First week off of school (an over-due update)

Pictures are from Grant's 10th b-day on June 13.

Will the school year 16-17 be the year of the g-tube? Could Grant be ready to eat again? After last night, my spirits are really lifting in regards to the eating topic. I didn't want to cook and I asked him if he wanted pasta. He was extremely excited. So we skipped his evening's dose of formula and offered mac n cheese, coleslaw and a variety of fruits. He at the mac so fast he nearly choked twice. That part was scary of course, but he's ready. He's been eating all week. He has been trying foods he has never had before. BBQ sauce, brats, catchup, ranch. Yes, yes, yes, yes. I am cautiously optimistic. I have also made oatmeal twice and neither times will he even try it. This was one of his favorite foods. Last night, he nearly made a huge mess. He is still not trust worthy around cups of liquids and plates of food. I had to feed him because of SIBS and because he will grab things very fast and make huge messes. So sigh...this is still A LOT. Or as I have been teaching him to say, as of lately, "too much".

As for KKI and a round of urgent calls, things have sizzled back to nothing. My last phone call was hard. I tried to fish around for a clue to when he might go. End of June? End of summer? Please tell me next week? Nothing. I think there might have been an opportunity and his damn shark teeth/dentist visit gave that opportunity away. Well, I don't really know because she wasn't going to even hint at it.

Despite that, I have bought some new travel size bottles and have printed off his packing list. I even meant to bring up the luggage from the basement, but then I realized that takes 30 seconds is not worth the visual mind clutter that we don't know when he is going once again.

I have had a very hard week despite what I wrote above. SIBS are non-stop and hard as hell. He is probably struggling to understand why he doesn't go to school, but on the other hand he hasn't asked for the bus like he normally does. Further evidence that Grant takes in so much more than he can give us back. Despite what I just wrote, his expressive output his continuing to improve. He tells me in his own way about things that are very, very hard for him to say. He doesn't have filler words like the, and, etc. So you have to piece together a few verbs and nouns. He stutters and stumbles, but I can figure it out. Probably because I am his mom. I love how hard he tries. These moments are increasing and I love it.

We had a great week with our new PCA, but I have lost many hours with our other one and it feels like a huge loss. I don't have a lot of down time and I am not sure I know anyone that could help me with the 12 hours of help I could really use. I am not excited to hire a stranger. Not only do I have to train intensely, it will take a long time for him to warm up and want to be with this new person. I am contemplating ESY services for the respite I am desperately needing right now. If you know someone...send them my way!

I have more good news! Grant has received a really wonderful and generous donation from a family member's family member. I am not sure if they would appreciate me saying their name, so I will leave it at that and proudly announce that this means we have now reached over $9K in donations from all of you. THANK YOU. I am humbled. This is AMAZING.

And lastly, Grant is 1 of only 2 children in our county to qualify for a switch to what is called a DD waiver. This will financially give him/us many more options for assistance. This is paramount to us, as we will be needing intense behavioral services upon return from KKI and I have promised myself to work harder at finding more day-to-day help with G when I am alone.

There have been equal number of sad tears as of lately to happy tears. So I basically am crying all of the time!