Good News. We went to see the CJ's doc on Monday the 20Th to see about stopping his tube feedings to see if it would encourage his eating, and he said that he thought that it was a great idea. We went over what he is now eating per g-tube and I told him that we planned on feeding him in the morning and at bedtime with nothing in between except a bolus of water periodically. He said it sounded as though we had a well thought out plan and that he probably won't need the water bolus on account that he will probably start also drinking more fluids so we won't have to worry about him dehydrating, he also reminded us how a normal 4 year old eats and to remember it is a weekly total of intake not a daily total.
I want to make sure that we can commit to CJ when we do this so we will not start until the first Saturday in May. That will give me 3 days to get started before I have to go back to work. We were also planning on offering CJ food all day whenever he would eat but the doc said that we would be better off keeping him on a regular normal kid schedule with 2 snacks in between meals and to also keep a food diary.
I am both excited and nervous at the same time. We will also be working with OT at Mercy and we have an appointment with them on Monday to also go over everything. The thought of him not gagging and retching anymore with his meals is so exciting. On mornings that we feed him late there is no retching when he wakes up, but when we feed him on his morning schedule he wakes up retching and will do this for about 45 min. it's horrible and it makes him feel horrible. Please keep CJ in your prayers that he has the strength to overcome the battle that is to come and that he will succeed with leaps and bounds.
Tuesday, April 21, 2009
Friday, April 17, 2009
Getting Creative
Happy Late Easter!! Our Easter was fun. I missed out on the Easter egg coloring this year due to the fact that I had to work (bummer). So needless to say James was very excited to be on dad duty that day. :) I love him so much he is such a great dad. I know he really wanted to be out fishing but he colored eggs instead and did a wonderful job. He was very creative with the eggs and even took pictures and sent them to me via phone so that I would not completely miss it. Well Tax Season is officially over so I am back to my regular schedule and it feels great to know that I won't be working so may hours. With that being said!!!! I have some exciting or what I hope will become exciting news. We have a client that comes into our office and her son was also tube fed like CJ. I always enjoy when she comes in to have her taxes done because it's nice to be able to talk to someone that can relate to your situation and knows what your going through. Well last year her son started eating by mouth (how exciting) but we never really got to talk about how this miracle happened. This year I was determined to find out what she did.
I already knew that we saw the same OT at Mercy since we had ran into each other at previous appointments, but since we were having tests done we had stopped OT until the tests were complete. Naturally after the tests were completed I was exhausted and I guess just accepted that this was how it was going to be and quit going to Mercy for OT. Until I talked with Heather. Now I am excited again and ready to start helping CJ again with his eating. When Heather came in we naturally started talking about our boys and she asked me if I had gotten extreme with his eating?
I was a little surprised with this and just said well we offer him food all the time and have him sit at the table with us whether he eats or not but I don't know if that's extreme or not. She proceeded to tell me that what she meant by that, was to stop tube feeding him. I was shocked to hear her say this because our friends Nate and Amy kinda did this with Kaden when they fed him at night and not during the day he was eating more, so needless to say this got my attention. We had thought about it before but I was afraid to try.
What she did was tube feed him once in the morning and at bedtime then during the day she would bolus him one to two ounces of water every couple of hours to keep him hydrated. She said that within two weeks her son went from not swallowing anything to no more tube feedings at all. And within 3 months he was able to have his mickey removed. I got on the phone immediately and started lining out doctor and OT appointments. Our first appointment is Monday with his regular doc. I want to make sure he is monitored during this so that he doesn't get sick or dehydrated. I am not going to ask the doctors anymore if this will be OK to do, I am going to tell them this is what we are going to do like it or not. I have tried doing it there way and although we have made some progress I believe with all my heart and soul that he wants to eat. I think he is starting to get lazy about eating because he knows that he will just be hooked up and he will have a full belly so why eat real food.
