Wednesday, July 14, 2010

"more more more"

I am hoping that all my fellow bloggers continue to read even after my last depressing post; I try to convey my life honestly. Some days are great... and others.. not so much; which I know must be the same for many people. So lets just be honest and ride the waves with each other.

This week has brought about some positive changes. Ella and I have been working hard on potty training so she will be ready for pre-school in the Fall. (The program asks that children be out of diapers.) Originally I thought of this training as a dreadful chore but then decided to have a change of heart and be excited about this new step. I took Ella alone on a special mommy date; we went way overboard and selected MANY pairs of awesome underpants (girl and boy pairs; because she wanted Cars and Toy Story as well as princesses). We then took our underpants; the new "eye doctor kit" (a splurge) and went to lunch. We sat across from each other and ate while Ella listened to her own heart with the stethoscope. A rare moment for us and a memory I will cherish. I am still trying to keep up my motivation even when cleaning poop out of big girl pants; but overall she is doing well. We are on our way....

William has been consistently hitting his communication switch to ask for more during meals despite the increased seizures. It is a simple device that has my voice recored onto it saying, " I want more." I put it on the far end of his tray while he is eating so that he has to purposefully reach and hit the button. I am not sure that he sees the switch but he feels for it and then hits it... again... and again and again!!! :-) He is very demanding when it comes to food and I could not be happier.
And finally I received a long awaited call from our pediatric genetics office about several tests we are doing with William in our search for a specific diagnosis. Our doctor already tested for "hundreds" of more common syndromes and completed a micro-ray analysis which shows that his chromosomes are typical. Of course we know via MRI that his brain is not typical; he is missing a lot of tissue in the center and the occipital lobe is smooth versus a normal brain which has ridges and folds. These last few tests were for more rare syndromes and ALL come back negative. We may have one lead; a blood test showed elevated protein levels. I am taking him in to get another blood draw next week for a re-test and then testing for some metabolic disorders. I spoke briefly with a genetics counselor over the phone who told me high protein levels could simply mean he ate to much chicken or his body is missing some enzymes that break down proteins and high levels could be toxic to the brain....hmmmmm... I hung up the phone thinking genetic counselors are evil. Of course they aren't and we just need more testing and more information to work with; but alas the wait goes on....

I will update more when I know more... ( I like the dot dot dots :-p ..... )

On the lighter side; my birthday is approaching and I am going on a much anticipated trip with Wayne to Toronto for the Jack Johnson concert!!! We are going with my lovely sister Katie and her boyfriend, Ben, so it should be a fantastic time. Hopefully a time to relax enjoy some good food and drink, let loose, and reconnect.

Thursday, July 8, 2010

Today I Cried

Most days I count my blessings (so to speak) and feel incredibly fortunate to have two beautiful children. Some days I cry.... because I love my son and want so much for him; so much that he can not yet do. Today was one of those days; the tears were unstoppable. Even though I know how fortunate I am to have my healthy and beautiful children today was once of those days that I wanted to go back to bed, bury myself in the covers and cry myself back to sleep. My son has had some rough days; lots of seizures... which makes him irritable (understandably) and then very sleepy. This is the reality with William. We will have several good days where he is cooing and trying to make eye contact; alert and happy. He wants to be included and loves hearing Ella's voice. He hits his light up toys and has a voracious appetite ... then we will have several days of sleep. Days that I struggle to keep him awake long enough to eat a meal without choking, days that I miss his eyes being open. I call these the absent days and I miss him horribly; although he is physically present yet absent... my heart literally aches.
On these absent days my mind is raw and exposed to wander to dark and depressing thoughts. Thinking about the grey and gloomy "what if's"..... On these days Ella is my light... her laughter; her humor and her precocious attitude keep me going.
Today was Thursday; our weekly parent/child group at a local school for children that have various special needs. My mom took Ella on a special date so it was just William and I going to the group. I was excited for a chance just to focus on Will during the class... he had other plans. He wanted to sleep... so I tried to wake him and it eventually lead to a complete melt down. He was inconsolable and I had had enough. It has been a rough week with preschool evaluations; checking "no" on so many developmental milestone boxes; trying to tell professionals (that I had never met before) how he HAS made progress even if it does seem small.. only to hear an indifferent, "aha...ok well, next question."
So I made excuses and left todays parent/child group; I raced William out to the car and broke down. Completely sobbed... until I was calm enough to drive. William slept in his carseat... I drove around town just listening to some of my favorite music until the tears were gone. When we got home William woke up and smiled; glad to be home and I was ready to face another afternoon.. eager to see my daughter. Once in the house William feel asleep again and slept most of the day; I had to wake him for meals; he choked a lot. Another day of absence; my heart aches.... and yet tomorrow is a new day. I hope to see his beautiful blue eyes more often tomorrow....
now if only I could force myself to sleep and think of tomorrow

Monday, July 5, 2010

Delicious Summer Time

In the Summer time when the weather is fine;
we like to take our time .. soak in the sun
feel the warm breeze on our skin
taste some delicious treats,
and take a swim..... seek shelter in the shade
and then begin again..

Sweet William
Ella eating a treat at Grandma's house
Family pic on Grandma's Ranger
Trying some of Grandma's famous Mustard
Dipping into the Lake with my cousin
Ella heading for the waves
Ella and my cousins Boys; Quint and Russell