pumpkin carving and I just think they look really nice when they are lit. We have our one big pumpkin with the spider carved in it, and Ryan also has her Mr. PUMPKIN head. (complete with Mr. Potato head pieces.)

Ryan still has a runny nose. She had the fever of 102 last week, which thankfully went away with 2 doses of meds but the runny nose just wont stop. I believe its draining to her throat now because the cough is getting pretty nasty but only at night. Of course!!! I'd rather her cough through out the day so it didn't wake her up all night. Poor girl!! I keep trying to get her to say "trick or treat" but the only part she says is "or tweat" lol. She tries so she gets an A+ for effort!! Maybe eating some Halloween candy will make her nose stop running?? HAHA....wouldn't that be strange??

I'm not sure if I will have anything to blog about between now and Saturday so if not, I really hope everyone has a VERY SAFE, VERY HEALTHY, and HAPPY HALLOWEEN!!!! I cannot wait to see everyone's pictures after!!

UNDER CONSTRUCTION!!!

2009-10-27T20:10:00.000-07:00

PLEASE BARE WITH ME...I am making changes ONCE AGAIN to this blog. When you view the page, you will notice things don't look right or match and it will look pretty crazy but I am working on making changes and hopefully I can stop changing my mind and keep it designed one way. HAHA. I hope everyone is having a great week!!!

Today, we received the gift of HOPE

2009-10-26T17:01:00.000-07:00

Has anyone ever given you a gift that changed your life? It can be ANY kind of gift at all. Something material, or something not? Our children are blessings and gifts with bows on them bigger than we ever thought possible!! When you receive the news that you have a sick child, let's be honest, you don't think of that as a gift right? I know I didn't, but I do now. Well, what happens when you get the GREATEST gift of ALL other than the birth of your baby? We received that gift today and I cried tears of JOY. Today, we received a gift that will change our lives and how we live it. We received the gift of HOPE!!

At 9:00 am this morning, we took Ryan to Children's Hospital for a second opinion on her heart. We met Dr. Kan Hor for the first time and listened closely to what he had to say. As most of you know, we had some issues with her regular cardiologist because our questions were not being answered thoroughly and it made us very uncomfortable. For the FIRST time since her diagnoses, almost 2 years ago, we got the answers we have been looking for.

This is Dr. Hor, and he has changed our lives for the better.

We knew this appointment was going to go well as soon as he walked in the room. He scared Ryan when he first came in because she was standing by the door. He looked at her and said "WOAH....I'm sorry little missy, let's try that again." He then went back out of the room and shut the door behind him. He slowly opened it again and barely stuck his head through. He gave Ryan a BIG smile and simply said "peek-a-boo beautiful." She gave him a HUGE smile back with a little giggle in the mix. For those of you that don't know, this is so great because every time she has seen her previous doctor, nothing was ever done to make her smile or laugh. It was pretty much like she would come in, tell us results, say to come back in 3 months, and out the door she went, as quickly as possible. We could tell right away, that's not how this doctor was which automatically made us feel better about him. He shook our hands and then sat down and started talking to us about personal things. He said he had a 21 month old daughter at home and another baby on the way, and then asked if Jay and I were planning on having any more kids. Even if he didn't really care, it was nice that he acted that way. He made us feel like he wanted to get to know the people caring for our precious heart baby. He wanted to listen to Ryan's heart first so instead of just sticking her on the exam bed and pulling out his stethoscope, he had her sit in my lap, and he had her help him to make it more fun for her. He let her hold it, and then just guided her hand around her chest where he needed to listen. We could tell she thought it was really cool that instead of not being able to touch anything, she got to help.

