Saturday, December 19, 2015

Turtle Back Zoo Holiday Lights Spectacular

Tonight we took the kids to the Turtle Back Zoo Holiday Lights Spectacular and had such a great time! We've been to the zoo before but never for the light display and were happily surprised to find out that the "cost" of admission was a donation to the local food bank. We told the kids we were going for a Christmas surprise but when we started to tell them we were going to look at special Christmas lights, Kailey burst into tears because she thought the surprise was going to be the playground (I'm still not sure why that was so stuck in her head).  

Most of the zoo was open with a great display of lights throughout. The two best exhibits we saw tonight were the penguins and the sea lions because both of them had one animal that was "playing" with the people who were watching. One of the sea lions was fantastic because he kept teasing and playing around with everyone watching. There were other things you could do like sit with Santa and take a train ride but we kept it pretty simple, especially since it was already dinner time when we got there. They also had the barn open to check out some of the animals like the sheep, chickens and ponies.

There are two things that are pretty challenging lately for events like this: Cody's forceful independence and Colin's difficulty with the unknown.

The above two pictures are an example. Colin is really nervous and uncomfortable with mascot type figures or things that are big and intimidating. He is also just nervous and gets upset when he doesn't know what to expect or transitions in general. This is what we call a "life challenge" for him because it's something that affects him across the board between home, school, and activities, and probably will for a long time. In this example, we asked the kids to take a picture with the nutcracker but because it was so big, Colin started getting upset and yelling because he didn't want to. We are always sensitive to this and told him he didn't have to, but when he saw Kailey take a picture, he observed and realized it would be ok and then joined in for a picture.

The above two pictures are examples of times when no matter how much he observes, it's never ok for him to join in. We've been trying to use the strategy of just taking a deep breath because he gets really worked up and upset if he worries that someone is in "danger". Before Kailey went over to the bear he kept yelling, "no Kailey! No bear!" He also yelled and tried to run from the snowman and reindeer and when she said she wanted to pet the peacock. Sometimes we will try to work through it; we will hold him and "force" (I say that loosely) him to give high fives and then cheer when he does, but it's not always worth it to do that. We just have to let him walk away from what is making him nervous.

He was ok with the big polar bear and bear because all we had to do was tell him that it was "just pretend" and bang on it a little so he could hear the hollow sound.


Cody's forceful independence is the other challenge. To put it simply, he absolutely 100% of the time wants to do what the other two are doing. Sometimes it's ok and other times, he's not quite ready but makes his displeasure known very loudly. I'll be honest, I used to be thankful when I saw people dealing with their "difficult" child in public that it wasn't mine but that. is. us. He just wants to do what everyone else is doing which is hard because he still is only 15 months old with short little legs. He is really loud when he is not happy about something we won't let him do.  

The tears below are because we *actually* tried to get him to pose in a picture with the other two when we gave him some freedom outside of the stroller.

All in all though we had a great time!  #tobinsdotheholidays2015

Wednesday, December 16, 2015

He Leads the Way

Chris and I walked out of an IEP meeting today feeling something we haven't felt at a meeting in a very long time, happiness. It is refreshing to walk out of a meeting when everything that is discussed is done positively.

Today's meeting was part of the settlement in which we were to discuss the independent evaluations that have been conducted over the past few months, particularly the Functional Behavior Assessment and the BIP (Behavior Improvement Plan) that was going to be incorporated into his new IEP. This year has been going really well from our perspective and the feedback we have received from the staff working with him has always been positive. In addition, Colin has grown and matured a lot since last year which we feel has really contributed to his progress. The discussion that ensued today was extremely positive and encouraging with conversations about how well he is doing academically (he is on grade level!) and socially, how he is funny and charming and making progress in many areas. He has come so far behaviorally and the challenges that are still remaining (mostly task avoidance) are now being addressed with specific methods that the staff is being trained on. I was so proud of my little boy but also so thankful to sit there and listen to his teachers who have worked so hard to make sure he is a valuable and integral member of their classroom. This is what I knew was possible when we made this decision for Colin.

No matter how happy I felt today, it is just as important as ever for Chris and I to continue to take one day at a time. This educational journey we are on with Colin will be long and there will be lots of ups and downs along the way but we can go to sleep tonight knowing that we are doing the best we can for what we believe in our hearts is the right place for Colin right now. He is proving that he CAN do what we always KNEW he was capable of. It takes a lot of hard work from many people and open minds to see his potential. I am feeling thankful tonight for this day and for this little man who is leading the way...

Friday, December 11, 2015

Update on the Patient

When we met with the doctor that performed the surgery on Colin's tonsil removal, he had discussed numerous times that the recovery was about a week. With this in mind, we loosely planned that Colin would be home recovering from Wednesday to Wednesday and then would try to have him return to school on Thursday, just over a week later. 

During the first few days after surgery, Colin did better than we expected. We kept the pain medication going on a schedule and while he was far from himself, he didn't cry or complain too much about the pain itself. He ate and drank more than I expected but far less than was typical for him. He surprised us on day 2 with a request for slices of pizza and so we obliged; he ate both big slices! We let him dictate what/when he wanted to eat knowing that his appetite was down due to discomfort. We pushed the liquids more but he was actually pretty good about listening. Colin isn't much of a drinker to begin with and never has been, so he probably drank more during this time than he does regularly!

While he isn't a complainer at all, he did voice his discomfort during convenient times; at bedtime: "I stay here on the couch, my throat hurts". Although he knew how to use this to his benefit, he still was far from himself. He was very mopey and emotional and when he did interact with Kailey and Cody he was pretty irritable. This is more what we expected of him because he doesn't always know how to effectively communicate what he is thinking or feeling.

