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.

Saturday, May 30, 2009

In The Hospital

After my post on Thursday Alex woke up from a sound sleep at about 10:30 vomiting. Ughhh. She had thrown up all of her night meds that I had given her at 7PM that night. I thought maybe they were too much for her stomach since she had only had pedialite the entire day and that once that was out of her system she'd be better and go back to sleep. Wrong. She wound up vomiting three more times after that - I will spare you all of the details, but I knew the only option I had was to take her to the ER. So at 11:30 that night we packed her up and I drove her to the hospital, - sometimes I vacillate back and forth because I don't want her to pick up something worse while she's in there, but I'm really glad I took her. She threw up on the way to the hospital, on the way into the hospital, in the middle of her X-Rays (they wanted to make sure she didn't haven't a blockage), in the middle of starting the IV...sigh. I have NEVER seen her that sick before - and she really had nothing in her stomach to throw up in the first place. So obviously her blood work came that she was dehydrated - and remember that she's had a nissin fundiplication, so technically she's not supposed to be able to vomit. You would think that if there could be one positive side to having a feeding tube it would be that you could keep her hydrated. I mean come on, there has to be some perk! Poor girl.



The dr. in the ER was fantastic, her nurse on the other hand...Since my blog is PG I really don't want to type what I really want to call her. Seriously, WHY go into a specialized field if you clearly don't like people and seemed annoyed that you have do actual work. The IV process, which usually doesn't go well anyway, was an absolute nightmare and I finally put my foot down and told her that I wanted someone else. Uggh, it's so frustrating when you're trying to deal with your sick child that you have to put up with attitude from someone who is getting PAID to be there and help you! Alex was so upset by the whole ordeal in the first place and she certainly didn't make it any better. When Alex is frustrated, she either bites herself or pulls her hair. I had to take a picture of this before we left, because here's how much hair she pulled out during the IV process...




She was in the ER for about 15 1/2 hours before they decided to move her upstairs to a room. Not to be a martyr or anything, but do you have any idea what it's like to sit on a hard plastic chair all night? I couldn't leave the room for more than a minute while she was sleeping and it was a miserable night. By the time Aaron came to switch places with me last night and I got home to bed I had been up for 38 straight hours. I guess that's what mom's do though, right? And poor Aaron just had a terrible birthday. He says it doesn't matter it was just another day, but it does matter -I love birthdays and think they should be celebrated in a big way every year. He had done so much for me on Monday to make sure I had a great birthday and there was no way to do the same for him. I promised him some way I would make it up to him.

Thankfully Alex came home this morning and is feeling so much better. She's sleeping comfortably in her own bed right now and I'm running her formula at a very slow rate through her pump. She had a different type of formula in the hospital throughout the night and she tolerated it just fine, so I'm saying prayers she's just fine in a few hours.

One last thing...I had mentioned in a previous post that I had gotten her new red glasses. Well, I realized yesterday as she was starting to turn the corner that she was actually paying attention to the TV when I realized that I hadn't brought her glasses with me. The Eye Institute where I take her and had ordered her glasses from happens to be in the medical office building connected to the hospital. Aaron called them and her glasses where in - so I went to walk my sister downstairs and walked over and got her glasses. When I put them on her I kept saying, "Alex, who do you look like in these glasses?!?" Then it hit me...


Alex is the Ugly Betty look alike!!! Of course, she's no way near ugly, but come on, there's a resemblance, no?!?

Ok, I'm off to go get Zachary from my parents. I miss the little man. I think last night was the very first time, ever, that I have slept alone in my house. Very weird feeling!

Thursday, May 28, 2009

Pitiful

With a Capital P. Poor Alex has been so sick since Tuesday with the rotavirus. I will spare you the details, but believe me, I have never seen her so sick before and it has been a rough couple of days (believe me there will be no pictures or videos in this post!!) Unfortunately that means she's missing her last two days of intensive therapy. She's really done great and has gained a lot of strength, hopefully the virus doesn't impede that - especially since she never even got out of her bed today :( For those of you that have e-mailed or called and I haven't gotten back to you - just know it's been crazy here and I promise to respond soon! There's a ton of other stuff going on here and just not enough hours in the day.