One of our biggest questions that we've always had is "if you know she needs surgery at some point to fix her valve, why can't you just do it now and get it over with? That way she won't remember it." In the past, this question was answered with a simple "that's just not the way we do things." OK...but WHY is that NOT the way YOU do things? He was able to REALLY answer us today. Dr. Hor explained that they don't typically repair a valve. If they do surgery on Ryan NOW and replace her valve with an artificial one, she will outgrow it probably within the next 5 years. This will lead to ANOTHER valve replacement by the age of 8, the latest. Once that surgery is done, she will outgrow that valve probably around the age of 17, the latest. With each surgery, the risk becomes greater and greater. Every time surgery is done, she is put on bypass and given a strict regimen of meds to take daily for 2 whole months AT LEAST. Insead of giving her around 5 surgeries by the age of 30, why now wait AS LONG AS POSSIBLE and only give her ONE....MAYBE TWO?? Well, that makes GREAT sense to me!!! Although Ryan's balloon that she had on January 9th didn't do what they wanted it to do, it did improve her heart somewhat. Her gradient at that time was 55. After the procedure, it dropped down to 29. They had hoped, and with the statistics, that it would go down to between 0-5. It obviously didn't do that, and since then, her gradient has gone back up to 39. She's borderline mild and moderate right now as far as the severity of her disease. Our hopes are that she will stabalize, but if that doesn't happen, once the number get's back up to around 50 (the severe range) Dr. Hor said he would want to try another balloon. This is something her previous doctor told us would be a waste of time since it "didn't work" the first time. Dr. Hor's take on that is, "it will buy her more time." If they do another cardiac cath, they can knock her numbers back down, even if it's just a small amount, to keep her out of the severe range of stenosis. By doing a cardiac cath every time her numbers jump back up, they are able to keep her at a number that is good enough to keep waiting on surgery. He said that the ideal situation for us right now would be to be able too wait at least 10 years before surgery. Even though that will be harder on her physically and mentally, it would be the best thing to do for her. Why couldn't anyone ever tell us this before?? YA GOT ME!!

It all makes sense now. It's not "just how they do things." They have a REASON..and ACTUAL REASON for this, and it is to benefit Ryan. It's amazing when someone gives you a breath of fresh air and gives you HOPE for your childs future. We were also told that Ryan would never be able to play sports. Today, we were told that her body will not do more than it is capable of doing. If she wants to play sports and get involved, she can do so, as long as we as parents, and her realize that she does STILL have heart disease and that if she feels like she needs to take a break or stop doing something, that's what will happen. But, she can TRY. I've never felt this GOOD about a doctor. He made us feel so comfortable and I just cannot get over how great the appointment went.

He did tell us that even though this is good news and that we now have a PLAN for Ryan, she does still have a CHD. We need to keep in mind that she will be different than other kids. If she gets sick, we need to keep her at home and away from extreme germs. We still have to watch her and make sure her breathing is ok. This is something that will ALWAYS need to be done and we're JUST FINE with that. It's just so nice to hear though, that this doctor has great HOPES for Ryan. It could still very well happen that she needs surgery sooner than 10 years. If her numbers jump back up, and they do a cardiac cath that doesn't make the numbers go back down, then it will be time to discuss other options at that point. But, until that day comes, we are going to breathe a little easier and probably sleep a little better.

After this amazing appointment today, Jay and I both decided that Ryan will no longer see her previous doctor. We just felt way to good about the one we saw today. Since she didn't get an echo today, and still needs one every 3 months, we will be taking her back to see Dr. Hor in December to get her echo done and discuss the results with him, the man that has given us te gift of HOPE.

Here is Ryan playing with the "stickers" from her EKG...she thought it tickled when she would stick them on and pull them off. SILLY GIRL.

Her favorite thing about seeing the cardiologist....NO CLOTHES!!! She can run around in just a diaper and be REALLY happy doing it.

OTHER NEWS:

Our team, HEALING HEARTS, raised $500.00 for Cincinnati Children's Hospital Cardiology Department. There is still not a total raised OVERALL but I will let you know when I do. We did pretty good, but am hoping to at least double it next year. In the mean time, I'm starting to work on getting Ryan's birthday party planned, and trying to get a little Christmas shopping done at a time. WISH ME LUCK!!!

I want your comments!!! Let me know of a gift that you have received that just MADE YOUR DAY. It can be ANYTHING. Or more than one thing. Something you may or may not still have, but that you will NEVER forget.

Just a little something....

2009-10-25T17:53:00.000-07:00

I don't really have a whole lot to update on. Ryan came down with a fever of 102 on Friday but it went away after 2 doses of meds. THANK GOD!! She has had a runny nose for a few days but it seems to be getting better. We had a little scare but I guess things are ok now.

We had a pretty relaxed weekend. On Saturday, me, Ryan, my cousin Katie, and her mom went to look at a flower girl dress for Ryan to wear in Katie's wedding. We were pretty excited because we got a GREAT DEAL on this dress. She looks so precious and like a little bride. It's a little bit big on her now, but thats ok because the wedding is not until March.

Don't you just love it??? I sure do. The color of the sash will be changed to match our bridesmaid dresses which are a color called Sangria. It's like a deep fuschia I guess you could say. It's very pretty though.

