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.

Tuesday, May 31, 2011

A Very Busy Week!

I started to blog last week and, well....

It was a busy week to say the least!  Physical Therapy, Speech Therapy, Neurology Appointment, my birthday, Aaron's birthday, swim team practice started, Memorial Day weekend....

So here's how the blog post started last week....Yesterday was another really great physical therapy session for Alex.  Shannon put knee immobilizers on her and had her standing, at some points all by herself!  You could clearly see in her face that she knew when she was loosing her balance and about to fall - she clutched her hands to her chest and made a face like Uh-Oh!  So cognitively, that's a great thing.  I took videos of her, but I took them with my phone camera and they are sideways...bummer!

At speech therapy they used kinesio tape on her lips to basically make her more aware of her lips and strengthening...and guess what?!?  SHE SUCKED FROM A STRAW!!!  Had total lip closure and sucked...very exciting stuff.  All weekend she has been grabbing the squeeze bottle we use to feed her pediasure and out of my hands and has been sucking on the straw. 

Friday we had follow-up with neurology.  Her blood work came back fine and she was actually a little bit below therapeutic level.  We were giving her 2.5ml's of Depakote three times a day, but the Dr. switched us to 4ml's, twice a day.  Over all she seems to be doing really well on the medicine...knock on wood.

That's all  I have time for right now, will hopefully do a better job of keeping up this week!

Wednesday, May 18, 2011

Walking and Braces

 Yesterday Alex had an awesome day.  She had physical therapy right after school and she did AMAZING.  She walked on the treadmill with only Shannon holding her up (I say 'only', it was quite a work out for Shannon!)  These are, by far, the best steps she's ever taken - and on a treadmill no less!!

video

Right after therapy we headed to pick up her new braces.  These are a lot taller than the ones she's worn in the past, but she really needs the extra support.  And of course, they're pink :)





Monday, May 16, 2011

Still No Diagnosis

Another bummer.  A few weeks ago I took Alex down to MCV and had blood drawn.  The geneticist said that back in 2002 the methalaytion study on her 15th chromosome showed a variance.  She wanted to run further tests because the testing has come so far and this new test would tell us if in fact there was a variance and to what degree - which would have finally given us an actual diagnosis of Angelman Syndrome - not just a clinical one.  Tests are back and it was negative.  It's really a bitter sweet thing.  How do I WANT her test to be positive, but not want anything to be wrong with her?!?  I just want a diagnosis so I can close that chapter and stop worrying/wondering if we are doing everything we can to give her the best life possible.  They are going to run a UBE3A analysis on her again (another test for Angelman Syndrome), but I'm not getting my hopes up.

I'm trying not to let the events of the past few weeks get to me, but boy is it hard.  Things with Alex had really been status quo for the past few years - just the way I like it!  Then all of a sudden we are back to testing, seizures, Dr. appointments left and right, yadda yadda yadda.  I feel like I'm thrown back to when she was just a few months old and we were all of a sudden on this journey and I am SO not prepared for all of the emotions this trip down memory lane is bringing me.

Thursday, May 12, 2011

Day 3

Today is day 3 of being on the seizure medicine.  So far she seems to be tolerating it ok other than a loss of appetite.  She's really grumpy today, but how do I know if that just the medicine or something else going on?  I can't even begin to say how much I hate this medicine.  I seriously get a physical gut wrenching ill stomach every time I give it to her.  She's on 2.5 mls of Valproic Acid three times a day.  This now means we also get to go and do lovely blood draws every 3-6 months because of the way it processes through her liver.  Have I ever mentioned how fun it is to a blood draw with her?  She's the hardest stick ever. 

I think I'm having such a hard time dealing with this is because I control every single aspect of her life.  When she eats, what she eats, when she gets a diaper change, where she goes, what she wears, what time she goes to bed, what toy she will play with, what movie she will watch.  She doesn't ask for anything so I just make all the choices for her.  Seeing her have a seizure and not being able to control that or do a damn thing about it is so hard.  It's scary, it's sad, it's the most helpless, horrible feeling I've ever experienced.  Ever.  Period.  I hate it.

Monday, May 9, 2011

More Episodes

Unfortunately, Alex had a seizure again at school today and another one tonight.  The one tonight was scary.  It lasted about 2 minutes, and she was clenching her mouth and biting down so hard that she actually lost a tooth.  When I saw the blood I thought she had bit through her tongue.  

The neurologist called a little while ago and he is putting her back on seizure medicine.  I'm so sad, all I've done is cried.   

Sunday, May 8, 2011

Happy Mother's Day!

First and foremost I want to wish my mom, Aaron's mom and step mom a very happy Mother's Day. All three of these ladies are exceptional women who have such a positive influence on our lives. To my mom - you are my rock. You are always there for me, encouraging me and supporting me. When anything happens, you are the first person I call or turn to - you're not just my mom, but my friend. I love you very much mom - thank you for everything.