CJ here lately has started eating more. He loves cheese and mushrooms of all foods. He is now chewing and swallowing food quite often and will sometimes eat as many as 6 bites a meal. I think that if he gets hungry he will eat a whole meal. I am really excited and at the same time torn apart about doing this. I made sure I got Heather's phone number this time and I asked her if she would be my support since I guess in a way I will be making my son very hungry. I can already hear him crying and saying he's hungry I know he will have all the food in the world being offered to him but the thought is still horrible. I guess this is what you might call tough love. I am not sure when we will start this, I will let you know what happens on Monday. Wish us luck and keep us in your prayers.
I already knew that we saw the same OT at Mercy since we had ran into each other at previous appointments, but since we were having tests done we had stopped OT until the tests were complete. Naturally after the tests were completed I was exhausted and I guess just accepted that this was how it was going to be and quit going to Mercy for OT. Until I talked with Heather. Now I am excited again and ready to start helping CJ again with his eating. When Heather came in we naturally started talking about our boys and she asked me if I had gotten extreme with his eating?
I was a little surprised with this and just said well we offer him food all the time and have him sit at the table with us whether he eats or not but I don't know if that's extreme or not. She proceeded to tell me that what she meant by that, was to stop tube feeding him. I was shocked to hear her say this because our friends Nate and Amy kinda did this with Kaden when they fed him at night and not during the day he was eating more, so needless to say this got my attention. We had thought about it before but I was afraid to try.
What she did was tube feed him once in the morning and at bedtime then during the day she would bolus him one to two ounces of water every couple of hours to keep him hydrated. She said that within two weeks her son went from not swallowing anything to no more tube feedings at all. And within 3 months he was able to have his mickey removed. I got on the phone immediately and started lining out doctor and OT appointments. Our first appointment is Monday with his regular doc. I want to make sure he is monitored during this so that he doesn't get sick or dehydrated. I am not going to ask the doctors anymore if this will be OK to do, I am going to tell them this is what we are going to do like it or not. I have tried doing it there way and although we have made some progress I believe with all my heart and soul that he wants to eat. I think he is starting to get lazy about eating because he knows that he will just be hooked up and he will have a full belly so why eat real food.
CJ here lately has started eating more. He loves cheese and mushrooms of all foods. He is now chewing and swallowing food quite often and will sometimes eat as many as 6 bites a meal. I think that if he gets hungry he will eat a whole meal. I am really excited and at the same time torn apart about doing this. I made sure I got Heather's phone number this time and I asked her if she would be my support since I guess in a way I will be making my son very hungry. I can already hear him crying and saying he's hungry I know he will have all the food in the world being offered to him but the thought is still horrible. I guess this is what you might call tough love. I am not sure when we will start this, I will let you know what happens on Monday. Wish us luck and keep us in your prayers.
Friday, April 10, 2009
Karate Tournament
I know this is way overdue. The Karate tournament was so much fun. CJ went into this of course not sure of exactly what to expect. It was so cute. As soon as they started explaining how things work and showing everyone all the trophy's he was so excited. He said he was going to get himself one of those trophy's. I was so very proud of him, his first medal was a gold medal and he was so excited it almost made me cry. He came running to me screaming look what I got mom, look what I got take a picture of me. The picture I posted of him holding the medal was his very first medal ever. The gold medal! Just looking at those pictures I can still see the pride of accomplishment in his face. It was so cool to see him get so excited that finally he was winning medals not just his sister. CJ was in 5 events that day and won 3 golds and 2 silver medals. We were so very proud of him. Now the great thing with karate tournaments is that everyone always wins. And with that being said you can take the medals you win and trade up for a trophy or trade your small trophy's for larger trophy's. So needless to say when we asked CJ if he would like to trade his medals in for a trophy he was all for that. So we came home with one gold medal and a 3rd place trophy. It was so cute, when we got home of course we had to clean off a shelf for his trophy's (they also got a small participation trophy). As we were cleaning off the shelf he just kept chatting about how we were going to have to get more shelves because he was planning on winning allot more trophy's. I had to kinda chuckle to myself when he was chatting away. To think that almost 5 years ago the doctors were telling us that they didn't know if he would survive or not, to today, he is running around winning trophy's and medals. He definitely is nothing short of a miracle. I am truly blessed. I am so very proud of you CJ and we will put up as many shelves as you need.
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