Today was also pretty relaxing. With Ryan being sick I went to the grocery store by myself while she stayed home with Daddy and napped. Earlier though, we carved our pumpkin here at home on the deck. Once again, Ryan wouldn't touch it. She kept saying ewww. HAHA. Oh well, maybe next year she will get into it. But, with her love for spiders, it was only right for me to carve a spider into her pumpkin.

It turned out really good I think. It was sort of hard to do because the legs on it are so skinny that I kept having to using the pumpkin carving saw to scrape the inside of the legs more so the light would shine through. I cannot wait for Halloween!!

Well, I guess that's it for now. Just wanted to give you guys a little something. Wish us luck tomorrow because tomorrow morning is Ryan's appt for her 2nd opinion. We are to be at the hospital at 9:00 am. I will update tomorrow with what this doctor has to say. I sure do hope everyone had a GREAT weekend!!!

A splash of color....LOVE THIS!!!

2009-10-22T19:36:00.000-07:00

Does anyone else just LOVE LOVE LOVE black and white photo's? I sure do. But what happens when you add just a SPLASH of color? I think pictures like this are beautiful. NO matter what it is a picture of. Here are some pictures I did of Ryan with just a touch of color.

I would also like to ask a favor from everyone. Jay and I are both VERY unsure of the H1N1 vaccine. If anyone can please share any information with us that would be greatly appreciated. If you guys have any links you could leave in a comment, or any personal experience with the vaccine, please let me know. Ryan's nurse said she SHOULD have the vaccine, but it is not yet available to us. On the news today, they had a map of the US and the states that were colored in RED had the highest rate of people infected with the virus. Well, Kentucky was one of them, yet we do not have the vaccine yet. That really boggles my mind. Thanks for any info that you can share!!! I'm not sure I will ever feel comfortable with Ry getting the shot, but the more info, the better. :)

Dirty your knees!!!

2009-10-22T05:51:00.001-07:00

Before I get started on the prayers that are needed....I want to share Ryan's 2 year photos. They are a bit fuzzy but that is because I took a picture of a picture due to us not having a scanner. She hasn't been to get her pictures taken in a while so I was not sure how she would do, especially now that she has her attitude that goes with her ALMOST 2 years of age. She had a few moments where she would run away and try to play with the toys that the photographers have and she insisted on playing instead of looking cute. :) They were able to get some pretty good shots though.

I LOVE these!! The second one is my favorite. Her hair was a little crazy as you can see with her "wings" sticking out on each side. Oh well, I still think she is gorgeous!!! and I cannot believe she is almost 2. Us heart mom's know that it's not just a birthday, it's a celebration of life. At the same time, it's a reminder of the little ones that are no longer with us, and our hearts will FOREVER be with them and their families.

Monday night, while at my mom's house, my mom decided she wanted to carve her pumpkin. We thought it might be a little early but that's ok. I was expecting and hoping that Ryan would just dig right in and really enjoy it. I was SO WRONG. She wouldn't go near that thing!! I tried to get her excited about it by telling her we were carving a kitty cat into it but she didn't seem to care at all. She kept saying "ewww" and "no." I wasn't trying to force her into it, but I wanted her to just see what it felt like. She wanted no part of it, so we just did the gutting and carving ourselves. She has ALWAYS been this way though. If she gets dirt on her hands outside, she will find the closest person to wipe them off for her. It's not normal for a 2 year old to not like getting their hand dirty, but that's just her. She's too much like me sometimes. lol

What a beauty huh?!?! haha. The pic is a bit blurry but you get the idea. Since Ryan likes spiders so much, we are going to carve a spider into our pumpkin either this weekend or sometime next week.

Since Ryan doesn't enjoy the experience of the slimy pumpkin, we decided to just dress up her little pumpkin that our neighbors gave her after they grew them in their yard this year.

This little guy looks AMAZING!! ha. She thought this was great. If ANYONE wants to avoid the mess and still make it fun for kids, just get out the Mr. Potato head accessories. Since the pieces are plastic and not strong enough to push into the pumpkin, use a phillips screwdriver first. Push the screw driver into the pumpkin to make the holes where you want them, then the plastic pieces will fit right in. I'm getting so excited for Halloween and cannot wait to see EVERYONE's pictures of all the kids.

Ok, it's time to get your knees dirty. Baby V needs EVERYONE's prayers!! She was admitted to the hospital last night and her O2 sats were dropping down to the 50's. PLEASE KEEP HER IN YOUR PRAYERS THAT SHE CAN PULL THROUGH. She has been through so much already. We all hope she has the strength. For more info on Baby V, please visit www.kargfamilyupdates.blogspot.com.

