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.