Monday was my birthday and I really really had a great weekend. Before I even opened my eyes Zachary climbed in my bed, kissed me on the head and whispered Happy Birthday Mommy - how could my day go wrong after that?!?


Tomorrow is Aaron's birthday and I doubt he's going to have as good as a day as I did, but when you read this Aaron, know I love and appreciate all that you do and I hope that you have a wonderful birthday!!!
Unfortunately that's all I have time for...

Thursday, May 21, 2009

A Crazy Thursday!

Another marathon day! We started therapy at 8AM this morning. Today was probably one of her best days to date - she sat independently for over six MINUTES! That is huge for her! Not only was she using her trunk to support herself, she was also reaching out with her left hand at the same time!



video


She also did a ton of walking today and while her left leg (her weaker side) was fatiguing quicker and not getting a full extension, she did great with little or no prompting at times. You'll see in the video how she's really not using her arms to support her weight - which is also huge. It means her trunk is getting much stronger!! You can see that in the sitting video as well. Obviously intensive therapy is going great for her despite her shoulder set back. Even at the end of her third hour this morning she was doing amazing weight bearing and balancing, with a smile on her face the whole time. I have to say we are SO lucky to have such an amazing therapist. Shannon - you are the best and we don't know where we would be without you!!!



video



Today was the first annual Richmond Hope Therapy Center golf tournament to raise funds for the scholarships that Cindy (the owner of Hope) offers to people who may not otherwise be able to afford the therapy. Cindy asked that Alex go to the shot-gun start of the tournament today so the people playing for the Foundation could meet Alex and see one of the kids that is benefiting from the therapy services they offer.



After that, we headed to her annual eye check-up. I dread this appointment every year because it takes over 2 hours by the time they dilate her pupils and get the examination complete and Alex does not like to sit in one place for more than 20 minutes, tops. All in all the appointment went well, her farsightedness has gotten worse, but her strabismus, which was really bad before glasses has gotten better. I can't wait till she gets her new glasses - they're red and very sassy!

When we got to the exam room they turned on Elmo In Grouchland (Elmo is her FAVORITE!) and she and Zach sat so patiently watching the movie. It was really quite cute because they were sitting next to each other and she kept putting her arm around him :). Of course, I just happened to have my camera with me!



LOL...her fancy dilatation glasses!



After the eye appointment it was a mad dash home to start dinner and get Zach's uniform on for his T-ball game, then three loads of laundry, preparing all of Alex's food for tomorrow, watering the flowers, vacuuming....I'm tired!

Wednesday, May 20, 2009

Zach Reaches a Milestone!

When we were registering Zach for Kindergarten we had to fill out this survey of things he could do on his own and the only thing I couldn't check off was that he was able to tie his own shoes. So I went out and bought this book that comes with a shoe and laces to try and teach him. Quite honestly, he just wasn't getting it so we've worked on it here and there but I haven't really been focused on it with him because I figured we had all summer to work on it. So tonight he tells me he can ties his shoes and I said, yes, we're working on it, but you're not quite there yet...and he says, no Mommy, I CAN tie my shoes. So he goes and grabs a sneaker and you know what - he CAN tie his shoes!!! I'll admit, I got a little misty eyed!!! Because I had Alex first, I have always really enjoyed and appreciated every milestone Zach has made and I was so proud of him today!! This video just cracks me up....!
video
In my defense, I have to say I think I'm pretty patient with him and hardly yell...guess he thinks differently though!!!

Saturday, May 16, 2009

2009 Angelman Syndrome Walk-A-Thon!

What a day! It started quite early - for me - 4:45AM to be exact since we had to be on the road to Columbia Maryland by 6:30AM, but it's been an awesome day! There were 520 registered walkers for the DC/Maryland Walk-A-Thon site (24 cities in all participated today in Angelman Syndrome Walk-A-Thons). I believe there were 56 "Angels" at our walk site alone. Although the weather was cloudy and a little rainy, you would never know it by all of the smiles that lined our walk.


