Tuesday, November 17, 2009

Being a parent is hard...

The great news is that I have finished editing the shoots from Photos for Mito, so after a couple of days of getting all the pics onto CDS, I should have the CDs in the mail by Thursday. Thanks for being so patient, all ye fundraiser participants.
On the medical front, we have a new plan regarding Nate's GI issues on the docket. It has been a taxing battle seeing Nathan's stomach issues rising over the past few months, and we are at our wit's end with trying to get him to gain some weight...and keep it on. It's heartbreaking seeing him retch and vomit each time he is extra tired or even a little sick...and then stop eating entirely for a while. It's draining for us to see him go through it...I can't imagine how it actually feels in his little body.
There is one drug that he has had in the past to help speed up his GI motility, and he responded very well to it. But we had to discontinue it after a while because it is a drug that is potentially toxic to his mitochondria, and the current med that we are using just isn't working the same. Our wonderful GI has been diligent to figure out what we can actually do to help the little guy, and after numerous emails back and forth between her and our mito doc, they have decided to let Nathan try the old motility drug once again. The only catch being that we have to keep close tabs on how the medicine is affecting his mitochondria...meaning that he will need 6 different blood draws within the next month checking to see if his lactic acid is being affected by the med. My heart hurts for the little guy having to go through this. So often in his life, in order for something to help him, he has to be hurt in the process...I hate that. Sometimes it is difficult to accept these circumstances with a good attitude. I just wish I could take all the pain in his place.


Melody on November 17, 2009 at 9:23 PM said...

I am so glad Dr K is going to let you retry the Erythro...it has worked SO well for Nathan and Samuel (Missy's little man) has done really well on it, too. Praying it helps him AND is not harming his mitochondria.

We so need to catch up soon. Seems like it has been ages since we chatted!

Mike on November 17, 2009 at 10:46 PM said...

That is one sweet face! May God direct each decision regarding Nate's care. We're praying for you all.

Heidi on November 18, 2009 at 6:06 AM said...

(((Sorry Amber))) youre right, so many tough decisions we must make for our kiddos. Jack also needs many blooddraws due to the chemo drug he's on, its never easy to see them stuck. I pray Nate's labs show nothing harmful and he can continue taking it.

As you may already know, its the GI stuff we deal with most. Jack didnt tolerate the Erythromycin and had horrible side effects from the Reglan. We've certainly struggled over the years with his motility. Its heartbreaking to watch my little guy holding onto his tummy as I send him off to school. We deal with it as it comes, somedays worse than others...its never easy.

As always, hugs and prayers for your dear boy--

Michelle on November 18, 2009 at 3:24 PM said...

Praying the new drug helps and causes no harm to the mitochondria. It's so hard watching the suffer. God will lead you on His path.

Dana on November 18, 2009 at 3:48 PM said...

I know situations like this must be so difficult! We love you so much and are praying for you! He is such a brave little man, and so are his mommy and daddy!

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