OT Services Cut

On Friday morning, Alicia returned to work with Karina. The house was a lot louder in the morning. I went to school. Apparently, Henry still had some digestion problems, so Karina's dad picked her up. Alicia stayed until 3PM. Jeff took care of Henry in the afternoon. I got home with dinner from Sinbad's around 6:30-6:45PM. The boys were asleep. Apparently, Henry crashed after the dog walk at 5:45PM. He slept for 12 hours straight.

On Saturday morning, Henry got up at 5:45AM. He had some pancake. We took him to the Grandparents' house at 8AM because we had to go across town for our CPR/First Aid certification. It lasted until 3:30PM. Alison, our family specialist, was the trainer. She did a good job. We feel much more comfortable about some of the CPR instruction, which we had received initially from UMC before Henry left the hospital, which is good. I was happy with the class. It was about half the size of our Monday night DDD class (about 10 people total today). Jeff was a hit with the other members of the class when it came to role play. But he was chastised by Alison for his claiming to be Dr. Mark Greene when asking me if I gave my permission for him to attend to my wounds. False credentials.

Jeff dropped me back at the house after class. Then, he went to Children's Orchard and Trader Joe's before picking up Henry. In his absence, Cuyler called to cancel Henry's Monday appointment. Henry is supposed to receive OT evaluations every three months. But apparently, his early intervention developmental coordinator did not enter that into his record (and didn't tell us), so he won't be receiving those services. The state has put a freeze on "new" services; because Henry isn't in the system (again, thank you EI coordinator for the error), any service that he receives from Cuyler (who has known him since he was 2.5 months adjusted) would be considered new. There is a freeze on the computer system, so the error can't be corrected. Yes, we could fight it. By the time it would get sorted out, he'd be outside the span of early interventions age 0-3 range. Sigh.

We think that Henry is doing very well. But the literature is clear about preemies and problems appearing later, our son needs to be monitored. And, honestly, we have a couple concerns about his development. He has some subtle issues, but I don't want them to become big issues. And the point of EI is to catch things early.

I know that my mom thinks that Henry is the best thing ever (and he is) and that he is super smart (and he is). To quote Grandma, "He couldn't be any smarter for an 18 month old." So why am I looking for problems? The bottom line is that I know the literature. Henry has defied expectations that the literature would predict (of course there are always outliers in just about every situation), but I can't stress enough THAT PROBLEMS IN PREEMIES OFTEN APPEAR LATER. Our job as parents is to make sure that we head those problems off at the pass if we can. Honestly, if Henry stays on the same developmental trajectory that he is on, he will in all likelihood be a genius. And we have wondered whether we challenge him enough cognitively. We are very interactive, but we don't have a set teaching agenda (other than trying to teach him that Shinseki is the Secretary of Veterans Affairs). But again, see my previously capped, bolded, and italicized statement for my concern.

My father has said from the beginning that Henry was going to be great (and he is great) and that he had faith that Henry would be fine. I certainly hoped that he would be. Lord knows I prayed for it and continue to pray everyday for the health of my son. But I didn't know that he would live. I didn't know that he would thrive. And frankly, there were several problems that I caught well before the doctors or nurses did. Should I have not read and researched and just relied on faith because it was all destined to turn out well in the end anyway? I cannot say what would have happened but for me catching problems early. I can say that I'm surprised at how much doctors don't know and how many (not all) of them don't seem to be intellectually curious about preemies in general or about the functioning of the inner workings of their patients as individuals or just don't have the time to be so. Why did I catch the problems before the doctors? Because I learned my lesson about taking things for granted when I realized that my OB was incompetent and put my life and Henry's life in danger. I have no intentions of making that same mistake twice. And at some level, doesn't God help those who help themselves?

So what are Jeff and I concerned about? Some sensory issues. Mild ones to be sure. We know that when Henry walks, he isn't as comfortable swinging his right arm. He holds it close to his body. His left arm is able to swing freely. He certainly has the ability to use both sides, and he is able to put weight on both arms. I've mentioned that he is sensitive about his hands. I don't know if I mentioned how he has to stick his hands under something to order to relax and fall asleep. He's been doing that for a long while. I'm guessing that he started it around 9 months adjusted or so. When he sleeps with us, he'll often try to slide his hands under our arms or sides (we definitely know when his nails need to be cut). There is some kind of relationship between his ability to relax and having some pressure on the tops of his hands. Lately, we've let him slide his hands under pillows, which sometimes provide the same comfort for him. Is this a life-threatening issue? No. But we'd like to aim higher in our aspirations than mere survival. We just want to make sure that he has the highest quality of life possible. The research clearly shows the benefits of addressing developmental issues early.

