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***

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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.

Pics of the day

Arianna's early interventionist, Sherri, loaned us this really cool play hut. Today was the first time I put it together. Its two separate pieces but can be velcroed together. She's been having a blast. Thought I would share some pics!

In the newspaper!

I was contacted by the local newspaper last week wanting to do an article on Mended Little Hearts. I have already been contacted for a possible fundraising opportunity which I'll tell you more about at a later time. Here is a link to read the article.

http://www.azstarnet.com/allheadlines/244892.php

Climbing on couch

I was trying to post this the other day directly on the blog and was having trouble. I completely forgot I could post it this way so here goes. I finally have the cable to download video so I'll be posting more video. This was the very first time Arianna climbed on the couch. Of course she can't do it alone cause she needs something (someone) to hold on to. I still am amazed. Check her out!

***Make sure you scroll to the bottom and pause the music so you can hear her little voice.***

Make photo slide shows at www.OneTrueMedia.com

Nutrition appointment yesterday

She actually let me put this head band on her. It's been a challange keeping it on though!

We finally got approved for 4 more session with the nutritionist. Last time she was here was March 11th, so it's been almost 3 months since our visit. Arianna weighs 19 pounds 6 ozs, which is just 2 ozs shy of gaining and entire pound in 3 months. So as you can see she gains very slowly. I was really hoping she'd hit the big 20 but looks like we'll have to wait a few more months. Arianna did grow 3 1/2 cm's in length and is at 30 inches tall! Her head circumference is 45 cm's and I'm not sure if thats good or not. Her melon looks good to me! :)

The nutritionist was very pleased with her progress and acted like she didn't need to come back. This lady is always this way but I just keep pushing her to come back. Since we have only 4 sessions left I think it would be a good idea to see her every 2 months. Plus it gives Arianna some time to pack on the weight. So hopefully we'll be having the big 20 party in August!!!

Short lived

Apparently the bed doesn't make a difference. Arianna is still sleeping in our bed. I try to soothe her back to sleep at night but she still wants to be in our bed. Oh well...it will happen one day.

Speaking of sleep...or should I say NOT sleeping. This is the second day in a row that Arianna hasn't taken a nap. I have to admit it's kind of nice cause she goes to be by 8pm. I have a feeling it's just because we've been around my nephews the past two days and she rather stay up and play. We'll see how she does tomorrow.

I don't have much to report around here. We have a couple of heart buddies in the hospital: Drew (poor thing has been in the hospital for several weeks), Elaina, and Isaac. Please say a prayer for all three of them.

Big girl bed

As you all know Arianna has been sleeping in our bed for the past 9 months, actually it's more like her entire life, cause she was always back and forth between her crib and our bed. Last night Uncle Chris brought over a toddler bed to see if Arianna would like it. We'll just let the pictures speak for themself.

As you can tell she LOVED it! She really needed a bath so after she laid on her bed for a few minutes I asked if she was ready for a bath and she shook her head 'no'. She loves her bath time so I know the new bed was a hit. After a nice warm bath she was back on her bed.

We put her bed right next to ours so she was enjoying climbing up and down.

After 10 minutes of that I was able to convince her to lay in her own bed and fall asleep.

Doesn't she look comfortable?

Not only did she fall asleep in her own bed, she slept through the night, and it wasn't until 5am that I ended up putting her in bed with me.

This afternoon she took a 2 1/2 hour nap in her bed and I'm hoping for another successful night!