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.

Wednesday, May 26, 2010

Happy Birthday To Me!

Yesterday was my birthday and I have to admit - I'm not one of those people that dreads their birthday each year - I LOVE celebrating my birthday. Aaron and I went away Saturday night with our friends and neighbors to start my birthday week off and we had a great time! Yesterday I got to work and my friend Catey, an amazing pastry chef, made me this beautiful cake...

All of my girlfriends took me to lunch at my favorite restaurant and gave me the most beautiful cards and gifts - their sentiments really touched me.

I left work and got home and Aaron had balloons hanging on our mailbox and had gifts and a cake on the table waiting for me.


Sissy was very happy to eat the tissue paper in my gifts!

She loved the singing of Happy Birthday and held on to my arm the whole time...


Aaron got me two new Pandora charms (a girl and a boy to represent the kids) for my bracelet...

Jennifer helped the kids make me very special cards and she reorganized my pantry - NOT an easy task!

After those festivities I went and had dinner with my mom and sister, who as well spoiled me with beautiful cards and wonderful presents.



I truly, truly, truly, had an amazing birthday and feel SO incredibly blessed for all of the wonderful people in my life!

Tuesday, May 18, 2010

Field Day!

Last Friday both Alex and Zach had Field Day at school. It's times like this when it's really hard having two kids in two different schools! We wanted to be at Zach's school to support him in his first Field Day, but we also wanted to be at Alex's school cheering her on too. So we went to Zach's school first and watched his opening ceremony, which was soooooo cute - all of the kids from all grades did a synchorized dance (I think it was about 520 in total) to the Jackson Five's ABC and then Michael Jackson's "Thriller"...it was so good - and my little man has a bit of rythym!


After the opening ceremonies it was off to the relay races!


Field Day was definitely a hit with Zach, he loved it.


Then it was off to see Alex...coincidentally, both of the kids were on the "yellow" teams this year.

Huge kudos to Miss Ann, Alex's aide - they had to manuver through hula-hoops and then stop and do a little dance - she spun Alex around twice and her smile was as huge as it could be!

The next event was to 'fence' in pairs using a noodle. Aaron took one for the team and was Alex's partner and let her hit him several times with the noodle...I think it's safe to say she enjoyed that event too!

We took her out of her chair to stretch...

...and to let her hit Daddy some more...

but I think she's more of a lover and not a fighter and decided she didn't want to hit her Daddy anymore, she just wanted some hugs...

It was definitely a fun filled, very busy morning!

Sunday, May 16, 2010

2010 Angelman Syndrome Walk-A-Thon

Yesterday was the annual Angelman Walk in Columbia, MD. A very, very big thank you to everyone who made up Team Allie Bean and made the long drive to be with and support us, we love and appreciate you. A huge thank you to everyone who donated to the walk and Team Allie Bean. We raised over $2,005 for the important research that is underway for Angelman Syndrome and a cure.

Team Allie Bean was made up (from top left down) of my brother-in-law Shane, my sister Dana, Alex's friend Miss Jennifer, my sister-in-law Rebecca, my Aunt Barbara, my dad Joe, my best friend Dana, my mother-in-law Beverly, Me, Aaron, Dana's son Jonah, my niece Emily, my niece Cameron, Alex, Zach, my niece Mary Grace and my niece Abby.


As in the past, it was a special day and one that I look forward to every year. Here's a video from our day - I had posted before about the song that I used - I honestly don't think I could have written down my feelings as well as he's expressed them in the song. Alex is my true angel, I'm so proud to be her mom and I'm so blessed to witness how she touches so many people.

video

Wednesday, May 12, 2010

IEP Meeting and Other Random Stuff!

Today was Alex's annual IEP (Individualized Education Plan) meeting. I know a lot of people who have to deal with IEP's dread them, but it was a good meeting. I really like Alex's teacher a lot and I think she's very in-tune to Alex and her needs. She is truly a cheerleader for Alex. Her school physical therapist was in the meeting as well, and I'm really excited that we were all able to get on the same page with Alex's physical therapy goals. Currently Alex is in a box stander every day for 30 minutes with leg braces on - we've modified the goal to try and have Alex in the stander without the leg braces on, forcing her to bear all her weight herself, and upping the amount of time she is in the stander each day to 45 minutes. I am also going to bring her walker to school twice a week and they are going to incorporate walking into her daily routine. I brought the pictures and the system that we are using at home to work on picture communication and we are going to incorporate the same system at school and at home so that Alex knows exactly what is expected of her. I really feel like a lot of the pressure of trying to do it all by myself at home will be alleviated by incorporating these goals into her school day. We had a long conversation about how we typically give Alex a lot of slack and while we push her to a certain degree, we can certainly start pushing her a lot harder - she has the potential and we know she's capable...so I gave them my full permission to start a 'tough love' program with her...I think life as she knew it might be over - but it's a good thing! I'm waiting to have a conversation with the principal because I really want to hold Alex back this year. She has made so many great gains this year in so many areas, that I really feel like she will benefit from spending another year in the second grade and expanding on those skills before sending her to third grade where she will have to start a specialized state wide testing system.

I did hear back from the hospital today and Alex's Upper GI series is scheduled for Friday, May 28th. Seems a while to wait for me, but hopefully we can get some answers.

