Wednesday, July 26, 2006


Overall Maxwell is doing really well! He has recovered from his latest virus and seems to be getting stronger every day. There have been a few "glitches" the past few days but hopefully none of them turn out to be anything of significance. My gut is they will not.

He started coughing and gagging again last night and has vomited a few times. Today I had a tank top on, and I was holding him and all of a sudden I feel wetness down my back. It took me a second, but then I realized that was his vomit trailing down my shoulder blade! And then another time today I found a little on my neck from an earlier episode. Sounds gross but quite honestly it didn't bother me one bit! :)

Then last night and a few times today, he needed more oxygen than usual. That usually means something is brewing in his lungs. What I am worried is if he perhaps aspirated because I have been really working with him on oral feeding. Still just little tastes here and there, but I have to push him beyond our comfort zone if we want to make progress. Scary but necessary. And he soooo wants to try...he grabs the spoon every time! I cannot believe how well he is overcoming his oral aversion. Absolutely amazing! His OT is very, very excited...said our work is definitely paying off! YAY MAX! We have another swallow study at Children's on Monday and I want him to be as ready as possible. Hopefully we will get good news! I know there will be several years of dealing with the Gtube and feeding trials, but boy oh boy it would be exciting to see him eating orally someday. WOW! I just got so excited thinking of sharing a pizza with him or enjoying a fun breakfast together. Ok I have the biggest smile on my face right now just imagining that day!!!

Lastly, his "twitches" have returned and there were a few "zoning out" periods during our OT session yesterday. That caught her attention too. Hmmm...Maxwell, what is going on in that brain of yours??? I know it is working overtime trying to catch up with everybody, but is there anything wrong up there? Oh how I wish he could tell me. Several people have noticed recently thinking it is so appears that he is simply nodding with them. But it definitely is not intentional. We'll see. If it continues another week, I am going to talk with our doc about another EEG. For now, I will just wait and see.

We did make it to playgroup on Monday, which was great. And only a few kiddos were there so Max got a lot of attention from all the therapists. They are very impressed with the progress he is making. He is MUCH more active, alert and aware...and wow does everyone just loves his crazy rolling! Too cute!

Max is going to need his meds soon, so I best run. Love to all of Max's fan club!!!

*I met two more people (complete strangers) this week who say they read his blog every day and prayer for him each and every night. That made my day! Thank you everyone for your love and support of my lil' miracle man...he truly is AMAZING!!! :)


Lori said...

I'd have to say that I've become somewhat of a "Max Update" addict.... Do you plan to offer a 12-step program for us some day???
Max, you're just too darn cute, and your mommy is such a great journalist! :0
love to you both--

Anonymous said...

Yeah Amy,
Great news that you are publishing. Glad to hear your little trooper is on the mend. Much love to you.

Jaime said...

Hi. I read your blog everyday too. I am originally from Charleston, WV, and currently live in PA. I stumbled across the site one day, and now cannot stop reading about it! You have such a little, beautiful miracle on your hands, and I just wanted to say God bless you for all that you have gone through. You are an AMAZINGLY strong woman, and Max is very LUCKY to have you as his mom!

Dylan (and Kristy) said...

Congrats on Max's progress and I'm so upset we didn't make it to playgroup this last week. We will honestly be there at the same time soon....I hope!!

Let us know how the swallow study goes and have a safe trip to Seattle! We will miss you.

Kristy and Dylan

elle said...

dont know if you read about mine ask them to see when ;you have his done if it goes down the airwavys if it does then he is aspirating hugs ellen

elle said...

dont know if you read about mine ask them to see when ;you have his done if it goes down the airwavys if it does then he is aspirating hugs ellen