A Whole Lotta Lotta
PT/OT: Two weeks ago we began using constraint therapy with AJ. He basically wears an aircast on his right arm (his good arm) to immobilize it so that he's forced to use his left hand. It works really well and I have to say he tolerates it much better than expected. The clinic needs the device back, so we are looking into purchasing one of our own.
We also borrowed some walking/balancing wedges. It's all about balance.
PT was thrilled. He has increased his "proper" use of a paintbrush...its no longer going straight to the mouth when he gets it in his hands. His fine motor skills are definitely improving, including the isolated use of his pointer finger. He can push the button on this book he has which has a car horn on the front. At first, he would isolate his middle finger, but after a few times of redirection to the correct finger, he's got it.
We made the executive decision that we need to give AJ sensory experiences with non-edible items. He's at the age now where he shouldn't be playing with his food, and he doesn't quite understand that you should eat a cup of pudding at snack time when yesterday he painted with it. Make sense? He has a habit of trying to eat paint too, so we have decided its time to establish a distinct difference between edible and non-edibles for AJ. ie = Instead of pudding, well stick with shaving cream or even lotion.
He's also been walking on the treadmill during therapy, which cracks me up. He loves it. Each time we go he walks a little longer and they increase his speed a bit. We are working up towards running.
We are beginning to set funds aside for AJ to participate in the intensive therapy sessions offered by Partners for Progress in the summer/fall of 2010. He has already been treated by one of the therapists who founded this organization. She's well-known and it gives me chills to think she'll be working with him again (she's treated him twice already). The sessions are about $3,000 and not covered by insurance.
GI: We survived his most recent GI appointment. The good news is that he gained weight, 6 ounces in just two months. He is now 22 lbs 7oz with a length of 2'8" (height did not change). He's gaining an average of 20g/day and taking in an estimated 1400-1500 calories per day. He is 95% of his ideal weight/height, which is astounding as last time we were there he was 86% and still considered malnutritioned (92% and above is ok). The GREAT news is that his Gastroenterologist was THRILLED. He asked what has changed that he is doing so well, I didn't have a clue. We are to keep doing what we're doing and don't have to go back for FOUR months.
Development: In early December AJ had a follow-up at the Child Development Center at CHW. They have moved to a new off-campus location, which is really very nice. AJ's development specialist has not seen him since April 2008. Our visit began with me explaining basically what AJ can do and what he's not doing. Both I and AJ's teacher filled out similar evaluations of AJ, which were scored during our appointment. We both answered very similarly. AJ tested at a normal level for socio-emotional for a 3-year-old. I found this hard to believe, but there it was, in black and white in front of my face. A cute little chart. He was above the norm for the "Withdrawn" category, on both of our evaluations. This is no surprise. He told us to keep an eye on it.
We then moved onto the physical exam, which was rather interesting. He did the reflex test and I was able to see the difference in how AJ's legs/feet reacted. One foot curled down, one foot curled up. And then he said IT. "I think something else is going on here, but I don't know what. You son is moving on a slow train. He's not making gains as fast as he should. Hemiplegia is not common with prematurity. Kids with hemiplegia usually do well mentally. He might of had something in the womb, a stroke, something vascular. Let me look at his MRI results (from 2008). Ah yes, the just the standard periventricular white matter statement. I want to do chromosomal testing. Let's see if there is something else causing his delay."
I think I was literally numb as these words came spewing out of his mouth. I quickly reminded him of AJ's adoption, stating the testing can only go as far as AJ. It's not like his birth parents are around the corner and we can just call and ask them to come in for testing. When I brought up the fact AJ had 13 months of nothing in Guatemala and the fact that his hearing loss was identified late, he literally, blew it off. And then said, I don't mean to be stereotypical, but deaf kids are typically smarter than you think.
At that point, I should have rubbed that grain of salt in my hand and left. He requested we see AJ's psychologist again. We saw him as part of AJ's cochlear implant evaluation process. Since AJ will be 1-year post-implant in April, I asked if we could see him then, and kill two birds with one stone. He agreed. The chromo tests are ridiculously expensive. He did submit to insurance for them to be done last year, but it was denied. Hopefully, this time it will be approved. They cost thousands of dollars, so it's not like we'll be paying out of pocket for them. We left, with me feeling sort of dazed and confused. It was a bit of a blurry ride home if you know what I mean.
I put a call in to AJ's teacher, as I knew she was anxious to hear what the development specialist had said. We had a long conversation that calmed my heart. Jer and I talked about it. A few days later I had another conversation with AJ's PT. And the jist is this. Specialists don't know everything. We know AJ's delay has continued. It's not like we didn't notice that he plateaued quite a bit after his first year home. We're not oblivious here, buddy. This guy has seen AJ three times since we brought him home. He's doing his job, but honestly, it sounded like he was having a conversation in his head and just happened to verbalize it. AJ doesn't fit into a box or mold. If there is a disorder or syndrome, it really won't change anything, in our eyes at least. That doesn't mean his words didn't sting like hell, because trust me, they did. File that one into moments in my life when I've been sucker-punched. We're taking what he said with a grain of salt, ok more like a mound of salt, and moving forward.
