Tuesday, June 20, 2006
THE GOOD, THE BAD, AND THE UGLY
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!