Thursday, May 2, 2013

Still a mystery...

This week we went to see a speech pathologist who is a feeding specialist with Texas Children's Hospital. She was really great and really seems to "know her stuff". She made lots of suggestions and we go back to see her in two weeks for a follow up, at which time she will see if she can fit him into her schedule and what exactly the game plan will be. One thing she suggested was seeing an allergist to see of he has an intolerance to milk and certain foods. I told her I would check with our GI who we saw today. I wasn't completely sold on the idea that he has any allergies because he doesn't seem to have any symptoms like he did when he did have some sensitivity to foods. However, at this point we are open to anything and everything. Fast forward to today.

Today we saw our GI doctor, as usual I had a slew of questions for her. She is such an amazing doctor and sat and talked with us for quite a while. We touched on the allergy issue and she doesn't necessarily think it's not a milk intolerance but she doesn't think that is the underlying issue. The inflammation found in his lower stomach region was apparently pretty severe and the path she took from it was read by an extremely seasoned pathologist. The pathologist was perplexed as to what was causing the inflammation and didn't think it was consistent with allergies. He thinks we need to see an immunologist as this could be some kind of immune type of problem. So that is our next stop, to see the immunologist/allergist. They will do a few tests of their own and hopefully be able to see if they can find anything. After talking with the GI, we also know that we will be re doing the gastric emptying scan again in about a month. Since Tucker seemed to have some sort of virus during the first one it's not really valid. They need to know more precisely just how delayed his stomach is. They will also likely do another endoscopy procedure to check on the inflammation in about 3 months or so.

 We have also decided to go ahead and get the g-tube for tucker. This means he will have to have surgery to put it in. We go for our surgery consult in a little over a week and we set a date from there. We have skated around this issue and gone back and forth, but after lots of praying, researching and gathering opinions, it is the best option for us at this time. Realistically we know it is going to take tucker a little while to get enough of what he needs by mouth so we are going to do what we need to. I feel like God is giving me peace about it and I know its the right thing. Surgery seems so scary but from what I understand the recovery time isn't too long and once he gets used to it, it will definitely be less invasive than having a tube in his nose. Speaking of, we had his tube replaced by the sweet nurses today and hopefully it will be the last time before his surgery.

So that is about what's going on with our precious tucker at the moment, still a mystery. On a positive note, he is much more active and happy and is now swallowing small pieces of food such as crushed graham crackers, crushed goldfish and his faves: mini m&m's and chocolate chips. He still has lots of anxiety around people he is not used to and especially any doctor or nurse who may be around. I'm the only person who can soothe him and the only person he ever wants to hold him etc. I of course love my sweet boy, but it makes it hard to take a break:) Every once in a while he is ok hanging out with his daddy:) This whole journey has been extremely trying for all of us, but I feel like God is really teaching me so much through it. My faith is definitely getting stronger. I try to stay positive and when I try to take control, I have to try and remember to trust in God and remember who is truly in control:)

We still have quite a road ahead but I feel like we are on the right path. The most important thing is that Tucker is consistently gaining weight and height and seems so much more like his happy old self again. His muscle strength is coming back and hopefully he will start walking soon! We have been so blessed by so many great doctors, nurses, specialists, therapists etc, so  I know we are in good hands. Thank you all for your thoughts and prayers, we appreciate every one and they are all very much needed:) Please continue to pray for our tough little man! I will continue to post updates and will post more about the surgery when I have the information.

Hope all have a blessed weekend! Thanks for stopping by:)

Love and Blessings,

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It's a yes!

It's a yes!
how it all began...