The compression garment portion of this post is strictly venting. When I met baby 4 in March, there was a big debate between the Drs on his medical team as to whether he needed recontructive surgery since some of his scars (they were wounds then) stretch over joints. Their focus was on making sure 4 would have full range of motion now and as he gets older. The Dr that won out said to have 4 doing physical therapy daily to increase that range of motion instead of surgery citing that surgery could always be done if the less invasive way didn't produce the desired effect. We went through all the physical therapy and his range of motion is good, but his scarring is getting thicker as it heals. The medical team had mentioned compression garments and the physical therapist really pushed to have these for 4 ASAP. I started advocating with the medical team who said to wait until all the open areas had healed before pursuing the compression garments. It was late April before 4 was completely bandage-free and May 10th before I had a prescription for these things. When I went to the vendor who makes them, he tells me that it takes 6-8 weeks to get Medicaid preapproval. Couldn't we have done that while waiting for the wounds to heal? 9 weeks later, I hadn't heard from the vendor. Fast forward several calls, a surprise visit to the vendor, getting 2 Drs and the caseworker We have just now gotten Medicaid pre-approval to get FITTED for these garments. AHHH!!!! We're headed over to the vendor tomorrow. 4 will have to wear stockings from waist to toes and one glove from fingers to elbow 23hrs/day for 1 year. Hopefully the increased scarring from the last 3 months will not require surgery. My wish for Baby 4 is no more scars and no more surgery, but plenty more years of running, jumping, and playing ball.
While Baby 4's medical issues are largely out of my control (although I still try), I am in a position of influence when it comes to his academic progress. 4 has finished his preschool early intervention testing and we are now waiting for the school district to have a committee on special education meeting to determine what services they will provide for him. The general rule is that a 25% delay in one area or a 15% delay in three areas would qualify a child for special education services. Right now, Baby 4 is testing 11 months behind his age in 2 areas and has the speech therapist who did his testing pushing for services because he tested at age level for speech, but she was able to that his practical use of language is lacking. He has the skills, but his behavior doesn't support his ability. Everyone of the evaluators assessed that 4 is quite bright and his delays seem to be a mixture of trauma and lack of initial exposure. I agree whole heartedly. So what are we going to do about it? I am reviewing ABC's, colors, shapes, and animal sounds every day. I am counting out loud everything we see all day long. I am documenting everything he does looking for a new pattern or reason for his behavior. I am reading as many books as he'll sit through. What I can't do is make him speak clearly (or even in English) to other people or approach a child his age with any kind of acceptable social skill. It's not for lack of trying, it's for lack of people around him who don't coddle the hurt baby with a trach (talking to you Grandma and Papa). He needs to be with kids who function typically and teachers who meet him at 3yr old level. He needs an integrated preschool program. We have several very good classrooms just like this just minutes from my house. None of them want Baby 4 because of his trach. The school district doesn't want to pay for a private duty nurse. My wish for 4 is to catch up this year academically, get his trach out, and start Kindergarten typically functioning and completely blended in with his peers.
More than my wishes for services and apparatus's, are wishes for healing and happiness. I wish that baby 4 has many days where he wakes up and goes about his day without thinking about being in foster care or being injured. I want him to just be Baby 4 and have fun like every other 4 year old boy. I needed a win for him this week. I needed to get the pressure garments, or get word about a co-op preschool who welcomes kids with medical needs. Instead I got something much better. I took 4 to a splash park this week and watched my son fill and empty a water bottle for 40min. Just running around, making mud like every other 4yr old boy. No foster care, no injuries- just water play and mud pies. That's my wish for Baby 4.
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