31 for 21 Day 6

Today Addy's OT, Delene, brought her an early birthday present. A doctor kit!!! Addy LOVES it, she's been playing with the thermometer, shot and stethescope all night, how cute is that? Thanks Delene!

As you can tell by my previous post, Addy mutilated her glasses today. I'm not sure what's going on with her and her glasses. She used to never even touch them but for the past few weeks it's been constant. The scab over her ear appears to be getting better so I don't think that's it. She's supposed to go in for a six-month follow up in November, I think I'll see if we can move it up, perhaps it's the prescription, idk. A little DS info, the majority of our kiddos that need glasses are farsighted. Therefore, Addy isn't going to be able to see much until we get these fixed (again! sigh....)

Dr. Pierce, We have a PROBLEM!

31 for 21 day 5

Addy will only use this half hula hoop while playing Ring Around the Rosie. Her brother weren't too keen on helping with this one but they did! Addy wouldn't cooperate a whole lot but you get the gist of it! She is working on balance, strength, protective responses and singing all at one time :)

All Fall Down!!!

31 for 21 Day 4

I love how I can be working on skills with Addy and she doesn't even know she's working! This ball is a weighted ball so she is working on muscle strength, coordination, and following directions without even knowing it! If she knew it was therapy she would not be cooperating!

31 for 21 Day 3

She's so happy, she thinks she's playing!

31 for 21 Day 2 new braces

One of the things that Addy deals with due to her Down syndrome is very flexible joints and muscles. She has been wearing assistive devices in her shoes for over a year now. We are on our third set of "braces" she started with the AFO (Ankle-Foot Orthotic) then last spring she graduated to a Sure-Step. Lately she has been very defiant about wanting to bear weight on her legs when she is wearing her Sure-Steps. We noticed a couple of weeks ago that she was getting slightly red after wearing them for a while so it was time for some bigger ones. She has even stopped wanting to bear weight when she just had shoes on without the Sure-Step. So when we went a couple of weeks ago her orthotist suggested a UCB. I have no idea what that stands for but they are just inserts in to her shoe. Much less restriction than the Sure Step which makes us a little worrisome since they don't give her much support and her ankles do turn in pretty significantly when she is bearing weight. However, they do provide some support so we went on and ordered them. We got to the office and she would not even put her feet on the ground (she was wearing her shoes with her Sure Steps), We cut down her UCBs to fit her foot and she stood right up! Little stinker!! We have decided that it is definitely a sensory thing, this girl really HATES socks and shoes so less is more right now! We had to get a new pair of shoes since they are much smaller than the Sure Step and she could pull off her old ones with no problem. Aren't they adorable??? She really doesn't complain about wearing these very much so hopefully we are on to something!!!

We also once again went to the eye doc to have her glasses adjusted. She was so worn from them not fitting that her skin was so broken down above her ear it was bleeding! So she now has some silicone covers on the ear pieces, they seem to be more comfortable for her, hope so!

I just took a picture of her dresser because she is our Monkey Princess and it's just so darn cute!

31 for 21 Day 1!!!

I love October for so many reasons, but especially since it is Down Syndrome Awareness Month!! I get to blog everyday! Not that I couldn't blog everyday anyway, but this really gets me in the spirit too!

Yesterday I hinted that there was some news on Addy. First off yesterday she got to go to a feeding clinic in Springfield!!! That is HUGE since I have been trying to find someone close to take her to for several months! Addy's PT let me know of the clinic (she just found out about it), however, the catch was that you specifically had to ask your pediatrician for a referral. No problem there! Addy's ped has immediately written referrals for me so that was easy. I'm not sure why he never suggested it, I guess since she's g-tube fed it just wasn't thought of?? I don't know but I am thrilled that she got in!! Two weeks ago Addy's ST put some soy sauce in baby carrots and she went to town feeding herself!!! She NEVER does this!! It just finally clicked that food is for eating, even though she is presented food everyday, it had to be her idea and full of salt! I know it's not the best thing for her but it gets her to put food in her mouth!! I hadn't been sure that she was swallowing anything but yesterday during the assessment she did find that Addy has a functional swallow!!! Woo hoo!! We aren't going to do another swallow study anytime soon, she wants to progress with the actual feeding for awhile since when we did her modified in August of 07 when she pretty much had zero oral motor control and was not aspirating that we will hold off unless we see signficant signs of aspiration, choking or gagging. She recommends that Addy be seen weekly for one hour feeding sessions. I am soooo happy about this!! However, there's always a glitch isn't there?? We live about 45 minutes away and all of their after school appointments are taken for the entire school year!!! Addy's nurses can't transport her so scheduling is going to be a real nightmare. I can't take off work weekly to take her either so we're going to have to figure something out. I'm hoping that I can schedule on Mondays when my BFF is off, she graciously has offered to help when she can. We are also trying to look at times when Scott could take them before work and I can try to find someone to bring them back to Marshfield. I'm prayerfully optimistic that this will work out and we will get this little girl eating!!! She is so ready and that is so awesome!!!!!

I love how amazing Addy is! She got the nail clippers and was pretending to cut her toenails. She is always showing how she knows how things work! She is one smart cookie!