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.

Cardiology Appointment

First of all, I know this background is pretty bright but I let Arianna pick it out. This is her blog so I wanted her to have on here what she wanted. I'll probably have to change it soon cause the hot pink is going to kill my eyes. LOL!

For not being a morning person I sure did have a good morning. I was up at 5:45am, got a little work done, got showered and ready then woke Arianna up around 7:30 to get ready for her cardiology appointment.

I was a little picture happy today so you get lots of pictures in this post. :)

(Unfortunately you will see her silly forced smile in all these pictures...what a nut)

Arianna always has to check out the fish before we go back into the cardiology clinic.

Waiting for our doctor to come in and yes I lysoled every toy before she played with them.

I'm really wanting to get pictures with all the people that have taken care of Arianna. I was sad to see our favorite nurse Gab was no longer at the clinic.

This is Lori the social worker. Arianna has always loved this lady. She comes into every appointment to say hi.

Dr. Klewer taking a listen to Ari's heart.

She even lifts her shirt for him. He thought that was too cute!


Finally...a picture with the best cardiologist ever!



On exam she sounded good but he wanted to get a quick pep at her heart so we had a very quick echo done. As you can see she cried through the entire thing. We'll have to start working on practice echos at home.

So her right ventricle only went up to 22 mm dilated, which is only a 1 cm increase. YAY! She has the tricuspid regurgitation still and because of that they are able to estimate the right ventricle pressures to be around 28 mmHg, which is pretty good. I asked what the magic number would be as far as pressures go till we would know she needed surgery. He said the echo cannot give us exact right ventricle pressures so we would have to do a cardiac MRI to know that....but not for a LONG time! Before he has mentioned possibly doing that around 7-8 years old. He said if Arianna gets to the age where she can sit still for 1-1/2 hours in a MRI machine we could do that but he's thinking more around 9 years old. Of course that is if she contines to do well and no significant changes happen before that time. So we PRAY nothing changes.

I did ask about EKG's and he said he normally does check ups every 6 months and alternates between "checking the plumbing and checking the electrical system." Love how simply he puts that. So next time she will have an EKG done to see how she is doing there. Because she had the VSD patched she has what's called, right bundle branch block. This can cause arrythmia problems as she gets older. I've known of a 19 year old boy with TOF who died because he had arrythmias that were not detected. This is why it's so critical for people born with CHDs to continue cardiology followup once they get out of pediatric care.

On a side note, I mentioned to him about the pulmonary edema the pulmonologist said she had. Well....our cardiologist thinks that is incorrect. He said he has reviewed Arianna's x-rays himself and does not believe that is the case. I told him how the pulmonologist is always asking when the next heart surgery is scheduled and he didn't seem to like that very well. So...what am I to do now? Should I call the pulmonologist and tell him what our cardiologist said??? I'll have to do some thinking about this but when it comes to those lungs I believe they will heal over time. I have prayed and prayed and prayed over this and I will not longer let it worry me anymore. She is a blessed child of God and I will not allow myself to get caught up in all this anymore. We will continue to stay secluded at home for the rest of the winter and when summer comes....WATCH OUT WORLD HERE WE COME!!!

So after our appointment we went outside to enjoy the nice patio for a few minutes. Here is a picture of Arianna loving on her Grams. I just LOVE this picture and she sure LOVES her Grams!

Here she is giving her silly smile again.

Then on the way home we stopped at Burger King to get some lunch. I know not very healthy but she loves their french fries. These are the cutest little (well not so little) glasses that came in her kids meal.

So I sit here at home feeling extremely blessed. I have the most precious child that is happy and healthy....what else could I ask for. :)

CHD Awareness Party

Here are the pictures from our CHD Awareness Party. For those who don't know Feb. 7-14th has been proclamed "Congenital Heart Defect Awareness Week."

This is our very 1st NICU Care Bag our group has made. We made a total of 20 bags at our party to hand out to several NICUs in Tucson.

Nana (my grandma), Arianna, Bryce (nephew), Robert (my Dad)

Bryce (nephew), Papa (grandpa), Arianna, Shawn (nephew), Robert

Yvonne (my mom), Me, Melissa (my sister), Arianna

Arianna & Esella (heart healthy)

Everyone enjoying some yummy food!

Smile

Isn't that just a beautiful smile?

This is the picture that really got me questioning Arianna' smile. I've noticed for awhile that she has an asymmetric smile. So I started looking into it a bit and was shocked to find out that children with 22q11.2 Deletion Sydrome can have what is called "asymmetric crying facies." This is actually one of the symptoms that alot of children have that has lead to a 22q diagnosis. I feel bad cause I thought for awhile that she was just trying to make a silly smile for me....nope...this is just her natural beautiful smile!

I'll post the rest of our party pictures in the next post. I use this blog as a journal for myself. It's really amazing to go back and read all that has happened....and new diagnoses...over the past 2 years.

We started our day out way too early.