THANK YOU so much to everyone who sponsored our Team Allie Bean - we raised over $1,210.00 towards the very important research needed for Angelman families.

Team Allie Bean was comprised of my dad, Joe DePasquale, my in-laws Joan and John Hayes, my sister-in-law, Rebecca DePasquale, Alex's home based teacher Katie Estes and her mother Linda. I can't thank them enough for their time and total devotion to us today!


Alex was so incredibly great today - she really is a totally different child since we've figured out her source of discomfort with her shoulder and is truly back to her happy self. She was a dream all day today, as was Zachary.

Thank you again to all who sponsored us, and to all of you who love and support us - you have no idea what you mean to us!


Here's a video from the day...

video

Friday, May 15, 2009

Ick!

It's been five days and her shoulder isn't any better...in fact, it's worse. She's wearing her brace 24/7, I pretty much only let her hand free for 5 minutes or so or when she's having a bath. It's to the point now where you actually SEE and HEAR the shoulder popping and catching - again, ICK! If you raise her arm above her head, it literally gets stuck. Shannon thinks she has a torn labrum and I have a call into a Pediatric Orthopaedic Surgeon at UVA. For now, as long as she stays in the brace she's back to her very happy ole self, and that is very important to me!

Cutest picture of her and Shannon (before all of this shoulder mess!) at therapy (and look how good she's sitting up all by herself!!):



Zach thought it was 'blog worthy' to let everyone know that he has a new pet named Pinchey (he's a hermit crab)...lol! :)



Tomorrow is our big Angelman Syndrome Awareness Walk-A-Thon in Maryland. Pray for good weather since they're calling for some thunder storms!

Monday, May 11, 2009

Seriously?!?

Uggh. Why does it always seem like it has to be one step forward and 48 backwards?!? Alex had a really hard time this weekend, was unhappy and was literally awake all Saturday night. We drove down to Williamsburg to visit my in-laws who were visiting and we thought maybe Alex was so restless because she wasn't in her own bed or surroundings. But this morning she was still unhappy and really pitching a fit when I drove her to therapy. Shortly after I got to work her therapist Shannon called and asked if anything had happened to Alex's arm over the weekend. Because of her low tone, she has sublexation of her shoulders. We know that so we're just extra cautious with how we handle her arms. Shannon was having a hard time with Alex's range of motion and during one of the exercises she usually loves, she was crying and biting. Long story short, Shannon called the orthopedist and they said to bring her in. We had a 1:20 appointment, but they didn't call us back till almost 3:15. This happens EVERY TIME I go see this particular doctor and it makes me SO MAD. Why do they schedule appointments every 10 minutes when they clearly know they get backed up so far? A 2 hour wait? That's just inconsiderate and ridiculous. They took x-rays and the arm was back in the socket, but Alex was clearly still uncomfortable and in pain, so the doctor tells me she needs a shoulder immobilizer, but my insurance company wont pay for any of that doctors supplies and I need to go somewhere else to get it. Umm, WHAT?!? What good is an appointment with a doctor if they can't actually fix the problem - AFTER I WAITED 2 HOURS to see him in the first place. Oh I was fuming by the time I left there. Not to mention the fact that Alex had completed her three hours of the therapy when we left for the doctor appointment and Audretta had fed her at therapy. I should have known better and packed food for her, but honestly, I was a little preoccupied, and remember that her eating is actually a whole new ballgame for me so I didn't think about blenderizing something before we walked out the door. By the time we went to the other doctor, WAITED there for the immobilizer and got home, it had been 6 hours since she had eaten and she was exhausted.

Here's our latest accessory for the next three weeks...if she's not better in the three weeks, the dr. said we'll talk about surgery, but given how bad her low tone is, there is no gurantee that the surgery would even work...



