Wednesday, July 27, 2011

Years of Progress

Today we had the blessing of getting together with a family that I have been communicating with through Facebook. They have a daughter who just turned one that has joined the "diagnosis train". We were on this train for so many years before we took a break.
When I met their little girl, it brought back so many memories of when David was that small. It's amazing how many of the same mannerisms and characteristics they share from when David was around the same age. While there are also differences in some of their symptoms, it still took me back to a place that somehow got buried in my memory.
At one, David weighed only about 15 pounds and had no trunk or head control. He absolutely could not sit up yet. He had no means of "transportation" for himself. But he was happy and loving all the same. After seeing their little girl today I realized how much progress David has actually made over the years. He is now 11 and 55 pounds. He has head and trunk control when he wants to (he's a stubborn little thing), he sits up when he wants to and he can get out of a sitting position, and he definitely moves freely about the house by means of scooting on his back. This is A LOT of stuff for a kid that does not have good control over his body. I am so proud of him when I think back to all the things he has accomplished over the years.
I thoroughly enjoyed visiting with a family that is going through some of the processes that we went through. No matter how close to a situation you are, if you haven't lived it, it's hard to picture. This family sees some of the same pictures we have. I appreciate them sharing their family with us. It made me happy to remember where David started and where he is now. I hope seeing David helped them envision that life with special needs is so special and rewarding and that progress is possible in the smallest increments for their child.

Tuesday, July 19, 2011

Questions & Possibilities

We had a visit with David's gastrointerologist yesterday morning. We only have to see him once a year, which is nice. We started seeing him because we needed someone to monitor David's feeds and his gtube site for us. We feel like this doctor is one who tries his best to look after David's best interests.
I was nervous going into this appointment. I knew that we'd been having some digestive issues for a few months now with David. His throwing up has gotten worse rather than better. I knew that we could come out of this appointment with news that was less than favorable. But I still tried to be optimistic.
We went in and explained the situation. He is almost sure that David's reflux has gotten worse. Which could mean that he's on the road to surgery to correct it eventually. We would have to run some tests and monitor his condition over the months to come to make this decision. I already told him that I would NOT be repeating the pH probe that was so unsuccessful 2 years ago. He understood after what we'd been through with that particular test. To make a long story short, the pH probe has to be done while hospitalized and involves a tube being placed in the nose and down the throat. It sits at the top of the stomach. We battled getting the probe into place with David. After about 10 of 24 hours, it all ended with David throwing the probe up and it was hanging out of his mouth. The nurse had only seen it one other time in her 18 years of doing it. My child is sooooooo talented.
Anyway-that is one of the two possible issues. The next one's solution is the most bizarre to me. David could possibly have a stomach emptying issue. The way to test for this is actually an easy one. They would just have to observe David with one of his feedings and watch it by putting a radioactive dye in with the feed. If that's the case, he could be simply throwing up because we're stuffing him too much. One way to fix this on some children is to put them on a slow drip to feed overnight. This is not an option for David. He does not sleep well at night and that could be a huge hazard for him.
So what could the other option be????? Well, the answer would be botox. Yes, botox. He would be put out every 2-3 months to have botox injected internally into his stomach. This is relatively new, but they are having success with it. I guess it allows the stomach to digest the contents much more quickly. The reason I don't like this is because David does not do well with anesthsia. It makes him super sick and to have to have this done every 2-3 months would take it's toll on him, myself, and Michael.
The good news we gained from this appointment is that while David has been throwing up much more, he hasn't developed pneumonia recently. And his weight is up along with his BMI from last year. He is beginning to follow a much more healthy curve. Not the curve of an 11 year old, but a curve none the less. So the GI doc wants to wait on anything right now. David is doing so well clinically that he would hate to rock the boat. Instead we will be keeping in touch on a quarterly basis with the office to let them know where David stands. I am happy with that news.
So until we know more, I will just continue to enjoy the rest of the summer with my boys. Pretty soon I will have a little bit of "empty nest" syndrome since Kyle will be flying the coop into kindergarten. Hopefully we can wait on any procedures to be done until next summer. That is my wish. In the meantime, if we see you somewhere and my kid tosses his cookies (through no fault of his own) I apologize in advance :)

Friday, July 1, 2011

Vacation Time

We recently arrived home from our yearly vacation to South Carolina. It's a long drive with the boys, but they are both really well behaved in the car. Kyle usually watches movies or plays with his animals and David gazes out the window for long periods of time, which is what seems to be causing his car sickness issue for the last several long trips. Let's just say that we travel with a lot of clean towels and when we arrive, we have lots of dirty ones!
Kyle was super excited to go this year because we were overlapping 3 days there with my parents. The last time we did this, Kyle was 1 and doesn't remember. Kyle was Grandpa's best buddy while they were there and we went to the pool or beach with them everyday. My dad even watched the boys while Michael, myself, and my mom all enjoyed a wonderful dinner at the Melting Pot in Savannah. That made me a little nervous since I'm pretty sure my dad hasn't changed many diapers in a VERY long time-especially not an 11 year old's! But he did a wonderful job and we had a great time out without the boys, which is a rare occurence.
When my parents left, friends of ours who live in the same town as my parent's home arrived back in town and we got to spend some fun time hanging out with them. It's always fun to visit with old friends and we try to see them every year!
I think this was the most laid back vacation we've had yet and it was wonderful. The boys were both well behaved (although David had an extremely hard time getting used to not being at home and had a difficult time sleeping) and we enjoyed just hanging out at the pool with them. Kyle is SO close to learning how to swim without his water wings on and was even doing somersaults underwater without any help! David LOVES the zero entry pool since it allows us to just sit and splash rather than fight him in higher waters. Michael and I took turns hanging out with the boys in the different sections of the pool so we can enjoy equal time with both of them. They are both growing up so quickly, especially Kyle. He has learned so much in the past year and matured a lot. He loves his independence!
While I was sad to leave, I was happy to arrive home. To have my whole family (the 2 dogs included) get back into a routine was so nice. And it's always better sleeping in your own bed! So until next year when we go back to SC, I will  treasure the memories we made this year!
And for those who heard the alligator story-we did not bring him home as much as Kyle would have liked to!!!