I am working on some colorsplash pictures that I am going to post soon. Hope everyone has a great day!!

Fall Firsts

2009-10-19T16:38:00.000-07:00

Ok, so something MAJOR is going on with our computer. I'm currently at my mom's house using her computer. I am able to post a new update on mine, but it will not allow me to add pics. That is just NOT going to work.

So, we had a really nice weekend other than the snow flurries we had Friday night. UGH!! I'm NOT ready for snow but it looks like it's coming sooner than we'd all hoped. This week is supposed to be nice though. Today I think it's gotten to about 65 degrees. AWESOME!! Sunday was nice enough for us to take Ryan to the pumpkin patch for her first time ever. She has been talking about pumpking A LOT, just because she is seeing them everywhere now. Just and FYI also....Stefenie guessed Ryan's Halloween costume...she's going to be a punk rock chick!!! GREAT GUESS STEF!! I guess the picture of the pink hair sort of gave it away. lol

Anyways...back to the pumpkins!! We've never been to the patch by our house so we were excited to go. It is called Daniel's Farm and they have a petting zoo, playground, and a hayride to the pumpkins. Ryan was excited as soon as we got out of the car!!

She was even more excited to see that they had made something that just happens to look like her FAVORITE THING IN THE WORLD.

She played on the playground and of course was very excited about the slide. When we first got there, they give you cups of food to feed the baby animals with. I wasn't sure how I felt about that because of the germs but they had HUGE bottles of hand sanitizer set up ALL over. That was a NICE relief.

After feeding the animals, it was time for the hayride to the pumpkin patch.

When we got off the hayride, she just went crazy!!! She was trying to run ALL over the place and grab EVERY pumpkin. She soon realized they are pretty heavy. HAHA. We weren't actually going to purchase a pumpkin because we already have a rather large one at home, but we just wanted to see her in the moment.

We had a great time and she missed her nap in order to go, so needless to say, she was EXHAUSTED afterwards.

Sleeping on the couch!!

Just and FYI, I changed Ryan's appointment for her 2nd opinion. Jay's insurance at his work is changing on November 1rst to give us a $4000.00 deductable. Right now, we only pay a $20.00 co-pay for a PCP AND specialist. So, this change is going to cause some major issues for us, which is why I changed Ryan's appt to October 26th. The more we can get done by the end of the month, the better off we are. I will, of course keep everyone posted as to what the Dr. says. Hopefully it is all good things.

Even though Ryan's birthday is not until December, I am taking her tomorrow for her 2 year pics. I figured they would probably fill up the appt book pretty quickly with Fall/Winter appts. Her looks wont change between now and December, so I'm getting it done now. I will try to scan a copy and let everyone see.

I hope everyone is having a great week and also had a great weekend.

Am I bitter and angry?? NO WAY!!!

2009-10-14T12:03:00.000-07:00

I get questions from people all the time about being a heart mom.

Aren't you bitter?

Are you angry that GOD chose this life for you and your daughter?

Don't you ever just feel like you want to give up hope?

What happens next?

Will Ryan ever play sports?

Well, allow me to answer these questions for everyone. I am FAR from bitter and angry. Ryan is a blessing, not a burden. I am grateful EVERY DAY that I have her. Do I get stressed when she has a bad attitude and thinks SHE is the one that runs this house? YES. I'd be lying if I said it was easy and I take it all in stride because it's NOT easy. She acts the way every child that's almost 2 acts. She gets wild and crazy, and her favorite words are NO and MINE. People don't understand how I have the strength to cope with having what is considered to be a "terminally ill child." Without trying to sound stuck up, I've always had a little bit of strength. Even before I was blessed with Ryan. She has given me so much more though. We've never gone to church, although we all believe VERY MUCH in GOD. I don't think you have to attend church to believe in HIM and have faith that HE is carrying you through.

I will NEVER give up hope and I will NOT just lay down and die. My baby and her heart NEED me. Have you ever felt NEEDED? not just wanted or desired or loved...TRULY NEEDED? Her life depends on our strength, hope and faith. If I give up, who is going to have hope for her? Nobody. She's means EVERYTHING in this world to me, and I am NEEDED by her. I always will be, and I will ALWAYS have hope for my baby.

