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, April 30, 2009

Catching Up!

How did it get to be Thursday already?!? It's been a busy week! On Monday, Aaron was given an award for the work that he does. The awards aren't just given out freely, so I'm really proud of him. He works really hard and it was nice to see him recognized.






Monday night we went to register Zachary for KINDERGARTEN. How did that happen?!? I can't believe he's going to school. I told him I was sad because I had no more babies and he told me it was ok if I still called him my baby...just not in front of his friends. :)


On to the girl. She has been giving me a run for my money this week! When we started the weaning process of the feeding tube during the day, Aaron made several comments that he was concerned about her feeding pump running all night and the possibility of her getting all tangled up in her feeding line while she was asleep. Well, Monday night we woke up at 2AM to a loud crash. We both bolted out of our bed and down the hallway to her room only to find that she had been moving around and got the feeding line wrapped around her neck. She tried moving again but it was so tight around her neck that there was NO give left in the feeding line so it actually pulled the IV pole down onto her bed. Not a fun way to get adrenaline coursing through your body at 2AM! Back to Zach for a second - Tuesday he was outside in the backyard playing on the swing set while I was inside feeding Alex. I checked on him and then went to give Alex her water flush and change her diaper. Went back to check on him (about 10 minutes had elapsed) and I couldn't find him - any where - (the backyard is fenced in and I knew there was really no way he could have gotten out of the yard). After running all around the house I ran back out into the backyard to finally see him curled up in a ball at the bottom of the back of the swing set. I ran and picked him up and he was breathing like he had the wind knocked out of him. He had fallen from the top of the climbing part of the swing set and had hit the metal rungs on the way back down. Minus the bruised head and arms and a sore belly, he's fine, thank God - but don't think for a minute between Alex on Monday night and him doing that on Tuesday that I wasn't seriously checking the mirror for gray hairs on Wednesday morning!!

Back to Alex...she had NOT been sleeping for the past week - waking up two, three and four times a night - crying. It felt like we had a newborn back in the house. I think I finally figured out that we were giving her way to much food. I was following the weaning program we got from Children's Hospital that was supposed to be 1400 calories a day. I sat down Wednesday and figured out the caloric numbers she's been getting daily, and she was getting almost 3000 calories a day...I don't even eat 3000 calories a day! So I'm pretty sure she was waking up because the continuous feed all night long was really causing her stomach to expand too much and she was uncomfortable. The night before last I stopped the continuous night feeds and she's slept all night through. She was at the pediatrician yesterday because on top of being miserable from her allergies, she's got a cold as well. I guess it's really no wonder she hasn't been sleeping!
That's all the time I have for now! :)

Saturday, April 25, 2009

Little Feet Meet

I cannot begin to tell you what an awesome day we had. Alex participated in the Special Olympics Little Feet Meet at Freeman High School this morning, and all I can say is, Wow! It's times like this when I feel like I am so lucky to be Alex's mom. I definitely have days when I have the pity party and I feel like life is unfair and it's just too hard sometimes. But then there are days like today when I'm forced to stop and reflect on how lucky I am to be her mom and how lucky I am that I get to be involved in such awesome events like today. To be able to be surrounded by so many exceptional kids and their families is such an honor for me. The innocence and inspiration of all of the kids is just such an indescribable emotion. To watch my child throw a tennis ball and to cheer, and have others cheer for her like she just won a Nobel Peace Prize is, well, extraordinary. Something so many take for granted, but few take as a huge milestone, and get it, is awe inspiring. I left the Little Feet Meet with such a spring in my step that it's really, really hard for me to put into words. I hope this video gives a tiny glimpse into the great day we had.

