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.
Friday, May 15, 2009
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.
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.
Neurology
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.
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.
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.
Wednesday, April 29, 2009
Michigan Early On
Today was Kaiden's appointment with Michigan's Early On program. Early On assists families with infants and toddlers, from birth until they turn 36 months or 3 years of age, who may be experiencing delays in their development or if they have a diagnosed disability. When they turn 3 (or actually, the Fall that they turn 3) they are then part of the local school system. Children are then eligible for various preschool programs that are designed to better assist the developmentally delayed children. One of the most appealing things about NYC was their public school system. Now that is a school district that has their act together to care for the more advanced children. Those close to me know that I've always been frustrated with our state public school system because they are not prepared to deal with gifted children, until usually middle school, but more commonly in high school. Hence, the big reason why I homeschool the girls. I'd always say in the past that if I'd had a slow child, that I lived in the perfect state for that. Well, now I'm happy to live where we do : ) But, I digress.
Our pediatrician evaluated Kaiden to be at around a 4 month old. The specialists today said he is more like between and 2 & 4 month old. Ok, not that big of a difference in my mind but to them, it was a difference. He qualifies for their services. No kidding : ) He'll get started now even though they run on a school year which will be over in just about 1.5 months. But, at least we'll have some specific exercises to begin with him to do over the summer. We can also use our health insurance to get private OT & PT during this time. But we won't decide on that until we get to that time. Normally, they like to have children wait until they have been home for a few months to see how much they can naturally catch up but since he's so far behind, we'll go ahead and go started now.
I met with 3 different people during our 2 hour visit with them. I was not looking forward to this appointment because of my anti-public school system attitude, for my children, but I tried to go in open minded. To say the least, I was very pleased. All 3 women were warm, welcoming, and really seemed to have a love for children. We (Kaiden & I; Pete won't possibly be able to miss work for all of these upcoming appointments so he'll just come to the most nerve wracking ones) met with a Occupational Therapist (OT), Audiologist, and a Coordinator.
I'm just a little bit familiar with this program because when I was doing in-home daycare before K3 was born, I had a little girl that was enrolled in it. Now that I think back on it, she was more delayed than even I realized at that time. But after going through with these services, she started making remarkable progress.
The Coordinator is basically our go between us and all of the 'team' that will work with Kaiden. She'll be the one that sets up his first meeting in 2 weeks with the team and schedules all follow up evaluations that will be needed. He'll go twice per week for a 1 hour visit with the OT & PT. A speech therapist will see him on an as needed basis since his motor skills are more of the focus right now. He'll also be evaluated by a psychologist in the Fall as part of his 'transition' year. I can't imagine that that would take that long : )
He didn't have an appointment with the audiologist but she was free so she saw him. No surprises there. He wasn't responsive. She couldn't rule out any hearing loss so he needs to see an ENT, preferable the one that works out of Children's Hospital downtown because they have an Audiologist on staff that can do this hearing test that he needs done at the same time as our visit. Check. Already have an appointment with him in 2.5 weeks. Good news is that his ear drums are fine so his ear infection must be gone.
The OT was wonderful. She was patient and gentle with Kaiden. She got us started on "brush therapy and joint compression" with him at home to be done about 5 - 6 times a day, basically at every diaper change so we remember to do it. It'll only take about 5 minutes to do. This will help him with sensory integration and get his joints used to pressure for crawling & walking. Also some different touches to do around his face and mouth to get him working towards foods. And, try and rub different textures on his hands like silk, and this brush, and any other types of materials that we may have to try to get him to engage his hands for toy play. She was happy to hear that we already have our appointment with the neurologist and it's the one that they recommend as well.
He'll need to get some more medical testing done (ENT, neuro, vision, etc.) to rule all any under-lying medical conditions for the delays. These things should all be taken care of over the summer so we'll be in a good position to make progress come the Fall.
