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.***

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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!

Happy Father's Day!

When we went to our 17 week ultrasound and found out about Arianna's heart defects it was (at that point) the worst day of my life. I was SO happy to find out we were having a baby girl but so scared for what the future would hold. When we got home I completely lost it. I remember laying in bed for hours upon hours, just crying and crying. The whole time I was breaking down, Robert was there holding me, comforting me any way he could. I know he was dealing with alot emotionaly as well, but he did all that he could to make sure I was okay.

Robert has always been a very strong individual. When times would get rough during my pregnancy I would turn to him for support and strength. I knew I could get through anything if I had him by my side. Then once Arianna was born I realized how much I would really need his strength in the months to come. I couldn't of asked for a better father for Arianna. I know if she could talk she would say the same thing. We love you so much Daddy, Happy Father's Day!



I also want to acknowledge my own father, who's name happens to be Robert as well.(Makes family gatherings a little confusing. LOL!)

I personally know what it's like to have a dead beat for a father. I'm just so thankful my mother remarried to Robert and gave our family the foundation it needed. Anyone can be a father, but it takes a real man to be a Dad. Even though my relationship with my dad wasn't great growing up, we have the relationship now that I've always wanted. I finally see all the things he was trying to instill upon me were for my own good and these are the things I want to instill upon Arianna. So thank you Dad, for always being there for me and being such a comfort these past few years. I know if it wasn't for the Christian background that you instilled upon me I wouldn't be able to cope with the challanges of raising a special child like Arianna. I love you. Happy Father's Day!


To all the Father's out there...Happy Father's Day!

CHD'ers are everywhere!!!

So I decided this afternoon when Arianna was taking a nap that I would lay in the bed with her and relax. I was flipping through the t.v. and ended up watching some show about the Backstreet Boys. I was about to change it when I noticed a brief caption about one of the members needing to have surgery, then they showed a image of the heart. I ended up changing the channel and when I came back it was already talking about Brian Littrell having heart surgery. So I went online and googled his name and ended up at his Myspace page, which lead me to his band website, then to the Healthy Heart Club website. I found out that Brian was born with a VSD, which required open-heart surgery at the age of 18. He was right in the middle of his tour with the Backstreet Boys when he was told surgery was needed. He didn't let this get him down. Not only is Brian continuing recording with the Backstreet Boys but has also released his own Christian album. The Brian Littrell Healthy Heart Club for Kids offers education, exercise, nutrition, and counseling to children ages 8-12 who suffer from a heart condition or have a strong disposition towards developing heart disease. I think this is a wonderful thing Brian is doing and I couldn't pass up the opportunity to share it with you all.

Tinkerbell

I guess I'm in a picture kind of mood today. So here are some more pics of Arianna, aka "Tinkerbell"

"Musician in the Making"

I've decided to learn how to play the keyboard so I can teach Arianna when she's older. Besides I just LOVE music. My parents are both musicians and I've grown up listening to my parents play all my life. Arianna just LOVES playing the keyboard so I thought I would share some cute pictures I just took. I'm working on my computer and she wants to play so I have her sitting right here next to me playing. She's having so much fun!

Pictures

I haven't posted pictures in awhile so here are the most recent pictures. Hope you enjoy!

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I've been tagged!

I have never heard about being 'Tagged' but apparently its something us blogger do. So thanks to Krista....I've been tagged!

What was I doing 10 years ago today?

Wow...to be honest I really don't know. I was 13 and probably hanging out with friends or doing homework. Boring I know.

Five things on my to-do list today?

1. Go to a meeting tomorrow at the hospital to get care packets in the PICU & try to get our visiting program approved! (So excited!!!)
2. Set up a Zoo Day for the support group. (Mended Little Hearts of Tucson)
3. Mop my floors.
4. Finish organizing my office.
5. Fold laundry...just heard the timer go off.

Five snacks I enjoy:
1. Grapes.
2. Edamame (I see Megan like these too!)
3. Fiber One chocolate bars (Krista...aren't these addicting!)
4. Bagel & cream cheese
5. String cheese

Five things I'd do if I was a millionaire

1. Tithe to church.
2. Buy a new car (Our 2 cars are still not running....ugh!!!)
3. Put money aside for Arianna's college fund.
4. Donate to CHD research!
5. Pay off debt.

(So much more I would do...like give money to my family.)

5 places I've lived

1. Taos, NM
2. Albuquerque, NM
3. Alamogordo, NM
4. Chickasha, OK
5. Tucson, AZ

Five people I tag:

1. Kathy
2. Mina
3. Hollie
4. Amyacl
5. Samantha

Tomatoes & Salmonella

Tomatoes eyed in Salmonella cases in 9 states

If you haven't read this article I suggest you do. I know this is kind of random for me to share but having a child who loves tomatoes and has a weakened immune system makes me want to share with with you.

Arianna is doing great. I finally got our camera to download so I'll post some pictures later today.