I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, March 25, 2010

Really Touched

Last night when I logged on to my blog I found this comment left on a post:

"Hi, my name is Maegan and I am 14 years old. Recently my biology teacher asked us to write a children's book about a genetic disorder, so I chose Angelman Syndrome. In doing my research, I came across your blog. I was so inspired by Alex's story that I decided to base my book on her, and I dedicated it to her and your whole family. She is an amazing girl, and I think she's doing absolutely great. Tell her to keep up the good work, and I'll be praying for your family."

----Love always, Maegan R.

How sweet is that? I really can't tell you how touched I am by that. It's weird sometimes when you think about having a blog and not knowing who is reading all about our life. We all know how special Alex is, but to know that she's touching people we have no direct relationship with is really inspiring for me.

So Maegan, if you're reading this, thank you so much for your comment, you have really touched my heart. I would love for you to contact me and I would LOVE to ready the story you wrote. Thank you for choosing Angelman Syndrome as your topic and helping to spread awareness!

Tuesday, March 23, 2010

One Week Down, Two to Go!

I had planned on blogging about Alex's first week of intensive before today, but Zach threw a little kink in my plans and has wound up with strep...AGAIN!

Overall, Alex is doing GREAT at therapy. I am SO proud of her and how hard she is working. We're still having a lot of trouble getting her to bear any weight through her arms, but her stamina this time around is completely stronger. I remember her first round of intensive therapy she barely made it through a two hour session and now she's getting through three hours with with flying colors. I got to spend most of the day at therapy with her on Friday and she and Shannon get a lot accomplished.

She works on her walking...

She rides her bike...

She works on tall kneeling...

She works on side sitting...

And I had to take a picture of her during stretches - you would NEVER know she has low trunk tone...she can hold herself in a half sit position for literally minutes...talk about abs of steal. It baffles me how she can do that, have such defined muscle in her trunk, but have absolutely no sense of awareness of it when it comes time to stand, sit, etc.

She also does a wide range of exercises in the 'cage', but I had to run up to her school because she is missing 15 consecutive days of school they are un-enrolling her from the school...long story, but I didn't get any pictures of her cage exercises. You can kind of see her new haircut in these pictures too. She was getting so upset every time her hair needed to be put in a ponytail that I just decided to chop it all off...she looks so much more grown up with her hair in a bob.

On to my most exciting news of all...we went to the feeding clinic on Friday and Alex gained 15 ounces. Not that impressive, but with all of her exercises and just now getting consistent with almost every feeding by mouth, it's a start - and she didn't loose so that's a positive in itself. I don't have a picture of it, but in feeding therapy we are working on Alex drinking from a squeeze bottle. We're using it with every meal she eats too so we basically squeeze a honey thickened juice or water into her mouth and verbally prompt her to swallow. At this point, we jut want her to realize she has liquid in her mouth and to swallow it, not actually suck in up through the straw herself. When we met with the nutritionist, I was floored by what she said...she said that if Alex starts actually drinking from the squeeze bottle, consistently, that she will be weaned from her last two feeding tube feeds and those will be replaced by pediasure in the squeeze bottle. If she consistently does that, and gains weight, she could potentially have her feeding tube removed in a year or two....HOLY COW!!!!!!!!!!!!!!!!!!!!!!! I NEVER, EVER thought I would hear those words!!!! I clearly remember a nurse telling me how one of her patients that was thirteen had just had his tube removed and I remember thinking, how lucky for him, we'll never get there...and now we just MIGHT!!!!!! It is truly amazing how one person can change your complete mood and make you feel so elated with just one sentence!

Thursday, March 18, 2010

What A Busy Day!

Intensive Therapy for Alex started at 9:30AM, Zachary had a half day of school and got out at 11:15, therapy was over at 12:30, home for a real quick nap, then off to feeding therapy at 2:45, Zach to the dentist at 3:00, then Alex to the dentist when Zach was done at 4:00...whew. I normally take Alex and Zach to the dentist across the hall from our pediatrician, but since our dentist is 40 minutes from the house, I decided to try the dentist at Children's Hospital since Alex was there any way for feeding therapy and I could get three appointments done at the same time to try and save some time, and travelling.

