Why is she getting me all germy?

A little boy asked me that question tonight.  We were at the Epilepsy Foundation meeting.  The speaker had been up front a little more than half an hour - Grace was getting restless.  I got her out of her stroller and she proceeded to crawl across the floor, lay down for a rest, touch the walls, tried to pull herself up on a chair with wheels - but figured out that wouldn't work.

A boy came over to play.  Police car in hand.  He would zoom the car by Grace crawling on the floor.  She would crawl after him.  If she got too near he'd zoom the car a little faster.  At times Grace would find something else to do - but always she would return to the car and the boy.  He made direction changes - and she followed!  She crawled up close to him to look at the police car he held in his lap.  She placed her two year old Grace teething goo drenched hand on his cheek.... and that's when he asked me the question.  I said - she wants to be your friend.  He asked if she could talk... when I said no he asked if she could nod..... again I said no.  Then he took off with the car - Grace in tow.

Thank you God for boys who wonder aloud about why a girl wants to get them germy.... and then continues to play.  Seriously....thank you!  Love Joy

She's my two year old!

Yesterday was one of the tough ones.  Yesterday was Grace's annual review for Early Access (her therapy services provided by the school system).  Our living room was full with her team.  A packet was handed to us- it described to us Grace's "abilities" - 3-6 months seemed to be all over that paper - the phrase scattered up to 8 months made me breathe a sigh of relief.  Each team member then proceeded to tell us that they think they will be cutting services to Grace because she's doing so well.

Well?????  Functioning at a 3-6 month level at over two years is well????

It's such an unfair process.  We didn't have the info before, we couldn't prepare.  The questions I had prepared no longer seemed relevant.  Why don't they give it to you a week before?   It's one thing to know that Grace is behind, it is a whole other thing to have it appear on paper... be given a few minutes to review it, and then asked for questions.  And in your own home.....  I wasn't wearing shoes.... I should have been wearing a "power-suit."

Had our team lost hope?  Did they not love Grace?  Do they not believe in her?  Are we just their job?  I'm not giving up..... were they?  I cried.  I cried all the way back to work.  I tried to concentrate.

But as always it only took a little time with Grace to realize that it is my job to be Grace's advocate, my job to be her constant, my job to encourage, dream, and cheer.  I only have to do that ---  ultimately what that paper says does nothing to define my daughter.

And as if Grace felt she further needed to teach me, as she and I shopped last night at the grocery store, in the vegetable section, Grace on my hip, swinging her legs... she happened to kick over a pole that holds those plastic bags for your vegetables and fruit.  Anyhow, the roll of bags went flying the pole made a big noise - and a woman came rushing over to help me.  She pointed at Grace- poked her in the tummy and looked at her warmly saying.... you did this didn't you!  I wanted to yell -- Yes she did!   I love her!  I'm so proud of her!  She's my two year old!   Instead I said -Yup it was her - with what I imagine was a huge goofy smile on my face. That's the story I will remember - that I will tell her - and that I will tell other people when they ask about her.

No Yoga in the bathtub!

Grace has a move that we were informed is called "downward dog" in the world of yoga. (See picture of Grace's interpretation).  Last night I was giving her a bath and she wanted so badly to do her downward dog in the tub. Grace is a girl with very few rules, they haven't actually been all that necessary. However, as she sat there trying to catch the toys floating by we had our very first serious rules oriented chat. She proceeded to ignore me, and as I was finishing the talk--she did her downward dog in the tub. I just laughed and held onto her. I guess sometimes that is all you can really do. 

Thanks for listening!  Joy 

2008 Catchup

Many things have been changing in the world of Grace over the past four months, apologizes for not keeping you all posted.

As you can tell by the video link in the pervious post, Grace is now crawling! She has been progressing significantly recently and it all ties back to a change that was made in February in response to a formula change back in December. As you may know Grace is on the Ketogenic Diet, a high fat, low carb diet used to help control her seizures. Overall it has helped, but as we continued to increase the amount of fat in her formula we began adding a product called MicroLipid, basically liquid fat (think gravy, mmm). Since adding this MicroLipid and increasing it, Grace experienced increased vomiting. We unfortunately could not figure this very simple cause and effect relationship out as Grace started experiencing some of the vomiting in December when she had a little flu bug and it just never resolved. Low and behold after racking our brain with grace’s new GI, Dr. DiMeo and going over every little detail we realized that it had to be the MicroLipid. Since the early morning feed was the one causing the most problems we cut the 6am feeding and added it to the overnight feeding, we also increased her water intake to increase hydration and vowla no more issues. This all took place in early February and since then Grace has tacked on 5 pounds, started crawling, had increased energy, and she is standing whenever she can! It’s amazing what a small change makes in her life.

Currently Grace is having on the average one seizure every night; we are making adjustments in her medication and trying to make it through her current teething.

Grace Crawling

For your viewing enjoyment we now have a YouTube Channel!

Check out our first video of Grace Crawling, more soon to come!

Hurtful Hack

There was a story on the CBS Early Show on the National Epilepsy Foundation Website being hacked to display images that may invoke a seizure in a person that has photosensitive epilepsy.

This is the first known attempt in which a website was hacked in an effort to cause a person physical harm. Foundation officials are working with investigators.

Dr. St. Louis from the University of Iowa was featured in the piece, here is some info from CBS News

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3981552n&channel=/sections/earlyshow/videoplayer500202.shtml

Isotopes and Reflux and Hives! Oh My!

Grace has been having some ongoing problems with keeping her formula in. We have been venting her for twenty some minutes before feeding her getting all sort of gunk out of her stomach, sometimes really mucusey stuff and other times not so much. It seemed to start when she had a little cold back in December. After much effort we finally got into see Dr. Slovan, Grace’s GI doctor.

Grace has an isotope barium test once again she had a couple back in the late summer and fall of 2006 to test for reflux. Grace went off of Prilosec back in August when she started the Ketogenic Diet mostly in an effort to reduce the carbs she was taking in and she was on a relatively low dose so it was presumed that it would have little effect on her. The past month and half have proven otherwise and her reflux has come back, her fundoplication defiantly helps with it but it looks like she will need some medication.

Grace was started on Friday on some Prevacid, On Saturday after her second dose Grace started crying and could not be contented, she was itching her ears and her faces was turning red. Joy quickly notices the Grace was breaking out in hives all over her body. We called the pediatrician they could see her which was great news otherwise we would have had no other option be the ER, and every hospital in Des Moines is already at capacity so there would most likely be a wait. All in all twenty minutes probably pass by from the initial onset to when Grace was given a shot of adrenalin and she instantly started looking better. We are sort of like a mini-first responder team, I am thinking about getting an ambulance siren installed in the Impala.

Grace had a breathing treatment as well at the clinic as she was sounding a little rasping which she didn’t until after she broke out.

We can only conclude that Grace is allergic to Prevacid, she has started a five day course of Prevacid (steroid) to help. Rather than trying to push her on another drug we will wait until Monday before determining our next course of action for her reflux.