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.
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.
We made it out of the hospital in time to go to Steven's neurologist to get the results.
Thankfully, we learned that there are NO tumors in his sweet little head or anything that would be signs of a neurodegenerative condition! Praise GOD!!!!!!!
I was told that they do not know why he has weakness on his right side, if it is going to a long-term condition or whether it's going to go away. Also, they do not know why he is waking up in the middle of the night and banging his head on the crib. We were told to have a Merry Christmas and they'd see us in three months!
While I am very grateful that there is not a serious issue, we would still like to know something more, because obviously there's something going on, everyone agrees on that! But for now we will just continue keep on keeping on!!!!
Last night we decided to have Steven sleep in the pack 'n play. We actually have one that is square that's actually considered a play yard, so I put that up in the living room and slept on the couch so I could be close to Steven. I was on the couch and asleep before 9:30 and slept until about 5:00 when heard Steven start rocking back and forth and hitting the mesh on the side of the pack 'n play. At least he wasn't hurting his little head!!!!
So I am praising God for the great news!!!! And we will just continue to take things day-by-day, just like always and watch him and see how things go. If he still seems to have the weakness at his 2 year check-up, I'll talk to his pediatrician about it then, but will also talk to his physical therapist at our next appointment.
Well, Steven's MRI has completed. Now, I sit in the hospital room waiting for him to wake up. I have to admit that, even though I have tried very, VERY hard not to worry, I am scared what we are going to learn based on this MRI. I keep praying to God to give me peace, and I know that there are a lot of people praying for us, which I am very grateful for, but I have to be honest and say I'm still worried.
As I was getting out of the shower this morning and getting dressed, the line of a song kept running through my head, "I will praise the name of the Lord." And yes, I will praise the name of our Lord no matter what. It may not be easy, but I will do it. Also, the song "Strong Enough" started going through my head, as well.
I know that whatever happens, God is ultimately in control and all I can do is praise Him and go along for the ride!
This morning as soon as Caleb and Cassidy got on the bus Steven and I left the house. We went to Daddy's office and spent some time and then ran to Target. We got to the hospital a little early and the difficulties started when the registrar tried to put the arm band on Steven.
We got brought up to the sedation floor and Steven refused to stand on the scale, so we had to do where I held him on the scale and then put him down and get weighed by myself so they could determine how much he weighed. They took us to the room and tried to get vitals. You would have thought Steven was being murdered the way he cried. It broke my heart!
I sent Tony a text telling him that Steven is actually more difficult to get vitals done than Caleb. He texted back, "Unbelievable." That actually gave me a chuckle, which was very much needed at that time!
I talked to the resident on duty and then the pediatric intensivist. He wanted to know what had been going on and after I explained he said, "It's a good thing we're doing this."
So now we just wait! I am not a very good waiter!!!!!
So today I took Steven back to the neurologist. The good news is that she doesn't see a big difference on the exam from when we were there in October. She did say that she would like to see if we can move up Steven's MRI that is currently scheduled for the 22nd. She is hopeful that there may be an earlier MRI opening, but that we were told we couldn't get in until the 22nd because there wasn't a sedation opening. She said if that's the case, she was hopeful that she could "sweet talk" the nurses to squeezing him in. It makes me very nervous that she doesn't want to wait until the 22nd. I know it's because they are being cautious, but still. I also keep going back to what she said in October, in that she didn't feel "it was tumor related," but told me to watch for things like vomiting (which hasn't happened other than when we all caught a stomach bug Thanksgiving week) and extreme fussiness. While Steven is not "extremely" fussy, he is much fussier and clingier than normal lately. We also had friends over on Saturday and they noticed that Steven is not his usual happy self.
So now we wait to hear if they will be able to move up Steven's appointment. (I really don't like waiting!) The PA also did tell me that if the MRI should come back normal, then we will schedule an EEG.
The only thing that is helping me not to break down right now is the fact that I know, 100% without a doubt, that whatever is going on with Steven, God has a plan and a purpose, even if I do not understand it!
So, in the meantime, I really hope and pray we can get some sleep because this is one tired mama!!!!!
The last three weeks have been very tiring! Steven was sleeping through the night and then all of a sudden he started waking up in the middle of the night, rocking on all fours and purposefully hitting his head on the rails of his crib. I could go in and re-position him in the middle of his crib and put his blankets on him and he would go right back to sleep. Only to be awoken to the sound of head-banging again an hour or so later. Since that started he has been much fussier than normal, much clingier than normal and we're left wondering what is going on.
I had taken him the neurologist at the end of October because he started walking on his right toes and holding his right arm up across his chest when he walked or right by his side and not swinging it. We had also seen some small tremors in his hands and legs. They were not concerned about seizures and didn't think it was a tumor. I was told that we could do an MRI, but because of the results of his MRI in the hospital when he was born (which I didn't know he had had because we weren't given all of that information) and the symptoms were relatively minor in relation to everything that he had been through at birth, they didn't think it would give us enough information to put him through the sedated MRI at this time. Although, she did tell me some things to look for and said if those happened we would definitely do the MRI sooner rather than later.
Then the head-banging started at night. He wasn't doing it during the day and was taking a good nap. I thought maybe it was just a phase and he would stop. We kept our same night time routine and still the head banging continued. I took Steven to the pediatrician on Thursday to have his ears checked, even though he wasn't showing signs that his ears were bothering him.
I told his pediatrician about our visit to the neurologist, what had been going on the head-banging, the fact that we've seen him starting to hold his left arm closer to his body and chest, as well as the right, and how much fussier and clingier he has gotten, especially in the last few days prior to our visit. It was to the point, especially later in the day, I couldn't get anything done without Steven wanting to be held. Steven's pediatrician didn't find anything on the exam that would cause her any concern. She told me she would call and talk to the neurologist's PA, whom we had seen at our last appointment, and together they would determine what we needed to do next.
We had some friends over for dinner Friday night and they even commented on how different Steven seems.
I received a call from the neurologist's office on Friday. We have an appointment with them on Monday afternoon at 1:20 and an MRI is scheduled for December 22nd. Praying that we get some answers (and some sleep)!
Yesterday Steven turned 22 months old. He had a physical therapy and speech therapy appointment at the hospital yesterday morning. His first appointment was PT and he was doing some really good things! He walked on a balance beam (just one foot and holding both my hand and the PT's hand), he kicked a ball and was doing a fast walk. After watching him for a while, the PT said he has met his 21 month skills!!!! I am so proud of Steven! He has worked so hard at physical therapy and was downright determined to do what was asked of him!!!! I wish I had my camera at therapy today, he had a huge grin on his face at the entire appointment! The PT and I would clap every time he did something and then he'd start clapping! It was soooooo cute!!
To think of where our little guy was when he was born and how far he has come, just warms my heart and makes me thank the Lord for all he has done and will continue to do in Steven's life and allowing us to be a part of it!
I wanted to include a picture of Steven, but didn't get one yesterday. He always wants to play with the camera when I pull it out and I'm not able to get good pictures. But today, I had him in the high chair while I was frosting some muffins and gave him a spoon with a little bit of frosting on it. This is what we got: