Thursday, June 15, 2006


We went to the doctor's yesterday to get a weight on Max and FINALLY we got some good news! My lil' man gained 10 ounces in the last few weeks, which brings him to a solid 14 pounds, 10 ounces. GO MAX GO! We have been really working on this issue...but having to be pretty careful as to not overload his lungs and heart with too much fluid. (He still is on several diuretics to help with this issue too.)

He still is only wearing 3 - 6 month clothing size, but perhaps before you know it...he just might move on to the next size! We have been in this category for a looooooong time, so that will be fun.

After his appointment, he was still doing pretty good so we made a quick stop at the Gap to take advantage of some gift certificates he received for his birthday. (And they were having some great sales so it was perfect timing!) Wow, wait until you see him in his new clothes! He is getting to look like such a big boy. He officially has his first pair of jeans, and his lil' baby butt looks soooo cute in them! :)

But of course I received many confused looks from cashiers and fellow shoppers when they asked how old he was but then they noticed what size I was buying. (We are still in the "newborn" section.) I just quickly explained that he has a "few medical issues." Yep, just a few. One was a new mom and I didn't want to stress her with all that "could" happen to a need to add to her worry list.

I will try and post some photos this week of Max sporting his new ensembles...super, super, super cute! :)

Tuesday, June 13, 2006


Today a wonderful new friend, Lori and her adorable three daughters, came over to help plan Maxwell's birthday party! How sweet is that! We are taking off on the "funky monkey" theme! Thanks Lori and gang!!! I am so excited...and once Max woke up, he was excited too!

If you have not yet received an invite but would like to come to Max's party, please send me an email I might not have your address and that is why you haven't received an invite. :)

The party is Saturday, June 24th from 2 - 4 p.m. Look forward to seeing you all there!!! I cannot believe he is going to be a year old! WOW!


I didn't think it was possible to love Mighty Maxwell anymore...but these past few days I feel like my heart might just burst! How amazing is this lil' man??? (Didn't you just want to eat him up in that picture of him in the Bumbo seat?)

These past few days I have been caught several times totally kissing all over him in public. Yesterday we were waiting for a prescription refill at the pharmacy and several people were commenting..."hmm, someone loves their baby!" (Then once they saw the oxygen we engaged in a 20 minute discussion on CHARGE, etc. I love educating the public about his disorder...the more information the better.) Then we were getting our tire fixed, and once again I was kissing him and telling him how gorgeous he is, how much I love him, etc...and sure enough, I was busted again! What is funny is that I make sure to talk extra loud for Max so that he hears me, but I forget that in public that means everyone else can hear me too!!! A little embarrassing, but who cares!!! :) He deserves all the attention in the world!

He has been smiling for me and giggling (a silent giggle, but I hear it just fine!) when I tickle his sides...and we just laugh and laugh. He works sooooo hard for the tiniest of milestones, but what a victorious feeling it is when that milestone is reached! Despite a disappointing PT session on Monday (Max was showing our PT how much he simply despises tummy time and insisting on being his "floppy" self), we have had two wonderful sessions at home today. He was really trying this morning and I was very satisfied with his progress. I am sooooooo excited about him being able to sit up someday. What fun it will be!!!

Yep, that's all I wanted to say...just wanted to brag about my beautiful baby. His cuteness, determination and "uniqueness" is simply amazing! :)

Gotta go...I think someone needs to be reminded how gorgeous, terrific, handsome, perfect, incredible he is!!! And he most certainly needs some can never have enough mommy love! :)

Monday, June 12, 2006


Seriously, could I be ANY cuter??? I was totally hamming it up for Mom and she was loving every minute of it! Everyone was so impressed how strongly I responded to Mom and her camera!!! I had everyone cheering! And look at me working so hard to hold my head up in my Bumbo seat. I am making progress...slowly but surely! YAY ME! :)


Here are just a few highlights from my trip to WV...more to come!!!
Silly Mommy! But I must admit I do enjoy her funny songs and games! :)

Grandma Mary, you are awesome! :) I so loved our special time together! And I know you are trying very hard to get my attention with that party toy, but I am NOT giving up my new dragon!!!
I absolutely LOVE Papa and especially his mustache!

Cuddling with Stephanie (one of my absolute favorite people in the world) is sooo wonderful! She is going to be such a wonderful mommy...Mommy and I are VERY excited for you and Drew! :) Oh and look again who I have in my new favorite toy courtesy of Aunt Meredith!

Here's my crazy Uncle David making me work! C'mon David, give a kid a break. It takes a lot of energy to hold my head up AND reach for the toys! (But Mommy actually said it is "good therapy" and she always makes me work hard too!!!) Thanks Uncle David for the extra "therapy" and for being my Godparent! AND I soooo love your little boy Davey...he's fun!

Sunday, June 11, 2006


Maxwell's Godparents are Elizabeth and Jim (my sister and brother in law) and my brother David. Thomas's Godparents are Stephanie, Meredith and Bennett.

Maxwell handled the baptism very calmly. And there were many "oohs and aahs" when he so tenderly reached for the minister's face after he was baptized. So sweet!
So proud of lil' miracle guy!


We arrived back in Bellingham on Friday and are enjoying the comforts of sweet home...especially seeing our dogs, Barney & Shakespeare AND the mild, non humid weather of the Pacific NW! :)

However, we were sad to say goodbye to family and friends, and I will definitely miss Grandma Mary's help with Maxwell! She was great with helping comfort him, prepare his feeds, medications, monitor his oxygen, etc...certainly helps to have an ICU nurse in the family! A special thank you too to Dad "Papa" for all of your help with the hearing. It was so wonderful to have you there with me that day providing that needed encouragement and strength. Thank you for everything.

And Max and I are quite bummed that we had to cancel some of our plans for this weekend with friends in Charleston...I would have loved for you to have spent more time with Mighty Max. I promise we will find a way in the near future!!!

Our original plan was to stay until early next week but over the past week, Max was doing some odd things with his breathing. It was quite labored and despite multiple attempts at suctioning and various inhalers, it continued...periodically during the day and night. So I thought it was best to bring him home and have him close to his doctors in case something were to worsen. Then in the past few days he started to have issues with his feeds (vomiting, diarrhea) so I think we made the right choice.

The little bugger is still on east coast time, which is a little annoying! He was up at 4 am this morning ready to go! So yet another night of mommy only getting about three hours of sleep...he doesn't seem to get this notion of me needing sleep too!!! :)

I will try and post birthday photos today! I have received multiple requests....sorry for the delay! :) We have LOTS and LOTS and LOTS of photos!!! :) I will have to choose a few favorites!

*On a different note, I'm not sure what to do about the blog during the remainder of this divorce. I would like to believe my soon to be ex and his attorney visit this blog and other CHARGE sites to truly get to know Maxwell and learn about CHARGE and Max's specific challenges so that we can work together and find a solution best for our baby. However, last week I learned that definitely is not the case. They are doing so for ulterior motives and that is unfortunate...and quite frankly, that really irritates me. Feels like such an intrusion into our personal space.

It's strange to think that I started this blog last year to simply keep a few friends and family members updated...who would have thought so many people around the world would tune in to Max's story and that this blog would become such an "issue" in our hearing! The power of the internet is unbelievable.

And to the CHARGE families, I posted on the list serv what the attorney said to me...I think you will be just as offended as I was/am and understand what we are up against in this hearing. His ignorant words will not be forgotten anytime soon.

But we'll see. If I do decide to not post until after the divorce hearing, feel free to contact me directly! I definitely want to keep anyone updated who is interested! :)