Alex and Maddy

Alex and Maddy

Tuesday, January 17, 2012

A Longer Update

I am going to try and given a more detailed account of our trip to Houston last week.

  We arrived on Monday and had a relaxing afternoon hanging out with with our good friends Nate and Amber from Florida. The boys have not seen each other in a good year and they had so much fun just being boys. I am shocked we didn't get kicked out of the hotel. Alex also managed to teach his younger buddy some not so great habits so hopefully Amber will let the boys play again! Late that afternoon we headed to Joy's house where we met up with all Alex's favorite girls in Houston (Lauren, Riley, Reagan, and Rebecca)! The kids had a blast playing and the mom's had a blast chatting. It is always neat to hang out with a group of other mom's who are used to tubes, oxygen, dr. appts and all the other craziness that is our life!

Tuesday we saw Dr. Navarro first. A few minutes into the appt. he decided he wanted to go ahead and schedule the Pyloric dilation that had been cancelled twice already. We talked a little about when we might be able to try and wean off TPN, but Dr. N really wanted to wait and see what happened after the procedure. We also talked about Alex's continued deficiency of Trace elements and how we could bring those levels up.

We had some time to cut up in the waiting room with Nate and Amber again while we waited for Dr. Koenig's appt. If ever anyone could get kicked out of a Doctor's office for being too crazy it would have been our two boys, who were laughing, yelling, spinning, falling and amusing all the waiting patients. They certainly didn't appear to be two boys waiting for an appt with a life threatening disease, that's for sure! Nate, the consumate Gator, also taught Alex how to Tebow!

We really didn't have much to discuss with Dr. Koenig. We talked a little about the upcoming procedure and spent a short time discussing our genetic results. While we have genetic confirmation that Alex has epilepsy it does not tell us the course his seizures may go. We may never see them get worse or they could progress over time. We just have to wait and see. We also talked about a new medication that Alex will be starting to help his liver. It was recommended by Stanford. We hope to get it going in the next week or so. After this appointment we had lunch with Joy, Riley, Amber and Nate before making a quick trip upstairs to see all our friends on the 9th floor of the hospital! Then it was back to the hotel for an early night!

Wednesday was an early morning as we hurried to the hospital to our 8:15 cardiology appt. I was not happy when we got there and they told me we weren't on the schedule and they couldn't fit us in. Those of you who know me know I am super organized bordering on anal and would not confuse an appt time! Added to the fact that this is the same doctor who cancelled 5 times in a row last year and I was not a happy camper. I have decided to switch Alex's cardiology care to a more reliable Doctor! With no appt to attend we headed towards the hospital to meet up with anesthesia clinic. On the way we ran into our beloved surgeon who offered to be in the OR during Alex's dilation the following morning to help if necessary. We are so blessed with a medical team who work well together and love Alex. After our anesthesia appt we once again met up with Nate and Amber to get in some fun time before our last appt of the day. After lunch we had a follow-up with our ENT. He was really happy with the way Alex's ears look and his hearing was perfect. I love going to an appt and getting all good news! ENT still once to see us every 6 months, but I don't mind an easy appt now and then.

Wednesday was our much anticipated sleepover at the Knight's . Alex couldn't wait to get there and play with Lauren. The kids had fun. Us mom's were up way to late as usual. Nothing really changes at our home away from home.

Thursday was procedure day. I was so proud of Alex. He is normally absolutely panicked about anesthesia. We have known about this procedure and Alex and Dr. Kristy have spent some time talking about it. I also talked to him quite a bit. He handled himself better then i ever expected. While he was still nervous, he didn't panic and didn't cry. It helped that we had our very favorite anesthsiologist. I was nervous because I wasn't sure what was going to come of it. There were a few scenarios as he headed into the OR. Luckily, for us things went as well as we could have hoped for and they were able to dilate the pylorus without having to do "true surgery". Alex was back to me less then 2 hours after I left him. My sweet boy was zonked and took quite a while to wake up!

Friday morning we clamped his gtube and stopped draining his stomach for the first time in almost 4 years. We all held our breath and then were cautiously optomistic as several hours passed without incident. We started feeds very slowly around noon and gradually increased them. Alex ran several temperatures and we talked as a team and decided to just watch him. Saturday he continued to do okay, but his belly became visibly distended throughout the day. Sunday we were discharged and headed home.

