Thursday, May 21, 2009

Second Therapy Visit

Today was Kaiden's second visit to therapy. He had 30 mins with OT followed by 30 mins with PT. Luckily he fell asleep early today while playing so I didn't have to wake him up to go. He had been up for 2 hours already and we went for a walk so I was a bit worried that he wouldn't do so well after all of that fresh air. But boy was I surprised. Today was a big milestone for us. I felt like a first time Mom all over again. During his OT visit he wanted to suck his finger often so the OT said, why don't' we try putting food on it and see how it goes. It was going well so she said, let's push it and see how it goes. She pulled his finger out and put food into his mouth on a spoon on the inside of his cheek between his cheek and gums. And he swallowed! She kept this up for about a quarter of a jar of bananas and then let me do another quarter of a jar. At first he would suck his finger after his bite, I think to help swallow the food. But eventually he caught on and stopped doing that. He even opened up his mouth when we would bring the spoon within his eyesight! I brought the jar home and finished it up with him. Then tonight, just to make sure it wasn't a fluke, I tried to feed him a jar of peas. I always started the girls with vegetables since they aren't sweet so they wouldn't refuse them later. We tried all of the first foods in his bottles without any troubles so I thought he'd take the peas on a spoon. Nope. He completely refused them. Then I tried sweet potatoes and he ate the whole jar again! I think we are on to something now. Here's a short video that K2 shot of him eating.

After OT he had PT. He wasn't interested in anything she wanted to do with him. She had to set him down twice because he got so mad. We know that he has to be pushed but when he starts screaming, there is no point in trying to push him any further. I am hoping that in the Fall we can move his times to the morning when he is more engaging.

Friday, May 15, 2009

ENT Visit

This afternoon Kaiden has his appointment with the Pediatric ENT, Dr. Madgy at Chilren's Hospital downtown. I had planned to go to his office in Clinton Township by myself but the office needed to re-scheduled and I was able to get into the downtown office quicker. Since it was in the afternoon on a Friday when Pete normally works from home, I asked him to come with me. I've never been to this hospital so I felt more comfortable not going by myself.

Our appointment was for 1:10. We didn't get seen until 2:15 pm. Then we were first seen by a resident. I'm usually understanding when it comes to seeing residents since I worked at St. John's and know that they have to learn somehow. However, after waiting for well over 1 hour to see the physician, I was less than patient. I was heating up thinking that we weren't going to see Madgy when he did finally come in. Apparently the resident does the in-take interview and then Madgy takes over.

As Kaiden's pediatrician suspected, Madgy 'wasn't impressed' with his tongue tie. That was what he said. Madgy said that it was minor and that it could or could not help him if they clipped it. Then we were off to see the audiologist to repeat the two hearing tests that the audiologist at Early On had already done. Kaiden 'failed' this hearing test. He is unresponsive and doesn't recognize his name so we don't think his is deaf, but I do think he may have some hearing loss. Pete thinks his hearing is fine. The audiologist concluded as did the other one that Kaiden would need a Auditory Brainstem Response (ABR) test done and he'd need to be sedated for it since he needed to be quiet. An ABR test is used for hearing and brain (neurological) functioning. The ABR test involves attaching electrodes to the head to record electrical activity from the auditory nerve (the hearing nerve) and other parts of the brain. I asked if this could be done at St. John's when he has his MRI sine he has to be sedated for that. The audiologist called over to St. John's to inquire but she said that the test that they do isn't as extensive as the one that they do at Children's Hospital. They are also very booked up for this test and the first opening isn't until sometime in July. I'm currently on the waiting list for when that schedule opens up to be put on.

Madgy said we'll address the tongue tie after we come back to see him after the ABR. If it was one of the girls, I'd let it wait. But if there is any chance that this could in anyway impact Kaiden in the future, I just want it taken care of now. I don't want it to be an issue or non-issue later down the road.

Thursday, May 14, 2009

MISD Early On Meeting

This after was our first team meeting with Kaiden's parent coordinator, occupational therapist, and physical therapist. In this meeting, we laid out his main goal for each area of development, and then 3 sub-goals for those. The meeting lasted for about an hour. I was very pleased with the goals outlined. All of the ladies that I met seemed to really care about Kaiden's development.

He will start therapy next week, twice per week, for one hour each day. Once they receive the reports from his other doctors (neuro, optho, & ENT) then he may qualify for more services. For right now though, I think this is a good place to start.

Therapy is suppose to occur in his 'natural environment', home, but they feel that he'll progress better at the center with the equipment that they have there. This means they will pay me mileage reimbursement. Seems kind of silly to me, that they would pay my mileage to get there for free services, but that's the government for you.


This morning Kaiden has his appointment with the neurologist. We saw Dr. Allarakiah with St. John's. He is well known in this area so we felt very comfortable with seeing him. I was planning to go alone but Pete had to work late tonight so he came with me. I'm glad he did. I thought this was going to be an uneventful appointment - just routine. There was a lot of information to process. Honestly, although we didn't say it to each other, we weren't expecting much out of this appointment. We both thought Kaiden was delayed from neglect in the orphanage and with time he'd just catch up. Well, we were wrong. But we don't have any clear answers yet. More tests and appointments are needed.

Dr. Allarakiah was very surprised that Kaiden is so delayed. He too confirmed that Kaiden is at around a 2 - 4 month old developmentally. Closer to 2 months but he said 4 months because he can roll over both ways. He said about halfway through the appointment that if his delays were due solely to being in an orphanage, that at least his gross motor skills would be further along. He'd expect him to be at least sitting up and pulling himself up.

Without any history, pregnancy, birth, or his own family medical history, Dr. Allarakhia said that we have to begin by ruling out a number of possibilities. In order to do this, he ordered a Brain MRI with sedation (scheduled for June 4) , EEG (still trying to schedule), and urinalysis (we did this riht away today). He referred us to Dr. Bawles, Genetics, for a few different blood tests that only she would have access to. She is also a professor of pediatrics. I couldn't get an appointment to see her until the end of July. He wants a complete metabolic work-up and a test to rule out Rett's Syndrome. We don' think he has Rett's but we don't know what his state of health was like before we got him, so we'll do the test just to be sure. Boys with Rett's rarely survive, but he said they are seeing more and more boys with it. He said Kaiden could have any number of other syndroms, but not likely because his facial features appear to be normal. He said Kaiden could also have something along the autism spectrum, but he wasn't so sure about that either.

So all in all, a lot of information to process, more than I expected. And more tests for poor Kaiden.

Wednesday, May 6, 2009

Quiet Week

We have a slow week this week. Kaiden does not have any appointments. He was supposed to have the ENT but the office had to change that to next week. Next week, is going to be a very busy week to make up for it. We are planning to just enjoy quieter times around here to prepare.

Kaiden is making slow daily progress. He continues to hold his head up more and more each day for longer periods of time. He now rolls off of his gymni mat. He is rolling all over the place. He appears to have found himself in the mirror that hangs down from the gymni. He is fascinated with that. Still no attempts to play with anything with his hands. He also is starting to sit up. I use that term loosely. He sits up but yet leans forward at the same time. He doesn't use his hands to prop himself up but keeps them at his side. Others that don't seem him as regularly as we do have even made comments on the progress that he has made. This may seem like nothing to many, but for us, these are all important things that will lead to more movements and growth in his development.