So a Leo update....his seizures appear to be under control with the meds. He went for a repeat EEG in mid-June. They told us to keep him awake half the night and don't give him any caffeine so he would sleep during the test. The conversation was laughable. Leo sleeps when he wants to sleep and there was a good chance I had some Mt. Dew a year ago when I pumped that breast milk....but we tried our best. Our nurse tried to keep him up but despite the best effort he cried during the whole test and didn't sleep at all. Gluing a ton of probes to his head and not allowing him to sleep on his flat spot ticked him off. Anyway he didn't appear to have any awake seizures at least. We go to see our new neurologist in Champaign on Tuesday. Peoria will only see kids inpatient right now since they lost two neurologists this year. I don't think his eye movement and focus is as good as it was before the seizure, but overall his mood and sleeping patterns are much better. He is up to 7 hours per day on the PMV. That means one more week and he can start weaning off the vent. Sounds great!....except he has gotten to this point several times and always manages to get sick right before the wean. His eyes have been good for the most part but we were on antibiotics last week fighting some redness and dryness. He seems to have beat it without a trip to Peoria!
Therapy has been exciting this week. A friend we met at Easter Seals let us borrow a stander they are no longer using. Leo has his own on order, but it takes about 6 months to actually get it. We lay Leo in it horizontal and then push a button to make him vertical. We don't necessarily think a stander will lead to Leo standing on his own (we can always hope), but it should allow his hips and joints to develop properly. It also will help his breathing and hopefully motivate him to checkout his surroundings. So far he seems to kind of like. It also gets his bowels going (pphheww), comical but good. In other therapy news....he got his very own head pod delivered this week. It looks like a torture device that hangs Leo's head from a stand while he sits or works on Tummy Time. It sounds awful, but it seems to give him a new sense of freedom. It allows us and his therapists to work with his hands instead of focusing on keeping his head him. We are hoping both devices will lead to better head control. We have also been taking him outside quite a bit lately. He used to just cry outside, but now he seems to like it as long as it is not too bright or hot.
And nursing.....good news is all four of them have stuck with us so far. The 17% cut was supposed to change to a 2.25% cut on July 1st but since the stupid government cannot get their act together, the agency is keeping the 17% cut until a budget is passed. They said they will back pay the nurses for July, but not May or June. I feel like our family is one of the lucky ones. Agencies are not taking any new cases and we know several families sitting in Peoria waiting to come home. I'm sure just Peoria alone ate up all the savings the government thought they were making with the May/June cut. It costs 6x more to keep a kid in the hospital than at home. The State Rep for Heyworth actually came to Heyworth a few weeks ago on part of his tour of his district. Only us and two grumpy old men showed up so we talked about Leo and the Waiver for 1/2 hour. Unfortunately, I felt like it was a waste of time. He just kept circling back to the fact that the state needs to operate on a balanced budget and Medicaid and Education are the two most expensive programs. Yes true, but if you just do blanket cuts without digging into the details, you are going to end up costing the state more in the long-run. The state's 500 waiver kids cost millions in the hospital. He said he would read all my research and handouts and get back to me. He did follow-up with a stupid typed letter not even mentioning the Waiver....I'm pretty sure the grumpy men got the same one. I guess a shred of hope is that our parents group may soon have enough evidence to get a law suit going about the cuts. A law suit would likely immediately suspend cuts and hopefully lead to a long-term pay raise. It has worked in the past. We truly appreciate everyone's support and time spent fighting for us. Nursing is currently good, but never easy....I have time to write this post right now because our night nurse called in.
In Sammie news.....Dad has been keeping her super busy with camping. We bought a camper at Christmas time and Terry and friends and family are making good use of it. I'm thankful Sammie is making so many memories. Terry is so great with the kids. Last weekend the Nephews were in town and Terry took all 4 kids for 2 nights and then did fireworks by himself too.
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