My girl is back!!!

Thankfully, my girl is back! She didn't even need her inhaler today. She has a little cough every now and then but nothing too bad.

Ever since last week she has this redish patch of skin under her right eye that goes up the right side of her nose. She always rubs her nose, which I'm curious if she has allergies to something, but now I'm wondering what this red patch is from. After seeing Isaac the other day I'm thinking it just might be a DiGeorge thing. (He is looking much better Kathy!)

We saw Arianna's occupational therapist today and did her find motor evaluation. I don't think we have ever done one of these. I am SO proud to say Arianna is scoring at 28 months of age. She is only 27 moths old so that is wonderful new! Janet doesn't even think she needs OT anymore but with all the state budget cuts she is still going to put into our insurance to approve 6 visits a year. This way she can continue to see Arianna every few months, even after she turns 3 years old. Wow...my baby will be 3 this year!!!

I got a picture of Janet and Arianna today.

Then this afternoon we went to meet a co-worker of mine from Utah who is visiting her in-laws just down the road in Corona de Tucson. We meet her at the park but she didn't bring her children because they were napping. (Naps...what are those?!?!) Arianna had a blast and went on the slide several times and LOVED the swing. Of course I forgot my camera so no pictures. :(

I'm not sure if I've told you all lately, but Arianna speech is really taking off. She is repeating more of what I say. The other day is was "bucket water" and today it is "orange pumpkin". I got her on video....she was being shy for some reason. The part where she is screaming is her saying, "Daddy look!" I know I understand alot of what she is saying but alot of people still cannot.

Make an on-line slide show at www.OneTrueMedia.com

Yesterday was not a fun day for us. Arianna was on and off oxygen all day. She at one point needed 3 liters which is high for her. She had a fever all day and night. We've been keeping the Albuterol going and I think that is helping. I did a really good tape job with the cannula last night cause it stayed on all night.

Today was a much better day and I know a good night sleep with some good ol' oxygen helped out. She was actually playing and running around today. The fever is gone and the runny nose is going away. The cough is alot better and not as frequent.

My mom and grandparents came over this afternoon for a little bit and she loved having the attention.

Since Arianna's oxygen tank was almost empty we had the home health people deliver a new oxygen concentrator today. We have never used a concentrator before but I asked for something that is easier to move around. The tank we had was 4 feet tall and I wasn't able to move it around if I needed. This one is smaller and on wheels. The nice thing about this is we don't have to refill it since it gets the oxygen from the air. :) One less thing to think about for me.

I cannot believe it but she stayed up till 11:30pm. I am so tired and ready for a good nights sleep. I have her on the monitor and she is border line with her sats right now. Thank you for all the thoughts and prayers. I'm finally coming to terms that this is our "normal" when Arianna gets a cold. It's just so frustrating because I don't know what is wrong with her lungs. I'm just asking God for a miracle.

Sick

Arianna is officially sick. :( She was up majority of the night coughing and crying. We started her Albuterol last night and she is finally starting to warm up to using the inhaler.

I gave her some tea and cereal this morning and she threw that all back up. I just hate seeing her this way. I just got her down for a nap and her sats are in the mid 80's so out came the oxygen. She freaked out again the second I put the cannula on but I can tell her breathing is much better with the oxygen so I'm hoping she wakes up feeling better.

Upset

I am so upset so I'll have to keep this short. I recieved a call from Ariannas OT telling me the state is cutting the budget for the Arizona Early Intervention Program. They are completely doing away with the birth to 3 years program. WHAT THE HECK?!?! (I wanted to use a different word but I won't) So many children NEED that program. I know if it wasn't for AzEIP Arianna would of had a feeding tube and would not be where she is with her speech.

They are having a press conference tomorrow which I was planning on going to but not now since Arianna is sick. I will, however, be going to the "Meet Your Legislature" meeting on Saturday to voice my opinion. This is just outrageous.

I did get a call later tonight from our Early Interventionist saying their specific organization which is not apart of AzEIP is going to keep seeing children regardless until the end of their fiscal year which is June. Arianna would of been graduating from this program at 3 years old anyways but it's still upsetting because she needs all the help she can get before she turns 3 cause she will not be able to get therapy in the school system due to the germ factor. AAAAGGGHH!!!

So...I'm extremely upset and just had to tell you all how much I hate all of this.

Genetic Appointment

We had Arianna's annual genetic appointment this afternoon. I forgot to take my camera so there is no pictures.

This is normally a very uneventful visit. He said she is doing great and thinks this will be a great year for Arianna.

He commented on next year doing preschool but I told him how we have to wait and see at this point.

Of course he wanted to have his residents come in and meet Arianna. I guess there was just a baby diagnosed with 22q deletion syndrome the other week who these residents got to meet so he wanted them to see a healthy 2 year old with 22q. :) That sure made me feel good.

Speaking of healthy...he are not so healthy at the moment. She started with a runny nose yesterday. Oh...and get this...I took her out the day before to 3 stores so you better believe I'm feeling horrible. I was just so sick of living in fear of taking her out that I just did it and now I'm feeling bad.

She woke up with a fever of 101 and the Tylenol took care of that. But silly me forgot to give her the next dose before the doctor appointment and I took the Tylenol out the bag so by the time we were at the doctors office her temp was back up. No coughing as of yet. Her sats were a little on the low side this morning but rebounded just fine. I'll keep checking her throughout the day and especially at night. Okay...now she is trying to prove me wrong...just heard a little cough. Please pray this doesn't get worse.

Happy CHD Day!

I know I'm a little late but Happy CHD Day!

This year we took balloons to the children at UMC. We also baked cookies for the nurses. Here is a picture of Arianna baking the cookies.

As you can see we did the easy cookies. :)

Arianna had a blast with all the balloons in the house. Here she is Friday night having fun in the living room.

~Cyrus & Arianna on CHD Day~

My family helping me take balloons to the children. Unfortunely, my mom was the one taking the picture and she was the one who helped me the most. You rock Mom!

This was one of the most rewarding and fun things I've ever done. I can't wait to do it again next year at the new Diamond Children's Center.

Orthopedic Appointment

Yesterday was Arianna's the orthopedic appointment. Here is a picture of her being silly in the doctors office.

We had to get scoliosis x-rays before we saw the doctor. I even got a picture of them together.

Dr. Nielsen & Arianna

This doctor has actually had several DiGeorge patients and he was very impressed to see how well Arianna was doing. He checked the x-rays and she is at a 10 degree curve for her scoliosis. He said this is nothing to worry about right now.

I did ask about her leg pains and he has a pretty good theory for this. Of course it cannot medically be proven but I'll share for any other DiGeorge families that are having the leg pains. He said since Arianna is extremely flexibe in her joints and has low muscle tone that during the day her joints are not secured in place as well as a normal child would be. Therefor they rub against each other. Then at night when she stops to rest her joint are hurting. I'm not sure if Arianna's pain is in the joints but this will be interesting to find out when she is older to explain where the pain in coming from.

Other than that we don't have to go back for 1 year. YAY! He just told me to ben her over and check her spine in about 6 months to make sure there is no bump. If there is then I need to bring her in because that would be very bad. But I know my baby girl will be just fine.