As far as what happens next....who knows? We do know that Ryan will ONE day have surgery to either repair or replace her pulmonary valve. We do not know when that day will be...although we wish it could be while she's younger and doesn't understand as much. According to Dr. Lee, surgery could be as early as next year, or it could be in 3 years....but she's 95% sure it will happen BEFORE Ryan is 5 years old. Ryan will also MOST LIKELY never be able to play sports. With how winded she gets and how easily fatigued she always is, sports are probably out of the question. I took her to a try-out for a toddler tumbling class that was supposed to last an hour....she made it 20 minutes before she could barely breathe. We had to sit aside for her to catch her breath, and then we left to never return. That was a BIG reality check as to what she can and cannot do. A lot of rides at festivals and amusement parks have signs on them that CLEARLY state "DO NOT RIDE IF YOU HAVE ANY FORM OF HEART DISEASE OR HEART TROULE." I used to NEVER read those signs on things that I rode but now I have to. A CHD child does change your life FOREVER....but it can change in some amazing ways. You realize just how much love your heart can hold, and how much faith you REALLY do have.

URGENT PRAYERS NEEDED.....

2009-10-12T17:10:00.000-07:00

Urgent prayers are needed for Baby Cassiana. (www.carepages.com/carepages/babycassiana) She is going in tomorrow morning between 8:30 and 9 to have the Glen Surgery done. Please keep her and her family in your prayers tonight and tomorrow that she makes it through surgery and makes a speedy recovery!!!! In order to be at the hospital with their daughter, her parents had to arrange childcare for their other children. Please stop by their page to leave an encourging message. I'm sure they will appreciate the support!!!!

On a much lighter note, I took this video of Ryan today and thought it was too funny. It cannot
wait until I do another update....this is a good one!!!

In need of prayers and ideas please.....

2009-10-12T06:32:00.000-07:00

So I know I just updated yesterday but I found out about this last night. A friend of mine's 10 year old niece has been diagnosed with Alopecia Areata. Basically, it is just a disease that causes hair loss. She has lost all of the hair on her head, her eyebrows, and her lashes and it will never grow back. Please keep her and her family in your thoughts and prayers. I couldn't imagine being any age and going through this, let alone a 10 year old. Her name is Hunter stidham.

Another person in need of prayers is 10 year old Jailyn Hayes. Jailyn was admitted to Cincinnati Children's Hospital for severe abdominal pain and her appendix ruptured. She is now in critical condition and is having some internal bleeding, as well as in the early stages of kidney failure. Please pray for Jay also!!

I need ideas now....

I, personally, have no hosted a benefit. My friend, Jessica, would like to have a benefit for Hunter. There is a certain type of wig that Hunter wants and they are very expensive. Her insurance will not cover any of it and when her parents went to locks of love, they were informed that they only make wigs for cancer patients. If anyone could PLEASE give me any ideas and tips on hosting a benefit, I would GREATLY appreciate it. We need all the info we can get, from food catering, to locations, to fundraising games. (split the pot, silent auction, etc.) I look forward to hearing your ideas. If you dont want to comment here, please email me at rysmom07@yahoo.com THANK YOU ALL SO MUCH!!!

Walking for kids.....

2009-10-11T16:33:00.000-07:00

Yesterday was a busy day here in the tri-state area of Cincinnati. We actually live in Northern, Ky but we are only about 10 miles south of Cinci. We met our team members for team HEALING HEARTS at Coney Island and we were ready. Cincinnati Walks for Kids 2009 was a huge success. There were over 5,000 people that walked and this was Cincinnati Children's Hospital's 4th year doing this walk. The turnout was amazing. This was our 1rst time walking and we couldn't believe the amount of people. It was so nice to see that many people caring.

A few of our team members ended up being ill at home so we had 10 people on our team that walked. Well, 2 of them rode in their strollers. Boy did they have it made? haha. The walk was scheduled to begin at 10:00 am but once the opening ceremony was done, we begin moving at 10:30. It was very cold early in the morning and Mr. Sunshine didn't decide to show up until around 12:30. At least he came though. Ryan was in her stroller with pants, a long sleeve T-shirt, her team t-shirt, and a hoodie on with a big blanket over her legs. I had gloves on because my fingers were frozen. Once we got to walking though it warmed up enough to wear we didn't feel like ice cubes. I think when we first got there it was only about 50 degrees. It warmed up to about 60 later in the afternoon.

The walk was 3 miles and it took us about an hour. Once we got to the finish line, everyone was awarded with a walkers medal and we stayed in line to eat our lunch that was provided to us. Once we were done eating, it was on to the kids carnival!!!

