Today started out by taking Arianna to get x-rays of her knees and a blood draw. I felt so bad because I told her about the blood draw at home before we left and she gave me the sad face and said, "No!" Then she started telling me "boo boo knees" and I explained we have to get the x-rays (or pictures is what I tell her) of her knees and blood draw so we can try to find out how to fix her knees. She said okay but wasn't very happy.

She did excellent for the x-rays. Of course, Buddy, the x-ray man, is always so nice to her and that helps ease the anxiety. Then across the hall to the lab and as soon as we sat down in the chair she started crying. It was so sad to watch her go through this while I'm holding her on my lap and pinning her arm down. :( They should have the results back on her lab work by tomorrow so we will have the results for our doctor appointments on Wednesday.

On the way home we stopped by my grandparents house because Ari was saying "Poppy and Nanny" the whole time she was in the car. She sure loves her her Poppy and Nanny. She is so blessed to have 2 great-grandparents in her life that love her so much.

Then, my mom came over after work to plant some flowers with Arianna. This kid gets sympathy from everyone.

Grams also brought Ari a cool bubble blower. She loved it!

Then they got to plant the flowers...

It's 10pm and she just fell asleep. She was complaining about her knees again tonight, which has become a nightly thing. I hope we get some answers soon. I was told by a friend of mine that if a child has rheumatoid arthritis that the knee joints will be warm to the touch. I hate to say this but for the past 2 nights I've checked and her knees are warm to the touch. So, please say a prayer for Arianna that she does NOT have RA. I couldn't imagine having to go through your entire life with arthritis. I feel bad for anyone that is struggling with this disease.

We have nothing planned for tomorrow so it will be a nice day at home! :)

Afternoon at the park

I'll show our afternoon through pictures. It sure was alot of fun. :)

Arianna & Alyssa

Look what Ari caught!

She's a pro at this fishing thing. She must get it from you Papa. :)

Daddy & Ari fishing

Robert enjoying the afternoon by the lake.

Uncle Danny caught Ari another fish. She was petting it. LOL!

Now this is the sweetest picture of all. Alyssa helping Ari walk on the curb.

What a great friend!

In the end, our girls were tired & hungry. I can't believe Ari devoured pizza like this.

No more synagis :(

I am not happy at all. Arianna was denied for one more dose of synagis. She was suppose to get it on Monday but insurance is not going to pay for it. Since it's a very expensive shot we do not have the money to pay out of pocket. She will be covered on her current dose till April 6th then after that we will be even more careful about who she is around.

I can't believe she will never get synagis again. It was a miracle she was even approved for 5 doses this season. I know she will be happy to not get pocked any more...well except for the blood draw on Monday. So either way she wasn't going to be very happy about her Monday adventures. :(

We just got home from a wonderful evening at my parents house. Arianna fell asleep on the way home after playing hard all evening with her 2 older cousins. She sure loves those boys and I love watching her play with them.

Tomorrow is my Sunday to go to church. Me and a friend are checking out a new church to see if we like it. I'll probably stay at my original church since it's alot smaller and I am hoping to get Arianna into the preschool class on Sunday when RSV season is finally over.

Hope you all are having a wonderful weekend!

Knee pain

I'm not sure if I mentioned before about Arianna's leg pains. She has had leg pain the past few months during the night but this past month she is complaining about it during the day as well. The PT did an evaluation the other day and and I recently posted about that conversation so we are heading to ortho next week.



Thanks to another 22q mom telling me her daughter was diagnosed with rheumatoid arthritis I am a little more concerned there could be another underlining problem that is not being addressed.



I spoke with the pediatrician this morning and she wants to do x-rays of herknees and blood work. She said sometimes iron deficiency can cause leg pains,especially in the knees. She is also going to check her rheumatoid arthritisangitgen and inflammatory indicators. Not sure how long it takes to get thoseresults but we will be taking her in Monday for all of this and will follow upwith ortho and peds next Wednesday.I got some sad news that our pediatrician office might be closing down at ourspecial needs clinic. However, our pediatrician can still see us at thehospital. I am not big on taking Arianna to the hospital for general clinicvisits but I love this doctor and will do it. She is a huge advocate for Ariannaand really listens to what I tell her. If I research something and ask her tosee a specialist she is very open minded and at least gives me a consult.I'll keep you all updated on what happens.

1st Dentist Appointment

I can't believe today was Arianna's 1st trip to the dentist. My baby is growing up way too fast. She loved playing with the cool toys in the lobby. She wasn't trilled about going into the exam room and she cried almost the whole time to go back in the lobby to play with the toys. She is signing "toys" really well now!

I managed to get her to sit by herself for a moment to get this picture.

So.....the verdict is NO CAVITIES!!! I'm so proud of her. I brush her teeth twice a day and looks like it's paid off. The dentist did say her teeth are crowed which is normal for 22q kids. I asked if he's had patient with this before and he said yes, so that's reassuring. He said the main thing we have to do is keep up the brushing and start to introduce floss to her. She has 3 molars in and will be getting her 4th one in soon. Once the molars are in it will push her teeth closer together so we have to really start flossing then. Other than that, we don't go back for 6 months, at which time we will see how she tolerates things and possibly do her first cleaning. She will have to take antibiotics before any cleanings to make sure she doesn't get endocarditis.

Here she is with the toy she got from the dentist. She was so happy to get a dart board. Me and Robert have one in the garage and she always wants to play with us, now she has her own!

