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.

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.

Thursday, April 9, 2009

Lab Visit

Kaiden was able to give us a stool sample this morning so I could take that into the lab for testing. He also needed a complete blood work-up and a chest x-ray. I won't normally take the kids for any appointments requiring needles but Pete also couldn't go into work even later again. I won't be doing that again. The poor baby had to give 6 vials of blood. I can barely give blood myself let alone hold down my screaming baby while they poke him. I went all the way to St. John in Detroit just because I like those phlebotomists the best. They have a lot of experience poking babies. He was good for his chest x-rays too until we had to hold his head up. Then more screaming but that only lasted for a few minutes.

I had to take his outfit off for his x-ray because it had metal buttons on it. I'm glad I did because one of his band-aids from his shots fell off to relieve 3 blisters under them! I thought he was having a reaction to the immunization or possibly the antibiotic. After leaving the hospital, I called his pediatrician to see if I could bring him in for her to look at it. She was very surprised when she saw him. She knew it couldn't be a latex band-aid because they are a latex free office. She determined that he was allergic to the adhesive in the band-aid. Now we can't use band-aids! We'll have to remember to tell them that whenever he gets shots. Now what am I going to do without those miracle boo-boo fixers???

Tomorrow he has to go back to the office to have his TB test read. I sure am thankful that we are still living with the in-laws. It means we are only 1 hour away from our pediatrician and that I have a babysitter for the other girls. It sure makes things convenient right now.

On a positive note, Kaiden did wake up at 2 am crying. I fed him a bottle in the dark and he fell back asleep until 6 am. 6 am is a much more do-able wake-up time!

Wednesday, April 8, 2009

First Doctor's Visit

Today Kaiden has his first visit with our pediatrician. Our adoption agency recommends that we visit a physician that has extensive experience with international adoption. Both of the doctors recommended are each 1 hour away. We are opting to use the girls' current pediatrician and see how things go. We have been very happy with this practice for almost 9 years now and one of the doctors is well known throughout the country.

The visit went relatively smooth. We were there for over an hour. He was a level 5 visit. None of the girls' visits have ever been over a level 3! Somethings we expected and somethings were a surprise to us. One surprise but easily dealt with was that he had an ear infection in his left ear. That is also the side of his head that is flat from him lying on it. We got a prescription for the 'pink stuff' to take care of that.

He'll need a chest x-ray to look at his lungs and rib cage. He has a cough (we are using a cool mist humidifier) and green runny nose. If it's a sinus infection, the penicillin will take care of that too. His rib cage is also malformed. It kind of rolls up at the bottom. I didn't notice that until we were on the plane ride home and he was laying on my lap on his side.

The one thing we knew of because it was his listed special need was that he'll need to see a pediatric opthamologist for his left eye. I received 3 separate recommendations for Dr. O'Malley and that is also who our pediatrician recommended as well.

Because of being in an orphanage, he is developmentally delayed. He is almost 18 months old and he's at about what a 4 month old can do. But in just the month that we have had him, he already is improving his neck control. He's still a weeble wobble but he's making slow progress. We are supposed to give him as much tummy time as he'll tolerate and keep turning his head so he'll stay off of the left side. This means he needs to see the pediatric neurologist. We can ask him about a helmet to fix the shape of his head but it might be too late. It might be fully formed already but we can ask.

The neurologist will order PT & OT (and eventually speech) therapy so we can set that up now. We actually have his appointment for that assessment set up before we see the neurologist so we can take the results with us. He should qualify for the MISD's Early On intervention program for these services. When I was doing in-home daycare, I had 2 girls that received these services. Both of their parents were happy with the programs. One thing for sure is that our state ranks very poorly in being prepared to deal with gifted children but they have wonderful services for special needs children.

Next is the ENT. He has a tongue tie which maybe part of why he refuses solid foods. We could wait to deal with this until later since he has so many other things going on but he needs a hearing screening. It's the same doctor for both so we'll address that right away too.

Since we don't know if his immunizations that he received in China were any good, we opted to just start from scratch. He received a TB test which was one poke in the arm. Then he received 3 shots in the legs. He needed one more but since we was already being poked and we only live 1 mile away, he'll go back in 2 weeks to get the other one. He'll go back to see the pediatrician in 2 months for his next shots and to follow up with all of his specialist visits.

I took the first available appointment for all of his physicians and they are still spread out over the next 2 - 6 weeks. Some of the doctors are extremely difficult to get in with. I'm taking that as a good sign that they will be excellent.

Long Night

Kaiden had a long night tonight. He started waking up around 2 - 3 am three days ago. I figure it's because of the jet lag. He didn't wake up during the night while we were in China. Only once that I know of and he rocked himself back to sleep. Now he's sleeping with us so I know each time he wakes up. He started crying when he wakes up during the night too. He didn't do that in China either. As part of the bonding process, we are supposed to hold him to fall asleep. Well, he doesn't like that either. It took Pete 45 minutes of holding him screaming and crying before he finally quit and went to sleep. At least he went back to sleep and didn't think it was time to get up and play. So now I sit here, wide awake, since we all went to bed at 7 pm last night. Except poor Pete. He was up until Kaiden woke up and fell back asleep.