Changing gears for a second, I cannot believe how fast the kids are growing. Both of them have completely grown out of the clothes I have bought them for the Spring already. Zach's face is completely changing - every day I look at him and can't believe the little boy that is staring back at me. These two pictures are from Mother's Day and as I was uploading them I had to stop and stare at his face, he seems to be changing every day.





Three more days to our Angelman Syndrome walk in Maryland. I'm really looking forward it to - we've reached our goal and have raised over $1,450 and Team Allie Bean is 18 people strong this year!

Tuesday, May 11, 2010

Stomach Woes

For the past two weeks every time Alex eats, whether it's a tube feeding or an oral feeding, she winds up crying and rubbing her g-tube incessantly within 15 minutes of finishing her meal. It's gotten to the point that she's actually screaming with huge crocodile tears and is clearly extremely uncomfortable. I took her today to the Gastroenterologist to see what was going on. They sent us to x-rays to see if she's 'backed up' since she has a long history of constipation - the x -ray was good (which I wasn't surprised considering the poor thing had to have an enema last night - the true joys of motherhood with a special needs kid, let me tell you). They took a culture of her g-tube site to make sure there is no infection, which I seriously doubt since her g-tube site looks good (we ALWAYS get comments from doctors on how she has the best looking g-tube site they have ever seen) - she has no drainage from it and it's not looking angry, so I'll be really surprised if that comes back with anything. Next step is to wait for radiology to call me tomorrow to schedule her in for a gastrointestinal series where they will shoot barium through her g-tube and watch to see how everything is moving through her intestines and make sure there is no blockage.

Have I mentioned in the past that Alex being non-verbal is probably one of the hardest parts of dealing with all of her medical issues? I hate that she can't tell me what's hurting. She is such an amazing trooper with all she has to deal with.

Friday, May 7, 2010

Nutrition

Well, finally some news on the nutrition side. We met with the nutritionist Thursday after her feeding therapy appointment and Alex has, drum roll, gained ONE POUND, ELEVEN OUNCES since her last appointment (which was only a little over a month ago)! Of course it can't be as simple as "she's gained weight, awesome, be on your merry way" - what fun would that be? Now she's gaining too much weight too quickly. Not enough weight, too much weight...shees! The really, really good side to this is that we are FINALLY starting the weening process from her night time tube feeding - it's actually happening! She's actually eating enough by mouth and actually gaining weight, that we are really, really starting the weening process...really! I guess you can tell I'm pretty excited about the news.

Happy Mother's Day!

Tuesday, May 4, 2010

Feeling A Little Frustrated....Again...

Today I was on a field trip to the Richmond Zoo with Zach and I wasn't going to be back in time to take Alex to Physical Therapy so it was up to Aaron to take her and pick her up. God love 'em he does an awful lot for our family, but when it comes to Alex and anything medical or therapy wise, it normally falls on me. So I get home from the field trip and it also happens to be a day that Zach has a play date with a friend from school that has never been here, nor has ever experienced Alex, and he is clearly unsure of what to make of her...anyway...Aaaron walks in from Alex's physical therapy appointment very frustrated. First words out of his mouth, "We are not doing enough with Alex's walking and Shannon says we're basically throwing all of the time and money we've spent on her intensive therapy out the window." Deep breath on my part...first, I'm exhausted from the field trip with Zach and trying to wrangle four boys at the zoo all day, second, I have not been feeling well the last two days, and third, I totally, whether he means it or not, feel completely attacked that this is a personal jab against me since I'm pretty much the one that does all of her physical, speech, occupational and feeding therapy. I ask him for more details, but before he can even explain, I'm on the defensive. I've been feeling very overwhelmed lately, and I already know this conversation is not going to help matters. For heaven's sake, not to sound too sanctimonious or anything, but I have A LOT on my plate. Alex goes to school five days a week, I also work those five days a week and manage my 'typical' five year old's Kindergarten schedule. I take her to therapy three days a week, spend an hour each night preparing her food, and Zach's lunch for the next day, homework, housework, laundry, have been working on her picture exchange communication, her sitting, her standing, her eating, her drinking, her overall PT, and somewhere in there I want to throw in just being her mom for heaven's sake and not having to wear some sort of therapist title...how much more can I do? I'm trying to maintain a 'typical' family life with my ever demanding, but very loving, very needy five year old, I'm trying to be a mother, daughter, sister, aunt, friend, classroom mother, neighborhood board member, office manager and every other title I can fit in, and now, all of sudden, I'm thrown back to when I realized Alex wasn't 'typical' and I'm feeling so overwhelmed and frustrated again, a place I really haven't been in a long time...a place I don't know where to fit in.

I called Alex's PT and had a talk with her tonight and I felt a lot better after we spoke. She doesn't feel like Alex is regressing, but feels like her potential is a lot further than its ever been, and that's when then I realize that maybe that's part of the problem. Alex has NEVER, in eight years, been so advanced in so many areas that I just honestly don't know what to focus on. Shannon reiterated to me that I need to change things up, and that I just may need to focus on different goals on different weeks, something I'm clearly not used to doing. I have Alex's IEP meeting in two weeks and am hoping to incorporate some of her PT goals into her school day so I can focus on other areas at home. It's so exhausting trying to figure everything out and making sure I'm not dropping the ball in other areas.

Sorry for the down post, it's just where I'm at right
now...