Today was the last day (really 2 hours, not a whole day, don't get me started) of school for my 2 youngest. Kier finished last week, Liam was done by Tuesday of this week, M & N today at 10:30. We made it through another seemingly endless school year. Yay us! We officially crossed the finish line for the next couple of months we are on our own schedule, whatever it might be. Yay!!!!! I'll admit, there have been a few times this year (really every year at this point) where I wasn't sure we were going to make it. Excitably relieved we're done. So here is where I post the beginning of school year pics vs the end of school year pics for each of my kids....I should really post before & after shots of myself as well. I doubt I will but I should. ;)
It always amazes me how much they change in just one school year. Kier's before was rushed & he refused to hold up a sign. And his after is his portrayal of what his senior year did to his mind. Dork! :)
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Today was also the yearly check up with the Special Needs Clinic & the Rehabilitation Clinic at Children's Hospital in Milwaukee. We saw Liam's GI Clinic doctor last week & are happy to report that Liam is 94.5 lbs. This is a fairly big deal for us...just 3.5 years ago we couldn't get this kid above 50 lbs. No matter what or how much we forced him to eat. He just burned it off as soon as it hit his digestive system. Burned for the energy & strength he didn't have. That's what 'failure to thrive' looks like. He is so close to hitting 100 lbs & it would be such an amazing achievement that I have decided that as soon as he hits the triple digits on the scale we are throwing him a 100 LB Party! As that is a huge accomplishment for a kid who is labeled "Failure to Thrive". Invitations will go out to everyone we know, not that we expect them all to attend but it's also an excellent way to spread the happy news that we got him to triple digits, finally! Keep a watch on your snail mail. This is going to happen!
~~~~~~~~~~~~~~~continued the following Monday evening~~~~~~~~~~~~~
At the check up we talked about the severe muscle spasms Liam has started experiencing in his upper/inner thighs as well as his lower scapulas. The doctors feel very strongly that this is due to his continued reliance upon his wheelchair. Even though he isn't in it all the time, & he gets PT at school, as well as some basic stretches at home. His muscles are atrophying due to lack of use & his bone density is declining from the same. They are going to be contacting a pediatric physical therapy company in Kenosha to set up in home treatments & to equip us w a stander at home in order to give him some heavy duty workouts. Of course all of this has to go through insurance first so it could be a few weeks before everything is set up. I'll keep you posted. Other than that he also saw an opthalmologist last week because he was seeing flashing wavy vertical lines in his vision from time to time that has the 'occasional' accompanying headache. After checking his eye health & dilation it was concluded he is having recurring Ocular Migraines. Just another thing to add to his ever growing list. But because of the migraines, his neuro appt will be negotiated to a much closer date then next December. It's been 3 years since his last MRI & with this lovely new condition, it makes it important to investigate further deterioration in the cerebellum. We also discussed the fact that he is 16 now & his time with pediatric doctors is coming to it's conclusion in the next 2 years; therefore, it is time to start the process of searching out adult care. Which makes me so sad because we have never been cared for as well as we have been since coming to the special needs clinic at children's in Milwaukee.
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On Tuesday of last week, we received the sad news that a fellow A-T family had lost one of their precious children to the complications of A-T. We happen to know this family well, when we were living in St. Louis, MO (briefly), we met them. They live in central Illinois & attended many of the same drs that we did at St. Louis Children's hospital & after visits with doctors in MO they met us at Dave & Busters for dinner & play time. They have 2 children, who both have A-T. Emilee (Emi) just turned 20 this year & their youngest Josh is about the same age as Liam. A wonderfully, fun, feisty, down to earth, warm, loving family. It was a shock to know that Miss Emi was sick & then to hear of her passing was even more of a shock. As we are only 4 hours north of them, we attended Miss Emi's funeral on Saturday. It was a long emotional day for our whole family. But not something we would have ever missed. Seeing what lays ahead for us, seeing how much pain our friends are in & knowing there is nothing we can do but offer hugs & love. Emi was beautiful. And the service well represented her loving, fearless look on life. She is missed greatly by her friends & especially by her loving family. We feel so blessed for having her in our life, however brief, and are so grateful for their family's friendship. She is A-T free now & watching over her brother Josh as continues his fight against A-T.
We love & miss you Emi. Thank you.
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Yesterday (Sunday) was spent doing nothing but catching up on sleep & allowing our minds & spirits time to heal & recharge. Today we were back up & running. From tidying up a messy house that was ignored all weekend long, to a dentist check up for Kier, picking up dog food, to writing snail mail letters to friends, to making a million phone calls & organizing paperwork from the end of the year. Now I sit with a heating pad alternating between my knees & hips because a thunderstorm is headed our way & my fibromyalgia is not a fan of weather changes like that. I felt fine this morning but by 4pm this afternoon I was starting to stiffen & ache. I sit, blog, drink herbal tea, listen to soft music & pray the storm gets here soon & moves on quickly, for I have more to do tomorrow & need less pain in order to accomplish it all. Sending you all love & well wishes for a lovely evening.
Love,
Jess