Saturday, June 28, 2008

Friday morning Arianna had an appointment with her immunologist. I had alot of questions for him to help me better understand how her immune system functions in general. I asked why I wasn't told she had a low lymphocyete count and he said that is normal for kids with DiGeorge Sydnrome. He did say Arianna has good t-cell function and her recent labs showed she responded well to the diptheria vaccine and making antibodies on it's own. This is HUGE!!! He said because she responded so well to the diptheria vaccine that shows him her immune system is strong enough to handle the live vaccines. I'm still leary about giving them to her but I know how important it is for her to get these. So at this point I'm going to put my faith in God and believe she will do fine so I'm taking her in next week for her MMR then a few weeks later for her chickenpox vaccine. I'm REALLY not wanting to do this but I know she needs it. Please pray that I find peace about this as I really want her to have these vaccines so I can take her out in public a little more.

One thing the intern doctor asked was if she has had any nose bleeds, which she just several weeks ago. I had no idea why they would ask that but apparently DiGeorge kids can develop auto-immune disease, which I was aware of, but the nose bleeds can be signs of this happening. If this happen on a more frequent basis then we'll do a CBC to check her platelet count. I'm really not worried about it at this time because they normally don't see this happening until children are a little older.

All in all the appointment went rather well. The doctor gave me several books to help understand the immune system function and a really cute book for Arianna once she gets older to teach her all about her immune system. We only need to followup with immunology once a year which requires a CBC to check her levels. I asked about rechecking her immunoglobulins and he said once they see she is increasing in numbers they don't recheck them. However, he said if she is dealing with frequent colds to bring her in for a check up. He also recommends Arianna getting the synagis (RSV) shots again this winter, which will be a pain to get the insurance to approve this since children only get this up to age 2. He said with all the added risks of her heart and lung issues he really feels this is a necessity for Arianna, and to be quite honest with you I would feel alot better if they did.

After our appointment we had our first social gathering with our support group at the local zoo. Unfortunatly most of our memebers couldnt' go but we had our faithful father, Jason, show up and a new heart mom and daughter. Her daughter is 8 weeks old and the absolute cutest little thing. It was alot of fun to be around other heart families and watching the kids have a blast. My mom, sister, and nephews went as well which made it a really nice day. Here's a little video of our trip to the zoo.

*** Don't forget to scroll to the bottom and pause the music***







After the zoo we headed over to Aunt Lissa's house to go swimming. If you don't remember we tried to get Arianna in the pool several weeks ago but the water temperature was very cold and after 2 minutes she wanted out. This time she had a blast!! She stayed in for 45 minutes until she began to shiver. Here are some pictures and a short video clip.










I can't wait to take her swimming again!

After we were done swimming I took her out of the pool and gave her a quick bath. The water was a little cold at first but I warmed it right up. We've always taken pretty warm baths cause I can't stand the cold water. After the bath I got her out of the bath and dressed my sister was holding her and I looked at her feet and they were BLUE!!! I don't know why this happened since she took a warm bath and the house wasn't that cold. I calmly freaked out, which I was really proud of myself, and got her wrapped up in a blanket. For a child that hates blankets she just stayed wrapped up in the blanket and didn't move. My sister took her outside to warm up and within 5 mintues her color was back. It was a total flash back to the weeks right before her surgery. I know it wasn't anything serious, thank God, but it made me realize, yet again, how fragile her life really is.

Besides that little incident I have to say Friday was one of the best days I've had in a VERY long time. After Arianna gets her shots, and I'm praying she does fine with them, I'm really going to try and start living a little more 'normal'..... if there is even such a thing as 'normal'.

One more thing I forgot to mention. The other night I decided to check Arianna's sats while sleeping and she was pulling a 94!!!! This just tells me her lungs are healing and all this isolation is really paying off!

Hope you all are doing well. I have some good news to report. Our heart friend, Drew, was released from the hospital on Friday but he has to stay at the local hotel. I know they are eager to get home but I'm happy Drew is actually at the hotel with is family instead of the hospital. He still has a PICC line that his parents have to administer IV antibiotics but they are the best parents and have no problem doing that themselves. It's been about 37 days since his open-heart surgery and I know his family is eager to go home. Drew has a few more tests to run next week and hopefully he'll get the okay to go home.

7 comments:

Tina:0) said...

She looks like she had a great time in the water & at the zoo. How did she react to that giraffe's tongue?!?!

I'm glad you were able to get out a bit & enjoy the day! By the sounds of the immunology report, you may be able to do more of that soon!

Give her big hugs from us!

XOXOXO

jencooper said...

How much fun!! What a great day!!

I had a long talk with Grace's cardiologist because she was turning blue in the tub too! He explained that it was because the warm water opens up her capillaries and the blood doesn't flow like it should...but that she was fine. She does it almost everytime we take a bath.

Thanks for sharing all of the awesome pics. She is such a cutie!!

<3,
Jennifer

Tiffers said...

Wow, that is good news about the t-cells. Harrison had his live vaccinations a year ago in August. We was almost two. I was nervous too. He did great. He did not get sick. Give it to God. He has gotten you this far. Good luck and we'll pray for the shots. Thanks for checking out Harrison's blog. We had an awesome time in Ruidoso. I only wish my husband could have gone.

mina said...

It's great your group is really getting organized! I'll be praying that the shots don't cause any problems. It's true, sometimes you just have to put your faith in things and leave the rest to God.

The zoo looks like a lot of fun!

The Portas said...

Cute swimming and zoo pics! Looks like Arianna was having a blast in the pool...soo sweet.

Try not to worry too much about the vaccinations. She has done soooo well and I just know she's going to do just fine with them.

The turning blue thing...ug, that brings me back to the days when we couldn't even give Elijah a bath without him turning blue. It's not a fun thing to see, so I completely understand the "calm freak out."

You're such a good mama. Keep up the good work! I'm so glad things are starting to get more "normal." Well...as normal as can be, right? :)

xoxoxxo

Tracy said...

How wonderful that you guys were able to get out and have some fun . Great news to hear that Arianna is doing so well too . Keep up the good work Arianna .

So nice you are able to get together with other parents that deal with what you deal with . I wish we had something like that where I lived .
www.caringbridge.org/visit/margaretreed1

Amyacl said...

I'm glad to hear that the meeting with the immunologist went so well! I'm sure things will go smoothly with the vaccines, and after that it will be great for you and Arianna to be able to get out more. Looks like she had a great time in the pool, and I'm sure that more fun things await you this summer!