After the dentist we went to see a heart friend named, Gabby. She is 4 months old and is having surgery next Tuesday. Mom is very nervous, as well as the rest of the family. I just ask that you keep Gabby in your prayers as she gets ready to go in for surgery. This was our first time meeting this family and they were so grateful for the visit. I showed them Arianna's scars and they were all amazed at how well it looks. I even took her surgery pics to help prepare them for what they will see and they appreciated that very much. Gabby has an older sister who is 4 years old and Arianna had a good time playing with her. I told the girls we'll get together more after Gabby's surgery and they both were very happy.

Not much else going on here. I'm going to head down to the hospital later this week to visit some families and take more care bags. I really love doing this!

~My Princess~

Princess Arianna!

I bought this tiara with some decals she could put on and she loves it! Not sure if we will get it off to go to bed. LOL!

I was able to go get an oil change on my car which desperately needed one. Of course they told me I need $900 worth of other tune ups but I nicely declined. Robert can buy all the parts and do it himself. :) Looks like his next couple of weekends will be busy.

Oh....Arianna is over here asking where her toy is. Guess she thinks she gets a toy every time I go to the store. I just told her I bought finger paints so she is now crying to do that. Oh my princess....

Physical therapy

We have been blessed with the fact that Arianna has done so well with her gross motor skills that she hasn't needed physical therapy, except on an as needed basis. Since we are looking at losing our therapists we had one more visit with our PT this afternoon.

The past month or so Arianna has complained about leg pains at night. You can recall in my ortho appointment update that he didn't think this was a big deal. Well I have always been concerned about it. Not once did he suggest getting an x-ray or even do a full exam of her ankles. He said as long as she isn't complaining during the day then we should be okay.

Well...the past 2 weeks she has been complaining of leg pain during the day. Anyone with a child that has 22q knows this is a common sypmtom with our children that seems to frustrate many of us. Most of the time it's unknown what causes these leg pains and our children just suffer.

I have felt deep in my heart that something more serious was going on with her ankles that needed further care but I'm trying to let doctors be doctors. (Sorry Mina...you know I love you) However, we already know she has tibial torsion, ankle pronation, flat feet, low musle tone and hyperflexible ligaments (can't think of the medical term).

Seven months ago I asked about getting inserts for her shoes and the ortho said "no" but I could try and find better shoes to support her ankles. We found a place that can put in arch supports on any childs shoe and we got her a high top shoe.

We go back 6 months later and show the ortho the shoes and he tells us, "well she indeed has all of this medical stuff wrong with her and if she doesn't wear the shoes you got her I'm sure she will me in more pain." That irritated me to say the least. Why wouldn't you do more to help my child if you know all this is wrong?!?!?!

So our PT saw us on the news clip the other day and the first thing she tells me is, "So....I see Arianna is still W-sitting. This is really not good for her joints.

This is W-sitting.

I have noticed this week her right ankle pronation (inward turning) is getting worse and feel like no one is helping me on this. She palpated her knees and could feel some creeking going on with her right knee and tibia, which is not a bad thing, but it's also not good. This means she is damaging her joints. So...after everythin she said there are orthotics that can be specially made for children with Arianna's conditions and she is shocked Arianna hasn't already had them made for her. So, she came out this even and evaluated her and wrote up a nice note for me to give to our ortho recommending Arianna gets a Cascade SMO orthotic.

No, the cute frog doesn't come with it!

We weren't suppose to go in for another year but I feel this needs to be addressed or we will be seeing another ortho. We are scheduled for April 1st so we are hoping to get some answers and help then.

I've been trying to get pictures of Arianna with all her doctors and therapists so when I finally get to scrapbooking. Here is a wonderful picture of Arianna and her PT Diane.

You think Arianna likes her?

Besides all of this, earlier we went to a rally today for the Arizona Early Intervention Budget Cuts and got to share our story with them. There is talk that they might not cut this program because of all the fuss we are making. Keep your fingers crossed!!!

Bad girl....Good girl

I am definintly having my share of arguments around this house lately. This was the mess I walked into this afternoon. All her hair bands pulled out from the bottom shelf.

I asked her nicely to pick it up and she said, "NO!" So we had an hour long battle of time out and a few spankings. Arianna is just so stubburn. I feel like I need to start nipping this issue in the butt before she gets older. Well after some tears, from both of us, Daddy comes home and asks her 3 times and she picks them all up for him. AGH!!!

I have been having one bad week myself so I decided to splurge out on some Taco Bell. Robert decided to order Arianna a bean and cheese burrito. I thought he was crazy but sure enough.....

She loved it!

I'm still in shock cause she ate 3/4 of this burrito, half a bowl of pintos and cheese and some cinna twists!!! I know this won't happen all the time but I am so excited I had to blog about it.

I better get back to work but I just had to share our day with you all.

Hearing Test

Arianna had her annual hearing screen today and did great! She didn't cry and even let the audiologist put the ear plugs in without a fuss. I'm so proud of our big girl. The test came back great!

It was nice because the audiologist said she did some more reading on 22q deletion syndrome and feels confident that yearly vists will be best until 5 years old.

In the news!

We were given the opportunity to be on the local news talking about the recent budget cuts. Check out the video.

Click here for news clip.

Synagis today

Arianna had to get her Synagis shots today. :( No fun at all. Since it was such a beautiful day outside we decided to wait outside until her turn. She cried the second we walked in until she saw the monkey she loves. She has loved this monkey since she was a baby.

I wasn't sure what her weight was last month so when I got home and checked her records I was shocked to find out she gained....1 pound 3.5 ozs...which makes her 22 pounds 9.5 ozs!!! She has never gained over a p0und in 1 month ever.

This is her at home just being a ham.

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