Tuesday, May 15, 2012
Sorry for leaving you hanging...
Wesley was released from the hospital on Thursday afternoon about 430... Just in time for us to make it back home by 5:40 to drop Wesley off to Michael and pick up the two little girls along with Kristopher so we could go see the girls' end of the year program for their church group. Headed home after that and got everyone in bed then went to sleep for a much needed FULL night of sleep. Only somewhat interrupted by Wesley's needs since Michael got up with him most of the time. Friday seven kids and I headed down for a 40 minute drive to go pick up new glasses that are "unbreakable" flex frames for six of the kids. I was exhausted, Wesley was somewhat sore, but we all survived the trip and we now have everyone's glasses which is a benefit for sure :). That evening we all headed out to Michael's softball game for church league and had the ever so healthy McDonald's dinner at the ball field (our typical Friday night stop in... It just works...). Saturday started with horse therapy, however Wesley sat this one out at home, and I kept the other 4 kids that rode the previous week home with me as well. After lunch I took off for a solo trip to Sam's (last trip I overdid it by pushing a stroller and pulling a very full... Very heavy cart... This time I went alone!). Made it home from that and unloaded the van then we set out with all 8 littles in tow to go to Lowe's and look at bathroom vanities. Ours has some water damage and since the bathroom was torn up and new tile, etc is going in, it makes sense to go ahead and put in a new vanity now rather than waiting and having to make due later with any changes, paint, etc that is done. We found a few that will work but decided against purchasing one just yet (we have some time befor we need it, and are running out of storage space!). We got home in time for a quick and easy dinner, baths, and bedtime for the kids. Sunday started out rough with kids crying before we opened our eyes. I got up at 530 to deal with them and didn't get back to sleep even though the culprit did. At 7 there was another bout, this time fighting, so then I was really up for the day. Another day of struggles getting one specific child to dress and come out of her room with her clothes on properly... and a rushed breakfast which meant I ended up with a pop tart at some point. Then off to church where we were texted to go to different parts of the campus for different kids that couldn't seem to behave that morning. We kept Wesley with us since he was still in recovery mode from surgery, and Aleksa always sits in church with us, so when we got the text about the third child needing us to come, that was when the morning was done in (5 out of 8 weren't handling church well at that point) so it was time to go home. I had written off the idea of that day being Mother's Day well before that point in the morning. I hadn't expected anything wonderful and exciting, but that day turned in to a bad days from the first minute... Worse than a "normal bad Sunday" which for some reason we have on a pretty regular basis. It was just a bad day... Not a bad "Mother's Day". The day continued to plummet, and eventually I snuck away (hmm... Internally?) and went to the river and read a book for an hour, treated myself to a strawberry lemonade, and made my way back home. I had made shepherd's pie for dinner and Michael fed the kids and had started getting them in PJs when I got back. A sweet goodnight to our children and I did my third load of dishes for the day, got things ready for the Monday morning IEP meetings and finally went to bed. Monday got better :). I had a sitter coming early and Mike brought the three boys to school while Wesley and I ran to Publix to pick up muffins to share with the IEP team. We haven't trained any of our sitters on his pump yet and Wesley was still iffy on how he was feeling, so we decided to err on the side of caution and bring him along with me to the meetings. A two hours and twenty minutes later, we had two sets of evaluations for disability labels (ID-intellectual disabilities) for James and Micah along with new IEPs ready for us if we decide to enroll them in public school in the fall. They do know that we ae planning to homeschool the little boys along with the four current homeschoolers, though. As an aside, it was suggested to us that we go ahead and do the disability label testing for the boys simly for the idea that if we want to enroll the boys in the near future, that part is out of the way. In addition, we were counseled to do he testing and keep the results filed so that if any question about our homeschooling was to come up, we would have school based test results which show that our children all have disabilities that reflect a difference in their ability to learn. What I mean by that is that the FIRST responsibility we have is to do right by our children, and by homeschooling we ad doing just that. But second, we have to do right by those implementing the laws which regulate schooling and child protection. We will report to the district annually, and it likely will not reflect the amount of change that they expect to see in a year time for most of our children. Having school based test results a reflecting that the children have disabilities which impact their ability to I progress as a typical child might is beneficial to be able to produce if questioned. Stinks that we have to think that way, but this is a reality here... Especially with multiple disabled children. :). Last night Michael and I moved all the furniture around in our family room, preparing it so that the construction crew can break through the wall to make a new hallway entrance and so that the electrician can get to he things he needs to get to in order to get all the wiring set for everything. That includes moving both our homeschool cabinets (and purchasing and building another since we were already tight on space!), moving the couch, chairs, our big area rug... Might not sound like much but it took about an hour and a half to do it all with both of us working on it (ok, I helped with the building of the new cabinet only by reading directions from a chair... I was done in!). Now it's almost a week since Wesley's surgery and he has slept through the night TWICE (YAY!) and hasn't had anything but a morning dose and an evening dose of pain meds when we clean his incision area. The phenol and Botox are already kicking in and he is able o scratch the top of his head, extend his arms upright, lay RELAXED with his legs on the floor, and other things which are wonderful to see! He's back to his mischievous little self and finding new ways to make trouble, which is great to see :). His new corner chair (a Kaye product we purchased from Amazon for him) is working great, and he is receiving sits tube feelings primarily while playing in that chair. He's coming to the kitchen when we eat as a family and having part of whatever we are eating... However much he can handle without any pushing or fighting for him to eat. That is AWESOME. This morning we offered him a Pediasure prepped like he was receiving last week and I *thought* he was going to be excited about drinking by mouth (so far it's been mostly food and meds, with some liquids use to wash things down) but to my surprise, he drank about 3 oz and didn't want the rest... And that was after not eating all night. I am thankful for the feeding tube, and I'm pretty sure he is as well! Already his life has become less about "getting in calories" and more about enjoying playing, enjoying eating, and having energy to take part in family life more. Another busy yet productive week gone... More adventures ahead I'm sure! :) Just 8 more days of school!!
Written by Meredith at 5/15/2012 02:16:00 PM