They had a giant slide, a tilt-a-whirl ride, a scream machine, and a carousel for the kids to ride. They also had face painting which I was very excited about because Ryan has never had her face painted before. I was curious to see how well she would do.

We made our way to the rides and Ryan got to ride the Carousel with her friend Cheyenne. I also went down the giant slide with her. She really loved them both!!!

Once we got done with the rides and the Harvest Hangout....I made sure to stop by the remembrance garden to honor a fellow heart mom and her son. Ethin Twigg received his Angel Wings on June 27, 2009. Here, we placed a flower in the garden in memory of Ethin.

Next, it was on to attempt face-painting. I figured it we got Ryan excite about it somehow it would be easier for her to go along with the idea. What better way to get her to sit still then to tell her she will get a spider painted on her cheek? I just happened to catch her reaction when she looked at herself in the mirror. PRICELESS!!

And her reaction after she realized what it was.......

Our total collected for the walk was right around $500.00 but the total of overall donations to the hospital has not yet been calculated. I'm sure it will take some time to get a total but once I do I will be sure to let you know. We had such a great time and cannot wait to do it again next year.

This is a better picture of what our shirts looked like.

I have another clue to Ryan's Halloween costume, but this one includes a picture...we did a practice run to see what it would look like.....the clue is....BRIGHT PINK HAIR. Keep guessing...I want to know what everyone thinks the answer is....here is the pic...

Ryan also has a new spider decoration thanks to her Me-Me (my mom) and she LOVES IT. It is currently hanging from our entertainment center in the living room and has yet to be given a name.

She loves this new spider.....I mean she really just loves ALL spiders. I am leaving you guys with a short video of Ryan dancing right before we crossed the finish line. She loved that they had big speakers with music just blaring out of them...so turn your sound up and ENJOY!!!

alisha

A walk in the park.....

2009-10-06T17:54:00.000-07:00

I realized that on my last post I didn't give another clue to Ryan's halloween costume and I forgot to mention the news on her next check up. Silly me....too much to think about. I finally did get a response from cardiology and she will be seeing Dr. Hor at the hospital instead of outpatient on November 16 for a second opinion. He may just end up being her new doctor if we like him well enough. That would be nice. I have never met him before but am looking forward to hearing someone else's opinion of Ryan's situation.

The second clue to her Halloween costume is:

Funky Tights

HA....I'd like some more guesses.....I know Stefenie you didn't have a guess last time so let's see if this clue helps at all. I'm looking forward to your comment. :)

This past weekend was a busy one of course. Saturday there was a family reunion for Jay's mom's side. It was at one of the park's somewhat close to home. Even though it ended up being pretty cold, we still had a good time. Ryan was very excited to see the slides as soon as we got there. Josh ran right over to the open field where his cousins were all playing football. He was there almost the whole time. Ryan was able to play in the playground area with her younger cousins.

This is Ryan and Mason rocking back and forth. These 2 have quite the love for eachother. They are always following eachother around and trying to sneak away to get into trouble. haha

WEEE....Sliding is so much fun!!! She must have done this 100 times.

Hey....what are you guys doin over there???

Hmmm....what should I do next??

Of course, with every fun day, some kind of injury just HAS to occur. Ryan was climbing up a ladder to get on the playset and lost her balance. She fell and turned herself around and hit her mouth on the ground and bit her lip at the same time. I picked her up just in time to see the pool of blood drip from her mouth. There was so much of it that I could barely see her teeth. I, of course, did the check on all teeth to make sure none were loose. She was fine after a few minutes and went back to playing after we got her all cleaned up. Poor girl....it seems like everytime she gets hurt, it's her face that suffers. It can never be a bump or bruise on her arm or leg. As long as nothing gets broken I guess we should be thankful that she's always ok after.

Ryan hadn't had a nap all day Saturday so when we left the park, which was a little late, she was exhausted. We came home and I fixed dinner. I wasn't sure she was going to make it through eating. She got a bath and went straight to bed.

On Sunday, we went to Kayleigh's birthday party. Sunday was an amazing day outside. The warmest one we've had in almost a month. They had a bouncy house set up outside so the kids could jump away all the sugar from the cake and ice cream....GREAT IDEA!!!! We had a lot of fun except Ryan got upset when I wouldn't let her open the presents. I tried to explain to her that her birthday is in 2 months and we would have a party for her with presents. She really didn't have any idea what I was saying and it didn't work. She was MAD!!! I was so thankful when all the gifts were opened and it was time to move on to something else. HAHA.

