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 22, 2012


So I THINK I may have figured out what has triggered Alex's seizures lately.  I started to journal Alex's days to see what, if anything, was different to see if there was any thing I could pinpoint.  With her low tone, and lack of mobility, Alex has A LOT of constipation issues.  The one constant thing that I was journaling was that she was having issues and we had upped her Miralax (a powder laxative) intake.  A little history - when Alex was first born we left the hospital 2 days after she was born and we had zero indication that anything was wrong.  She received her first round of immunizations and from that day on she screamed and cried - ALL THE TIME.  That was a real rough period for us that I remember vividly.  After another round of immunizations, she suddenly lost her suck/swallow coordination.  She had breast fed like a champ, but all of sudden she seemed to have "forgotten" how to eat.  After another round of immunizations, she started having seizures.  It was then we realized that Alex's body could not tolerate immunizations.   She was prone to pneumonia when she was younger and my pediatrician convinced me to give her a flu shot one season.  Yep, two days later we were admitted to MCV for seizures.  The flu shot has mercury in it.   After doing some research we discovered that Miralax has a lot of metals in it.  We have stopped the Miralax and even brought her night seizure medication dose back down to the 5ml's (a few posts back I mentioned the Dr. had upped her dose to 8ml's in the evening) and KNOCK ON WOOD (here's where I hope I don't kick myself for talking out loud again!) she has been seizure free for almost two weeks!!!  Of course we are now dealing with a whole host of other bathroom issues, but we're experimenting with natural powders to get her back on track with that as well.  Here's to praying that was the cause!! 

Thursday, March 8, 2012

Zach's Busy Schedule

As Zach pointed out to me last night, he has a busier social calendar than I do! 

On Saturday Dana and I took the boys to Theatre IV to see The Stinky Cheese Man

I wasn't sure what to expect, but it was probably one of the cutest plays I have seen.   We had front row tickets and as the show began the narrator looked at Zach and said "what's your name?!?"  ~ I have to say Zach looked mortified!  He barely whispered "Zach"....and the narrator said "what is it?!?"  ~ a little louder, but still pretty much in a whisper he said again "Zach"....and the narrator said, "now how am I supposed to remember a name like that....from now on I shall call you.....MELVIN".  The look on Zach's face was PRICELESS!  Throughout the show they would say Melvin this or Melvin that and Zach would just get this funny grin on his face.  Even when the show was over and we were walking out people were like "Hey Melvin!"....it was awesome! :)  We finished out a fun afternoon with Dana and Jonah and then he got to have a sleep over with Jonah.

On Sunday he started his swim practice to get him ready for the Swim Team this summer.  He loves to swim - always has.  I used to call him my little fish.  He started swimming at 3 years old and could possibly live at the pool if I let him.  This will be his third year on the swim team.  The first year he had a lot of mishaps and missed a lot of the practices and meets.  Last year we really got the feel for what swim team is all about so we're looking forward to the upcoming season.

Sunday night we had friends over and Zach was a bouncing fool on the trampoline - barely saw him for the rest of the afternoon.  Between the swimming and the jumping, he was asleep before his head hit the pillow.

On Monday we had "snow"....and I use the term VERY loosely!!  I was woken up at 5:30AM with a phone call from the school that "Due to the IMPENDING weather there would be 2 hour delay"....it hadn't even started snowing and they were already on a delay!!!  The second it did start to snow school was cancelled.  It's really quite comical, coming from New York, how Southerners react to snow.   Of course the kids were quite happy to have the extra day.  Alex must have heard the phone call too because before she was even done with her flush from her feeding pump she had gone back to sleep....and she NEVER does that!  The snow never stuck to the ground and by the early afternoon the sun was out and everything had melted.  Zach and Alex spent the morning snuggled all up in her fuzzy chair watching TV.

They were so cute for a while...

But then Alex was so happy he was chilling with her she decided she wanted lots of loving...

And then, as she usually does, she grabbed hold of the inside of his lip (and from experience, that HURTS!)

So he decided he still wanted to hang out with her, but in separate spaces!  Can't say I really blame the kid!

By the afternoon Jonah had come over to play in the mud....um, I mean snow :)

Tuesday he had piano practice.  His teacher feels like he's ready for 2 classes a week - he's really making great progress and he enjoys it.  When we got in the car he said "Mom, I think our plates are too full for an extra day of piano, I mean, I really enjoy it, but I just don't think we can fit it in".  Have to say I agree with him!  After piano he had his sibling support group dinner.  The kids all got to sit at a corner table all by themselves.  They got to order everything by themselves and they had so much fun.  The smiles on their faces was contagious...we couldn't help but look at them and smile.  And after dinner they all asked if they could have ice cream.  They all got fried ice cream and the owner of the restaurant came out with the chocolate syrup and let them put on as much as they want...and he brought over the 'birthday sombrero" that they have and let the kids play with that.  It really is a great time for both the kids, and us mom's who get to talk and have our own time as well.

