Week of Ups and Downs

What a week we have just been through at the Brunetti week!

The week started so nicely with Easter. We had such a lovely day with our family.

Tuesday was Tony’s birthday. I had to take Tyler to a GI check up that went quite nicely. She gave him the green light to get off the Prevacid. This made us happy as he does not like Tony in the mornings when he has to take it. The day was capped off with me cooking Tony’s new favorite dinner Parmesan Crusted Chicken Tenders and Yukon Gold Potatoes. A girlfriend of mine made a FABULOUS coconut cake as a surprise. Tony had a great day and we were gearing up for Kindergarten Orientation the next day.

Wednesday morning, Tony woke up at 5:30 to take a shower. He screamed at me to get into Tyler’s room. Tyler was face down on his pillow, which is normal, but he was breathing very strangely, had saliva and blood coming from his mouth, looked like he was trying to throw up, and he was as limp as could be. I insisted Tony call 911 as I knew this was a seizure but he wouldn’t do it. He claimed he sounded congested. I asked him to call again as I was now cradling my sweet baby and he wouldn’t do it. This episode lasted all of 2 minutes, if that, and then Tyler was sleeping like a baby which I know you are supposed to let them do that. So we let him sleep and I went to orientation extremely upset that we can’t be on the same page when it comes to Tyler.

Orientation was ok. A lot of it I knew already since Tyler is already at the school. I went with my neighbor, who’s son is in Tyler’s class. When we went to pick him up, I lost it. I started to cry. These new moms must have thought I was nuts. But the key there is NEW moms. For the last 3 years we have been in the safe haven of preschool. Many of the moms have been there 2 years with us. The class size has been small and the kids are ok with Tyler. Well since prescshool is an option in our town and Kindergarten is not, we have about 70 new children coming to school. That’s 70 more parents to get looks from. That’s 70 more parents that may or may not talk to their children about Tyler and why he is different. That is 70 more children who may or may not have been exposed to special needs kids.  But what really hit me is he is starting Kindergarten in the fall. He is growing up so quickly. He has come so far but when I looked around and listened to all that would be happening during this milestone year, I realized that he wouldnt’ truly be one of those kids. It was another reality slap for sure and after the morning we had, I just couldn’t hold myself together. Thank goodness I was able to be in that safe haven of preschool to compose myself. I am not sure I am ready for this.

Tyler ended up being perfectly fine the rest of Wednesday. I had taken the day off as a vacaiton day and I was able to spend a lot of time outside with him as the weather was perfect. We went on the swing, played with bubbles, played with a ball.  It was wonderful. 

Thursday morning came without any issues with Tyler. I kept him in our bed as I wanted to monitor every move he made during the night. I am nuts I know. I just needed that comfort. Tony and I headed to school for an IEP meeting to discuss summer programming. I was ready to  yell, fight,s cream, whatever I needed to do to ensure they put him in 5 days. The past 2 summers he has only attended 3 days a week for 2.5 hours which isn’t enough. So we sit down, the team starts raving about how well he is doing now that he is on the new medication. They love how he is willing to participate, play with children, eat and drink. They, and us, were thrilled. So it came time to decide the days and the team said if he wasn’t there for 4 days that he would suffer significant regression. So it was decided that he will go 4 days. We were thrilled. AND, AND he will be getting music therapy every Monday during the summer for 1 hour. Why his other meeting couldn’t go this smoothly, I am not sure. But we were so happy when we left there!

Friday and Saturday were pretty uneventful. We played outside and Tyler was great. We had lots of fun together.

Sunday, yesterday, we needed to be up bright and early for our March of Dimes walk. The weather was very chilly so we decided to not take Tyler since he has been so sick most of this year, we didn’t want him out in that possibly coming down with something else. Well he wasn’t himself in the morning. He wouldn’t eat breakfast. He was miserable. He didn’t even want to walk to the car. So we drop him off with my Dad and go to the walk. We are 3/4 of the way through and my Dad calls on the cell that Tyler had another one of those episodes where he was listless, and saliva coming out of his mouth and then all he wanted to do was sleep. And that kid slept most of the day away.

Now one of the things we are unsure about is if stopping the Prevacid had anything to do with him throwing up yesterday and not wanting to eat. That prevents reflux. Tuesday was his last dose. This happened to us the week he had the flu. We had stopped it then 3 days later he threw up then was fine. Which today, he is PERFECT as we gave him the Prevacid again and he ate like a champ. So looks like we may have to stay on this medicine.

I am going to call the neurosurgeon to see what he may recommend we do for these episodes since the neurologist told us they definitely aren’t seizures but rather behavioral events. Stay tuned!!

Easter

We had a wonderful day yesterday surround by family. Tony decided he would like to host Easter this year. First it started with just my parents and brother coming over. Then we invited Tony’s Dad. Then we invited his uncles. When all was said and done, we had 13 adults and 2 children. While the weather could have been warmer (it was only in the 30’s yesterday) we couldn’t have asked for a better day. We had appetizers and drinks abound. All of the china that Tony and I received for our wedding, 12 place settings, were used for the first time in the 7.5 years we have had them. We had a delicious ham dinner. We celebrated my father and Tony’s birthdays. But most of all, we had lots of love. While Tyler doesn’t understand the Easter Bunny or why there were items in a basket for him, he knows he was surrounded by love. And that is the most important take away for him from yesterday. I think we might have started a tradition now as I think we will host Easter going forward.

Here are some pictures from our fun day. I hope each of you had just as nice of a day as we did.

 

 

 

 

Crafting

Ok so this is totally NOT related to Tyler but felt like sharing with my fellow readers.

I am a HUGE crafting junkie. I had a dream of having my own store some day selling hand made items. Of course once Tyler came, that dream was put on the back burner. I love to work with rubber stamps, painting, candy making and cross stitching. I have so many items in my craft area of the house from when I had my big dream. Well, I have slowly but surely started finishing projects I had been working on and starting some new ones. I am posting items on Etsy, a WONDERFUL crafters website. Here is the link to my direct page.

I will be posting items often so check back. I am so happy that I have some “time” to do these things I love.

Progress Report

 

Since the fall, Tyler’s team has been keeping track of his “self injurious behaviors” to see if there is a pattern. These behaviors include banging his head, hitting his head, and biting. They also have been keeping track on average how long he can tolerate staying in the classroom with his peers. In the fall the numbers were pretty high for his behaviors. And the classroom time, on average, was only about 30 – 40 minutes.

Yesterday, to our surprise, we received a progress report on these same items. Something to keep in mind is we started the Resperidone back on February 15th. For the month of March, his tolerance for being in the classroom was 65 – 70 minutes and the number of biting/hitting/headbanging dropped by almost 75%!! There was one week where he only attempted to bite 1 time and hit is head 2 times. We are so proud of him and so happy with what this might mean for Kindergarten!!! Any doubts that we had about the medication have certainly gone out the window!