Tuesday, April 7, 2009

Kaiden's New Chair

If you followed us on Facebook while we were in China, then you saw the ridiculous pictures of Kaiden in the infant bouncy seat. We needed something to lift him up off the ground but that didn't cause him to sit upright completely since he didn't (and still doesn't) have head control. He has head control muscles but he doesn't use them to hold his head up straight. He has made progress in this area though in just the 3 weeks that we've had him.

When we got home, I didn't want to spend the money on a bouncy seat since really, he's over the weight limit for it. But he can't hold his head up long enough for the exersaucer, he hates the swing, and I thought he needed more variety than the highchair. Then I remembered that when the girls were young, my parents had an infant to toddler rocker that held up to 40 pounds. Perfect! So here he is not looking quite so over-grown in this chair.

Monday, April 6, 2009

Still Jet-lagged

Well after being home for 3 days now, we are all still jet-lagged. Pete is the closest one to being back on a normal schedule. I thought for sure that on Saturday when we all woke up around 6:30 am that we were back to normal. Wishful thinking. I think today is going to be the worst day yet. All of us except for Pete went to bed yesterday around 7ish. Bad idea. Kaiden and I were up at 1 am followed by K2 at 2:30 and K1 & K3 at 4:30 am. I'm hoping to have all of us take a nap today and stay up late so we all sleep in tomorrow. Hopefully that will get us back on track. I'm told traveling back East is harder than traveling West but I'm praying that' wrong news for us.

We are all adjusting more each day. Kaiden now recognizes my voice. When I talk, he tends to turn his head towards me. He can hold his head up longer more and more each day. We won't really know the extend of his delays until we start with his doctor visits. He has his first one with our Pediatrician on Wednesday.

The more that I read about Reactive Atachment Disorder (RAD) the more that I see the long road that we have ahead of us. I started learning about it just before we left so I'd know a little about what types of activities we needed to do but there is a lot more. It's hard to not let people hold him but for now, that is what we have to do. He still doesn't like to be held but he's getting more used to the immediate family doing it each day. I've ordered a Mei Tai carrier to help in being able to hold him more often (he's quite big so our arms tire quickly) but it won't be here for another week or more.

Thursday, April 2, 2009

We Are Home

And exhausted. Think it'll take us a few days to get adjusted back to this time schedule.

Wednesday, April 1, 2009

Headed Home

Today we start our journey home. We had a quiet last morning. Those that know me well, know that any quiet/leisurely activity is out of the norm. After the usual breakfast buffet, we stopped a Starbucks and headed over to the playground. The school kids were out for PE as we were walking by so we stopped to watch them exercise in unison to music. It was very interesting to watch. Our girls met up with J & K and played a bit.

I had to make one last minute stop at a shop to get one (well, 4) last minutes items for the kids. They sell really cute mei mei (little sister) and di di (little brother) and jie jie (big sister) t-shirts. They were only $3 US so I had to get them. And of course, we saw what I thought was the CUTEST little Chinese style skirt/shirt outfits. Pete was off looking for sunglasses so I got each o the girls one for their birthdays. At $8 US, how can you pass that up!? Shopping is so VERY inexpensive!

Then back to the hotel to shower the girls and pack up all last minute items before the bellman came. We have out appointment at the US Consulate at 3 pm. Our flight for Beijing leaves at 6:45 pm so we have to go directly to the airport from the US Consulate. I'm told this appointment goes very quickly.

Our flight from Guangzhou leaves at around 6:45 pm. We arrive in Beijing around 9:45 pm. We hope to get to the hotel by 11 pm but it'll probably be closer to midnight. Then we get to sleep for a few hours and back up to head back to the airport. Our flight leaves Beijing at 9 am. We land in Narita, Japan at 1:40 pm, and then leave for Detroit at 3:05 pm. We learned on the way here, that that 1.5 hours goes very quickly between flights. Lastly we settle in for the long flight home. We land in Detroit at 1:50 pm on 4/2/09. We'll get our day back that we lost on the way here then.

I'm sure it's going to take us a few days to get over the jet lag and get back on the US time schedule. I'm told it's harder going back East than it is coming West.

Pete returns to work on Monday so we'll be enjoying our last few days all together before we start to settle into our new life as a family of SIX in the US!

We still have quite aways to go in the bonding process. It'll take a few months for Kaiden to really connect with each of us and learn to trust us. We appreciate everyone's love and prayers that they have given our family through this time. As cute and adorable as Kaiden is and as inviting as his smile is, please be understanding when we don't give him to you to hold. As part of the bonding process, he should only be held by us so that we can form that bond with him quicker. We're anxious for everyone to love on him, but not until he is ready : ) We are looking forward to visiting with all of friends and family when we return!