I'm so glad he has this new awesome group of friends!!

Last night we went to our favorite restaurant to celebrate Jonah's 14th birthday.  So much fun, and such good food!!

I'd say he had a busy, and fun week!  Now to get ready for the weekend and all of those activities!

Friday, March 2, 2012

Yep, I Used My Outside Voice...

Last Monday we had a "whopping" 2 inches of snow. Alex was supposed to go see her neurologist but the appointment was cancelled. We always have to take Alex right before an appointment with the neurologist to have blood drawn to have her seizure medicine levels checked, as well as her liver levels since her medicine metabolizes through her liver. Needless to say I have taken her for umteen blood draws...more than I'd like to count. I always tell the people in the lab that Alex can be a hard stick and that she has superficial veins. Her veins in her arm LOOK good, but as soon as they attempt an IV or blood draw the vein rolls. BUT, her hands always do great. I take her to the same place every time to get her blood drawn and we always get the same lady - who is great.  When we walked in she was at the front desk and said "Hey Alex, I'm sorry baby but I'm not feeling well and heading home."  Great.  So we had a new lady, and she DID not listen to a word I said.  The first blood draw she tried to get was from underneath her arm, below her elbow.  I have NEVER seen anyone try to take blood from there and apparently there's a good reason why...it was terrible.  She then went to the top of her forearm and nope, no blood.  I told her AGAIN that she needed to take it from her hand but she tried to take it from the opposite arm.  She got a little, but once again, the vein rolled.  She then said, "OK, let's try it from her hand."  Umm, NO!  I have a three stick rule and if you clearly cannot listen to me, we're done.  She said she didn't have enough blood for all the tests she needed to run and I said that was fine, we would see what tests could be run with what they had.  Alex has a HUGE pain tolerance and NEVER cries for IV's or blood draws and she was screaming and crying after the first stick.   Needless to say I was angry and frustrated when we left.  Her arms have been badly bruised for two weeks now. 

Anyway, back to Monday....so since we didn't get to her appointment her neurologist called me and said that her Depakote (her seizure med) levels were 126.  I mentioned in a previous post that the normal levels are 50-100 - her last levels were 117 and I was alarmed but her doctor assured me it was fine.  This time her levels are 126 and he's still comfortable with that - even though I'm not!  He asked me how her seizures were and I said she was doing great.  She's had only had 2 since we got out of the hospital in December.  And that was my mistake!  It never fails...Murphy's Law I suppose.  People will ask how she's doing and I'll say great!  And then she'll get sick.  Or I'll take her to a nutrition appointment and they'll ask how she's eating and I'll say great!  And then she goes on a mini strike.   So when the doctor asked how she was and I said great.....yeah, the next day, not so great.  Alex has had 5 seizures since we spoke.  Again, Alex typically always has her seizures during the early morning hours - 2AM, 3AM, 4AM, etc.  and this week has been no exception.  Last night she had a seizure and it wasn't until when I went to get her ready for school this morning I saw her poor toes.  She apparently hit her toes ONCE again while she convulsing in her bed and caused injuries to her feet.  Her poor big toe is SO swollen and black and blue and it was obvious it was causing her pain. 

Every day Alex has to wear these braces:

Notice the white strap that has to go in between her big toe.  Imagine trying to wear those, WITH shoes on top of her toes when your toes are all messed up.

So to make a LONG story short, I took her for x-rays this afternoon to make sure her big toe wasn't broken.  My camera flash removed a lot of black and blue color that is on her toe, but the joint at the base of her toe is so swollen and angry looking (don't look at the remnants of her last pedicure ~ clearly she's past due!)

Again, on top of the bruising, can you imagine trying to wear braces and shoes that already confine your feet with cuts on your feet....

Thankfully her toe is not broken and it's just sprained, which there is nothing they can do for it.  If it was broke she would have had to have been casted, which would have been a nightmare since Alex HATES anyone or anything messing with her feet.  It took over an hour just to get 3 films of her toe because she's so sensitive when it comes to her feet.  The whole time she was getting her x-rays I was praying so hard it wasn't broken, because I couldn't imagine her having to be casted.  I'm thankful it's the weekend so she can spend a few days shoeless.

As I've been writing this her neurologist has called and despite her levels already being high, he wants to up her nighttime meds to 8 ml's a dose to keep her protected throughout the night since all of her seizures happen in the early hours of the morning.

Aaron and I have been discussing a variety of options tonight ~ her bed is a special bed that keeps her safe and enclosed but clearly we have other issues we need to work out to keep her safe from the seizures.