MARCH OF DIMES WALK

Today Max and I headed to Seattle to participate in the March of Dimes walk. It was a tremendous turnout and great showing of support for babies facing prematurity and birth defects!

We wanted to show our support for the cause (Max was two months early in addition to having CHARGE) and also to honor a wonderful family and their baby who we met during our stay at Children's. Their beautiful son, Jacob, passed away at nine months old due to complications of prematurity. He was born at just 28 weeks old.

I reminded Jacob's mommy that Max has promised me that he will not only live up to my expectations but he intends to live up to hers as well...and he thinks that will be possible because he will have a special guardian angel, Mr. Jacob, guiding him. He intends to educate everyone around him about kiddos like him and Jacob...and hopefully make this world a better place!!! :) And I promise to be his cheerleader every step of the way!

Some "Team Jacob" members after the event

Maxwell exhausted after such a long day!

MIGHTY MAX'S 10 MONTH BIRTHDAY

Tomorrow Max will be 10 months old...WOW! My how time flies! :) It's been the shortest yet longest year of my entire life...definitely the most eventful!

And on June 22, Max will be ONE year old! I am so excited to throw him a birthday bash and celebrate his amazing victory. That day will also be a great celebration of him being home and finally beating out the six months he spent in the hospital.

It's amazing to think that 6 or 7 months ago we weren't sure if Max would ever reach his first birthday. It seemed as though his body was shutting down and the situation was not looking too promising. There are different studies of life expectancy for CHARGE kiddos...but the two most common report that 20 - 40% of them pass away in the first year, especially those with choanal atresia and heart defects. Max had BOTH of those life threatening conditions.

So this little man we call "MIGHTY MAX" is certainly a miracle...he has surpassed the odds in so many ways and hopefully will continue to do so! I feel confident that he will!

Happy 10 months Maxwell! :)

GRAMMY'S HERE!!!

Grammy Suzanne is here, Grammy Suzanne is here! YAY!

We have been soooo excited for her arrival and to show off the tremendous progress of all three boys! Especially Mr. Maxwell! :)

I literally was counting down the hours today until I was to pick her up! She was definitely blown away by the new and improved Max. Should be a very fun week and it will be nice to have some extra help!

MISCELLANEOUS UPDATES

EEG
His EEG for his possible seizures is next week, not this week. But I am feeling better about the whole issue...my mommy's gut instinct is telling me it's not seizures, but more like a "tic" behavior. We'll see.

OXYGEN
He has been OFF of oxygen during the day for a week now...yes you read that correctly!!! It truly is unbelievable!!! However, the past few nights he has required more O2 but that isn't too surprising considering the condition of his lungs and how shallow he breathes at night.

What is a little frustrating is that during the day, it is difficult to get an accurate reading on his oximeter because he is always moving his foot which sets off the monitor...so it is constantly beeping and so each time I have to think, "is that real, is he ok?"

HOME NURSING
We are in a "weaning" process right now. This week and next I have about two nights covered and then we are totally done.

HEARING AIDES
Today we finally received Max's latest set of ear molds for his hearing aides. One side fits pretty well and was able to stay in for several hours tonight without too much feedback. However his "floppy" CHARGE ear just doesn't want to accept an aide and unfortunately that is his really weak side. Quite frustrating! These are brand new molds and the one already doesn't fit correctly. I am trying so hard in this area but we don't seem to be making much progress.

THERAPY
Max is working very, very hard on strengthening his neck and upper body. He was doing really well a few weeks ago but then took a few steps back...and now finally appears to be moving forward again. He prefers to lift his head slightly and then just throw himself over to the side so he can get off his belly. He is very insistent on this actually!

Our living room is beginning to look like a therapy jungle gym...we have nearly every therapy toy and unit that you could possibly imagine. I like to think the more variety the better! But it certainly is quite a comical sight!

SPEECH THERAPY
This is an area in which Max has recently made some significant gains! So exciting! He is using his voice more and more...I love it, I love it, I love it! We talk back and forth all the time! It was very strange when he first started "talking" because I would be out of the room and hear him in speaker (baby monitors) and think "what is that???" I would walk in and Max would be talking to his foot. So funny!!! I so much want to beat the "verbal" challenge of CHARGE. I am determined to give him every advantage in this area.

FEEDING
Oh how we are trying! I am making a renewed effort to really push this issue but still keep it enjoyable for Maxwell...but that is quite a fine line! He pushes his tongue out a lot during eating, which makes it difficult, but his OT and I think it may be because of his extremely high palate...not sure. We try this at least once a day (basically just tasting and playing) and he does seem to enjoy it. I make sure to keep it very fun with laughing, tickling, and getting messy with food. Max loves to take the spoon and just play and play. At least he is accepting of the "process." I like to think we are making progress. :)

SUPPORT GROUP
I attended my first Parent 2 Parent support group meeting this week. It was ok but I was really hoping to meet more local parents of special needs babies...most parents had older children. Fortunately I get immense support from my CHARGE groups, not sure what I do without that bond! There is an international list serv and several of us parents in WA state have formed a statewide group. I connect very well with these women...just wish we all lived closer so we could help each other out more! :) Next summer is the international CHARGE conference which I definitely will be attending. I hope to learn A LOT and connect with all these parents who have provided me an incredible amount of love, support and advice these past ten months.

