I am working on putting together a packet of the signs Max knows for his new day-care he will be starting tomorrow. I was surprised to see how many signs he knows. He has his own modifications of some of the signs, but we understand what he is telling us.
Here is a list of the signs he knows.
1. More 2. Hello 3. Please 4. Swing 5. Sing 6. Play 7. Eat 8. Drink 9. Out/Outside 10. Fish 11. Dad (Arg! Looks a lot like "hello" so I am not convinced!) 12. Ball 13. Dog 14. Jump 15. Bed 16. Bye 17. Yes 18. Change 19. Bath 20. All Done 21. Car 22. Go
So proud of that little guy!
I am so nervous about Max starting at his day-care center. If it wasn't for his feeding issues, I would be OK.
Last week, John's mom and step-dad (Marsia and Ted) invited us to spend a week with them at their time share in Branson. We had a wonderful week of relaxation! We did lots of sitting by the pool, relaxing in the room, and eating great food! Ava loved being in the pool, she spent most of her week in the pool or hot tub. Marsia and I spent half a day at a spa getting a manicure, pedicure, and one hour massage. It was WONDERFUL! John and I also had a couple date nights. One night we went out to eat to a seafood restaurant and then to the Neal McCoy show. The show was lots of fun. On our second date night, we went to The Titanic museum. Max had lots of fun getting attention from Grandma and Grandpa. He wasn't super excited about the water, but got in a few times. We also spent a day at an amusement park. Thank you Marsia and Ted for the great week!! We had a great time! Max wasn't this happy the whole 11 hour car ride!
Last Friday, Ava graduated from Pre-K and had her last day at the day-care center she has been going to since she turned three. I can't believe Ava will be going in to Kindergarten, she has grown up too fast. She is excited and ready to go! The only thing she said she is nervous about is making new friends. Best of Luck in Kindergarten, Ava!
Since this is Max's last week at his current day-care center (tears are welling in my eyes), I visited the center this week. Max's Speech Therapist also came for an hour. I wanted to get a feel for how he is doing at his current day-care to, hopefully, help me transition him to his new day-care center that is in the school district he will be attending when he turns three. I was a very rough week counting down the days until a big transition for Max and me.
I was pleasantly surprised at how well he does! He followed directions and the routine very well. I got to enjoy circle time with him. (I have a video, but can't get it to post) He loves singing songs, it was so cute. I left for an hour and came back and joined his speech therapist when the kids were heading in for lunch. He came in and sat in his chair, listened to a couple books on tape while one teacher changed diapers. He did great at meal time. He ate like I have never seen him eat before. The speech therapist and I were both in shock. This was the first time his speech therapist has seen him eat other than at home. We are trying to figure out why he is so calm when eating at day-care and does so well! At home, he seems like he is rushed and doesn't eat much. I am not sure if it is because when we are at home we don't have a routine that we follow. After he ate, he signed all done and the teacher called him over to wash up. Once he was cleaned up, he walked over to his mat and laid down. I gave him a kiss and left. He seemed so grown up!
It was fun hearing about little things that Max does during the day from his teachers. They told me when Max is getting in trouble, he will look at them and sign "hello" like he is trying to change the subject. The teachers sign to Max when they are talking to him, which I really appreciated. We are really going to miss the center he is currently at and they will always hold a special place in my heart! All of Max's past and present teachers put together a photo album with a picture of them with Max and a little note to us. It was so sweet!
Max has a two week break before he starts at the new center. We will be on vacation for a week and he will be at home for another week. I hope we don't break him of doing so well away from us.
Ms Jen- Max has spent most of his two plus years with Ms Jen. She was with him when he was in the baby room. She knows Max VERY well!
Ms Adrian- Ms Adrian is fairly new to Max. She has been with Max for about six month and in those six months Max has grown attached to her and I think the feeling is mutual.
I have recently been reading through emails that have been sent to the RTS list serve. I couldn't help but to get a flashback to the day when Max was admitted with his first aspiration pneumonia. During that hospital stay, we found out that Max was aspirating on his feeds and his reflux. He was also diagnosed with Rubinstein -Taybi Syndrome. He was sent home with a NJ tube (a tube inserted through his nose that feed him to his intestines). Over the next couple weeks, we discussed with the GI Dr and Surgeon the options of a permanent feeding tube. We were given the options of a G-tube with a Nissan wrap or a GJ tube. Although Max was fed to his intestines, he developed another aspiration pneumonia from the stomach bile he was refluxing. During that admission, Max had surgery to place his G tube along with a Nissan wrap.
When the G-tube was placed, I wanted to know how long he would have it. Would it come out in 6 months? Would he still be fed by a tube when he was 25? Not knowing was so hard at the beginning. I had a hard time wrapping my head around the whole feeding tube. An hour and a half feeds seemed crazy to me. How could we fit a feeding tube in to our life. I have never even seen a child with a feeding tube outside the NICU!
But we went home and worked to find a schedule that worked for Max. As time went by, the number of times he was throwing up a day and the length of each tube feed decreased. The feeding tube became part of our life and we accepted it. We accepted the fact that we were not going to know when Max was going to come off the feeding tube, but we have a feeling he will someday.
At the beginning of June, we took him off his overnight drip and gave him the amount he was getting overnight in a sippy cup. We give him two ounces in his sippy cup six times a day. We are going to work to bump him up to 3 ounces in his sippy cup at a time and see how he does with that. He loves to drink! Got to love progress! Way to go Max!
Michael Ellis is running 26.2 miles to raise money for RTS! What a guy!! We have had the opportunity to meet this wonderful family at the midwest family reunion in the Dells and think it is awesome that he is raising money for The Special Friends Foundation!! Please click on the link to the right of my blog for more information.
I married my husband, John, in June of 2002. We have two children, Ava and Max. Max was born on November 15, 2006 with a rare syndrome (Rubinstein-Taybi Syndrome). I hope to educate others about RTS and meet families on the same journey.