6 Month Opthalmology

Kaiden has his next 6 month ophthalmology follow up appointment today with Dr. Edward O'Malley.  I just LOVE that man!  He is so easy to talk to and down to earth.  It doesn't hurt that he flattered me about my firm handshake either.  He reminds us of Steve Martin.  He truly DOES look like him!  Don't you think so too?  And he's funny as well.

 

Dr. O'Malley still does not recommend glasses.  He thinks Kaiden will just use them as a toy.  He says that he is using both eyes, his right to see close up and his left to see distances.  His nystagmus is lessened.  He is using head positioning to compensate for poor eyesight.  Surgery could be done at this age to improve that but since it doesn't seem to be a big issue, we will hold off on considering that. O'Malley continues to see improvements.  We will follow-up again in 6 months.

International Adoption Specialist

Two and one half years after bringing Kaiden home, we finally saw an International Adoption Specialist pediatrician, Dr. Oettgen.  If she wasn't all the way downtown at Children's Hospital,  would switch to her as his regular pediatrician.  She was wonderful!  Very knowledgeable and the best bedside manner that I've experienced.  Not that I don't love most of Kaiden's specialist, she was just different.  She seemed to have a true understanding of all the unknowns that we have with him.  After one and half hours of talking with her about which specialists we have seen and which tests we have had run on him, we left with no more answers than we had going into the appointment.  I am fine with that though because she reassured me that we've done mostly what she would have recommended anyways.  She did order a few more blood tests but didn't think that in the end we would know more about his condition than we do now. 

Of course with it being Fall, and especially with his neurological condition, we couldn't leave without a flu shot.  I was very proud of myself not only getting him the flu shot but also getting the blood drawn while we were already at the hospital.  Normally I would have left and had Pete take him back for those two things.  It's a good thing that his is unaware of my squeamishness.

Food Issues Worsen

This is a picture of all of the different foods that Kaeterina and I both tried to feed Kaiden for lunch today. ALL favorites of his. He refused everything except for a few sips of melted ice cream and a few sips of my ice tea in his sippy cup. We see the Nutritionist again in 2 weeks. If he keeps this up he is surely going to get a feeding tube. Part of me would be happy for that because at least then I would know that he was in fact getting of of his nutrients in. Of course I would not be happy because of all that goes along with that. It would feel like a step backwards for him. His teachers tell me that he is actually holding his own sippy cup and scooping his own food to feed himself at school. I would be thrilled if he would go back to just eating something that I feed him!

Happy 2 Year Gotcha Day!

WOW!  You continue to amaze us with changes in you.  Today marks two years since we met you and you became apart of your forever family.  You may never realize just how much you have changed us, showed us God's enormous heart for us, and especially for the orphans.  When people meet you for the first time, they often say how lucky you are to have us but the truth is that we are the lucky ones.  I can't imagine what our lives would be like without your LOUD personality.  I can't wait to see what you have in store for us over the next 12 months!

Happy 3rd Birthday Kaiden!

You are such an adorable little guy! Your smile makes my heart melt. You have blessed our family more than we could have ever imagined you would.

Orphans Worldwide

There are 132 million orphans worldwide. Watch this video with a box of tissue handy.

The Dancer from Kensington on Vimeo.

Happy Gotcha Day!

Today marks one year since we met Kaiden. 24 hours later and we signed our adoption paperwork. I can't believe how much he has changed. I thought we'd never get this far. I can't imagine what he has in store for us over the next 12 months.

Happy 2nd Birthday Kaiden

GFCF Diet Bomb

Well so much for going off of the GFCF diet. I only put him on it as an experiment because for one, the entire family was moving that way and two, I'd read alot about the diet and autistic children. I thought it couldn't hurt any to try. Turns out, Kaiden needs to remain on this diet. He woke up this morning with eczema all over his chest and stomach area. I had forgotten how bad his eczema was those first few months that he was home with us until this morning. At least now I have hard evidence to show to Peter that it's not just 'vo-doo' medicine but actually has an impact on him and probably the girls as well.

Rough Day

Today was the roughest day Kaiden has ever had at PT. His therapist is on to him and won't let him not do what he doesn't want to do. This is good in one way because if it was up to him, I think he'd roll his way to driver's education. It is bad in another way because ones he gets upset to the level he was at today, there's no progress being made whatsoever. I respect his PT but I think we need to find a better way.

On the flip side, OT was good. His therapist tried a nutri grain bar with him. As usual, he fussed and didn't like it at first but we both thought we saw him actually chew on it. By the end of our session he was willingly opening his mouth to eat it. I brought the rest of it home to try later tonight with him. We also started him on oral brush therapy. Guess what? He hated it. That's our normal. I do think he'll adjust fine just like he seems to be doing with his regular tooth brushing.

Although he has been gluten/casein free for the past few months, I thought it would be OK to try to bar because I'll try anything to get him to eat table foods.