AND JUST ME!
I finally, finally took the time to go get a haircut. I know that sounds silly to post, but literally I have only had my hair cut once in the past year...just have totally forgotten about it! Wow does motherhood change your priorities or what? :) So I was very proud and excited that I finally made an appointment and I actually got a "new do" which I really like! And most importantly, Max approved! Upon my return he gave me a "Max Attack" and pulled me closer with my hair and then nibbled on my nose. What was funny is that Eliz and Jim were watching Max while I was gone and Eliz said that Max got totally confused and thought she was me...he smiled really big for her and tried to give her a Max Attack. She said it was very obvious he was thinking it was me. (And she was also very impressed with the strength of his grip!!!) Her baby confuses us too sometimes! Quite funny!

That's all for now...lots and lots of updates! :)

PHOTOS!

GORGEOUS, JUST GORGEOUS!!! :)

(I have been waiting forever for Maxwell to fit into this adorable jumper...and yay, it finally fits!!!)

Are these not the most beautiful flowers??? Thanks Kirs for the super nice birthday gift...they bloomed just in time for Easter! Perfect! :) And yes we already polished off the Easter baskets of goodies Kim and Kirs!!! Thanks!!!

I recently put his tray on his swing and he is just starting to enjoy it. With his low muscle tone, he still has to be sitting back a bit...but at least this encourages him to reach and better work his arms.

Just like his mommy, Max enjoys a self portrait now and then (with a little help)!!! Hey OU girls, does this remind you of anyone???

DIFFICULT DOCTOR'S APPOINTMENT

Our recent doctor's visit was quite difficult...not just medically (the "head shape" issue and possible seizures) but emotionally.

This appointment was Max's nine month well visit, and the receptionist gave me a "developmental checklist" to fill out about Maxwell. As soon as I took it, I knew this was going to be challenging to complete. Do I really want to point out every single one of Max's delays? Do I need to be reminded just how far delayed he is? Do I want to know all the things he is supposed to be doing? Nope. Nope. Nope. But I thought well they told me to complete it, so I will.

So I am filling that out and a nurse comes in. Our primary nurse was not there yet, so this nurse was getting us started. (Our nurse that we see every week is absolutely wonderful and adores Maxwell...and the feeling is mutual!) Well this nurse was perfectly nice but apparently she had not reviewed Max's file before she came in....which was quite frustrating. I was already emotional because I was responding "no" to nearly every question in the developmental checklist. But then she started asking me questions as though Max was the normal run of the mill healthy child..."am I still breastfeeding, how many times a day does he eat," etc. Then she was asking if I had any concerns with Maxwell. ANY CONCERNS? When is there not a concern with Maxwell???

My eyes were tearing up but I didn't want to lose it...so I was really trying to keep it together and just give simple answers to these very random questions. Fortunately our primary nurse came in right at that moment...and she was soooo wonderful about it all. She immediately took the form from me and said not to worry about filling that out and then gave me a big hug. She proceeded to give me a pep talk about the job I am doing as Max's mother and that Max will achieve 100% of his potential with me by his side. What I loved about that was she didn't fake it and say, "oh Max will be great...don't worry." No, she was honest and said it perfectly..."Max will reach 100% of HIS potential" and that is all we can ask for.

POSSIBLE SEIZURES

I wasn't ready to talk about this last week...but many of you have asked and so I thought I should provide an update.

The "nodding" that I noticed last week did in fact concern my PCP. As soon as he witnessed one of the episodes, he immediately said we needed to get neurology involved and have an EEG on Maxwell.

This is probably the only test Max has not yet required...and trust me, he has had a zillion! This is one that I was hoping he would never require because that would mean there are no neurological concerns. But I am quickly learning in CHARGEland that just about anything and everything can be "quirky" with our kiddos. It is a very, very, very, very (did I mention VERY???) challenging genetic disorder. Every day I learn more and more about what can go wrong...it is quite intense and scary. Once he overcomes the medical issues, he faces many developmental and behavioral issues. It just doesn't seem "fair" that one disorder can impact nearly every component of one's body and mind.

I am doing my best to focus on the here and now and applaud and celebrate Max's achievements each day. However, it is difficult at times to look into the future. Fortunately, Max's smile has the magical power of melting away worries...and he seems to know just when to use that power! :)

So anyway, Max has an EEG scheduled for this Tuesday, and then I will meet with the neurologist to discuss the results and treatment. This could be seizures, tics, or just another random "quirk" of CHARGE. It certainly is worrisome, but I am trying to keep my cool until the results are in.

EASTER GREETINGS

Happy Easter from mommy and me! :)

We hope this blessed Easter brings everyone renewed faith, hope and love. PLUS, we hope this silly photo of me as the "Bunny Baby" brings you a great big smile! :) ENJOY! Hope everyone has a wonderful day with family and friends!

Much Love, MIGHTY Max :)