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!!!

School is now in session....

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!!

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.....

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??

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

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. :)