Thursday, June 27, 2013

6/26/13

We saw Matt's metabolic doctor today.  I had been looking forward to this appt because my husband had agreed to  go with us and I knew I would get to spend some much needed time with him.  Spending the day with him was nice, even though the appt didn't really give us much.  I was able to pick up Matt's test results so I can give them to another doctor we are wanting to see in Forth Worth. 

The next step is whole exnome sequencing.  Right now insurance is deciding if they will pay for it, if they won't it will be on hold until they decide to pay for it.   Other than that we are at a stand still.  

Matt doesn't have deep tendon reflexes, our metabolic doctor has been able to find them in one spot, at the lowest level.  Today he did Matt's deep tendon reflexes and I could tell in one of his legs he actually had the reflex.  It was kind of exciting.  The thought went through my head, is he getting better?  Is there a chance Matt will out grow all of this and have a healthy life. 

I asked more questions hoping to find out what it means.  I found out he found his reflexes in I think two places and the one was a little stronger but still very low.  

So much for that thought... it was a nice thought though... so full of hope while it lasted. 

Matt's been having a lot of nightmares..  it is awful, I was just now in the shower, when I turned the water off I heard him crying, ran to him soaking wet, he was just in tears.  I hate those moments, I feel so helpless .  He is just so sad, right now he is cuddled in my bed.

Wednesday, June 26, 2013

Nearly wordless Wednesday

Sick. 

We see Matt's metabolic doctor in Austin tomorrow. 

Monday, June 17, 2013

Half Birthday?

I have thought in the past about celebrating half birthdays for Matt.  I have never done it, it feels kind of silly. I was reading a blog post from a mom who went through infertility and pregnancy loss then her first born son was born with a chronic condition that caused him to die young.  She celebrated 1/2 birthdays for him and her typical child.
There was another little girl with a terminal condition that will take her life way to early, her parents celebrate the months.

I don't know what the future holds for Matt.  I don't know if he will have tons of healthy birthdays and I will look back at these unknown times and regret all the worry or if this next birthday will be his last.   I have been told by more that one specialist that Matt's life will most likely be shortened.  No one knows how shortened.  I want to celebrate the times I have with him.

I am still trying to decide.  I don't think I would have  a big party like his actual birthday, but a day to celebrate him, a few presents, decorations, balloons and some family fun centered around Matthew.

What do  you think, totally silly or something nice?

Thursday, June 13, 2013

Moving on.

With encouragement from  a friend I am moving on to doctors that are in other areas.  I am working on seeing doctors in Fort Worth.  I have heard from two people that they have some good specialist especially when it comes to rare diseases.

Fort Worth is father than I thought I would travel, it is awful that I live in one of the largest cities in the US, but specialist are so hard to find.  We see our Austin metabolic doctor in two weeks.  I don't see there being any changes.  He pretty much told me last time that we are at a stand still.  When you are still un-diagnosed standing still with testing is the last thing you want.

Update on Matt.

The last few weeks Matt has had major GI issues.  He hasn't tolerated his feeds. We switched to Neocate with Prebiotics and added miralax again and so far it seems to be helping.  There was one night this weeks where his stomach couldn't tolerate anything, but other than that we are seeing much improvement.  He as down 2 pounds from all the issues, so we are back to weigh ins.

Thursday, June 6, 2013

Nurses

This week I had to have our first nurse stop working for us.  It was a hard decision, one I have been struggling with for weeks.  I know it is the right thing to do for so many reasons, but when you get so attached it is hard to do what is right.

For the last two weeks we had an excellent nurse, she was so great, but since the hours were not there because they were being split with the old nurse she found another job.  :-(  This week I am still longing for her.  I even texted her today telling her I hope her new job works out but if it doesn't to please come back.  She said she is still in training but will keep it in her thought.  I secretly hope she hates her new job and wants to come back and have fun with us.

I know that the first nurse is really hurt, I hate that I had to hurt her.  The biggest problem was when she started I didn't know what I was looking for in a nurse and she became more of a friend then a nurse.  On top of that she went back to school and her hours were so limited and didn't really fit into our schedule, and really won't fit into our schedule this fall.


An update on Matt.

Matt is of course into the regression time of year.  The language is the worst part and even though it has been weeks I still haven't adjusted.  I get frustrated really easy and I hate that.  It is really hard not to be able to understand your child. I so desperately want to know what he is saying.

We also started with a new speech therapist this week, I have mixed emotions about her.  We finally met our PT this week, and I LOVE him!  He is also a PT for our local professional soccer team.  I know Matt is going to LOVE him!