Tuesday, June 20, 2006


Grammy Suzanne arrived this morning, and we are so excited to have her here!!! And she was very impressed with Maxwell's progress since her last visit. It will be fun to have her with us for Max's birthday on Thursday and his party on Saturday. :) Thanks Grammy!

Then another extra special treat today was a visit from our friend Cameron, his brother Nathan and mom Rebecca. I met Rebecca through the CHARGE list and they came to visit us during Max's stay in the hospital, and Cameron (a four year old with CHARGE) was such an inspiration! He didn't have all the medical issues that Max has been dealt, but I still have hope that Max can do as well as Cameron is doing. That would be such a miracle! He is considered a "highly functional" CHARGEr...and also absolutely adorable! :) He let me hold him for awhile and he was just as snuggly as Maxwell! And along with some help from his mom, he even taught me a few signs. Soooooo cute! I love how determined he is. Like Max and many other CHARGE kiddos, he lacks a normal vestibular system that provides balance but that doesn't stop Cameron! He showed me all of his "boo boos" from all his run ins with the pavement, furniture, etc.

They are coming to Bellingham again on Saturday to celebrate Max's birthday. Thanks Anderson family! (And thanks for the monkey napkins...absolutely perfect!) We feel so blessed to have you as friends! :) And I am counting on Cameron to keep his promise to help teach Max how to eat and how to walk!!!

Another GOOD is that Maxwell gained weight again this week! YAY! He is now 15 pounds, 2 ounces. Woo hoo! My doctor was teasing me that it sounded like I won the lottery when I looked at the scale. Lots of whooping and hollering!! :)

Max went to the doctor's today and sure enough the nose is narrowing so they are putting a call into the ENT to get the procedure scheduled. However, we have to postpone anything until his latest cold clears. They won't do anything if Max is even slightly ill due to possible respiratory complications. We made some changes in his meds to see if that will help. So far no major temp, but lots of coughing, sneezing, wheezing, vomiting...the works. Poor lil' guy.

So I was so happy after our visit with Cameron and his family...and feeling so hopeful about Max's future.

However, then I check my email and I get yet another frustrating, hopeless email from my soon to be ex who actually has the nerve to say he is "sick and tired of my whining." What??? Basically I had asked him last week to come up with some ideas on how we are going to handle this situation. I (along with all my doctors and therapists) keep emphasizing to him that I cannot work because I am Max's full time caregiver/nurse/therapist, but he doesn't seem to get it. If I am providing for 100% of Max's physical needs, shouldn't he be responsible for the financial needs? I would love to be continuing my career and be financially independent from him, but that simply is not an option right now because of Max's health and developmental needs. That is not "whining"...that is just stating the facts.

The bottom line is that he didn't come up with any reasonable solutions and he immediately rejected any of my ideas, so we now have to wait for the judge to intervene. (One option he actually had the nerve to include was a "loan" to me while I stayed home to take care of our son and his special needs...yes you read that correctly, he said he would "loan" me money.)

How pathetic that my ex's involvement and responsibility in Maxwell's life will be determined by a judge, instead of voluntarily by himself. Oh well. Just a few more weeks...and hopefully we will have some closure.

* That's all for today...the good, the bad and the ugly. I think I will stay focused on the GOOD. I loved our special visitors and I definitely enjoyed Max's weight gain! Hopefully tonight we both get some sleep and he wakes up refreshed and ready to go. I will definitely try and post some new photos tomorrow...I have been taking them like crazy!


ang said...

Enjoy Grammy..How fun and exciting.

Sorry to read about the nose..We see Dr. Perkins next month with both kids now.

And as for the ex..The guy has a screw loose somewhere..He needs to take a class on compromising. Or maybe his consituants can teach him that one!

kathryn biel said...

Cannot wait to see the birthday pictures--will be thinking of you both tomorrow!! You have had an incredible year and deserve to party your pants off (so Max, get well and stay well!!).

Try to ignore the ugliness for now and celebrate all that YOU have accomplished this past year.

Best wishes, Kate

Mark and Jaye said...