So where does this leave be honest I am not sure. Alex continues to not drain his stomach and is not nauseaus however his stomach is extremely distended. For now we continue to wait and watch. If things continue to go well we will talk about weaning his TPN in the next few weeks. In the meantime, I am praying my boy continues to tolerate not draining and is not scared to say if he has had enough.

I think that about sums it up! We have a busy few months coming up again. We will be in Houston the first week of February, March, and April! February 4th is our annual Energy for Life Walkathon. Many of you have supported us in the past. We are so thankful for that support. If you are interested in supporting us again or walking with us please go to the following link: We have seen firsthand this year the amazing things that research can do! Thank you for all the love you show to our family.

Friday, January 13, 2012

Up & Down Day

Today has been up and down all day! But let me back up to yesterday. Alex went to the OR around 9:30. Everything went as well as we could have hoped for. They were able to dilate his pylorus to the Max recommended. He took a while to wake up, but was not in any pain. He went to sleep early last night and we woke to less output then usual...a great sign. We clamped his ferrell bag this morning for the first time in years and so far hehas tolerated it well. Unfortunately he wassitting on the cusps of a fever all day and has tipped the scale tonight. We are waiting to see whether we are going to start antibiotics. We restarted feeds around lunchtime at 10 cc's an hour. The hopeis to increase later tonight. I will try and update again tomorrow. Ali

Tuesday, January 10, 2012

Quick update

This will be short as I didn't bring a computer with me! We had appts with Dr. Navarro and Dr. Koenig today. Dr. Navarro is going to do a procedure on Thursday to try and get Alex's stomach to empty. Right now it empties about 10%. He loses a liter of fluid a day from his stomach into his farrell (drainage) bag. The hope is that if we could get his stomach to empty even partially, we maybe able to wean off TPN.Alex will be admitted after the procedure for several days. We are hoping to be home early next week. I will update more on the appts later.

Thursday, January 5, 2012

No News is Good News

I figure by now you must know if I'm not blogging things are ok! We had a very nice Christmas! Mimi and PopPop were here and it was a quiet relaxed week. Alex is so funny about Christmas. I have never met another child like him. He doesn't rip through all his presents like most kids. It takes us HOURS to open gifts as he opens one thing and wants to play with it before he moves on. It is usually with lots of encouraging that he eventually moves on to something else. It really does make it enjoyable to see how much he loves and appreciates each gift!
Alex a few days before Christmas

Alex and his nurse, Theresa

Alex and Mimi

Alex and Hayley

Acting Silly on Christmas Eve

With Mimi on Christmas Eve

Looking through his Stocking

Opening Presents

We were happy to have Mimi and PopPop for a few days after Christmas. We made a quick trip to San Antonio, toured the Texas Motor Speedway and enjoyed each others company. Once they left it was back to school. Alex has been doing an incredible job for me over the last month. He really thrives when we are home for extended periods and that is reflected in his behavior and temperment.

My poor boy had a few hard days emotionally last week as he was once again missing his buddy, Samuel. It caught me completely off guard and made for a hard few days for me as well. We decided to write Samuel a note and send it to Heaven. Alex seems to be feeling better since then.

We always treasure our times surrounded by friends and we have been fortunate to see our playgroup twice in the last week. Alex was so excited to ring in the New Year (well a few hours early) with his best buddies. We enjoyed dinner and dessert. Not sure if we adults enjoyed it more or the kids as we let them sit at their own table! Then yesterday we finally had everyone healthy to have our playgroup Christmas party. I don't know that I will ever be able to express how important these friendships are to both me and Alex. Playgroup is like our rock and it really does keep us steady when the waters are rough.

Let's see what else....Monday we made one final trip to Six Flags as it was closing for a few months. Reflecting on how far Alex came in his bravery over the season was crazy. Rides he was petrified of a few months ago are now counted among favorites. We can't wait to see what he conquers next year. Multiple times Bruce and I have looked at each other and said that the money we spent on our season passes is some of the best money we spent all year. We more then got our money worth and had some awesome family time in the process.

Last night, I was happy to once again head to church for Wednesday Night Life. One of my good friends is doing a study for women and I decided I needed to do something for myself. I left church feeling so uplifted and encouraged. Alex loved his class and can't wait to go back. I am praying his little immune system and all of our interventions will allow him to stay healthy so we can enjoy this time of fellowship.

We are heading to Houston next Week for 4 appointments. It should be rather routine, but you never know.

We ask that you pray for safe travels and for my sweet boys heart as he struggles with feelings of "not being normal".  I pray that you, our family and friends have a year that is blessed with much health and happiness.