School

Today was Kaiden's third day of 'school'. He has 2 other children in his class, both girls age 28 months old. School is supposed to prepare him socially for public pre-school next year. I still can not fathom the idea of putting him on a school bus and sending him off for the day, even for half of a day. I'm trying to keep my mind open to the possibility but that's difficult.

One girl missed today so it was just him and J. Given that I think 'socializing' my 23 month old who could care less about anything around him or even the people around him for that matter, it was a good day. He rode in a booster seat in a wagon all around the lobby. He didn't like it at first but he tolerated it and then seemed to actually enjoy it. He gave us about 30 minutes of his attention before he had enough and was done for the morning.

I'm still not sold on the idea of going that frequently though. It takes about 2 to 2.5 hours out of our morning. In order to give up that much of our time, something has to be very valuable. Nothing against the teachers or the school district for that matter. I blame it on the No Child Left Behind Act. He'd get more out of OT/PT than he does school.

6 Months Ago Today

One of the first pictures of Kaiden on the day we brought him 'home' to the hotel.

6 months ago today I met my son. I'm in awe in how much he has changed in that time span. I know the saying goes that they grow fast. But when reality hits you, it's still hard to believe!

Almost 6 months later sporting his new haircut

Early On Orientation

I attended orientation today for Kaiden's Early On program. This is where he receives OT & PT weekly via the state. Most parents in attendance were new to the program this Fall so everything was a review for me. I went only so that I could obtain Kaiden's schedule. He will attend 'school' Mondays and Tuesdays for one hour each. I would have preferred a few days between sessions so that we could see if there was improvement from session to session but that is not how it worked out. He'll have 'class' on Mondays with 4 other students that are supposed to be developmentally at about the same stage. Then on Tuesdays he'll have one on one OT for 30 minutes and the same for PT. It is of course right smack dab in the middle of our morning homeschool routine but we'll adjust. That's one of the advantages of homeschooling : )

CGH Blood Test Results

I received a phone call this morning from the genetics counselor at Children's Hospital. Kaiden's CGH blood test came back completely normal. Praise Him! She said that children change as they grow and that they would like to see him back in 6 months for a re-evaluation. At this point, we don't feel like we will do that. They can not find any underlying medical reason for his delays so we are going to move forward with the knowledge that they are most likely from institutionalization. He'll remain in the Early On program to catch up as best he can. No more specialist visits (except for pediatric opthamology) for Kaiden for awhile we hope.

I Know

I know. I'm WAY behind in posting updates. 3 months to be exact. It's been a crazy, busy summer. Busier than normal and I hope not the new normal for us : ) Since I plan to print out the blog pages for Kaiden to have as a document to his first days (months, years) with us, I am going to try to get the blog updated and fill in some missing information. Everyone is sick here AGAIN today and although it is gorgeous outside (80 degrees and sunny!), we are going to have a jammie day which will allow me to do some catch up work on the laptop. The girls LOVE jammie days. We just lounge around the house in our jammies reading, snacking, and watching dvds at will. We are on season 8 already of Little House on the Prairie. KiKi is anxious to see Laura have her baby so we'll see if we can get that far today.

Poor Baby

Our little guy is sick. Ear and eye infection. As if he hasn't had to go to enough doctor's appointments, he had to go in again today. He has not been sleeping well at all for the past 2 weeks. He hasn't had a fever nor has it bothered him when he's laid down flat, they typical signs of an ear infection. But he has had a hard time falling asleep at night and has had woken up numerous times throughout the night. Now we know why. The only reason Pete took him in (on a Saturday no less, we were squeezed in as the last appointment of the day. Have I said how much I just love our pediatrician's office?) was because his eyes had a goopy green discharge. I thought it was allergies. How are we supposed to know he's sick if he doesn't display the typical signs? Dr. Clark gave him an extra strength antibiotic to kill both infections instead of the normal 'pink stuff'. I hope it works quickly.

Neurology Follow-Up

Today was Kaiden's 3 month neurology follow-up. It went just as I had thought it would. We still don't have the test results back from the CGH yet. Today was just 2 weeks and they said 2 - 3 weeks for those to be processed. So, that meant Dr. Allarakhia didn't have much to say. Kaiden is showing immense improvements so that rules out Reyes Syndrome (which we suspected from the beginning). He showed me pictures from the MRI (we had already spoken on the telephone following the MRI when he told me everything looked normal). His brain is mis-shapened from the flat side but he said that would not affect the functioning. His EEG didn't show any seizures and his urinalysis was normal (again, we had already spoken about these things after the tests were done). So, this left us with nothing new to discuss. He was impressed to see his improvements in person but is still convinced that something medical is underlying his delays. I'm beginning to doubt that. He said to come back in 6 months for another follow-up. Unless the CGH shows something to requrie that, we don't think we will need to do that.

