Catching up on Miller

The past 6 months have been quite the experience. I've been putting this post off for awhile now while we waiting for test results and just for some time to pass. Pretty much from the beginning things with Miller have not been the easiest. He came early and small and made me worry and stress more then I ever had. He was fine of course just needed a little extra help and a little oxygen. He was the cutest baby I had ever seen that was for sure. As he grew I fell more in love with the little guy. I started noticing he wasn't hitting milestones around his first birthday. I didn't think much of it because he was early and so small that I just assumed that was why. His first birthday came and went and he had just learned to pull himself up to stand and finally started crawling normally with his belly off the ground. I watched his cousins and friends' children excel developmentally and run and play and talk. More time passed as we prepared ourselves for the birth of Monroe. When she was about a month old and we were settled into our new apartment I finally got in contact with the school district to get Miller tested for their Early Intervention program. I cried my eyes out every time I had to explain his delays to anyone. When the evaluator came to test Miller she said she saw some warning signs, basically saying she thought he might have autism. Of course this shook me up a bit but I know my son and I think any child can have a sign of autism. The spectrum is huge! Well at 20 months and not walking or talking Miller of course qualified for early intervention. We got set up with a special education teacher. Her name is Aubrey and she comes twice a month to visit with Miller. Shortly after getting early intervention I looked into seeing a developmental pediatrician. There is a group in Salt Lake and of course the wait was about 2 months but we saw a developmental pediatrician, Dr. Winter, in May. She and a physical therapist met with us and I cried through this appointment just like I did any. They did similar tests on Miller, gross motor, fine motor, cognitive, etc. Then they leave the room and talk with each other, basically deciding what needs to be done to help your child. Dr. Winter came back in expressed her concern for Miller. She gave me a list with a battery of tests that she suggested we do. Majority were blood work, urine analysis, a sweat chloride which tests for cystic fibrosis, and a brain MRI. I was kind of in shock and of course wanted to get the tests done if she recommended them. We immediately began trying to get the MRI approved by insurance and I had the blood work and sweat chloride scheduled for the following week. I had to get the supplies for the urine analysis and do that myself. Good stuff. Then I took his frozen urine to hospital with us. The pictures that follow are from primary children's and his blood work and sweat chloride. We've had a lot of rough days through all his appointments and just dealing with his delays but this day, at the hospital was one of the hardest days so far. Just typing about it now brings tears to my eyes. They did the sweat test first. So to test for cystic fibrosis they need a sample of sweat. So two nurses hold copper plates on his forearms for 5 minutes, these send electric pulses to stimulate his sweat glands. He screamed bloody murder. What toddler is ok with having their arms held down. I don't know of any. Then after 5 minutes they put gauze on the stimulated areas, put heat packs on both his arms, then plastic wrap the heat packs, then put on the jacket I brought, then wrap his arms with tinfoil. Thus the pictures of Miller wrapped in foil. So after playing around in the Ronald McDonald playroom for 30 minutes to build up a sweat, we headed back to the lab. Thankfully they were able to get some sweat off the gauze so we didn't have to redo that test. Next they did his blood work. The nurse missed his vein 3 times, all the while I was holding down a screaming, I mean violently screaming and sweaty Miller. They needed 5 different samples of blood for all the different tests and I think that was the worst part. No parent likes to hear their child scream in pain and fear. It was rough. But of course we survived and Miller passed out in the car before I even pulled out of the lot. We got good results back from all those tests which was amazing news. We waited about 2 months before the MRI was approved. That wasn't actually too bad. Getting his IV in was the worst but they were more successful and got it with one try. As he was getting sedated he was screaming but his body couldn't really fight it so it was a little bit funny. Recovery wasn't bad at all and he was soon back to himself. I heard from the doctor the next day which was Friday. She was just looking at the report of the MRI and not the actual image. She said there appeared to be a small area of injury in the back center of the ventricle. She said she was going to speak with a radiologist and get back to me. I didn't hear back till Monday so it was a bit of a rough weekend. Wondering why and how and what it meant for our little man's future. After looking at the images and talking with the radiologist they thought it showed immature myelin as opposed to injury. Basically the doctor thought his brain would continue to develop and mature and all would be well. She suggested we see a pediatric neurologist to get more information. Of course the wait for that appointment put us waiting till October. We were able to get in on a cancelation a few weeks ago. The neurologist was great and went through every part of the MRI and all of Miller's tests with me. It was quite amazing to see his brain. He agreed with the immature myelin and feels this is the cause of Miller's delays. As long as we continue to see progression instead of regression we won't see him for 4 months and we will most likely get another MRI in a year. He sees most patients with this similar issue fully develop around 3. There is nothing specific we can do for him but he just encouraged us to continue the early invention and keep him in a stimulating environment. I recently started talking a speech class. It has been good for me to meet with other parents whose children have developmental delays. It's something I never thought I would experience and we are still learning more and coping with it daily. Miller started walking fully shortly after his 2 birthday. Dr. Winter also diagnosed him with hypotonia, which is just low muscle tone. It is a symptom of many diseases, thus why we did all those tests. Anyways, he doesn't have the best strength in his hips which makes stairs, inclines, and declines harder for him. It's funny the things we celebrate in our house but Miller gets praise for lots of things. He still can't run or jump or do most things kids his age can but just seeing him walk is awesome. Miller babbles and makes a lot of noise but has yet to say any real spontaneous words. We have been working on signs for a long time. He knows what they mean but isn't super motivated to sign back. He is understanding more and more and recently has started pointing out animals when we read books and I ask where specific animals are.We still don't know for sure what the future holds for our little man. But no one knows what the future holds right? We are doing everything we can for him and we are so hopeful he will have a full and bright childhood. I've always called him a fighter and I think he always will be. It's been quite an adventure, none of it has been easy and none of it has been what I expected but I have learned so much and I am continuing to grow and become a better mother. I recently found a quote on another mother's blog. She has 2 children with developmental delays, I don't know much about her or her children but I know how she feels so I feel some connection. "Success is not final. Failure is not fatal. It is the courage to continue that counts." Winston Churchill