I'm so behind on blogging...obviously. It's been a beyond hectic few weeks. I don't even know where to start.
Bob~ He's busy working like always. Right now he's gone 12 hrs a day, 4 days a week. when he is home we are running errands, doc and therapy appts, cleaning house, and trying to in general play catch up, and spend as much time together as a family as possible. His van is no more, so we found a car and bought it. We did test drive it check it out, got all the details, etc. Drove 2 miles and there was an explosion noise and the car died. The man refused to refund. We had to have it towed and it's now at it's 2nd shop. They wires to the engine had been purposefully rigged. Blew all the engine lines and wires that give it power and the master fuse box. We have almost spent more than repairs and tows than on the vehicle. We are suing obviously. So right now we have 1 vehicle, and no money. pretty fun stuff.
Emily~ Has completed 3rd grade, and looking forward to starting back into school hopefully next year. She's doing pretty good. She's still seeing her therapist each week and they are working on boundaries and conversation. If we could just get past the attitude life would be great! :)
Jace~ He's finished 1st grade! So much change has happened in the last few months in our new school district, academically. Other than that he's a mess. He's been hiding one of his stomach meds and refusing to take it, so his stomach has been a mess. His attitude has also been a mess. He's very brutal physically to the other kids and to us. He's always looking to fight, and it's harder and harder to keep up with him physically as he's a big solid boy. I'm exhausted dealing with him, and don't have alot of ideas on where to go next.
Ben~ He's graduated from PreK. It was a tough goodbye on the last day. His teacher for the last 2 years is amazing and will be greatly missed. She cried when saying goodbye to Ben. It was rough for everyone. He's already counting down the days until kindergarten. He's doing much better with his cast. Around the house he is walking decently, and as the day goes on and he starts getting tired he just crawls around with his cast in the air behind him. Out and about he's carried, in a shopping cart, on in his wheelchair. By bedtime he's absolutely exhausted and crashes hard. Right under 3 weeks left until he gets his cast off. We are working on some charting to find out what might be triggering some of his meltdowns and obsessions and freakouts. We meet again on Saturday to see what next.
Ari~ Life is same as always with her. She's the little princess. Her OCD and sensory issues seem to slightly increase with each passing day. Her food aversions are worse than Ben's ever were. She's slowly slimming down, losing the last of her "baby fat". She's still randomly working on potty learning, some days it seems like we are getting there, and ohers not so much. Taking it slow and trying to let her lead the way.
Eli~ He's doing pretty good. Completely over his pneumonia. He had his sedation MRI and did great. Still waiting on the results. They also ran all of his DNA and chromosomal testing, and now we wait 4 weeks for the results. If they find what they are thinking MIGHT be there, then we have an answer for almost everything. If they don't find it, then we are back at square 1; no clue. We don't want either of the above to be the case, if that makes sense. His therapy team will be switching next week. He'll now have OT, PT, speech, and a nutritionist. We are looking forward to meeting his new team and getting started. His doc has again adjusted his feeds trying to get weight gain to resume. We are also going to try and mash up some avocado and mix it with breastmilk and see if we can get it thru the tube.
Me~ Hmmmm. I'm having horrible headaches. It's now so bad I'm waking up with them, and going to sleep with them most days. It starts behind my ears and goes all the way behind my head. Most times it hurts to even touch my head. Everytime I try to get into the doc something happens with one of the kids and I have to rescheduale. I have it set up right now during one of Bob's days off, but her 1st available time was another 3 weeks away. Go figure. It's just another thing on the list of goofy stuff going on with me lately. Not sure if it's the stress and lack of sleep, or what. But something has to give soon. Other than that nothing new with me. I spend every minute of every day keeping up with the kids, the housework, doctors, medical supply companies, nurses, insurance companies, paperwork, inventory, therapies, appts, transportation, cooking, etc...sometimes i even find time to eat 3 meals in one day and pee more than twice a day!
What's coming up for June? HMMM. tons as always. Eli has his recheck with the surgeon, pediatrician checkins, still pushing to get him into the pulmonologist sooner, and his portable bag will be here soon so we can play with his feeds more, and his test results. Ben's got his recheck with his orthopedic surgeon in june, and hopefully the removal of his cast. I have my doc appt. Emily is getting her hair cut off. And who knows what else.
July brings tons to. Eli will have all his appts. We are taking our 1st family vacation with all 7 of us. Bob will be off work for 10-14 days. We are going to Missouri to a wedding, Kansas City for Eli's next testing and check in with his kidney surgeon, then Bob has his next round of testing and his colonoscopy. Fun, busy times. The kids are really looking forward to our vacation and staying in such a large hotel suite. Bob and I aren't quite sure how we feel yet! :)
I promise to keep up better with blogging and updates. I will also get some pics up over this 4 day holiday weekend coming up!