Congrats on the weight gain!! YAY! Have fun with your Grammy Max! NOTHING like Grammy love mixed in with all that mommy love you get!

Perhaps your ex needs a loan! Of some brains and compassion! I wish I lived in WV...It would sure make my voting decision easier as I'd have one less choice on my mind! :)

Hang in there Amy! WA loves you and Max!!

kate said...

So proud of how far Max has come in this past year. He is amazing. And SO glad that Grammy is there to help Max celebrate his big day!! We love you both, hang in there.

Love, Kate and family

Drew said...

Congratulations on the weight gain buddy, and I'm sorry you have to go through another nose procedure. I'm sure you'll get through it like champ as you always do.

And um, don't you have to have money to loan money??!! I thought he was arguing there wasn't enough to go around. If he has the money to "loan" you, he has the money to pay for his responsibilities. I think he just helped you in your arguments in court.


ang said...

Oh Drew!!!


Steph said...

Yeah Maxwell! LOVE to hear about the weight gain!!! And how fun to have Grammy Suzanne with you to celebrate your special day!

Amy and Maxwell, what a year! I agree with Kate...this week in particular is a time to celebrate both of your incredible accomplishments. You two are an awesome team! No one can stand in the way of your progress together.


Steph said...

And now I'll post on the ugly.

Vic Sprouse is disgusting. He needs intensive therapy, or a brain/heart transplant. Better yet, he should be neutered. Seriously.

A LOAN?!?!?!? For real?!?!?!? To pay for therapy and care for HIS child?!?!?!?!?!? After everything HE has done?!?!?!?!?


kanda said...

Let me guess, has Mr. Sprouse or his lawyer suggested you put Max in an institution and get on with your life? To forget about him as he is trying so desperately to do? It wouldn't surprise me in the least. So much for his example of Republican family values.

Max deserves to be in his mommy's care, even more so than a child without challenges. Hopefully you will get a young judge who does not remember the "convenience" of the past practice of automatically institutionalizing special needs babies. An older judge who was part of the era of warehousing the disabled would not be good.

One thing you could do is actually price out how much it would cost to have daytime specialized nursing care for Max so you could work, and how much more expensive that might be than your being home with Max. Either way Mr. Sprouse has to pay.

You are in our prayers.

Moriah (zandysmom) said...

First, GOOOOOO Max!!!! Yeah on his big weight gain!! Sorry about the nose, I know it was not until Alex was like 5 that his nose stayed open. :(. That is just such a hard area to heal w/o strictures!

Okay... what a SCUM! Yes, SCUM of the Earth. He'll loan you money to care for the child that he was 50% responsible for creating? Maybe you should offer to loan him a brain.

(((HUGS))) to you Amy and I'm sure he's reading this so I'll throw an "F You, Vic Scum" his way ;)

Lori said...

Wow-- so much news! The "good" is great (I know all-too-well the struggles with weight gain; Isabel can be a little slow-poke, too!)!!!

The "bad" was unfortunately anticipated, and the "ugly" is... well... just that. But, really, I'd say more "sad" than ugly. Vic doesn't realize that he's missing out on something great-- a chance to be Max's FATHER. Like you've always said, Amy, "... babies choose their parents," and, Vic was "chosen" whether he likes it or not. He should count himself lucky and should be willing to give Max the moon-- if having the moon would make things better! Oh, I pray that Vic would have a change of heart. Max is so great, and I know that there will come a time when Vic will be so sad that he is missing out....

We will continue to pray for you all-- we won't stop until we get some answers!


love to you all--

elle said...

hey you no that american leeful injections allways on our aussie news y not give that to ur ex then take all the money that ther when he dies yep i love that idea

Mary Karr said...

Mommy will have her camera out today so you will have lots of smiling to do.
Love you, Mary

Cedie L Mock said...

HAPPY BIRTHDAY MAX!!!!!! Cedie and I will be thinking of you today!

Also, Amy, it was great talking with you yesterday. Thanks for the advice. It is comforting to be able to have someone to talk to that is actually dealing with the same issues as Cedie and me.