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May 25, 2003
5.25.04
After nearly 5hrs of waiting to see Sean's surgeon, we are home and have the framework of a plan for Sean's esophagus. Of course this took all of 3minutes to discuss. So after almost 5 hrs and $20-parking and lunch-here is the frame work.
Ken and I will discuss if we want to move forward with the plan, email the surgeon, set the date if we decide to go ahead.
1.Let the Prevacid work one more month.
2. take down the stomach wrap, make the stomach longer, by stapling the stomach.
3. Put in J-tube besides having the g-tube. The j-tube goes into the small intestine that is call the jeu..... can't remember how to spell it off hand.
4. Have a back up plan if this doesn't work. The back up plan would be long and short term issues.
5. Part of the back up plan-replace esophagus with a section of colon. Go from there with another plan.
SO this is it. I think we are going to go ahead and do the extension and see how things play out. Our surgeon said the time has come to move on to other things for Sean.
I mentioned I was having a hard time with this since Sean has always been able to eat just about anything and now he can't without choking. I feel for him and it has really put a damper on meal times for all of us. Sean is eating less of foods he use to love, but he doesn't because he knows it will get stuck. Today his beloved fries got stuck and he had a time to wash things down. He made the comment about not being able to eat them anymore. My heart just breaks for this little guy. BUT despite the eating of less, he is gaining and growing! We try hard to make those calories count for him and I am so glad we have the g-tube to use at night and to dump in some stuff during the day.
As I was sitting in this very crowded waiting room, he was back logged since being gone 3wks, I was watching all the people there as I was dealing with my boys. I must say my boys were very well behaved for a change!
I was the only white person there. That doesn't bother me at all. I wish I knew spanish! There were teen parents there with their children that just broke my heart. It is hard enough to be a young teen mom as it is, but to have a special needs child on top of it, WOW! As the crowds dwindled, this one teen mom and her mother were speaking spanish to the other spanish speaking parents. I didn't understand what they were saying, but I knew it was about what was wrong with their children. The mother of this teen mom was in tears as she spoke about her grandson, who was in severe pain and was about 8mos old. He will NEVER walk, talk or anything while here on earth. It was very hard for them to talk, but I know it did them some good. I wish I could have comforted her in her language, but I could only by my smile of "I understand."
There was another Spanish speaking mother there who had a son who was in the teen years- I am guessing. He has Down syndrome. I have a very special place in my heart for those who are DS. My stepbrother has DS and I love him dearly. I have worked with DS and there are a few at Sean's preschool, who I could just bring home. I thought of that while we were waiting. I stopped myself after I thought that and asked myself, could I really raise a DS child? Yes I could. Could Ken? Oh yes! he also has a special place in his heart for them. It would be a challenge and hard, but we would and could do it. We have considered adopting a DS child in the future. Perhaps a girl since we have plenty boys, but another boy would be fine.
One of the little girls with DS in Sean's room is not really accepted by her parents. Ken and I have offered to adopt her and they have considered it. So far they are not ready, but we would if they said yes. SO we wait. I really love this little girl and I have built a relationship with her since she started preschool with sean. The teachers all know how much I love her. Ken was taken by her and it made him upset when he saw the neglect and how her parents were not accepting of her. he is actually the one who offered without talking to me. But that was fine. He knew how I felt.
The past 5yrs haven't been a walk in the park and I am sure the next 15 won't be either. However, I wouldn't trade them for all the money in the world! I have been so blessed by having Sean in my life. Even with the days of not knowing what is going to happen or how I will deal with something new with Sean, I am glad I have him in my life. I know there are parents who think otherwise and I feel for them. BUT we walk in the presence of Angels when we are with special needs children. Instead of seeing the bad things of it, we need to see the good of it.
I am not thrilled to have to have a million trips a week to the hospital or to see my child suffer. Things for us could be tons worse and I am glad they are not. My boys hate Drs appts for Sean. They dislike spending 5hrs waiting and waiting with nothing to do. I bring books and things, but after 5hrs, they are old. I dislike the hospital stays and surgeries. The mixing of medications and ER trips. I hate that we have to cancel our vacation this year, like every year for Sean. There are tons of things we sacrifice all the time for Sean. BUT I would not have it any other way. Some families have more than one due to genetics. My heart goes out to them as my hat goes off to them! yet all the while, our government provides less and less for these families to make it in the world. Who are the heros of the world?! The parents of special needs children! I am not putting myself up, but those mothers and fathers around me. Lives and dreams are given up to provide for these children. Who is going to help them? My family and IL's don't help much. In fact rarely. More and more of our friends are helping. I have learned not to wait for someone to offer help, but I have to ask, which is very hard for me. I have a friend, the one who watched the boys for Ken's birthday date, who is always there. 20yrs ago, we didn't get along, but now, I couldn't get along without her. (one long sentence)
if you know of a friend who is the parent of a special needs child, offer to help her out. She/he/they might not realize how much they need it. You will be blessed for doing so!
Before I go, Sean started OT at a new center last week. I love it! They are including Daniel and Peter in the therapy as a way to get Sean to do more and other things. It gives Dan and Peter something to do instead of tearing up the waiting room and driving me crazy. They are so friendly and I can see an improvement in Sean's attitude towards doing things he hates to do. So.. things are looking up there. Oh, they wll also send a monthly report to Sean's Dr about his progress. Our Pediatrician is thrilled since the old place would not do it even when he would request it.
Our Pediatrician praised me for getting all the stuff in his IEP. I can't take all the credit. The school district was more than willing to do whatever we wanted and then some. : )
Now to wait for our hand surgeon appt in June and to decide yes or no on the surgery.
Have a wonderful week!
Shelly
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