Approved....

for Synagis!!! (RSV shots)

I got a call from Los Ninos (the clinic we've gone to the past 2 years for Arianna's synagis shots) telling me we needed to schedule an appointment. I was excited but then asked her to double check that we were approved cause no one from the pediatricians office has even called me about this yet. She double checked and we were approved for 5 months!!!!

After the excitement wore off I felt really bad because this means Arianna will have to get 2 shots every month for 5 months and these shots hurt cause it's a thick serum. Then she gets an extra shot in December at her 2 year old check up. Oh well, it's better than a hospital stay with multiple blood draws, IV attempts, etc.

It's rarely heard of for a child over 2 years old to get approved for synagis so we are extremely blessed.

We go in November 10th for her first round of shots. I'm so happy her little lungs will be protected from nasty RSV this year. :)

And for your picture fix, here is a picture of Arianna watching Wubbzy on my computer.

Nothing new to report here. Arianna is growing up more and more every day. I'm constantly amazed at all the new things she is doing. Like this morning I was getting ready and I walked in the living room and there she was skipping around the room. She totally cracked me up.

She has not been eating very well again, which really drives me crazy. All I want is for my little girl to eat. UGH!!!

I went to the hospital for a few hours this afternoon to attend a meeting with some of the pediatric cardiologists. This was for our support group and I have to tell you it was so great to see the doctor that took care of Arianna after her heart surgery. He recently retired so I wasn't expecting to see him there. Of course Arianna's cardiologist was there and he took it upon himself to introduce me and said alot of nice things about me. He makes me love him more every time I see him. Shhh...don't tell Robert.

After the meeting I visited with several families in the PICU. There is one foster mom whom I visited with over the past several weeks and today while talking with her she asked if I was a co-founder of Mended Little Hearts of Tucson. I told her I was the founder and she was very impressed. She wanted to know more about my situation and my daughter. I told her Arianna has DiGeorge Syndrome and she totally freaked out. A friend of hers, who is a foster mom as well, has a 15 year old boy who has a very rare case, he has DiGeorge and partial Down Syndrome. I never even knew that was possible. I guess he's on IVIG, has severe sinusitis, was born with a very rare heart defect (but she didn't know what), and several other things. Anyways, I gave her my number to pass on to this woman and I hope she calls me. I've never meet anyone locally who has a child with DiGeorge Syndrome.

I took this picture cause my friend gave me some clothes since her daughter is 4 months older than Arianna and I didn't think this outfit would fit on her. It's a size 2T! I know some of other 2T pants don't fit her but I was still excited to see her fit into this outfit.

And check out my new license plate!!!

I ordered it last month and I was so excited when it came in the mail the other day.

Trip to the Pumpkin Patch!

Today was our Mended Little Hearts trip to the pumpkin patch. I put a montage together to show you all some pictures. We had a great day and ended with a very tired little girl.

****Scroll down to the bottom and turn off the music first****

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New Pictures!

Family Picture

Just the kids!

Arianna ~ 22 months old

I went to pick up our pictures today and they had the order wrong. We only got one 8 x 10 of Arianna so I'm really irritated. We ordered another 5 x 7 and several wallets. Of course the lady tried confusing me saying this is what I ordered and instead of blowing up and causing a scene, which I so badley wanted to do, I just left. We just need to buy some ink for our picture printer then we can print some up ourselves. They just don't come out as nice. :(

My baby is growing up....

I have to admit life has been rather normal for us. I've been trying to get Arianna out as much as possible before we start hearing that RSV is here. We see the pulmonologist the first week of November so we'll see how secluded he wants us to be this winter season. I'll probably still keep her out of grocery stores, church, and over populated places no matter what.

Yesterday we went out to lunch with a girlfriend on mine and I remembered to bring the camera along this time. Of course I couldn't get a very good picture of her but I thought I would post on anyways.

She is getting SO big!Today at Wal-Mart we were looking at what kind of cups to buy Arianna. I figured it was time to try and move up to the bigger kids cups cause she is doing really well drinking out of regular cups. Of course she picked out the Dora cup. I gave it to her tonight and she did really well with it. I'm so proud of my baby girl for drinking out of a big girl cup! Looks like I'll have to go back and stock up on these.

This is the face I get when I say "cheese" for pictures.

I think she was just as excited about her new cups as I was. My baby is growing up....

Talked to pediatrician

I spoke with the pediatrician today and these are her exactly words, "Arianna will always be a mystery." She honestly said she is not completely familiar with Arianna's cardiac structure but feels reassured that the cardiologist didn't do anything when I told him about her eyes at our appointment back in August. Arianna's eye were better today so I wasn't as concerned but I wanted to talk to the pedi anyways. A few of you asked if Arianna is on any medication and she is not. The doctor said to call if she is having a decreased urine output or the eyes get worse.

Yesterday we visited with our occupational therapist and one thing I asked her was if Arianna would benefit from a medication called Periactin. This medication is used sometimes to help stimulate a person's appetite. The OT thought it might be beneficial but wanted me to talk with the pediatrician. So I asked her about this today and she felt it wasn't something Arianna needed. Arianna is not underweight, just on the smaller side. She doesn't eat well but she does eat when she wants. I'm perfectly fine with that because I've heard this medication can have cardiac side effects and I really didn't' want to worry about that.

So.....we don't see the pediatrician till December for Arianna's well-child checkup. :)

Puffy eyes

I forgot to put this in my last post. Arianna has been waking up with really puffy eyes the past few days. She normally wakes up puffy then about an hour later she gets better, normally after a really good pee. (Sorry but its true) Well yesterday we slept in till 12:20 (I know...crazy huh) but she was really puffy all afternoon. Even my mom said something to me, which made me feel better that it's not just me. Well I've checked her pulse ox and guess what she was at....98%!!! I decided to check her again when she feel asleep and she was satting at 92%, which I didn't expet to be that low since while awake she was pulling a 98%. We see pulmonary in a few weeks so we'll see what he thinks.