I have yet to hear back if insurance approved the chromo testing. This is one of those situations where I wish we were AJ's biological parents. We'd have the testing done too, in a heartbeat, if we could. It angers me that I can't give AJ the answers he deserves.
CI: AJ has decreased the "ripping-off" of the implant, which is nothing short of exciting. We switched to the rechargeable batteries a few weeks ago and are LOVING them. His replacement coil came in, so I'm relieved to have a back-up once again. I'm also thrilled to report that I have found wig/toupee tape at Sally's Beauty Supply. It really sucks when you run out of that stuff and you run to 4 different stores to find it. We've also noticed a different "whine" come from AJ and him knocking his ear when his CI battery goes dead. Interesting, hey? I think he's trying to tell us it's not working anymore. He definitely knows the difference between it being "off" his head completely, and when its on, and not working. Hm...
School/Communication/Speech: AJ is continuing to do well in school. I can't believe the first semester is already over. His teacher came for our monthly home visit last week. AJ is making gains in every area, EXCEPT communication. He is making gains auditorily, like crazy. But not in communication. This is no mystery to any of us. But we are really focusing on how to give him ways to increase his communication skills. His teacher has found a specific curriculum she would like to try with AJ. We are all for it. It begins with a video assessment, so I am super excited to see what this is all about. We also determined that AJ is a highly-structured learner. There are natural, structured, and highly-structured learners. Again, this is not news, it just helps to establish this fact and move forward.
It is very scary that AJ is not communicating well. He's 8 months-post-activation. He should be communicating better than he is. This is FACT. I keep thinking about the 1-year mark of post-activation and how its supposed to be "magic".
I'm not feeling anywhere close to magic and I break down in tears while reading other CI kiddos blogs. Its only natural to compare your kids to other kids. I stopped comparing AJ to normal kiddos, but though there was solace with CI parents and kiddos.
The fact remains, AJ is still different.
His history, his past, his other disabilities sort of exclude him from this world too. At first I was frustrated with our CI team in saying AJ's not making enough progress for a 2nd CI, but perhaps there is some truth in the fact that he's not making the progress we thought he would. I'm not saying I agree totally, I'm just saying that I need to take off my Mom glasses for a moment and put on the reality glasses. I do not agree that it is a reason to hold AJ back from getting another CI. I refuse to wallow in it, but I am human and need moments in life to grieve, process, and move forward. I can't skip any of those steps any longer.
I'm considering having AJ in speech therapy, maybe even AV therapy outside of school. We need to give him every opportunity we can. In the meantime, we are doing our best to remember to give him choices throughout his day to help encourage communication.
I am proud to report that AJ had a GOLD STAR day at school the week before last. It was amazing to hear his teacher come out and say that. Of course, it was a Thursday. His last day of school for the week. He's paying more attention to his peers, his eye contact continues to improve, and he understood the concept of pulling his peer in a laundry basket AKA Santa's sleigh the other day. What thrills me the most, is that AJ's progress has now given him the opportunity to spend more time with his peers. This thrills us to no end.
Feeding: We received the report from AJ's swallow study in November, but have yet to 1) hear back from insurance for approval of feeding therapy sessions 2) have feeding therapy sessions. I'm a bit frustrated. Also, it looks like he'll be working with someone new, not his former SLP we had for almost two years. Fantastic.
AJ is no longer drinking out of a sippy cup. He drinks from an open cup and can sip out of two different sized straws. He's also able to hold a juice box and sip without squeezing it.
Keeping it All Straight: I've decided to get a gigundo whiteboard for our hallway.
I've been writing AJ's goals/things we are working on in each "category" (much like a write these mass updates) on a small 18x24 white erase board. It's just not cutting it anymore. My mind is filled with ideas, strategies, and so much more when it related to AJ's needs. I need a place to put it all...in one place and out of my head. I did consider using that fun chalkboard paint on the wall, but then decided against it seeing as 1) I just painted the hallway this summer, complete with a textured primer that would not make for a smooth surface to write in chalk on, and 2) it would be really messy. I'm sure when we go to sell the house, the new buyers will be thrilled with a whiteboard in the hallway. Too bad, so sad. They won't have to look at it for long, as it will be going with us.
I'm also in the process of reorganizing AJ's binders. I currently have a binder for each of the following: AJ Medica, Center for the Deaf, Medicaid/T19, United Cerebral Palsy, CI Training/Listening, Speech, Birth to 3 (now an archive), and IEP/School, and Preschool. They are each a different color, with color-coordinating labels. That was the best idea I think I've ever had. I know exactly where things are this way.
Now that Santa has made his annual visit, multiple times, the need for a therapy/playroom for AJ has never been more obvious. I've decided that I don't care what type of house we find, as long as it has a large family room, living room, or finished basement that can be used as AJ's space. I never imagined with one child that we would outgrow this house. His needs have outgrown this house. If our city had a program like the one he currently attends, we'd finish part of our basement and it wouldn't be an issue. But they don't.
I don't care if this room in our new house has dark wood paneling and orange shag carpet. We've already decided we are looking for something that needs some TLC. Molding and doors are paintable, windows are replaceable, paint color and wallpaper is not an issue.
We're still working on getting things done around here. Keep staring at that to-do list. The recent events with AJ and the holidays sort of put another kink in our plans. But I guess that's what happens, right? Life is what happens when your busy making other plans...