I heard a song the other day and it made me think of my kids and what a great a message for them from me. If you follow my blog, you know that I LOVE pictures...one of the problems is I'm always taking the pictures so I'm not usually in them! I went through some pictures from the last two years and found some of me and the kids and made this video for them - it's my Mother's Day present to myself!


video

Saturday, May 7, 2011

Quick Update

Alex's neurologist called Thursday night.  I have quite a bit of research to do because I don't understand a lot of the technical terms he used, but the bottom line was while Alex's EEG had some abnormalities in the central region of her brain, she was not having active seizures.  The fabulous news is that he does not feel the need to put her on any seizure medication at this time and that is a HUGE weight lifted off my shoulders.  I truly believe that Alex has made some great cognitive gains in the last two years and my fear was that she would have to go back on seizure meds, which in turn makes her sleepy and in a fog.  It's taken her quite a few days to get back to her old self, but I think she was absolutely exhausted - the hospital is not the place to be if you're looking to get any sleep!

Alex went back to school yesterday and it was great seeing her so excited when the bus came.  She LOVES the bus and she enjoys being at school so it was nice seeing her fall back into her routine and being happy about it.

Thank you again to everyone for your calls, texts, e-mails and prayers.  Aaron and I definitely felt loved and supported and appreciate the family and friends that we have.

Wednesday, May 4, 2011

Hospital Update

It's been a long few days, but I have to say, as tired as I am, Alex truly gives me strength with how strong she is and what a trooper she is.  She has been through so much the past week and she still manages to be happy.  Don't get me wrong, she gets frustrated and unhappy, but if I was poked and prodded the way she was I doubt I would bounce back the way she does.  Anyway...before she was hooked up to the video monitor, she looked like this...





Afterwards, she looked liked this:


Still happy....

Her 24 hour test started around 11AM.  The machine that she was hooked up to showed her brain waves with a side video of her.  The only problem of being hooked up to the video monitoring was that we had to make sure that she stayed in the little video box so that if something showed a seizure, the video would show what she was actually doing or what her facial expressions looked like...so there was no getting her out of the bed to put her in her wheel chair to play or to eat, which was hard for me.  It's kind of hard to see, but the video monitoring looked like this:




Not sure if the picture does it justice, but it's kind of rhythmic, which is a good thing.

Around 10:00 last night she pulled out two of the wires that were connected to her head and the on call technician had to be called in to reconnect her.  Alex was sound asleep when she came in, and as hard as she tried to be quiet and gentle, Alex wound up waking up and was WIDE awake for a few hours after.  Her neurologist  came in at 11PM to check the video to see if he could see any abnormalities on the video from the day, but unfortunately when the tech came in to hook up the wires she had to pause the recording and when she did all of the video from the day downloaded to a computer so he couldn't review anything.  Bummer.

I have to say I absolutely LOVED Alex's day nurse, Miranda.  She was AWESOME.  She had actually worked at my pediatrician's office before she became a nurse, and had suffered from seizures when she was a child so she GOT it and was just so compassionate with Alex.  Unfortunately, I was quite annoyed with the night nurse assigned to her.  It was so important to have her asleep and get a good reading of her EEG asleep, yet she came in every 2 hours to take Alex's temperature and blood pressure.   She had a heart monitor on, she had a pulse ox on her that was monitoring her respiration's and pulse, so what was the point in waking her up and skewing her test?  I could see if she was in for a respiratory issue or something, but for heaven's sake she was being VIDEO monitored!  Ok, off my rant...

This morning, because of all of the interruptions during the night she was up extra early at 5AM and by 7:30 this morning she had pulled out 8 of the wires...which caused her EEG to look like this...


Not good.  So they called another tech back in to reconnect her.  Holding her down (after holding her down for three blood draws, having a catheter done, an IV line  and a mini EEG in a three day time frame) had not been an easy task, and she was already extremely frustrated from being in her bed for over 22 hours without moving, so we made the call not to rehook her.  We had 22 hours of recording so I felt confident that if 22 hours of recording hadn't captured anything, unhooking her, from what I can only imagine where uncomfortable wires, a few hours early probably wasn't going to show any epiphany. 



Clearly she was happy to be "free"!



 Once all of the wires were removed, with all of the glue and tape they used to "try" and hold the wires in place she looked like Medusa! :)



By the time her pediatrician came in to discharge us I had already cleaned up her room, packed up all of her stuff, unhooked her from the additional wires that were monitoring her, got her dressed and had her in her wheel chair - it was obvious we were ready to go home.  And from the look on Alex's face, she was ready too! 


A HUGE thank you to my mom and dad for coming up to the hospital each night and staying with Alex so I could run home an shower and have a quick dinner with Aaron and Zach.