The walk for Cincinnati Children's Hospital is this Saturday! It's finally here. Our shirts are not back yet but maybe will be done tomorrow or Thursday should be the latest. I'm excited to see how they turn out. There are 15 people on our team HEALING HEARTS!!!! There are over 4,000 people TOTAL walking the 3 miles. There is also a kids fest going on until 2 pm where there will be face painting, a harvest hangout (for pictures) a remembrance garden, some small rides and a craft corner. I cannot wait to go and see it all. This is our first year doing the walk so we are all very excited to see everything. I want to thank everyone for making your donations and for those people walking on our team as well. It's so nice to have all the support!! I still do not have an exact total for our team yet but hopefully will this weekend. It's not too late to make a donation so if you would like information on how to sponsor our team, please email me at rysmom07@yahoo.com and I will give you the info on how to go to the web site to make a donation.

I will have another update this weekend with pictures from the walk!!! Have a great week everyone!!!

On to BIGGER and BETTER things

2009-09-30T17:49:00.001-07:00

Yesterday was a very hectic day here at home. Every 30 minutes it seemed Ryan would just start crying for no reason. Her head felt a little warm and her temp was 99.8 so I didn't that was it....she grabbed at her stomach a lot though so I just chopped it up to a belly ache. She went to bed a little earlier last night and seemed just fine today. Speaking of today...big things happened for Ryan.

On Sunday, I ordered a new bedding set for Ryan's twin size bed that I knew we would be putting up soon. She has done SO well these past few months with the one side rail being off of her crib, we could just tell she was ready. The order form said standard shipping was 3-5 business days and I was both shocked and excited when the bedding arrived just yesterday.

I, of course, had to wash everything first and then today it was down to business. I took her crib apart and got all the pieces out of her room, with the help of Jay. I vacuumed the floor really good and then started putting her new bed in. It's actually Josh's old twin bed that he had a while ago, but we kept it knowing she would need it at some point. SMART THINKING. I never would have thought she would be in a twin bed before the age of 2. She really just amazes me. She followed us around as we moved things from place to place. She had a look of excitement on her face because she just knew something major was happening. Once the bed was put together, I put her new bedding on it and she went crazy. SHE LOVES IT!!!!

The bedding has trees, birds, mushrooms, owls, flowers, hearts, and squirrels. It is also textured. It has a bunch of different patterns on it which is nice. Ryan's grandpa Joe (my dad) purchased this bedding for her which was SO AWESOME of him. WE LOVE IT...THANK YOU!!!

She just HAD to break it in as you can see. After the picture was taken, I've been trying to DRILL into her head that monkey's should NOT jump on the bed. I think she's starting to understand. Even with her step stool, it's a little bit harder for her to get into this bed but she's managing. She took a nice nap in it today and is currently sleeping in it. Her first night in her big girl bed...oh how time flies by. My friend, Deana, is giving us a bed rail that we are picking up on Friday. THANKS TO YOU TO!!! lol. Hopefully she does not fall out of the bed between now and then.

We have a busy weekend ahead of us. Jay's family reunion is on Saturday at a park. Hopefully it's not too cold because it has been pretty chilly the past 2 weeks. Then Sunday we have a birthday party to go too. My friends daughter, Kayleigh, is turning 2. HAPPY BIRTHDAY KAY!!

The walk is 2 weeks away for Children's Hospital. If anyone would like to make any more donations, please email me at rysmom07@yahoo.com and I will give you the info that you need. THANKS TO ALL THAT HAVE ALREADY MADE DONATIONS!! I do not have an exact number on how much we have raised because we are still collecting donations. Our shirts should be ready to be picked up on Tuesday and I cannot wait to see them. They are going to be white with bright pink and black writing on them. I will of course, post a picture of the shirts once I get them in. I hope everyone enjoys the rest of their week.

A new fun game....and a vote to please?

2009-09-24T18:33:00.000-07:00

So today was another day of being stuck in the house due to illness and it raining outside. Ryan is acting fine but has a pretty nasty cough still. I woke up this morning feeling much better although I still have a few aches every now and then, along with the congested cough also.

We have finally decided on what Ryan is going to be for Halloween. (and yes I realize it's still a month a way and I still have time, but I don't want to do things last minute.) I will give you a clue as to what she is going to be and I want to see how many people can figure it out. I'll give the answer MAYBE in the next update. If you are a close friend or family member that already knows the answer, please don't say it.....or if you do, I will neither say your right or wrong.

