MY PURELL HAT

Still not feeling very well...I am quite the sad and grumpy little boy today.

Mommy *tried* to entertain me with lots of funny games but nothing seemed to do the trick for very long. Tonight she tried on this Purell hat and I must admit, it was pretty funny. I even gave her a little smile.

She thought I might like to wear the Purell hat too.

Nope, I thought it was much better on her head.

C'mon Mom, give a sick kiddo a break. Nice try, but no more Purell hats today, ok?

*If you haven't tried the Purell wipes, they are absolutely fantastic...so handy. We go through them like crazy!

ANOTHER CHARGER

The link below is a story about Alex, a four month old CHARGEr...very similar medical conditions to Maxwell. He had a very close call yesterday. His grandmother is very active on our listserv and filled us in on the situation this morning.

I have often written about the risk of aspiration and that is exactly what happened here. Alex was being fed through his Gtube (no Nissen yet) and all was well. His mom left the room for a moment and returned to her baby turning blue. He was refluxing and then aspirating into his lungs. The surgeons are wanting to move forward with the Nissen once he is stabilized.

What a terribly frightening moment for Alex and his mom. My heart aches for them.

Please keep baby Alex in your prayers as he has been intubated and remains in critical condition.

www.mailtribune.com/archive/
2006/1130/local/stories/save_a_baby.htm

VERY ROUGH NIGHT

What a night, what a night.

Maxwell was crying and vomiting all night and most of the morning. And even now he still is not himself...lots of whimpering off and on.

Not sure what is going on with him. All week he has been having a difficult time sleeping peacefully. He is really congested and coughing a lot...that usually leads to waking up, gagging and then vomiting...and more vomiting.

Then if I do manage to get him back to sleep, I try and put his oxygen and oximeter probe back on him and he wakes him and the cycle starts all over again. No one wants to wake a sleeping baby, but it is necessary when your kiddo requires O2 and monitoring. That part is so frustrating! Last night I pretty much passed out for about an hour after I got him to sleep after one of his vomiting episodes. When I woke up, I realized I had forgotten to put his probe back on. I felt terrible. But fortunately he did have plenty of O2 on and I think all was ok.

I can't seem to get him to keep anything down last night or this morning. The surgeon said removing his stomach contents when he starts to vomit is the best option to avoid him aspirating. (We are doing everything possible to avoid redoing the Nissen surgery.) So I have been doing A LOT of that the past few nights. But the trick is you need to get it back in, otherwise his electrolytes will be all off. This morning I tried to give him just one 10 ml syringe and he immediately vomited it back up. The past few days his room has been filled with random amounts of stomach content syringes. Gross, I know...but that's our world some days! :)

This morning nothing would ease his discomfort so I gave him a bath (also to remove the vomit odor from the lil' man!) and that helped for awhile. But sure enough, a few minutes later another vomit.

I'm going to take him to the doctor today, but I'm not sure what he can do for us at this point. I certainly don't want him in the hospital.

As soon as we get a call back from him (hopefully he can see Maxwell soon), we will venture on the roads for the first time in four days. My brother in law (thanks Jim) took care of my sidewalk and driveway yesterday, and now I am thawing out my car. (Over 18 inches!) I'm a little nervous about the ice on the roads, but I think it should be ok.

I am HOPING our nurse can make it tonight. It's been four nights of little sleep and I am craving some good ZZZ's.

EXTRA COSTS + INABILITY TO WORK = POVERTY AND DEBT

I received this latest information in our ARC Newsletter.

In addition to the daily physical and emotional struggles that a special needs family endures, the financial burden can be simply overwhelming. The extra expenses and the need for a full time caregiver, who handles the medical and developmental issues, certainly have a major financial impact.

I must admit these statistics frighten me as I look ahead to the future. I imagine the financial statistics for single parent households with a special needs child are much worse. I know I will make it work somehow, but it certainly will be an uphill battle!

• It costs 3 times as much to raise a child with a disability compared to a child without a disability.
  
  
• Only 16% of mothers who have a child with a disability work (full or part time) compared to 61% of all mothers.
  Caregivers are unable to work due to intensive care requirements of their child. Appropriate, trained childcare is lacking or cost prohibitive.
  
  
• 55% of families who have a child with a disability live in poverty.
  
  
• 84% of families who have a child with a disability are in debt (compared to 47% of all households).
  