I'd love to thank Mrs. Gibbons-Plowcha, Alex's teacher, for coordinating and keeping the group together and where we all needed to be...all of Alex's therapists who worked so hard to help her practice for today, and of course all of the aides and fifth grade buddies who really just made our day....to Miss Katie Estes, Alex's 'old' (she's way younger than me!) home school teacher for telling me about the Little Feet Meet, Miss Audretta - Alex's nurse who we have so much love and respect for, and all of the volunteers at Freeman High School...especially the boys who ran the Parachute table that were INCREDIBLE, and everyone else who had any part of the amazing day we were able to share as a family today. I am definitely looking forward to next year's events!

video

Wednesday, April 22, 2009

Angelman Syndrome Walk-A-Thon

On Saturday, May 16th we will once again be walking in the annual Angelman Syndrome Foundation Walk-A-Thon in Washington, DC. Each year thousands of people across the United States walk in support of the ASF's mission to improve the lives of individuals with Angelman Syndrome. We are excited to be participating in one of the 24 walk locations.

Recent research suggests that there could possibly be a cure for Angelman Syndrome within the next 10 years. To try and not be excited about that is impossible!

Although Alex's diagnosis is clinical at this point, further research may give us the definitive answer we've been looking and hoping for. Right now it's where we 'fit', where we get our support and information, where we're accepted.

If anyone would like to walk with us this year, please let me know - we would love to have you join our "Team Allie Bean". It will be an experience you wont forget anytime soon! Below is a link to our fundraising page (which also links you to a registration page if you would like to walk), a link to the Angelman Syndrome Foundation if you would like to learn more about AS, and a link to the video I did from the 2007 Walk-A-Thon.

http://www.angelman.org/teamalliebean/

Thank you so much for all of your support!

Biopsy Results

Just a real quick post...

Dr. Kessel called last night to tell us, as expected, the biopsies were negative - whoo hoo!

Tuesday, April 21, 2009

Parenting A Child With A Disability

A mom from my Angelman Syndrome listserve posted this essay on her blog. It's a moving essay that was in RealSimple magazine. It's written by Judith Scott, who is the parent of a child with a disability.

"Our lives, my husband’s and mine, fill with the role of parenting a child with disabilities. We become champions of the cause, joining groups, researching new developments, taking part as vocal advocates for our daughter’s rights. Sometimes this all feels fine and we soar with competence, proud of the manner in which we are managing. Sometimes it chafes, this role for which we did not volunteer, and we are quietly resentful, then guilty. My friends say they don’t know how I do it, my family say they are so proud, and I thrive on the accolades, smile a bit brighter. But behind that smile, a ghost lingers, and the loss of the perfect life I had planned sits heavy.

Before Emily, there was a woman who was a teacher and a wife and a friend. Now there is just Emily, and the woman struggles for her bearings, tries to find her footing. I see this woman in the mirror one day and take a long moment to recognize myself. It is time to find the “new normal” that will define my life. I search for the thing that will make the difference. At first, it is running, the simple act of lacing up my Sauconys and hitting the road. Exercise helps and heals. Running segues into racing, and although not an athlete, I train and plan and accomplish modest goals. Local 10Ks and marathons expand my world, and I embrace it with unabashed selfishness.

Running makes me brave, and although life with Emily is still turbulent, I have a renewed confidence. Another daughter comes along, followed by a son, born almost exactly 10 years after Emily. We cobble together a family, now not so much defined by the disability within it but by the love despite it. Emily’s siblings speed through typical development without a hitch, gladdening my soul and adding another layer of respect for my firstborn, who struggles so. The pain diminishes, and acceptance comes in.

My husband and I always mock the fuss made over graduation celebrations. We wonder when graduating from elementary school became such an occasion. Surely no one put on the ritz for us, back in the day. But times change, as they will, and the day is upon us, as Emily nears completion of fifth grade. This milestone day is marked by students all dressed up, speakers who wax nostalgic, and a video montage of the kids’ elementary-school years.

I sit in my cushioned seat, only half-cognizant of the speakers’ words. I wonder how Emily is faring backstage with her class, lined up for the processional. Her full-time aide is there to assist her, but still I am anxious, twisting the program into a wad on my lap. Finally it is her turn to cross the stage, and cross it she does, with a nudge and whispered directions. From stem to stern, it is perhaps 100 feet, but Emily’s journey is more than that. The outgoing class stands to recognize her walk; they cheer, holler her name.

