Wednesday, March 25, 2009

Potty Time

First of all, thanks to all of the Rett moms who continue to make comments to this blog. You will never know how encouraging and helpful your words and your own blogs are to me and our family. You are awesome and really inspire me to do more for our Andrew. What a blessing to have your support.

For a long time I have thought that Andrew might never be potty trained and that at the age of 25 I would still be changing his diapers, yuck! When we were in Vegas I decided to get him an M&M candy dispenser for the bathroom to work on potty training. I have sat him on the potty off and on since he was 18 months with little to no luck. I really decided this weekend to aggressively attack the issue and sit him on the potty every hour and rewarding him with candy when he did go. He loved it! On Monday he went all 6 times even when he didn't need to go. He would look at the candy dispenser, look back at me, and then look down and pee-peed. YEA!!!!! He got so excited looking at the potty and candy machine that he fell and hit his head on the tub while we were trying to brush teeth. Now that is excited. So yesterday I decided no more diapers and to just wear pull ups during the day hours. The problem occurred when his attendant came over and suggested that he doesn't do it with her and he has no way to communicate that need to go. I got soooo frustrated and told her nicely that if we get him on a routine scheduled potty time he will get his body adjusted to it and will go. She blew me off and put him in a diaper. You can imagine my frustration with this. He is a smart boy. He may have Rett Syndrome but he is in there and he totally understands what we are asking him to do. He went everytime within 2 minutes of sitting him on the pot. When you are on a roll with something like this you don't want to lose momentum and I really felt like we were losing it yesterday. So, back to square one on the job issue. I am now thinking of going back down to 2 days a week so I can give him more of what he needs. If she doesn't believe in him on this then she probably isn't trying to challenge or help him in other areas including the weight gain. ARG!!!!

Tuesday, March 17, 2009

Feeding difficulties and updates on the family

I had a phone conversation yesterday with Andrew's GI Dr. Motil. After discussing his difficulties with swallowing and chewing as well as getting his weight up she brought up the topice of a G-tube. It is taking us a lot longer to feed him- used to be 30 minutes for a meal but now taking 45-60 minutes. He is showing signs of penetration and aspiration by coughing after swallowing solids and liquids. She wants Andrew to gain a pound every month and is concerned that he is not getting what he needs due to the GFCF diet. I told her we would do everything we could to get him to gain weight including taking him off the diet. I am praying that we will not have to face a G-tube placement and I would really feel like I let Andrew down if that happened. If I can't help my own son then I definitely can't help others work their feeding problems out. Hopefully in a week I can introduce him to Pediasure and Carnation Instant breakfast. We'll see. I have started doing Vital Stim therapy on him to help with swallowing issues and hopefully we will see some changes in the next couple of months. He is a difficult patient and I can imagine how hard it was for the speech therapists who did this with him in the past.

For those of you who don't know yet, we have decided to become foster/adoptive parents. We are currently taking Pride parenting classes and will have a home study as well as home inspections soon. Once completed we will be ready for our first placement. We always wanted more children in our family and we feel that we will really be able to help some little folks. Although Andrew's care is some what demanding at times we know we have room in our hearts, home and family for more children. We will be fostering to adopt a child and are very excited. There is always a possibility that we will have to give a child back to their birth parents and while that is scary, I trust God and his will for our lives. Please pray for our family and for the child that will come to us.

Vegas was super fun and had to include a picture of us outside the Love-Beattles show.

Thursday, March 5, 2009

Gone to Vegas! Woo-hoo!!

We are leaving for Vegas today to see some family and to have some fun on the strip. Andrew is staying behind and will be getting lots of love and spoiling from his grandparents here at our house. Hopefully the dogs can survive. I am so thankful for this time to get away and have fun with Felt. We haven't traveled without our Drew-Drew in years. When he was 5 months old we went on a ski trip to Colorado for a couple of days in spring break. When we returned home after picking him up from grandparents he wouldn't wake up the next morning. After watching him listless and continuously vomiting, and waiting 5 plus hours in the ER the doctors found he had intususception, where his small bowel collapsed on itself. Thank goodness for the doctor who knew about this as they had already prepped him for a spinal tap, thinking it was meningitis. He had a hospital stay for several days healing from a procedure to correct and it was a very scary time for us. I know that God has taken care of our son and will continue to do so, but it is hard leaving him again. We hope to plan a trip in the next couple of months where he can go and enjoy a vacation too. Maybe the IRSF annual conference in Virginia? Maybe!