Sunday, October 11, 2009


Well...we are officially a no-nap household. I'm not sure I expected it to happen this fast. Then again, AJ is almost 3 1/2. While it has made our days seem very, very long, it is a relief to put AJ to be at 7pm and know that he is going to sleep. No more busy-body activity in our bedroom before we go to sleep. We've had a few days here and there where he's fallen asleep in the early afternoon. On those days, we watch the length of time he naps very closely.

AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.

Here's a run down on the latest:

PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.

His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....

OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.

AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.

GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.

Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.

On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.

Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.

He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.

AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.

He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.

CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.

AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!

On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!

Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!

CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.

School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.

AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.

House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.

Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.

So, tonight, I'm feeling a bit of relief. It's a nice change of pace.

1 comment:

  1. You are so thorough. Love that! I'm a "just the facts, Jack" kind of Mom too. No time for anything else.


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