Here is the clue:

Pink patent leather boots

Ha....let's see what you all come up with. Ryan has something new as of today that she just LOVES to play with. It still amazes me how it's the small things that are SO entertaining.

That is a rubbermaid container filled halfway with 3 different types of uncooked beans. Inside the container there is also a set of measuring cups. She loves this so much. It's almost like having a smaller indoor sandbox with A LOT less then half the mess. She managed to drop the entire box on the floor but that's ok because it didn't take long to find the beans in the carpet. She stood there and played with it for almost an hour.

Here is a short video of the Bean Fun that she had today.

She also got to play school again because now she has a backpack of her own. I saw this at the store and new she had to have it because of her being so into this school thing now.

I'm not sure if I mentioned Ryan's new obsession in a previous upate on carepages or not...but if not....SPIDERS!!!! Ryan has 2 pet spiders in her room. Yes they ARE real. She SO PROUDLY has named them poo-poo and pee-pee. It took a lot of thought to come up with those names and she's very happy about it. The spiders have a couple crickets with them in case they get hungry and they live in her fish bowl. We went to the Halloween store a couple days ago because Josh wants to be Michael Jackson (of course) and he needed the sequin glove. I figured that would probably be a hot ticket item so I wanted to get it asap. While we were there though, little Princess Ryan just fell IN LOVE....HEAD OVER HEELS with all of the spider decorations. This is what she ended up with.......

These are the spiders that came together in a pack. They are just supposed to be some sort of decoration I guess but when we brought them home she insisted on sleeping with them. She still wanted her stuffed puppies to though. It can never just be one or the other huh? It's all in good fun though and she just loves them to death. She thinks it's hilarious if she puts one on you and you act like your afraid of it. She just cracks up.

Onto the rest of the title. As some of you know I'm sure, there is currently a contest going on to vote on which 3 Children's Hospitals in the country will win a $10,000.00 game room for the patients and their families. The contest is going on until October 16th, 2009.

Here is the link http://xbox.childrensmiraclenetwork.org/default.aspx

You can go to the site and register with your information. Then you will have to choose which hospital you want to vote for. Currently, Cincinnati Children's is ranked number 6. The contest results are updated every 5 minutes. Once you've registered, you can cast 10 votes (all back to back) in one day. So, I strongly urge you to log on and take 3 minutes of everyday until October 16th to vote for Cincinnati Children's Hospital Medical Center. Remember, the top 3 hospitals will win. Also, when you register to vote, you are automatically entered to win an X-Box game system or a Nintendo WII game system. If anyone has any questions regarding the contest, please see the above link for more details. I really hope everyone has a great weekend...hopefully I'll more pictures next time.

First update on blogspot

2009-09-21T11:00:00.000-07:00

Well, here it goes I guess. This is the first official update on the new page. For those of you that do not know our history, we also have a carepage. Check it out at carepages.com/ryanshealingheart. I guess I will start by saying WELCOME!!!

Ryan has been coming down with a bit of a cold, and now I'm pretty sure I'm getting it too. Sore throat and headache for me, and runny nose and cough for Ryan. We did get to enjoy the weekend though. Saturday we went to Park Fest. It's a local festival at a park by our house and they have food/drinks/games/facepainting/rides. They also had the big bouncy houses but I always get nervous about letting Ryan go in those with a lot of other kids. I'm so afraid someone will knock her down and she'll get hurt or that she will bounce right out of it and hit the ground. We did buy her a ride bracelet though and she got to go down the HUGE slide. I had to ride with her though and it's the ones where you sit in the straw sacks and go down. She also rode something called the Twister. It was just a small children's roller coaster that went around a few times. She loved them both. Of course, I forgot my camera so I have no pictures of any of it. She also got to enjoy the usual park fun as well. The slides and swings are always a hit with her.

As you can see from the picture at the top, she also played school this weekend. She used my backpack purse for pretend. She was so excited to put it on and say "school." Then she would give us a kiss and say bye and run down the hallway to either her room or Josh's room. I guess that's where the classrooms were. It's so funny that she's so young but just has such a big imagination. She really does amaze me everyday.

I also took the time to call the hospital today to get Ryan in to see another doctor for a second opinion. The appointment is not yet scheduled because they have to get the approval from whoever the new doctor will be. I should get a call back soon regarding the appointment date and time.

I look forward to doing new updates on this blog and to getting more followers. If anybody has any questions please email me at rysmom07@yahoo.com.

Alisha