It's been a while....

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!!!

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

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

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!!!

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!!!

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??

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??

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!!!