First I wanted to thank you all for your comments on my last post! We went to the GI doc. on friday and she confirmed that Malachi will be needing a g-tube. She wants us to have it done sooner rather than later, so we will most likely be having it done within the next few weeks. I am feeling better about it, but still fearful of the unknown. How long does it take to do a feed? What happens if and when he pulls it out (I dont believe we are opting for a button, but we have 2 months to decide that before then can put one in anyway)? The biggest issue I am having it that our Speech Therapist quit so now we are back on a wait list till they hire a new one who will work with feeding issues also. I do not want to put a feeding tube in only to wait for someone to be able to work with us and Malachi on skills to build that muscle. I dont want him to forget how to suck/swallow while we wait. There has to be a plan in place before I am willing to do it. I didn't have a chance to talk to anyone on friday about this issue so I will be addressing it tomorrow. Ugh, this is totally now where I though I would find myself, but here we are and I will try to make the best of it. Malachi is getting a g-tube and I think I am okay with it (for the momment).
Malachi had his first b-day party this weekend. It went WONDERFUL. We had perfect weather and amazing friends and family there to celebrate with us! Malachi got a TON of gifts (which were not necessary but he will enjoy playing with all of it) and spent time in the arms of his biggest cheerleaders! Malachi is a loved boy and that was obvious by the 50-60 people at out house. The kids (and adults) got to swim and Josh and I actually got to relax some (thanks to our best friendns Steph, Amanda and Will). It was a fun party and one we will remember forever.
On a more exciting note we got our computer back!!! I will be posting more often and able to share pictures eaiser! Well we are off to clean and then to another b-day pary for our neighbor!
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3 comments:
You should definitly have a speech therapist work with him so he doesn't lose that skill. Depending how they put the g-tube in, sometimes the put a tube in and 6 weeks later they switch it to the button. The button is better because you can hide it easier. If it comes out you can put it back in or carry a spare with you. They will teach you all of that stuff, and soon you will be a pro. I also carry an emergency kit with me so if it comes out I have everything with me to put a new one in.
I agree with Lacey. I would be adamant (sp?) about the whole feeding/speech therapy thing. Use us as an example and make sure they do this. Although, from what I have seen of the therapy system in Chicago area, they have a different mindset from down here and this usually shouldn't be a problem.
One note on the button vs. tube thing. I guess we were just weird, but I always preferred the tube over a button (not that Christopher could have a button anyway - long story). We were able to snake his tube through a onsie and not have to put holes in clothes, etc. This was just our preference - not a guide. You should talk to your GI once his tube is in and you are used to things. They might not want to keep a tube in - one GI told us that they don't usually leave tubes because the weight of the tubing, etc can stretch the stoma. You and your GI will have to decide the right choice for you. The only thing we have really had to put holes in were footie pj's. Sometimes, when they are little, you can find some that snap. Those are great.
I will PM you our numbers. Feel free to call me anytime. Hugs!
Steph and Christopher
Making the best of it is all you can do. I am so glad he had a great birthday! Have a wonderful week. You have a great attitude!!
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