Saturday, March 18, 2006


Max had a fairly restless night. He is not in terrible pain, but he is certainly isn't very comfortable. He still is running a fever, and I believe he has an ear infection as well. With their ear "malformations," ear infections are very common with CHARGErs so yesterday when he started grabbing his ear a lot, my heart sank. Here we go...I have heard those are quite painful and VERY reoccuring. So we will probably be heading to the doctor's office again today for a checkup on that.

We'll see what today brings...

Friday, March 17, 2006


Max is still not feeling well. I am relieved that the problem is indeed a "bug" and not a malfunction of his Gtube and Nissen, but I am so sad to see Max so sad! He has a low grade fever (100) the last two days and he is coughing like crazy with all the extra secretions.

I have had to suction his nose (doesn't drain like a "normal" nose, so I have to "drain" it for him) numerous times, and we both despise that process....but you do what you gotta do (that's what I try and remind him during the suctioning!). Max is getting so much bigger and stronger that I feel like I am in a boxing match when I am trying to suction him. He swings at my hands and grabs the tubes like's frustrating but quite funny too!

He is slowly being reintroduced to the fortified breast milk, and fortunately the vomited has not returned. Hopefully by tomorrow he can be back to full feeds and not have too much of a setback with his weight.

He is quite lethargic but hanging in there. Quite a trooper he is. :)

Today we got the dreaded call about our home nursing...we are being cut off next week. I knew it would happen soon but we were hoping to get out of the flu season first. I have no idea how I am going to handle all of his care on my's difficult enough some days when we do have a nurse at night. And now I will be doing that care and coordination on little sleep...should be interesting. I know that we will find a way (there is no other choice!) but I am quite nervous. Not sure what I am going to do.

Thursday, March 16, 2006


Max has caught a stomach virus...we think. But unfortunately he is giving mixed messages, so we are not sure at this time if he is not feeling well OR there is a "mechanical error," i.e. the Nissen coming undone. has not been a very good 12 hours to say the least.

It started last night...he was acting very fussy and it wasn't the usual tired cry, it was that of pain. While I was holding him and trying to comfort him, he vomited and then I noticed his abdomen felt hard and bloated. Venting him did not work, so finally I just decided to completely remove his Gtube to provide some relief. That opened up another can of worms because upon removal, I noticed fresh blood in that area. I'm glad I have developed a strong stomach because there were many, many "bodily fluids" going on.

The vomited continued throughout the night but the majority of it was mucous. Sorry for all the details everyone, but welcome to Max's world!!!

So I have talked to several of the "professionals" involved and we are now in the "wait and see" mode to see if this vomiting stops. We have stopped his feeds completely and now just giving Pedialyte to prevent dehydration.

It is never good for a child to vomit, but it is even scarier with a baby with a gtube and one with weak lungs. 1) When a baby is fed via a Gtube, they cannot tell you when they are feeling dehydrated and need more to drink. You as the caregiver must "guesstimate." 2) Every time he vomits, we must worry about aspiration.

We'll see. I am actually hoping it is a bug, because if it is a mechanical misfunction of the Gtube/Nissen, that will require surgery...and we DEFINITELY don't want that unless absolutely necessary.

I just feel sooooo bad for him when he is not feeling well. It just breaks my heart. Fortunately he has had a month of really no major "problems" and it is has been sooo wonderful to have stability. "Stability"...such a magical word in the special needs community!!!

Just yesterday we were at his doctors for the weekly checkup and we were both cheering each other on about how great it is that he has stayed out of the hospital. AND we were delighted with the recent weight gain...he is now 14 pounds, 5 ounces. He had really slowed down for a few weeks and that was worrisome. So we were all really happy to see him putting some weight back on.

And I also was talking with the nursing agency yesterday (always the fear of having nursing cut by insurance) and the coordinator said sweet Max is one of the very few little kiddos under their watch that has not had to go back in to the she said, whatever you are doing, keep doing. Thanks Jodi! :) (She is also an avid Mighty Max blog reader!)

I will keep you posted...but for now please keep him in your thoughts.

And also, I wanted to ask that everyone keep a special lil' girl in your prayers. Her name is Bella and she was recently born to a friend of a friend. She was born with some serious special needs and their family is struggling to understand the "who, what, why" and it tears my heart apart. Quite honestly, it brings me back to last summer when we were learning all that was "wrong" with Max and it was so incredibly scary. Please keep Miss Bella and her family in your thoughts and prayers...give them peace, comfort and strength as they face this challenge.

Thank you everyone! We have such an incredible prayer network via this blog and I deeply appreciate your help!!!

Monday, March 13, 2006


Hello everyone! It's sweet lil' Max here to wish you a great day! :) And to make your day even better, here are some super cute photos of me from the last few days!

I know, I know...I am absolutely delicious! My smile melts my mommy's heart a million times a day!

My nurse and mommy caught me smiling at my own reflection this morning! They thought that was just way too cute and funny!

Here I am with one of my hearing specialists. She is fitting me for a new set of ear molds. The "pink stuff" goes into my ear soft and then it hardens after a few minutes. (It's really cool!) She then pulls it out and sends it to the lab to make my molds. Because I am such a little guy, I am growing out of my molds all the time so I am getting pretty used to this routine!

Here I am with my Uncle Bennett! He is teasing me that I stink! I just had a major blow out on him and he almost threw up...Mom was laughing and laughing! She tried to teach him how to change a diaper, but that didn't work very well!

I love making messes! Today I even covered mom's face with baby carrots! I am still only taking the tinest of tiny amounts (size of a few peas), but we are delighted to be able to do any at all!

This is my VERY favorite toy and I never let go of it...even when sleeping!

I have recently decided that I love this vibrating fun! And of course there is my favorite toy as always!!!