That can't be comfortable to sleep in, but she's so exhausted I don't think she cared...

The part about this that upsets me most is that we just started week 2 of our 3 week intensive therapy program. All of the goals that we set for Alex have to do with weight bearing through her arms to help her walk. Sounds odd that the arms would have anything to do with walking, but if Alex is going to walk with a walker, she needs to be able to apply the weight through her arms to be able to successfully take steps. So we're giving her the day off tomorrow and Shannon is going to see if we'll start back up on Wednesday, if we push the therapy out another week (which isn't ideal because it's intensive therapy and you don't want the kids to have a break in between) or if we have to scrap it all together. And not to start another rant, but that would really stink because of insurance purposes. Sigh. It's just really been a crazy two weeks between running back and forth to therapy for five days, Speech Therapy, Zach at the doctor twice last week for strep, then the crazy rash that he broke out it in, another feeding clinic appointment (which I'll have to talk about later), back at therapy today, the two orthopedic appointments - oh, and somewhere in there I'm trying to actually keep my job.

Ok, enough venting.

Here's a little video of Alex doing some 'cage' and suit therapy.

video

Tuesday, May 5, 2009

Intensive PT

Just a quick update...

Alex started Intensive Physical Therapy at Richmond Hope Therapy yesterday. Basically she will be doing intensive therapy for three weeks, five days a week, three hours a day. Just imagine going to the gym and working out for three hours straight every day - whew. I'm sure I'll have pictures and videos to post between now and then, but I am so excited to see where she will be strength wise at the end of these three weeks.

And poor Zach's had 104 temp for the last two days and tested positive today for strep. Never a dull in the Hayes house, that's for sure!! :)


How pitiful?!?

Saturday, May 2, 2009

I'm Devastated

If you've watched any of Alex's video's, you know that we take her to Florida every year for Hyperbaric Oxygen Therapy (HBOT). My blog was basically born out of our trips there since I would send an e-mail update every night to friends and family for the entire two weeks we spent there each visit. Yesterday, the very facility that we take Alex to had a tragic explosion inside one of the chambers, killing the woman inside and burning her four year old grandson with Cerebral Palsy over 95% of his body. There has NEVER been a hyperbaric explosion in the United States. Words cannot express the sadness I feel.

Two pictures of Alex in a similar chamber.






I tossed and turned almost all night just thinking about that poor family - here they are taking their already "broken" child to the center to try and "fix" him, and the unthinkable happens. Back in 1993, I was working in New York City in Two World Trade Center when the first terrorist attack occurred. I worked on the 52nd floor and it took me hours to get out of the building. When 9-11 happened, I mourned with the rest of the world, but for me it was that much more personal. When I closed my eyes I could navigate myself through the building - I could see where I got my bagel every morning, the elevator banks, the security desk, my office - and then, somewhere in all of that mayhem and debris was a piece of me - my desk, the chair I sat in, my personnel file. I was there before, I lived it and in some way, I knew what the people inside the World Trade Center were feeling that day, I was just luckier than them. I feel the same way now. I have spent countless hours in the hyperbaric center - hours inside the chamber with Alex during our first visit. I can visualize the exact chamber that exploded, the entrance way, the lobby, the pictures of the faces hanging on the wall that put all of their faith and hope into the facility. For me, the feeling of hope I have about the hyperbaric facility is gone. From the first time I walked into those doors it was the very first time in Alex's life that I had hope. Hope that perhaps we had stumbled upon the very thing that would enhance her life, our miracle. She has made incredible gains that we can only attribute to her HBOT treatments. I highly doubt that facility will ever open their doors again. Is there another facility that we could possibly go to? I'm sure, but I just feel like a huge part of my hope has vanished. We were scheduled to be there in July. We have so many friendships and memories that we have made at that facility over the past two years and I'm just so incredibly sad.

I'm not sure how long this link will work, but if you would like to know more about the explosion or the family, here is the link to the local news.


http://cbs4.com/local/Hyperbaric.Chamber.Explosion.2.999711.html