X-Ray and Ultrasound

I took Kaiden to Royal Oak Beaumont Children's Hospital today for his x-ray and ultrasound. I normally take the kids to St. John Hospital in Detroit for everything. Dr. N suggested I take him to Troy Beaumont because it is much closer (just 3 miles as opposed to 15) and the pediatricians now have privileges there. I agreed so she wrote the order for Troy. I called Monday for an appointment and then informed me that children under 3 have to go to Royal Oak. Dr. N left last week for vacation for the rest of the month so if I wanted to go to St. John, I'd have to call another one of the docs for a new order. I was surprisingly impressed. I didn't even know Royal Oak had opened a Children's Hospital. I wasn't impressed that they charged for parking (St. John's is free unless you valet) though. Two dollars is two dollars that I didn't need to spend. But I guess that is not important. We didn't wait 5 minutes before the US tech came out to bring us in. Kaiden had to fast for 3 hours prior to the ultrasound. Our appointment was at 8:30 am so that meant he hadn't eaten since dinner the night before. On the telephone the clerk told me to expect it to take 45 minutes. I only took about 10 for her to get all of the images that she needed. She then went to get a physician to take a look at the images before sending us on our way just in case he wanted to see anything more. She came back with the physician who took a few more images himself. He told me right there that he didn't see anything to be concerned about. Kaiden was just full of gas. Then off to expose my son to x-ray. Just one picture. All looked normal. Gas. Again we waited for the doc to view the x-ray before they sent us off. Less than 5 minutes later and another physician came out to tell me everything appeared to be fine and they'd call our pediatrician later in the day to confirm once they had the final reading on it.

Post Genetics Follow-Up

After Dr. Bawle bringing up 3 concerns yesterday, I thought we should take Kaiden in to see Dr. Nadarajah before proceeding with the ultrasound. I'm so thankful to have found Northpointe Pediatrics nine years ago. A good friend recommended them when I was pregnant with Kaeterina and we've been taking the kids there ever since.

I was supposed to attend the Leadership Summitt today at Grace Community Church. Pete knew I would not be able to pay attention knowing he had Kaiden and Kierstyn at the doctor's office so he strongly suggested that I skip it today. I'm bummed about that but know he's correct.

Dr. N gave me a stronger prescription ointment for Kaiden's eczema. She did find his left testicle. Pete was relieved : ) She said that sometimes when he moves a certain way, the muscle will retract and it'll be hard to locate but not to worry that it was there and had come down. She also wasn't concerned about a mass in his lower abdominal area. She did an exam and said it was definitely stool and that we should start him on Miralax which I had done the day before after seeing Dr. Bawle. But she did order an ultrasound and x-ray just to be sure. I'll take him to Beaumont tomorrow for those. He has a daily bowel movement (sorry if that is too much information) so I'm a bit concerned about this.

I've been doing a lot of research on autisum for the past month and half. Kaiden's symptoms do fall on the Autism spectrum. But they also fall in the 'normal' range for the neglect of an institutionalized child. Dr. N asked if we had any more questions before we left today and so Pete told her that I thought Kaiden had Autism. Which is not completely true. Dr. A said it was possible so I was only researching it just to be prepared. Dr. N discussed the symptoms of ASD with us in more detail and explained how yes Kaiden does show signs of it but it is too early to narrow it down to that. It could be any number of other things. She is more concerned about his fine/gross motor skill delays which indicate that he has something more going on that just ASD. That was a relief. I already knew and understood all that she said, but it was reassuring to hear her say that she didn't think it was ASD.

Dr. Bawle - Genetics

Today was our appointment with Dr. Bawle at Children's Hospital in Detroit. We had to wait almost 3 months to get an appointment with her. I spent one hour with a genetics counselor going over Kaiden's medical history. I thought that would take one minute since I had mailed in a 6 page questionnaire and they had all of his reports from the other specialists ahead of time as well as the fact that we don't have much of a medical history and zero family medical/birth/pregnancy history. But she wanted to go over all the specialists reports.

After that, then Dr. Bawle came in to do a complete physical on him. The first few things she mentioned were a surprise to me. She said she didn't think he had a left testicle. We've only had two appointments with our pediatrician since we've been home and although she's had numerous things to discuss with us, I thought she would have noticed that. Dr. Bawle also felt something on his left lower abdominal area. She didn't think it was a tumor but she didn't think it was just stool either because it was hard and would not roll as it should have. Kaiden had just had a bowel movement prior to coming into the examining room so this sort of made sense. She gave me a script to have an ultrasound done and suggested that I call our pediatrician to discuss it further.

Based on the fact that Kaiden is making improvements instead of progressing backwards, Dr. Bawle did not order the Reyes test. She did want to order the CGH test. The genetics counselor discussed with me the option of having the blood drawn today and ordering the test today or calling my insurance company first to find out if it is going to be a covered test (some insurances do not cover genetic testing) and coming back to have the blood drawn if we decide to proceed with it. Although it meant I would have to hold Kaiden while his blood was being drawn (that is normally Pete's responsibility), I choose to just have it done right then while I was already there. I don't particularly care for going to Children's Hospital. I also wanted to get it going as soon as we could since it seemed like we had been waiting forever to get here! It's the only option we have for finding out some of his medical history so I knew we would get it done whether it was a covered test or not. As it turns out, as long as the phsycian provides medical reasoning for the test, our insurance will cover it.