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.

Miss Cranky Pants

The titles speaks for itself. I have Miss Cranky Pants on my hands today. It started last night when we laid down for bed and Arianna threw up in our bed. After a complete change of clothes and bedding we laid back down and she went right back to sleep. She felt a little warm but doesn't have a fever. She woke up in a good mood but did have a runny nose. Since she wasn't too bad I was able to go to church. Yes, that right, I actually went to church this morning! Instead of going to the normal church I attend I went to Word in Season to hear David Huskey minister. This is the pastor of the church my family attended when I was a child when we lived in Taos, NM. I even went to kindergarten at this church! I have to tell you this is a man of God and if your ever interested in getting some good teaching material check out David Huskey Ministries. I got some teaching CD's and books this morning and already listening to the first CD. Since I can 't attend church every week I think its important to constantly be listening to the Word, whether it's through reading your bible or listening to teaching tapes. I know sometimes I get off track but it should be the most important thing we do in our lives if we want to live in his glory. I'm not perfect by far, believe me I have a long way to go, but if I stay focused on what's important in life than I know I'm going in the right direction. One thing that really bothers me with Christians, and people in general, is that they don't call on God until they are in a crisis. I was that Chrisitian...it touch my daughter being diagnosed with a heart defect to really have to reach out to him and put my life and the life of my daughter in his hands. I have to tell you, I wish I would of done that along time ago. Don't wait until something bad has to happen to get closer to God. We need to wake up every morning and thank God for what we have, instead of complaining about what we don't have! Wow...didn't expect to go off, guess I just needed to get that out!





So after church I was able to go out to eat lunch with my parent and Pastor Huskey and was blessed by the presense of such a wonderful man. When I got home Arianna was sleeping on her Daddy and these are the pictures Robert took right before I got home.

She kicked Daddy out of the recliner! :)

She ended up taking a 20 minute nap after I left for church. Robert gave her some motrin and she went down for a 3 hour nap. She woke up in a good mood but still not 100%. She still has a runny nose, mainly when sneezing, so I'm hoping it's not a cold. No cough or anything else so I'm chaulking it up to teething. She did have a really good dinner tonight, which is always nice to see her eat so well. Hopefully it's just these darn teeth and she will feel better by tomorrow.

**For all that have been praying for Drew I really appreciate it. He is recovering in ICU from his 3rd open heart surgery and still intubated. His body needs to get used to the new anatomy. Please keep him in your prayers as he might be extubated (breathing tube taken out) tonight or tomorrow.**

***UPDATE***

Little stinker..as soon as I'm done typing this post I check her temp and she has a low-grade temp, so I just gave her some tylenol and hopefully that will help.

Prayers for Drew

Please pray for one of our heart buddies, Drew. He is in the operating room right now having his 3rd open heart surgery. I know how strong the power of prayer is....so please stop what your doing and say a quick prayer.

AHA Breakfast

Arianna, Mommy, and Mayor Walkup

This morning we attended the American Heart Association breakfast to promote the 2008 Heart Walk and I got an opportunity to share Arianna's story. I wanted to bring awareness to the public about congenital heart defects. Too many people take their health for granted not realizing how many kids are out there fighting for their lives. This is something Arianna will have to deal with the rest of her life. If I touched just one person today than it was worth it. Mayor Walkup was the keynote speaker and then I went up after him. We were able to speak with him and found out that his granddaughter was also born with a CHD and had open-heart surgery at 2 years old. He asked if Arianna had a scar on her chest and I showed off her zipper. He said, "This is a badge of honor and she is a very brave girl." I was so touched by him and feel like he truly understands what we went through as a family. Then his assistant told me it wasn't until her brother was 16 years old that they discovered his heart defect. He had open-heart surgery at 16 and today is in his 50's and living a full life. It was so nice to speak with other families that have been affected by CHDs, and who knew it would be the Mayor of Tucson.


Since the AHA is campaining their 2008 Heart Walk, which will take place on May 3rd, we will be getting a group organized to participate in the walk. If you live in Tucson and would like to get involved please contact me.

This leads me to my next subject. I have decided to start a local support group for CHD families. I have contacted Mended Little Hearts and decided to work with them in forming this group. This is still in the beginning stages and I am trying to get the word out about the new group. I have been in contact with Arianna's cardiologist and he is willing to be a clinical liason for the group and help out any way needed. Once again this man shows what a great doctor he is and how blessed we are to have him in our life. The AHA asked today if they could do a newspaper article on Arianna to promote the AHA Heart Walk in the next few months. This will be another great way to bring awareness to the community and at the same time get the word out about Mended Little Hearts. I am very excited and looking forward to what great things 2008 will bring. Last year we spent most our time feeling scared, alone, and overwhelmed with emotions as Arianna went through surgery. Starting this year I want to bring support to other CHD families in Tucson. I look forward to meeting other heart families and sharing our experiences together. You may never realize what you capable of until you step out and try. Please keep me in your prayers as I embark on this new journey.

Thank you all for stopping by and checking on us. Please keep our new heart buddy, Drew, in your prayers. He goes in tomorrow for his heart cath and I know this is a stressful time for little Drew and his family. We put him in God's hands and know that tomorrow they will receive a good report.