The peak for us was day 5 in terms of being the worst (something I remembered with myself and several people said this as well). That night he woke up in the middle of the night screaming and crying, the ONLY day he carried on (he didn't even do that the day OF surgery) and it took awhile to settle him back down and get him to sleep again. It was also the only night he needed pain medication in the middle of the night. This was due to the scabs healing and/or falling off. After that, we noticed that we were on a little upswing and things slowly started to improve from there.

As we got through the day exactly a week later, we felt that he would be ready to send him back to school yesterday even if it only meant he was there and simply getting through the day. His teachers said he had a great morning but we got a call about halfway through the day asking us to pick him up because he was so exhausted; something I had thought might happen. He was pretty emotional last night but rebounded this morning and happily got on the bus and made it the whole day. He even went to his private karate lesson after school today and did really well.

These pictures were all from tonight, the first day/night where his "Colin smile" reappeared. It makes me feel much better to see my little boy returning to himself, even though we know he's not quite 100% healed yet. We can still tell what's off with him but he's far better than where he came from! His voice still sounds funny and he's still not sleeping as well as we are hoping for (there are some sleep behaviors that we now have to work on breaking - we had let things go for so long since we knew he was really uncomfortable at night prior to surgery) but this *should* improve over the next week. We are hoping with a restful weekend, he will be mostly back to himself by the beginning of next week!

Wednesday, December 9, 2015

O' Christmas Tree

Despite Colin not feeling 100% like himself, we still wanted to get the Christmas tree up and decorated before it felt like it got too late (we like to enjoy our trees for awhile before Christmas but it comes down pretty quickly after Christmas). We weren't able to swing it before the surgery, so we got the tree on Monday and put the lights on but we did not decorate it until yesterday. 

Each year seems to feel better than the last in terms of the excitement surrounding Christmas. From the moment the kids realized we had the tree, they have been staring in awe at it and will still call us into the living room just to show us again.

Ever since Chris and I first started decorating a tree together, we have been collecting special ornaments that have been gifts to each other or from friends and family through the years. Our special ornaments now include the homemade ones from the kids. I make sure I make a note on the box or package with the year and who it was from because it is just as exciting for me to take out each ornament and remember where it came from and what it means to us. I can imagine that as this collection grows, it will become even more fun with each year that passes. The kids would ask about each one and exhibited the same excitement.

Now that the tree is up and decorated, I love the glow it gives to our living room and the feelings that I have walking into that room. I know they all feel the same way, especially since Kailey was up before me the other morning and I found the Christmas tree lights on and her sound asleep on the couch.

Some traditions always remain the same with the angel going on first followed by the special balls with each of our names on it and then everything else.

Cody even got the idea and made an attempt with his ornament this year.

I can't wait for all that this holiday season has yet to bring!

Thursday, December 3, 2015

Colin's Tonsil Removal

Back in October, I wrote this post describing our visit to the ENT throat doctor and the decision that was made to have Colin's tonsils and adenoids out. He has always had enlarged tonsils and smaller passageways but it had gotten to the point recently where they were so enlarged, they were preventing his ears from being able to drain fluid (particularly his left). Symptoms that Colin had been experiencing due to this were worsening more recently (he was not sleeping well at all lately, complaining a lot about loud noises but had difficulty hearing, and some of his other behaviors indicated he wasn't feeling well). While we knew it was going to be a difficult recovery, we were anxious for the improvement he would experience from relieving the other symptoms. 
Colin's surgery was yesterday and we were anxious going in because the day prior, we noticed that he had some minor congestion. This is pretty typical for him as he does go through cycles of seasonal allergies but the doctors were still concerned and did several checks before deciding that it was ok for them to proceed with the surgery.

We did explain to Colin the day before that he would be going to the doctor to have his throat "fixed" but we did not give any further details as we knew it would make him nervous. He actually enjoys going to the doctor for his various checkups and will do everything that is asked of him without any complaints. We put his "doctor pajamas" on and then the nurse gave him some "giggle medicine" to help calm and relax him before taking him to the back. This time was quite entertaining for us as he put on a little show with his antics due to the medication.
She explained that it would make him feel heavy and after a bit, he kept trying to sit up or shift in the chair but looked like a turtle that had been flipped onto his back. He kept making straining noises like he was trying to move really hard but he wasn't actually moving anywhere. After he finally settled in the chair, he was singing and carrying on with a conversation we couldn't always understand. We were laughing quite a bit and he kept smirking at us and saying "what're you laughing about?".
It was comforting for us when it was time for him to go back because we actually knew one of the nurses from our church, so she was the one who actually carried him back and then was in there with him the whole time. The procedure only took about 20 minutes so he was gone and back with us within an hour. He was wheeled to us in tears because they said when he woke up, he was immediately looking around for us. He settled down pretty down quickly and was taking sips on his juice right away. The rest of the day was a little difficult because you could tell he was in pain but he's pretty tough in how he handles pain. There was a lot of sad crying and snuggling but he did eat a tiny bit and took sips on a drink all day. At one point, he even asked to sit and work in a book after watching Kailey do it for awhile.

Last night, he slept from about 9:30-3:30am and has pretty much been up since then. The day has been very up and down with bursts of him almost being his normal self and then times where he is really weepy and needs to be held. Throughout the day, he would put his arm around me and pull me in for a kiss on the forehead, like he was assuring me he was ok.

At one point this evening, he was even up kicking around a soccer ball after watching something on Netflix about soccer.

He's a trooper and hanging in!