The dentist, Dr. Bortel, at Children's Hospital was phenomenal, she was amazing with the kids. For some strange reason, Zach was really excited to get to the dentist - I'm not sure if it's because Alex always is the one that has an appointment to get to that he thought it was pretty cool that he actually he had somewhere to be, but either way I'll take it because he had zero anxiety about going.

All clean!

Alex thought the whole process was completely hysterical - I think it was the suction tube that she thought was so funny - but because she has so much drool, she tends to have a lot of tartar build up. The dentist wanted to use a deep suctioning tool on her, but because she's an aspiration risk, she couldn't so she asked me to hold her head and just scraped away the old fashion way.

Overall, the dentist was a big hit with both kids!

Tomorrow is another busy day - Intensive Therapy from 9:30 until 12:30 and then we have to head back to Children's Hospital for Alex's Feeding Clinic appointment at 1PM. I'm anxious to see how this appointment goes since it's her evaluation, and the last time we went she had actually lost weight. Her eating has been so great that I'm really going to be discouraged if she hasn't gained anything - no pressure or anything!

Tuesday, March 16, 2010

Intensive Physical Therapy

Yesterday Alex started her three week intensive physical therapy session at Richmond Hope Therapy. Last year Alex really did great, despite several set-backs. Basically Alex will go to Hope for three hours a day, five days a week for three weeks. While her strength is improving all the time, she is still really weak when it comes to using her arms for anything, especially weight bearing through her arms to support herself in a sitting position. So, on top of the suit therapy, cage exercises, walking, bike riding, standing and sitting, Shannon is going to be working a lot with upper body strengthening. Whew - I get tired for Alex just thinking about it! Yesterday she fell asleep as soon as we got home, but her nap was short lived because she had to be at speech therapy. She was in bed asleep for the night by 6:15PM - and with the time change, it was really only 5:15!

I'm happy to say that we have Alex's old speech therapist
Beth back while Alex's current therapist is on maternity leave...we LOVE Miss Beth! It was really exciting for me to have Beth see her again after six months because Beth was really impressed with how far Alex has come in so many areas. It's hard for me to loose sight sometimes of just how great she's doing because I live it day to day with her - so to see Beth's excitement and have some reassurance does wonders for the soul!

Here a few pictures from when I snuck in for a few minutes yesterday - pay no attention to her hair! If anyone touched her hair yesterday she freaked out - complete with real tears and all.

The hair is fixed - the tears flowed - but eating makes everything much better!

Friday, March 12, 2010

Alex's BFF

Alex's respite worker, Jennifer (I hate calling her that - more like Alex's buddy!) and her best friend Jule's 'buddy', Sarah are sisters and last week they wanted to get the girls together to have a quasi slumber party. They were both in their pajamas and they had dinner together, did an awesome art project together, played and watched a movie. It is really heartwarming to see how much the girls enjoy each others company. Any time Jule can, she crawls as close to Alex as she can and they just smile, giggle and 'talk' to each other. I never tire of seeing the two of them together.

Here's Jule and Alex as soon as they got to our house...

Here's the girls watching Elmo - I laugh at this picture because they're both staring at the TV, both have their legs up and both have their chewy's in their mouth...two peas in a pod!

And here are the girls 'talking' to each other...

...and clearly enjoying their time together!!

I love this picture of Alex working on her homemade tambourine - just look at the concentration on her face - NOT to mention the fact that she's actually HOLDING the marker - fine motor skills at their finest!!

I think it's safe to say that Alex had the best time!!
Thank you so much Jennifer and Sarah - you guys ROCK - we love you!!!!!

Wednesday, March 10, 2010

Life Lessons

When I picked Zach up from school yesterday and asked him the standard "How was your day? Did your bear stay on the honey pot?", he gave me this uh-oh look and told me his bear went to the cave...not good. So after a brief conversation with his teacher, turns out Zach was a chatty cathy which was distracting to the class, and was somewhat disrespectful to his teacher. I was so upset with him that I didn't talk to him on the walk home from school and by the time we got in the house he knew I was MAD. I have to admit I yelled - really loud - and I know I might have overreacted a little bit, but he was sitting at the kitchen table just crying his eyes out. We went to pick Alex up from therapy and when we got back I told him he could read a book while I got dinner ready, but then he was eating, writing an apology letter to his teacher, taking his shower and going straight to bed. By 5:30, he was in bed! About an hour after he was in bed I walked upstairs to give Alex her medicine and he was sitting on the edge of his bed and asked if we could talk. Boy I was not prepared for the conversation that followed. I told him why I was so upset with him and we started talking about the "golden rule" and how you need to treat others the way you want to be treated. I asked if he would like it if he was trying to talk to his teacher and she was ignoring him and making funny noises and talking to other people while he needed her attention and he said no, that that would hurt his feelings - so that was our starting ground for the conversation. He then started talking (and everything I'm about to say are his words exactly) about how everyone needs to have a kind heart, that some people can be so mean that it leaves others heartbroken. He said one day at the pool last year he heard a boy say (about Alex) "why is that girl here, how is she going to get in the pool?" and he said I know Sissy heard that and it probably really hurt her heart. He then started talking about how it didn't matter what language you spoke, if you had light skin or dark skin, if you wore glasses, spoke funny or even smelled bad (had to chuckle at that one) that everyone is special in their own way and that just because people don't look or act like you does not give you the right to be mean hearted. After we talked for about an hour he asked if we could say his prayers - he prayed for the people who are mean hearted that they would become nice, he prayed that the people who got their feelings hurt and had broken hearts would feel better and he prayed that everyone would feel special. He then apologized for his behavior for the day and promised to have a better day tomorrow. I was so touched by his sincerity and compassion. I gave him a kiss and hug and told him how proud of him I was and that I really enjoyed our conversation. I really wondered when I walked out of his room who was more impacted from our conversation. While I started out being really angry with him, I left his room really proud of him. I seriously think a lot of people could learn a lot from my 5 year old.

Monday, March 8, 2010

Celebrity Reader

On Friday my dad volunteered to go to Alex's classroom to be the celebrity reader. None of us said anything to Alex about her beloved Papa coming to school, so she was so excited when my dad snuck up behind her and did their special little whisper. Not only was her Papa there, but he read her most favorite book of all time to the class....Dogs Colorful Day - I have no idea what it is about that book that gets her so excited, but she LOVES it! I take that back, I know part of it is that Dog gets all messy during his day and at the end of the book he gets a bath - and that is CLEARLY her most favorite page...one of the characteristics of Angelman Sydrome is a major fascination with water - bathing Alex is quite a feat because she goes absolutely manic in the shower, so I suppose she's just really excited for dog that he's getting bathed! After the book it was time for the chocolate chip cookies that Papa brought for the class to enjoy - I think Alex thought she died and went to heaven!

Seriously, can you not feel the love there?!?

Changing gears for a second - Saturday night I was getting Zach ready for bed and he said "Mommy, is crap a bad word?" To which I replied, "Yes, Zach, that is a bad word and not appropriate for you to use" to which he replied, "Well sorry, it just what I feel like right now"! It's times like that when you know you shouldn't laugh to encourage the behavior but I couldn't help it and busted out laughing! :)

Tuesday, March 2, 2010

I'm Published!!!

A few months ago I started thinking about my blog and about how upset I would be if this website ever went down or if I lost any of my pictures and posts. In some way, this blog site is a legacy that I can leave behind for Zach and it was really important to me to try and find a way to preserve all of my posts. So I started doing some research and I found this really cool website that converts your blog to a book - there were lots of options and different features and after a month of working on it and tweaking it just so, I hit the order button. The book arrived today and all I can say is it is AWESOME!!!!!! It came out so great and it was so incredibly affordable. I am so excited that I know have this tangible book for Zach to look back on! I will definitely be printing out each year going forward. If anyone has any need to print any type of book, I highly, highly recommend blurb.com!

Monday, March 1, 2010

2010 Angelman Syndrome Walk-A-Thon

The 2010 Angelman Syndrome Walk-A-Thon is going to be on May 15, 2010 in Washington DC and we are SO excited to once again be participants in this awesome event. If anyone would like to be a part of Team Allie Bean, please let me know - I promise you it will be an experience you wont forget! Here is the link to our fundraising page if you would like to sponsor Alex in the walk, or if you would like more information on Angelman Syndrome or would like to know how to participate in the walk.


If you have not seen it before, here is a video from the 2009 walk.