Who knew that an elementary-school graduation, rife with its tired clich├ęs and tacky streamers, would crystallize all those years of searching for peace? For now, in this moment, on this day, it is finally clear. I was mistaken. The albatross of disability in fact turns out to be a strand of uncultured pearls, each in its varied imperfection a pure and precious gift. No class I have taken, no country I have visited, no book I have read, has taught me more. This child who does not speak, who does not fit in, who is different wherever she goes, is a lesson to me."

Thursday, April 16, 2009

Endoscopy Today

Today was the much anticipated endoscopy. We had to be at the hospital at 8AM and her test was scheduled for 9:30AM. The whole surgical team could not have been nicer - everyone from the registering to anesthesia nurses to the Dr. were great and so tender with Alex. The only part that really, really stunk about the whole thing was that they took Alex from us. Last time she went under general anesthesia we were at a different hospital and they let us go back with her, get her changed into a gown and let us be with her while they put the mask over her face while she went to sleep. Today they just took her after we went through her medical history and vitals. I know where Alex is 24-7 - so to just pass her off and have them tell me to go get a beeper and they'll beep me when she's done and someone will bring me to see her in recovery left me with a weird feeling.

On to the test...She did great under the anesthesia and it took a little less than hour. The bleeding from her stomach is coming from an ulceration in her ostomy (the surgical hole created for the gastrostomy tube). The ulceration is healing itself so no cortorization was needed. Six years ago Alex had a surgery called the Nissen Fundoplication which basically controls reflux. Sometimes the nissen can come loose, but the Dr. confirmed that Alex's is still in tact. The Dr. also took a biopsy of her esophagus and small intestine. The biopsy of the esophagus is to see if she's having any acid related issues and the small intestine biopsy is to rule out Celiac Disease or H-pylori, however the doctor is pretty confident those will be negative.

When they went to wheel Alex away from me I was kneeling down next to her wheel chair and I gave her a kiss and she pulled me towards her and gave me a big hug. When we went to recovery to see her, she was laying in the fetal position, but the second she saw us she started crying, really crying. It was like she was saying "where have you been, I woke up in this crazy place, you were no where around and I'm scared!"


Here we are in recovery - I was SO happy to see her!


And after a few minutes of snuggle time, she was really happy too!


Tonight was also Zachary's very first T-ball game. All but two of their practices have been rained out, so to watch 4 and 5 years old try to play a game together, most for the first time, is pure comic relief! Zach was SO excited for this game that he told everyone he came across (regardless if they cared to hear about or not!) that today was his "very first game, ever".

Portland Sea Dog's number 9 player!


First time on first base!


First time running home!


Playing the field!


Action shot playing third baseman!


Thank you so much for all of the prayers, e-mails and calls to check on Alex, we truly appreciate everyone's concern and care for her, and us.

Tuesday, April 14, 2009

Finally!

The laptop we ordered back in December FINALLY arrived today!!! It's awesome! I already loaded some of the software we have for her to use just with her switches and we experimented for a little while before bedtime. She uses the computer and switches at school, but it's rare I get to actually see her in action...clearly, she knows what she's doing:



and she's happy about it...

Monday, April 13, 2009

Happy Easter!

I wanted to do a quick post about Easter and upload a few pictures, but as most know, I'm very camera happy and I took over 150 pictures this weekend! So I decided to just put this quick montage together because I couldn't decide which pictures to post! :) It's not and "Eastery" song, but I love the song I used called Let Them Be Little - and Zach really reminded me of it in all of his excitement about the last few days.

video

Thursday, April 9, 2009

On Cloud Nine!