Kaiden turns 2 in the Fall, in October, which means next Fall of 2010, he'll be eligible to start pre-school. They call next year his transition year, preparing him for school. I can't imagine him being ready for that. He doesn't have to attend, but, if we want to use these services, then he has to in order to get them done through the school district. Right now though, I can't even think that far! I'm glad that they can.
Wednesday, April 22, 2009
Pediatric Opthamologist
Today was our first appointment with Dr. O'Malley. He is who our pediatrician referred us to. I was happy about that since I had 3 others refer us to him as well. We brought Kaiden's medical file (all two half pages) from China with us but he didn't give much credit to them. I was really impressed with him. He was very personable and handled Kaiden very well. He's been practicing for 30 years but doesn't act like he could be that old. He said right off that bat that it wasn't a retinoblastoma or it'd be coming out of his ear by now. That's a relief! But I still wonder why he sat on the waiting child list for so long. His medical condition was never updated on the waiting child list after his second procedure where they ruled out the retinoblastoma, almost certainly. I think it's because he was waiting for us to realize that he was waiting for us : )
Kaiden did well for the first part of the exam. Then it was time to dialate his eyes and sit and wait for 20 minutes. That went quickly because there were some very poorly behaved boys in the waiting room that were entertaining to watch : ) Kaiden did not like this second part of the exam. He cried through the entire thing but Dr. O'Malley worked very quickly with him. He said that in his 30 years of practicing and having practiced on 5 different continents (including China multiple times) that he has never seen anything like this in a child so young. We are still baffled that they even found this in China when he was so young. He just looks cross eyed to us. Dr. O'Malley will have to do some research and finds Kaiden's case very interesting. But the important thing is that it is not cancer, it is treatable, and there is no rush to do anything about it. The next step is to see a neurologist which we already had scheduled for in May because of his developmental delays. O'Malley said that at this point, we'll take a wait and see approach. Give him some time to develop and see how he progresses on his own. He doesn't want to push Kaiden through a bunch of tests right away until he's been seen by these other specialists. He did describe one test that he will want to do but that requires anesthesia, so again, it can wait. We'll see the neurologist (which happens to be who he'd recommend we see also) and then come back to him in 8 weeks. We didn't get an exact 'diagnosis', something to call this condition, but he described in great detail what was going on. There is some kind of mass sitting in the back of his eye interfering with his vision.
Pete was with me for this appointment but we can see many, many more in our future. He won't be able to take time off of work for so many but he wanted to make it to this one. Besides, he gets to go to all of the immunization appointments alone : )
Next week is his OT assessment.
Kaiden did well for the first part of the exam. Then it was time to dialate his eyes and sit and wait for 20 minutes. That went quickly because there were some very poorly behaved boys in the waiting room that were entertaining to watch : ) Kaiden did not like this second part of the exam. He cried through the entire thing but Dr. O'Malley worked very quickly with him. He said that in his 30 years of practicing and having practiced on 5 different continents (including China multiple times) that he has never seen anything like this in a child so young. We are still baffled that they even found this in China when he was so young. He just looks cross eyed to us. Dr. O'Malley will have to do some research and finds Kaiden's case very interesting. But the important thing is that it is not cancer, it is treatable, and there is no rush to do anything about it. The next step is to see a neurologist which we already had scheduled for in May because of his developmental delays. O'Malley said that at this point, we'll take a wait and see approach. Give him some time to develop and see how he progresses on his own. He doesn't want to push Kaiden through a bunch of tests right away until he's been seen by these other specialists. He did describe one test that he will want to do but that requires anesthesia, so again, it can wait. We'll see the neurologist (which happens to be who he'd recommend we see also) and then come back to him in 8 weeks. We didn't get an exact 'diagnosis', something to call this condition, but he described in great detail what was going on. There is some kind of mass sitting in the back of his eye interfering with his vision.
