Life Never Works out the Way You Plan.

Hi all.  I know it’s been a while since I’ve written anything.  I just get so focused on everything else around me that I forget to sit down and catch everyone up on what’s been going on with Noah. My last post was a week before Halloween and to be honest it doesn’t feel like that long ago.  This whole year has flown by, as a matter of fact!! Recently, the whole family has been sick (and still getting over it completely) and one sickness right after another!  First it was the stomach bug, then pink eye, and now we all have this lingering cough that refuses to go away.  HATE being sick and HATE that it continues to linger in this house!  I’m so ready to be sick free—for all of us! 
Anyway, back to Noah.  The first time my daughter got sick, around the beginning of November, Noah ended up catching the stomach bug that she had.  However, Noah couldn’t fight it off as well and ended up in the hospital (November 7) for 7 days to stay hydrated.  He had refused to eat or drink and lost 2 pounds in 2 days so ending up in the hospital was the best thing to do until he could begin to fight off the virus.  It was supposed to be just an overnight visit to get him rehydrated but they didn’t like that he refused to eat and wanted his weight back up before they released him so my husband and I took turns and stayed with Noah for the next 7 days until he finally started feeling better.  I was so worried.  I kept thinking, “Why can he not fight this off?”  Isabella was over it in 2 days but for Noah, it was much harder to do that.  It also made me wonder if whatever Noah has that is causing his developmental delays is also causing him to have a lower immune system to fight off infections and then it made me worry that if a stomach bug did this, what would something like the flu do?  It scares me!!! 
The only other thing to tell you guys about is that we are STILL waiting to know what Noah has.  In an earlier post, I mentioned that Noah does have a mutated gene.  That, we are aware of but we don’t know why or what that means just yet.  We were supposed to find out on November 27 the results of the skin biopsy that was done six weeks prior.   Although we don’t have a diagnosis, we were leaning toward Lowe Syndrome.  That visit was the biggest waste of time and both my husband and I were upset afterward for several reasons.  1) This was supposed to be the visit that told us the results of the skin biopsy and not only did we not have that, but the genetics doctor didn’t know why we were there.  2)  After telling him we were supposed to be there for results, he proceeded to go on about everything we already knew up until this point and went on and on and on and on.  3)  When we asked WHEN we might know, he just said, “These things take time.”  Yeah, we got that, which is why we waited 6 weeks and YOU scheduled us to come back on this date to find out the results and now he’s saying “Come back in 3 months.”  WHAT?!?!?  4)  He not only interrupted my husband about something random on multiple occasions when Jeremiah would try to ask a question but he also offended me by saying “Now mama, I know you want this to be Lowe but we just aren’t sure that’s really what it may be.”  Um, excuse me?  I WANT this to be Lowe?  I don’t want ANYTHING to be wrong with my son.  
What upset me the most is that I am the one that got us to this point.  No doctors were doing tests to find out anything until I brought it up and said I noticed things just weren’t right with Noah.  I ended up doing some research and Noah fit some of the characteristics of Lowe and I wanted him tested.  For nothing else that at least to rule it out and say I was wrong.  I would LOVE that!!  I have NEVER said I wanted this to be Lowe, nor have I “diagnosed” him with it, as this jerk doctor also mentioned.  I have only said this syndrome fit Noah so test him.  I don’t want my son to have Lowe.  If he did, that means his kidneys could fail and he could die an early age, so no doc, I DON’T want my son to have Lowe, nor have I gone around and said he does have this syndrome.  It’s just the only one I’ve seen that made sense.  
Two hours later, after the biggest waste of our time, we left the doctor’s office with no answers or even a possibility of when we’ll know anything regarding Noah.  I’ve already made an appointment to see another Geneticist.   We are done with this doctor and his sarcastic comments and trying to help our son, which he hasn’t done.  I could go on more about this doctor but I won’t.  I’ve told you what bothered me most and that’s enough. 
So, we’re still waiting to know anything.  We go to Texas Children’s Hospital in March to see the new Geneticist.  I know it’s a long wait but the other doc said we’d be waiting about that long anyway.  We might as well see someone new in the process that may actually help us so that we can give our son the best care possible. 
Other than that, Noah still continues to be the happiest boy he can possibly be.  He turns 17 months on December 8.  He has made progress with his occupational therapy and his physical therapy.  He can stand on his own, with the help of something to hold onto.  He still isn’t crawling but he may just skip that altogether.  He likes to stand.  He gets so excited every time we practice that.  The only other concern is his eating habits.  We still have trouble getting him to eat solids and he’s mainly on Pediasure so he can get the nutrients he needs and continue to gain weight.  We also still have issues with his bowel movements too but I won’t go into detail there.  I’ll spare you that.  :) 
Noah is such a sweet boy.  He’ll get there eventually with everything he’s behind on.  I know it.  We just want to know what he has so we know how to care for him the best way we know how.  Please continue to keep us in your prayers and especially for Noah that he continues to get the top-notch care he needs so he can continue to thrive. 
Stay in the moment folks, Jenna