BIG DISAPPOINTMENT

Max and I have been excited all week in anticipation of our CHARGE family get together this weekend in Seattle. A group of us are trying to form a statewide organization as part of the CHARGE foundation. No one else quite "gets it" like another CHARGE parent and we have all gained enormous strength, understanding and love from one another.

So today was our first official get together. But this is one group you don't want to bring germs to, and what do you know? Yep, Max caught another bug.

The past few days I have noticed that Max was a little more congested and coughing. But last night that took a turn for the worse and was experiencing episodes of tachypnea (rapid respiratory rate). We counted him at 80-100 breaths a minute (while sleeping!) several times throughout the night. He is lethargic today but not miserable and his breathing seems slightly more at baseline, so I am just planning on keeping a close eye on him. He definitely isn't feeling great and on top of that, he got four shots yesterday. Eeks. But what a trooper! He cried for a minute, and with a quick snuggle, he was over it.

So unfortunately we couldn't attend today's get together and we were seriously disappointed! I was sooooooooooooooooo excited about having all of our amazing CHARGE kiddos together and having the opportunity to talk with all the parents. We are planning another event in the fall so maybe I will quarantine Max the month before to ensure he is healthy enough to attend!

HEARING

This morning Max had his weekly therapy appointment with his speech pathologist and later today we meet with his/our sign language teacher. I have really been working with him on a few key signs but little progress has been made thus far unfortunately. It is a bit frustrating. His cousin Thomas learned "more" and "milk" within days, but Max and I have been working on it for weeks and weeks. I know, I know...every kid is different but I just wonder if/when Max will ever really get the hang of sign language. I am not discouraged, but more confused on how this will all come together. As my therapists often remind me, language (oral and sign) involves many complex skills and Max is just not to that level quite yet. But we'll keep trying, that's for sure. Practice, practice...and more practice! Actually his therapist today was very encouraged with how quickly he responds to me with a happy dance. I dance and then he dances...good "imitation" (another developmental milestone). She thought it was a great sign of communication response...so YAY MAX! And YAY for fun happy dances!

She brought several books for me to read about children and deafness...looking forward to learning more about this issue. I want to help him as much as possible.

On Monday, we have a hearing test scheduled at Children's. He has had several BAER tests during his stay in the hospital. Those are performed while he is sleeping/sedated and measures the brain's response to sound. This test will actually test Max's behavior response to sound. Should be interesting! The past few days his response hasn't been great and he has been itching at his ear a lot, so I am concerned he possibly has another ear infection (common in CHARGErs because of the abnormalities). I scheduled an appointment with his PCP for tomorrow, because if he does have an infection we will need to cancel his tests.

PHOTOS, PHOTOS, PHOTOS!!! :)

Mom wants me to play with these lentils as part of my "sensory" therapy. I was a little hesitant at first (they felt kind of funny!), but with a little encouragement, I was ok with it.

Hey if therapy involves getting my photo taken, I'm all for it. CHEESE!!!

Here I am at my big desk...she keeps putting things on there and I keep trying to take them off. I like a clean work space!

Honestly how ADORABLE am I? Mom was trying to deal with the insurance companies while I was playing in my exersaucer. As you can see, I kept distracting her with my cute smile!

It was WAY too hot! Yikes! The temp was record breaking and we don't have AC (not usually needed in the Pacific NW). Usually Mom can't let me be naked because I like to pull out my Gtube, but she had no choice this night!!!

Nothing like being hot and sweaty and getting tangled up in your cords! All night Mom has to keep untangling me. Sorry Mom, once I got the hang of this rolling thing, I can't stop...even when I am sleeping!

OVERALL MEDICAL UPDATE

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 cute...it 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!!! :)

TOM TOM'S BIRTHDAY PARTY!

Mom and I thought we'd give you a few highlights from Thomas's birthday party. We had so much fun!

Love, Mighty Max

Cousin Tom Tom went to town on his birthday cake! Can't wait until I can do that too! Looks like FUN!!! :)

I might not be able to eat cake, but I can always snack on the Beyerlin twins!!! Here I'm giving Alison a good ol' "Max Attack!"

And Sarah's nose is yum yum...perfect chew toy!

Last but not least...getting snuggles from Mama Beyerlin! What a family! :)

Sara, you're so crazy! Mom and I love ya! :)

Thanks Kristy for loving me so much!!!

AND GOD SAID "NO"

Max and I have enjoyed many special visitors this past week...so wonderful! I absolutely love to show off my miracle man! I promise to post photos soon.

Our Sunday included a very special guest from our stay at Children's. Remember Jacob? He was the cute lil' guy that was at the hospital with Maxwell. After eight months of struggling with complications due to his prematurity, Jacob passed away the day before Max's heart surgery. His discharge was only two weeks away, so his death was quite sudden and unexpected.

Thea (his wonderful mommy) and I have kept in touch and she is always cheering on Maxwell and his accomplishments. We talked and talked...and of course many tears were shed as we reminisced our son's traumatic yet courageous battles with their health issues.

Thank you Thea for making the long drive and for the super cute present! You are a good friend and I am blessed to have you in our lives!

Thea shared this poem with us and I wanted to share with you. It really touched my heart.


And God Said "NO"

I asked God to take away my pride,
And God said "No".
He said it was not for him to take away,
But for me to give up,
I asked God to make my handicapped child whole,
And God said "No".
He said his spirit is whole,
His body is only temporary.
I asked God to give me patience,
And God said "No".
He said that patience is a byproduct of tribulation.
It isn't granted, it's earned.
I asked God to give me happiness,
And God said "No".
He said that He gives us blessings;
Happiness is up to me.
I asked God to spare me pain.
And God said "No".
He said that suffering draws you apart from worldly cares
And brings you closer to me.
I asked God to make my spirit grow,
And God said "No".
He said I must grow on my own,
But He will prune me to make me fruitful.
I asked God if he loves me,
And God said "Yes".
He gave me His only son who died for me.
And I will be in Heaven someday because I believe.
I asked God to help me love others,
As much as he loves me.
And God said,
"Ah, finally you have the idea".