So today after getting Arianna's flu shot I told the nurse about this and she asked if she is eating alot of salty foods lately. I told her no and then she tells me, "Well you have a well-child check next month so I would bring it up then." As a heart mom, you can't just sit here for a month quetioning if there is something more going on. Do any of you heart moms know what could be causing this? I know this means she is retaining more fluid but I'm wondering why? We don't see cardiology till February and going into the winter season I'm a little freaked out. I'm also freaked out because I still haven't heard back about Synagis shots for this winter.

Urology Appointment

This morning was Arianna's follow up urology appointment. It was the biggest waist of my time. First of all I got the results of Arianna's renal (kidney) ultrasound last week so I knew her kidneys were normal. YEAH! Then we get there and wait forever to see the doctor just for him to walk in and say, "Okay...we're following up from last year. Did she get her ultrasound done?" And I reply with, "Yes, last month. Do you not have the results?" I decided to hold off telling him I already have the results cause I was curious if he was going to ask us anything else. For those who don't know Arianna was born with hydronephrosis of her left kidney but resolved on its own. This was a year follow up to make sure it still looked good. So he walked out the room to try and get the nurse to find the ultrasound results. He walked back in 15 minutes later, without looking at me in the face one time, and says, "Well this all looks normal. You don't ever have to come back", then walks out. I could of just called and told him that. I get so frustrated when doctors don't even give you the common curtousy to ask how she is doing or if I have any questions. But whatever...

Then we walked up stairs and Arianna got her flu shoot. I gave her some Tylenol before hand but she is already cranky. If I can remember right she was like this for 24 hours after her last flu shot. Shes crying and keeps signing "more" over and over but won't tell me what she wants more of. Better go figure it out.

Playdate

Arianna had a playdate yesterday with a friend from our heart group. Here are a few pictures of Arianna and Sofia playing. It took about 20 minutes for Sofia to feel comfortable with us. She hasn't been around of alot of kids either. It was good for both of them. Check out the pouty face on Arianna. She was not into sharing the toys. We are definintly into the "mine" stage. We'll have to work on that a bit.

Speech Therapy

These are just some pictures from todays speech therapy. Arianna LOVED the jack-o-laterns. She carried ALL of them around with her the entire time. Pretty funny. The ST was really happy with her progress. She says Arianna is falling in the 18-21 month range with her speech.

Then she had some cake!

Susannah got her new heart!

Our heart buddy Susannah got her new heart! (link to her page on the right)She is 4 years old and really needed this transplant as her heart was failing her pretty bad. She came through surgery well and her mom says she is so "PINK"!

Ever since I've followed Shawn's journey through his transplant I know how rocky things can be. Please keep Susannah in your prayers.

I'm also following a little boy named Manning who received his new heart last week so please add him to your prayer list as well. I haven't talked to his mom yet so I don't have a link to his site on our page.

Bracelets & Bugs

Arianan got some really pretty bracelets and a bunch of bugs (butterflies). She is SO excited and has been playing with them for the past 30 minutes. Just thought I would share some pictures and a quick video.

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Shoes, turtles, and bugs!

We officially lost Arianna's only pair of tennis shoes. They were the cutest little Nike's ever and I am totally bummed that I lost them. So yesterday while we were out I stopped at Michael's Shoe Store and got her a new pair of shoes. I was so amazed with the service I received at this store. The owner, Michael, was there and I told him exactly what the orthopedic doctor wanted and he examined Arianna's feet himself. He is a board certified podiatrist which also made me feel good about this guy. I told him I needed to find shoes with arch support and he said there are no kids shoes with arch support until like a size 10 or something, which isn't the first time I've heard this. However, they can actually put arch support inserts in the shoes themselves. Since she has such a narrow foot they added this extra strip of padding to the tongue and a piece of corck by the toe (I know I never new a shoe could have so much done to it), but the end result was perfect. Oh yeah....I also found out she should be wearing a size 6, not the size 4 I've had her in. Wow...I feel horrible now. When we got home I was making her run around to catch me and the first thing I noticed was how her gait immediatly improved. Her legs were closer together and she could actually run better than before. I am SO happy I stopped at this store and got her the shoes she needed. I just wish they didn't cost as much as my shoes seeing how she'll be growing out of them evey few months. For those interested the shoe brand is Mobility. I couldn't find anything on it online but they look like the regular white walking shoes. I'll have to take a picture and show you next time.



This one's for you Kathy! Sorry it's a bath video. Arianna is just going to kill me when she gets older. :)

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I just LOVE this picture!

For the past few weeks Arianna has been working on saying the word 'bug'. Well she finally can say it perfect and that's what I hear from the moment I wake up till the moment she goes to bed. It really is cute the infatuation she has with bugs right now. I think I'll have to buy her a bug catcher cause she just can't get enough of them. Then it made it all that more exciting when we found a caterpillar the other day.

So...I was sitting here on the cough tonight and realized she has a ladybug costume from last Halloween. Robert didn't think it would still fit her so I went to check it out and.....

it fits. Well sort of. It's too short on the arms and legs but she still thought it was pretty neat for about 1 minute, then she started screaming to get it off. Of course I had to get a picture anyways. I know...mean mom. Can you tell in the picture she is pointing to something. Yep...it was a bug on the wall.

I thought I would post a picture from last Halloween as well.

After I took the costume off she ran around like a wild child (seems to be the norm around here -this girl has been testing me lately). I didn't hear her for a few minutes and when I walked in the living room this is what I found.

She fell asleep watching her bug on the wall.