Before Alex's GI Dr. appointment today we had a follow-up nutrition appointment at Children's Hospital. Six years ago when Alex literally forgot how to eat and she was hospitalized, I remember the doctors coming in to talk about her needing a feeding tube. In my mind I thought ok, no big deal, she'll get this tube thingie, we'll take the pressure off her by not shoving a bottle in her face every two seconds and in a week or two we'll be back on track and good to go. I couldn't have been more off base. We have worked so hard over the past six years to get her to eat again, therapy after therapy, trial after trial. She was released from the feeding program at Children's Hospital on two separate occasions because she was a failure to progress. The therapists didn't think she could do it and it really seemed like no matter how hard we were trying it was all futile attempts - no matter how much I willed it, she just couldn't do it. But we never gave up trying. I suppose I'm a tad emotional, but I'm tearing up as I type that today I got the news I have waited so long to hear. Alex has gotten back on track with her weight and is back in the 25th percentile and is eating her blenderized food so well, that we are starting the process of weaning her off her feeding pump!!!!!!!!!! In just 12 days Alex will have all of her meals during the day by mouth!! She will only have to be hooked up to the feeding pump throughout the night to make up calories she didn't get throughout the day. It still doesn't feel real. You may think I'm overreacting, but this is a huge, huge milestone for her and I am so happy for her.

On to her GI appointment - the short version is they are going to schedule her for an endoscopy to see if they can find the source of the bleeding. It's an outpatient procedure and she will be completely under sedation. Hopefully it's going to be scheduled the beginning of next week so we can get that behind us and focus on her new diet! :)

Tuesday, April 7, 2009

Allergy Testing Results

After thirty two skin pricks.....drum roll, please....



The only food allergy we have is to pork! WHOOOO HOOOO!!!!! It's not a food allergy causing her problems and we can continue feeding her the blenderized diet! I'm seriously ecstatic. It was really funny because as we were watching her skin react to all the pricks we could tell that one of them was positive, but we didn't know what food it was - so Aaron said, wouldn't it be awesome if that was pork or something - who would care about a pork allergy? And low and behold, it was pork!

So that's the good news. I suppose the 'bad' news is we still don't know what's causing her stomach to be irritated and bleed. Nancy and I spoke for a while today and we're going to start her on Prevacid, a prescription medication that will calm her stomach if acid build up is the culprit. We also have an appointment this Thursday with her Pediatric Gastroenterologist to see if there's anything GI they suspect going on with the lining of her stomach.

I have to say Alex did exceptionally well for the test. She was perfect for all the pricks, but it was a delayed reaction - two minutes after they were done she started crying, then screaming. But Daddy was there and he calmed her down and then kept her amused on her stomach for the 25 minutes required before the tests could be read.


Aaron shot this picture of her just watching him - she really is a Daddy's girl.

Monday, April 6, 2009

G-Tube Update

Alex had an appointment on Friday to see our friend Nancy Thompson about the issues we've been having with her g-tube. Basically, for the last few months she cringes when I put her extension tube in. Last week we changed her g-tube out and once we pulled the tube out she started bleeding - something that's never happened in the 6+ years she's had her feeding tube. I thought she had some granulomas that had built up, but when Nancy took her g-tube out, that wasn't the case and she was bleeding again.

So, right now she's on a medication to coat her stomach that she has to have 30 minutes to an hour before her feedings - sounds like no big deal, but it's so much of pain given that she's already on an four hour schedule - and if you miss the window to give her the medication, her feedings get off schedule by over an hour and it's really just a vicious cycle.

Obviously her stomach has some kind of irritation to cause the bleeding - the question is why. Two of the possibilities are an ulcer, or food allergies now that she is eating by mouth. I get so upset thinking about the possibility that it's food allergies. We have worked SO hard over the past six years to get where we are that I think how cruel will it be if it turns out that's what this is. Not to mention the fact that she finds absolute joy in eating, it will really break my spirit if that's the cause. We have an appointment at 8:15AM tomorrow morning with the allergist to have her tested for food allergies.

She's got a head cold as well so she's really not in the best of moods. We took her to our neighbors house yesterday for their annual Easter egg hunt and here's a picture that pretty much sums up how she's been feeling.