Wednesday, May 13, 2009

Processing so much info at one time...

I feel like this week has been a major information overload. You all know how that goes. I started out the busy week not really thinking much of what was going on for my family and just trying to remember who had what going on what day. You know how that goes. So here it is... only wednesday and I feel like I have have been a little blind-sided. Don't get me wrong, we didn't have anything horrible happen, but when you think you know how things are going and then it goes a different direction, it takes you a while to process.

So the week started out with an upper GI test at Primary's for my little Josh. They are going to put in a G tube since his NG tube is causing all sorts of fun problems. While there for the test, I happened to have a wonderful radiologist doing his test. He explained everything going on through the test and what he was seeing. I was just assuming everything would come back completely normal. So he starts talking about how much reflux he is seeing and asking how well Josh tolerates feedings. I told him his history and he is still on meds. He tells me then that Josh was refluxing every single time he did whatever thing he was doing. So he pulls the NG tube out of his stomach area and continues on. Now he refluxes half the time. When I was leaving I remember thinking.. "OK, so his reflux is NOT gone and is worse than I thought." Then tuesday rolls around and the Dietician through the Feeding Clinic at Primary's calls me with some results. She tells me that Dr. O'Gorman (the GI dr) will have to look at his results still, but she thinks that as well as placing the G tube, Josh will need the Nissan (sorry if I am mispelling it) procedure done as well. She tells me that instead of what we thought was going to be an outpatient procedure, will have to be an inpatient surgery if they go forward with that. With all that I have going on with just Josh alone, a hospital stay was not in my plans. I was totally caught off gaurd with that.

Then today comes and we go back down to PCMC for an appt with his neurologist. There wasn't any earthshattering news there, but sometimes it's hard to hear everything negative at once. The Dr. is amazing and I love how he is compasionate about Josh, but yet tells me straightforward how it is. We know he has Sensory Integration Disorder, Dyspraxia, Apraxia of Speech, all his feeding problems... the list goes on. But he told me that we are not realizing the effect that microcephaly plays in all this. Microcephaly is the root problem and everything stems from that. So we can't just assume that he is like other kids with SID. It kind of compounds the problem a bit. He just told me that we can't expect a time that Josh will 'catch up' to his age. We need to remember that although he is making progress and will continue... there is no cure and there is no magic 'getting better'. None of this is a surprise, we already knew that. But I think with all that is going on with Josh lately, I haven't really stepped back and thought about the big picture. Some times I look at other kids his age and think... will be so great when Josh is just like them. And I have to remind myself that he is going to be who HE is, and that is OK. Some days this can all be so overwhelming and you have to remember to take it one day at a time. I just seemed to have forgotten that lately and was trying to live in fast forward mode I think.

I think that as parents of special needs kids we walk a fine line of wanting our kids to be completely normal and accepted and realizing they are different. It's a daily battle that I don't think ever gets easier, just more easy to deal with (in a way). I have had to really remind myself of these things and keep on going.


Happy in Holland said...

Thanks for your post. I lot of the things you are feeling, I feel too. I don't really have advice for you, but I want to say thanks for sharing and putting your emotions out there, because it is nice to know that I can relate to someone. Hang in there!

Jessica said...

Melissa I have to say Jonah getting the Nissan SDurgery was THE BEST THING FOR HIM!!! I have seen this kid change in so many ways since the surgery in September. He stoped refluxing for the most part, and he started to actually get a little bit better! Since the surg ha has started to babble, crawl and do much better respiratory wise. I know that little josh has different health issues but when a child does not have to deal with this other yucky stuff they can follow there bodies lead, and stop being held back and start there journey forward. Please give me a call if for any reason you are doubting this. I know how it feels, I offten thought how are the docs letting me make this decision, I dont know any thing about anything, but i felt it in my heart and I went with those mama bear feelings.

tiptoe mama said...

It's super late at night, and I'm only operating on half a brain, so I don't have much of a comment, but what you said is all so true, and something I relate to so well. Thanks. I hope all goes well with the surgery.

hayngrl101 said...

I love reading your posts on this board. Your comments really hit home for me today and so I thank you. You are so right about wanting our kids to function normally and be accepted... and then having to deal daily with accepting the path that they will travel apart from our typical kids. Amazing.

My daughter had a G-tube and it truly became our Best Friend because the reflux issues were curtailed. One thing that I liked about it was that you could not see the tube on her face anymore... so there were fewer stares.

We also had the Nissen done a few times as well. It really helped with her failur to thrive and she was able to grow afterward.

I agree wholeheartedly with Jessica- it was the best thing we did for her and we have no regrets. It will be ok.

Not having unpleasant episodes (reflux) going on will help him to get better at other things... like talking or eating regular food over time. Hugs to you.