We might be able to get a referral for a couple OT evaluations from his pediatrician. The insurance companies are not particularly good about providing for developmental therapies. The other possibility is to wait until April when Henry has his visit with the neurologist. A referral from her would go a long way, I suspect. I asked Cuyler about us paying out of pocket. The cost right now is $180. But she said that they are going to meet this week to discuss their prices and see if it is possible for them to stay open and lower their prices for families who are paying out of pocket. $180/visit would certainly hurt us a bit financially, especially with Jeff's salary already being reduced by 10% and my salary being reduced 5% (via mandatory furlough days). But we obviously will do whatever Henry needs.

The state cuts are going to be felt in the foster care system. Even "normal" foster kids often need therapy. In addition, CPS isn't going to be investigating as many child abuse and neglect cases. Plus, the funds for foster child care (e.g., money for diapers, clothes, and personal items) is being severely cut. Diaper fund is being cut by 50%. Personal items allowance is being eradicated completely. Clothing allowance is being reduced too, but I can't remember by how much. It wasn't like great sums of money were given as it was. So either kids will go without, or foster parents will carry the cost burden (in addition to their time and effort, which as I explained before, is NOT compensated with funds). That's a lot to ask of people who are taking care of kids not their own legally, kids who often have problems, kid who often go back to their biological families. It is in essence asking average citizens to act as state sub-contractors without compensation.

What does that mean for Jeff and me becoming foster parents? Well, it hasn't changed our desire to become foster parents. We recognize how fortunate we have been with Henry. We were helped immensely by our son's EIP. I strongly believe that it was Cuyler's feeding instructions during that first session with her that prevented Henry from becoming a FTT case. Her feeding tips also averted him having "typical" preemie oral aversions. She was also the one who diagnosed his torticollis at 2.5 months adjusted (which caused his motor skills to be rated at a 1 month level during the evaluation) and gave us exercises, which helped the torticollis resolve within a month. Consequently, we feel compelled to "pay it forward" as they say. I've already been trying to "pay it forward" by being active in a preemie parent forum. I'm pretty good at asking questions and helping new preemie parents generate questions about their children's care and whom to ask. Fostering is also a way to "pay it forward." We would buy any foster child the same number of clothes and same quality as we buy Henry. We certainly won't be changing diapers 50% less to any child we are fostering. But I do wonder how other foster parents are going to do it. My impression is that our classmates aren't exactly rolling in the dough. I haven't noticed anyone wear fancy jewelry, $1000 outfits, or Rolexes. The situation is going to be really bad for the foster system in general if some of these lower-middle range income families can't get some assistance for basic needs.

Henry had an active day with Grandma and Grandpa. They reported that he only slept 10 minutes in the morning, during the drive to Carolyn's old house. He had Wendy's for lunch. But he refused hamburger and bun. He wanted the fries. Unfortunately, he ended up throwing them up. While Grammy ran to the kitchen to get towels to clean him up, he started eating the fries that he hadn't eaten yet. He also had some issues on his other end. In short, he is still sick.

When he came home, I was returning from the walk with the dogs. I was walking with Hal, Luke, and Annie. Henry ran to give me a hug and Annie managed to get in-between us just in time. So Henry and I made an Annie sandwich. She also gave him kisses to his delight. He had some pancake and then a bath. Speaking of baths, I forgot to mention that the other night, he showed us that he knows the letter "O." I had the alphabet written out in bathtub crayon along the side of the tub. He looked at it. Pointed to the letter "O" and said "O" (completely unprompted). Why "O"? I have no idea. I would have thought he would have started with A-B-C.

We watched a little bit of Thomas the Tank Engine clips. Fascinating show in some ways. "Usefulness" is one of the values touted in the series, which obviously reveals that it isn't American made.

Henry is asleep in bed now. Our plan for tomorrow is going to the zoo. Henry is having trouble eating, but he is still active and alert. The weather today was lovely. Maybe the fresh air will do him some good. Then, we'll head over to Grandma and Grandpa's house and then go to Picture Rocks. Tomorrow is Meagan's Day. My sister Meagan would have been 27 years old tomorrow had she lived.