* Statistics provided by the WA State Department of Health and American Association of People with Disabilities

CONGRATS DYLAN AND EVA!!!

Two of Maxwell's friends have great news! :)

Eva, a sweet 19 month old girl with CHARGE, has made such improvement with her feeding that she may have her Gtube removed early next year! WOW EVA! Way to go! :)

Dylan, a super handsome and VERY charming lil' man with Down's Syndrome, had an echocardiogram on Monday and got some incredibly fantastic news!!! No surgery in the near future! WOO HOO! Dylan had open heart surgery last year when he was four months old (that is when we met his family) and there were still some remaining issues that needed monitoring. However, those issues are stable and he doesn't even need to see his cardiologist for another year! WOW! WOW! WOW! This boy is absolutely amazing and we just love him and his family!

SUPER CUTE PHOTOS AND BIG ACCOMPLISHMENT!

These photos are from last week (notice the scenery change outside)....forgot to post with Thanksgiving and all. So much to report about Maxwell that sometimes I forget some pretty exciting moments! :)

Max decided to stand (on his own!) in his bed! What a shock that was to see...so exciting! And also a good reminder to move down his mattress, which I did that afternoon! This was a major accomplishment for Maxwell in so many ways. Go Max Go!

Yesterday, he took this accomplishment a step further and got into the standing position all on his own (with the help of his favorite block toy). AMAZING! He was sitting and then I looked over a few minutes later and he was standing. He did it all by himself! :) Then he managed to sit down again WITHOUT falling. That's another major accomplishment. Usually he falls and takes down the block with him.



Wow, there's a whole world out there. Wonder if I can climb through this window.









Oh hey there Mommy, no I wasn't planning anything. Just standing here observing...

ANOTHER SNOW DAY

Another beautiful but absolutely freezing snow day in Bellingham... www.bellinghamherald.com

The temperature this morning was only nine degrees...yikes! Unfortunately these low temps are creating major ice issues for our area. We are definitely not venturing outside anytime soon. More therapy appointments cancelled for today but we are making up for it indoors. Playing lots of "la la la" and "pat a cake" (thanks Jeremy for the idea!) and "where's the dog" games.

Off to try more standing at the glass door. At least Max can admire the snow from indoors (and work on his leg strength at the same time)!

OOPS! FORGOT ABOUT YOUR MEDICAL ISSUES THERE FOR A MOMENT!

Tonight Maxwell and I were playing a game, and every so often it involved me rolling backwards with him on my stomach. Well he just loved it...and all was great. We were both giggling and having a ball. He just loves, loves, loves to roll around, tickle and play.

But then oops, sorry Max. Mommy forgot about the failed Nissen...here comes the formula through your nose. Off to suction land again.

"WHERE'S MOMMA?" "WHERE'S THE DOG?"

In our house, you hear these questions over and over again...and again and again...oh and yes, again! I have been trying to work with Maxwell on identifying objects and with his hearing loss and developmental delay, it has been a work in progress!

Well I think he is pretty darn close to knowing both. So exciting! One night he will totally get it but then the next morning he will need reminders. But that's ok...every day he answers more and more correctly.

His speech therapist was very impressed last week. She said she was even more impressed that he could tell I was asking him a question and he was trying to answer it every time. He might not always have the right answer but cognitively he is "getting it" about questions and answers.

For the past few weeks he would look at the correct answer (me or Shakespeare), but I have taken it a step further recently with encouraging him to touch the correct answer as well.

Last night he was so excited to answer the "where's momma" question correctly that he would throw his arms around me! It was such a fun and loving moment...I was thrilled! (But then this morning he patted the dog when I asked him the same question!)

Practice makes perfect! :) I love this progress!!!

SNOWED IN!

What a beautiful, crazy day in Bellingham! We are completely covered in gorgeous, DEEP white snow! I believe the latest count is about 10-12 inches...that is A LOT for this area! It rarely snows here. Guess God wanted my first snowfall to be memorable! :)


This is the view earlier in the day from our front door.


















My cousins came over to build a snowman and play in my backyard. Cousin Thomas LOVES the snow!


















Me? Not so much. Ok, not at all.














I think it is safe to say our playgroup and therapy appointments will be cancelled tomorrow. Our nurse can't make it out tonight either. Hope Mommy has some fun activities planned for us at home!