Pete was with me for this appointment but we can see many, many more in our future. He won't be able to take time off of work for so many but he wanted to make it to this one. Besides, he gets to go to all of the immunization appointments alone : )
Next week is his OT assessment.
Friday, April 10, 2009
False Alarm
This afternoon, just as I was about to head out with K1 to Whole Foods to try to do some grocery shopping, I got a call from our pediatrician. It appears that his sodium level was too low and another marker for his metabolism was low. He could possibly have metabolic acidosis. Of course I had not ever heard of this before but it didn't sound good. She said that it might not be anything but when could I get him back in to have more blood drawn. Oh, and there wasn't enough blood to do his full hepatitis screening so they'd need more blood for that. His left arm was not a good arm for the draw so they had used his right arm and it was bruised up from them attempting to take 7 tubes. I joking said to Pete last night that I thought they were going to run out of blood, and, well, they did just that! This is Good Friday mind you, and I have just gotten off the phone with Pete to tell him not to come home early because I was leaving for shopping and the girls were down for naps so he might as well stay and work later. He is at best 45 minutes away from the hospital. So, I said to her, I can take him tomorrow, assuming that the labs will be open. She replies with, well, it would be better if he went today, right now actually. She'd have the office nurse call the lab to see how late they would be open and her call me back. I then called Pete and told him that he did in fact need to leave right now and meet me at the hospital. There was no way I was going to be able to make Kaiden go through that again, just a day later. It's now 1:45 pm and the lab closes at 3 pm. At least we are only 15 minutes away from it. At least Opa & Oma had already agreed to watch the other girls so I could go grocery shopping.
I put the girls down for naps and left with K1 & Kaiden to meet Pete at the hospital. I had to stop off at the pediatrician's office to pick the blood draw orders but I should still beat Pete to the hospital by at least 30 minutes. I hate parking there because it is just a large parking structure and a large hospital so I got valet parking. I called Pete to see where he was so that I could gage how soon I could sign in for the blood draw. He walked in just 5 minutes behind us. I don't even want to know how fast he must have been driving!
K1 & I waited in the lobby while Pete took Kaiden in. Because his right arm was so bruised from the day before, they had to use the left arm that doesn't have a good vein in it. Poor baby. It went quickly so Pete took Kaiden home and Kaeterina and I still treked half way around the world to go to Whole Foods. Ok, so maybe it is not that far, but it sure feels like it. It's a 40 minute drive if there isn't any traffic! But, I knew it was the only place I'd be able to find a gluten free ham to have for Easter dinner. The sacrifices I make for my family : )
Our pediatrician just called me. It was a false alarm. The tests came back normal. We still have to wait for the hepatitis screening but at least what she was concerned about is fine. I'm not worried about his hepatitis screening either. That test from China is generally accurate and all of his came back negative for those.
I put the girls down for naps and left with K1 & Kaiden to meet Pete at the hospital. I had to stop off at the pediatrician's office to pick the blood draw orders but I should still beat Pete to the hospital by at least 30 minutes. I hate parking there because it is just a large parking structure and a large hospital so I got valet parking. I called Pete to see where he was so that I could gage how soon I could sign in for the blood draw. He walked in just 5 minutes behind us. I don't even want to know how fast he must have been driving!
K1 & I waited in the lobby while Pete took Kaiden in. Because his right arm was so bruised from the day before, they had to use the left arm that doesn't have a good vein in it. Poor baby. It went quickly so Pete took Kaiden home and Kaeterina and I still treked half way around the world to go to Whole Foods. Ok, so maybe it is not that far, but it sure feels like it. It's a 40 minute drive if there isn't any traffic! But, I knew it was the only place I'd be able to find a gluten free ham to have for Easter dinner. The sacrifices I make for my family : )
Our pediatrician just called me. It was a false alarm. The tests came back normal. We still have to wait for the hepatitis screening but at least what she was concerned about is fine. I'm not worried about his hepatitis screening either. That test from China is generally accurate and all of his came back negative for those.
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