It's been a long time since I've posted.
Jeremy has 16 days of summer vacation left, where did it go. We have had an absolutely nice summer, J-man gets up and gets to do his own thing. Jeremy really enjoyed the week at Camp Barnabas. We then took a joy ride the week after to Springfield to see Dr. Dan, and got there early enough we got to eat at Lambert’s which he dearly loves & laughs when they throw the rolls. In the morning, when I unlock the door and turn off the alarm, Jeremy will scoot a kitchen chair to the window and watch for Kristy, his wonderful, awesome, HTS to come in. Jeremy then starts talking up a storm. Kristy has done some super fun things with Jeremy and we love her.
I started teaching Sunday school this summer and am loving it, love the children and Jeremy has been going to Sunday school, sits good. I am starting to try to transition him to worship, our first week he didn’t even make it to worship, but he will get there.
Jeremy gets a new teacher this year and a bigger room, they got the expansion done and I'm so excited. The same nurse who took care of him at school will also be there again this year. We go meet the teacher and see his classroom on August 14.
This weekend is our annual OGE expo, I take 3 of my nephews and they help with Jeremy while I work. They love going, swimming in the pool and watching the lineman compete and getting free giveaways. We come back Saturday exhausted.
We did go back to Genetics 101, as Jeremy’s issues don’t seem to meet the FG syndrome diagnose. We did see the New Geneticist who does
Telemedicine from Arkansas Children’s, he took Jeremy’s pictures and history and presented to a board of 25 Geneticist and no one had a clue or had seen a child similar. We got approved and did the Full Exome Sequencing test, this will test his 46 chromosomes to see if there are additions or deletions. We did this June 5 and it can take up to 6 months for any results.
We have had an amazing summer but we’ve had some not so great news
I was sad that my cousin’s daughter Morgan, passed away on July 3 after a long battle from a car accident in December. Morgan was 16 when she had her wreck, turned 17 in the Children’s Hospital at Arkansas, she was doing good at rehab ready to be discharged in June when her organs started shutting down. Morgan was an amazing young lady, dedicated to GOD and a ray of sunshine.
Jeremy has had some major regression in his mobility, he will hardly use his walker, or stand on his legs very much and falls quickly. Our PT feels that its related to his knee overcompensating. We are going to try some knee braces to see if that does help him.
We also got some not so great news at his last Pulmonologist appointment, the numbers that measure pulmonary hypertension continue to increase and although they aren’t to a point to treat, they continue to rise. We will see the Pulmonologist in January and he will repeat an echo and keep tabs on this. I don’t know what this means to Jeremy, but I suspect highly that winter bringing on colds, bronchitis, pneumonia is not going to be our friends or be kind. Jeremy will have a higher risk of being hospitalized and on a vent. The one thing that I do know, is the same power that rose Jesus from the Dead, the same power that commands the dead to wake, that moves mountains when he speaks, that can calm a raging sea, is living in me. I have hope that his promises are true, in his strength there is nothing we can’t do. Greater is he living in me, he’s conquered our enemy, no power of darkness, no weapon prevails. I stand in Victory…. (The Same Power, Jeremy Camp). This is quickly becoming one of my favorite songs.