I know this has already been a long post, but I have to share one more thing.  On the second day that we were in the hospital, I went to the little community kitchen that everyone on the pediatric floor shares to heat up Alex's food and I met, and had a long conversation with, a man named George.  We briefly exchanged the obligatory niceties that parents on a pediatric floor do, and then got involved in a more in depth conversation.  George was from South Africa and was in the process of obtaining Visa's to the US for the "American Dream".  When his family went for their mandated medicals before they could enter the States, the Dr's in South Africa said his son, who was 16 years old, 6"2 and 215 pounds was sick and not cleared to enter the US...he was shocked.  To make a long story short, George's son was diagnosed with a very rare form of stomach cancer.  He had surgery, and by the time he reached the US the cancer had spread to his liver and lungs and his son was a mere 100 pounds.  His son was in the Pediatric Intensive Care Unit, a place that I spent a month with Alex.  George shared his story and his faith with me in a tiny kitchen probably no bigger than my bathroom. His son is dying, there is nothing they can do for him, I can't even begin to explain how George and his story touched me.  Last night as George changed shifts with his wife and was leaving the hospital he came into Alex's room to meet her, blessed her and quietly left.  The only thing I could think of today as I wheeled a very happy Alex out into the cool breeze and sunshine is that I was so lucky.  Yes, we certainly have our challenges with Alex, and our life is harder than most, but she was leaving with me.  She was enjoying being outside and the sunshine on her face.  I was so happy to be taking her home, yet all I could think about was George and how he wouldn't be leaving the hospital with the same joy that was in my heart.  He would be leaving without his son.  The four long, sleepless nights I just had suddenly paled in comparison. 

Sunday, May 1, 2011

A Very Busy, Long Week

I started this post on Friday and never got a chance to finish it...so I had no clue just how long the rest of the week was actually going to be... 

It's been a long week for Miss Allie Bean. Monday she had an appointment for new orthodics.  The braces she currently has are leaving pretty significant pressure marks on her feet and she was getting really upset every time we put them on.  Tuesday was physical therapy right after school.  On Wednesday morning she had an appointment with her neurologist.  A few weeks ago she had an "episode" at school that was questionable if it was a seizure.  For a little background, Alex was first seen by a neurologist when she was just a few months old.  She had an abnormal EEG and was put on seizure medication for a "seizure like" disorder.   She stayed on that medicine for a few years and after a normal MRI of her brain and several "normal" EEG's, we gradually weaned her off the medication.  It's been about 5 or 6 years since she has been on any type of seizure medication.  With the episode at school, and some quirky facial grimaces lately I figured it would just be best if we made the appointment with the neurologist.  He decided that she should have an additional EEG (which was scheduled for this Thursday) and depending on the results of that, he may schedule her for a 48 hour video EEG, which would not only record the activity in her brain, but also have video to corelate any questionable activity to what she was actually doing at the time. After the appointment I dropped her off at school and right after school I took her to the chiropractor.  The chiropractor offers medical massages and I thought with the amount of time she spends in her chair and the physical therapies that she does it might make her feel good.  Who doesn't like a good massage, right?!?   Thursday morning before school she had to go have blood drawn and after school she had speech therapy.  (Did I mention anywhere in there that I actually have a job to go to in between all the appointments?!?)  Friday morning she had an 8AM appointment at MCV with genetics (more on that in a different post).  As soon as we left that appointment we had to race over to the Special Olympics Little Feet Meet that she has participated in for the last three years.   

Tabitha and Ronica where there to cheer her on
Can you feel the love?

She absolutely adores her brother
  

Mommy cheering her on for winning a ribbon in the tennis ball toss

Saturday afternoon she was watching a movie in her room and I was helping Zach with something in his room when we both heard a loud banging.  It took me a second to realize it was coming from her room so we both ran down to her room and saw her having another "episode".  Her legs were completely contracted and they were convulsing.  Her eyes were fixed up and to the right and she was holding her breath.  The look of complete terror on her face was what struck me the most and will probably stick with me for a long time.  I've never seen her look like that before.  I picked her up and was trying to get her to snap out of it - when she did she was panting like she had just run a marathon.  It felt like it was an hour but I'm guessing the whole thing was about a minute.  A few minutes later she went to sleep - for two hours.  A little while after she woke up, the same thing happened again, lasting about 40 seconds and after this episode was over she cried.  I called the pediatrician and we were sent to the Emergency Room, where we were eventually admitted. 

Today she had a brief EEG that didn't really give any conclusive results so the Dr. ordered the 24 hour video monitoring.  She's scheduled to be set up sometime tomorrow - given what a challenge it was just to get her prepped for the brief one this morning I am not looking forward to tomorrow's events.



Hopefully we will have some answers in the next two days.