The purpose of this blog is to share our journey of raising our two boys with special needs. Our oldest has been diagnosed with Childhood Disintegrative Disorder, a rare form of Autism and Complex Partial Seizures. Our youngest has been diagnosed with Autism as well as developmental delays.
Thursday, December 29, 2011
Merry Christmas (a little late, I know) and Happy New Year
Dear Friends and Family,
Yes, I am just now starting to work on our Christmas letter, which is going to end up being a Happy New Year letter at the rate I’ve been going!
We have so much to be thankful for in 2011. Everyone has been healthy, which is a huge blessing, seeing as how we had two children in the hospital two different times last year! It’s never fun when your children are in the hospital.
2011 has been a year of challenges and excitement.
Tony continues to work for the government and is constantly getting new duties added to his job description. He also continues to do some adjunct faculty teaching.
I continue to stay home and take care of Tony and the kids. I manage the kids’ services and run them to all their doctor’s appointments and therapies. I had more than 220 doctors and therapy appointments for the kids last year! So to say I’m constantly on the go would be an understatement!
Caleb is now nine years old and in the fourth grade and continues to puzzle Tony and I, his teachers and the doctors. While he doesn’t seem to be drastically regressing like we’ve seen in the past, he has been exhibiting problems with his short-term memory, to which the doctors are puzzled. His teacher expresses concerns about his lack of focus, but no one really knows what to do about that issue. Caleb continues to receive his in-home support through the State of Kansas, for which we are very thankful! It is a huge help to us to have someone be able to come in and spend about three hours with him in the evening.
Cassidy is now eight years old and in the third grade. She is a puzzle as well, only from the fact that she likes to defy all authority and thinks that rules do not apply to her! But she’s a huge help when she wants to be!
In July, Caleb and Cassidy spent a week at sleep away camp. It’s a camp for special needs children and both kids had one-on-one counselors. It was a much needed vacation for Tony and I as we were able to go with Steven to Eureka Springs, Arkansas and do a lot of relaxing! When you have special needs children, it’s hard to get a break. We love Camp Barnabas and the kids are already signed up to go again in June!
September 8, 2011 - Finalization Day with the Judge
Steven will be 23 months old on the 30th. We were very excited when we learned in May that we would be allowed to adopt him, which we were able to finalize on September 8th. Last January 1st, at 11 months old, Steven crawled for the first time after weekly physical therapy. We were all so excited when he started crawling. We continued with his physical therapy to work on walking. Steven’s hard work (as well as the hard work of his psychical therapists!) paid off when he started walking at 20 months! We now can’t keep him still.
As some of you may not know, Steven was born not breathing due to labor complications. From what we learned upon his placement with us, the doctors were not sure that he was going to survive. When it appeared that he was going to survive and was breathing on his own, they did not know what type of developmental delays that he would endure. We are so grateful to God for the progress that Steven has made! He is still not talking, but has started signing some words. We have added speech therapy to his weekly schedule! I just know that he will continue to do well!!!!
Steven did give us a huge scare this October/November/December. Because of his medical history, when he started exhibiting some symptoms of muscle weakness we notified his neurologist. They wanted to see him, but didn’t really see much that they were concerned about at that time and just wanted to monitor him. About six weeks later he started waking multiple times a night and banging his head on his crib. We went to the pediatrician who ultimately called his neurologist. We were then sent back to the neurologist and they ordered that an MRI be done to determine what might be going on. Some things that they were looking for were tumors or neurodegenerative conditions. Thankfully, we were pleased to hear that all looked clear! While he still is exhibiting the muscle weakness and still occasionally banging his head at night, we know that it’s nothing neurological and will just continue with his therapies and do what we have been doing to help him.
So that is a quick review of what’s been going on in the Sines household! We pray that this letter finds all of you doing well. We’d love to hear how things are going with you.