So I work after Arianna goes to bed. Some nights I can't sleep and will work till 2 or 3am. Well Robert had to go to work at 4am today so we was up about 3:15 this morning, let the dog out and she started barking like crazy. The dog woke up Arianna at 3:30 and I tried to get her back to sleep but she was wide awake. I needed to finish a report for work so I put her in the living room with cartoons and worked another hour. By this time I was dead tired but my baby girl just sleep for 7 hours and was perfectly fine watching cartoons.

We ended up watching a movie and I finally crashed about 7am for a few hours. I woke up in the panic mode because I don't remember Arianna falling asleep. She was lying there in a funny position and it worried me. I called out to her and she didn't move. She didn't look like she was breathing...okay complete panick mode kicks in. I shake her...nothing....this time I shake her while I'm screaming her name....NOTHING....I'm crying hysterically thinking the worst has happened and I was the horrible mother that was just sleeping next her while this happened...then she took a deep breathe while I was putting my ear to her chest to listen for breathing. Panic mode over....but I'm still crying. I NEVER want to wake up like that again. Maybe I'm just too high strung or something but this is not the first time this has happened to me. Remember the Robert waking me up incident a few months ago.

Robert got home and let me take a nap. I did a quick run to Wal-mart and now we are getting ready for dinner.

I'm going over to my sisters house tonight for a few drinks with the girls, which I think I really need at this point.

I know I've promised pictures and I'll get those to you shortly.

Pulmonology update

Thursday was our 6 month follow up with our new pulmonologist. :) We absolutely love this new doctor. When I used to visit the PICU I would see him all the time and he is just the kindest doctor.

So....after his examination he said she sounded great! I told him about the croup she had and he wasn't too concerned. We had the oxygen and pulse ox machine at home to manage it so there was no big concerns for recurrent episodes if that happens. (Megan I know you've dealt with your share of this with Elijah)

One thing that shocked me was when he asked if she coughs at night. Well, she actually does. I asked if that is a symptom of asthma and he said it was. Can you believe that? I had NO idea. I know she has been diagnosed with asthma after her bronchoscopy but to me she has never shown symptoms so I rarely think about it. He asked how often this happens and I told him honestly I can't tell you because I never paid much attention to it. He told me from now on if she coughs at night to give her the albuterol inhaler and if that helps get rid of her cough to keep it up as needed. So the past 2 nights I've been paying attention to this and guess what...she coughs before she wakes up. This is a child that has NEVER slept through the night. So now I'm thinking...HELLO it's been her asthma acting up this whole time. Yeah, you should of seen the light bulb going off inside my head. The more I started thinking about the past year the more it makes sense. She likes to be held in an upright position sometimes at night and that has to do with her needing to get more oxygen into those lungs.

So.....I will no longer deprive my child of her much needed asthma medication. I'm not sure about continued use of Albuterol since this is an inhaler. Is there anyone out there that has a child with asthma? If so can you tell me what type of inhaler your child uses on a daily basis. :)

Then I asked about preschool. That's right I said it....PRESCHOOL. No...I do not want her to go to preschool but when she turns 3 she will loose her early intervention program and if she still needs therapy we will have to take her to a public school for that. The Arizona Early Intervention Program likes to start prepping children for preschool about 6 months before they have to go. I know we have a few months before we would have to start anything like that but I've also learned with a DiGeorge child you can't just ask 1 doctor if you can do something, you have to ask several. So this is how I ask....."From a lung (or heart, or immune system, etc.) perspective can she go to preschool?" So the answer is.....yes...if the class is no bigger than 5 children. That will be pretty hard to find in a public school so I'm not banking on her going to preschool when she turns 3. Also, she turns 3 in November during RSV season and she will not be getting her synagis next year so I'm not comfortable with that anyways. So we have decided she just needs to do more playdates. So if anyone lives close and wants to get together just give me a holler! :)

Next week we will be seeing cardiology (my stomach is already in knots) and ortho but I'll post again tomorrow with the pics from our CHD Awareness Party.

I just had to show you the tattoo I put on Arianna tonight. It says "Mended Little Hearts" the name of our support group. She thought it was SO cool!

Arianna is doing great! She was doing so good that she was able to spend the night with my parents on Saturday night. Me and Robert had a much needed parents night out :)!

We ended up not going to Roberts aunt & uncles house because someone down there has a cold but we were able to go to his brothers and watch the super bowl. What a game! Cardinals lost but they sure played good.

We are actually getting ready to take Arianna for her synagis shots. :( I feel so bad cause she knows where we are when we walk in there and what they are going to do and she will start crying immediatly. Hopefully we'll just get in and out today.

I'm glad she is getting her synagis (RSV) shots today because tomorrow is our CHD Awareness Party for our support group and there is about 40 people coming. I honestly can't believe that many people are coming since we have had such a small attendance lately but it will be alot of fun! I'll have to post pics on Wednesday for you all to see.

Well better finish getting ready. I've been so busy planning this party and working (thats right I'm officially working) that I haven't read up on any of our heart buddies. So...you all better be behaving!