Friday, July 26, 2013

A Broken Record...


I brought madeline and Luke with us to Abby's transfusion.
Believe it or not the children want to go and the hemoc center has made it into a somewhat pleasant experience.

The kids played play doh, painted, we read books, watched some TV and had lunch in our room.

The doctors at Boston Children's feel strongly that they are right and that Abby has Congenital Siderblastic Anemia and NOT MDS. Our local University says it is MDS. I have also heard that sometimes they never really figure out what it is that the children have but for now we are going with the CSA. It's a better diagnosis and something inside of says this is right. I feel that if she would have MDS we would have more signs of leukemia. 

At this point we are back to no bone marrow transplant. Of course if things change we will re evaluate.

What I really have to say about two of these hooligans is this...

They are some of my littlest and yet they always want to lead the way... in medical buildings, parks, parking lots, stores- where ever we are, where ever we are going Abby and Madeline forge ahead  of the crew.
If it's not a dangerous situation I just stop and watch...
until they realize no one is following them.
The go the wrong way pretty much... ahhhhh.... 100% of the time.
I just have to laugh.
And they do it with such confidence and certainty!

When we are in a parking lot I stop them before they step into the road.
I am beginning to feel like a broken record!

"Okay, what are we supposed to do? Look left, look right! Hold hands!
Follow Mommy, stay together, stay close. You are too little, the cars can't see you."

The truth is I want a handicap sticker for parking.
I know you probably think less of me...
We are all able bodied...
We are not necessarily able minded though...

I tried to get one with Abby but they didn't go for it.
Oh well, looks like I'm going to have to continue to 
repeat, repeat, repeat...

8 comments:

Angie said...

Sounds very familiar! I have two that love to forge ahead, also not having a clue where we are going. We decided to make them walk behind most times for a few different reasons, including the reminder that they do not lead the family...mommy and daddy do. Realizing they do not lead our family seems "mean" to some people, but it needed to be addressed with our two in a BIG way!

amulbunny's random thoughts said...

Don't give up the fight for the handicap parking placard. I have a congenital back defect and from the outside I don't look ill. The placard has been used all over California and in
MN when we were on vacation..
Impress on your doctors that she is a fragile child and walking distances wears her out. One of them will fill out the papers.
My kids (I only had 2) were always anxious to get places. I felt like I wish I had reins on them to keep them in place.

Shecki Grtlyblesd said...

Two of my kids have limb differences, so we do have a placard, and I have to say, I love that thing. Just the extra space around my huge van is a blessing.

Karen said...

We got a handicap placard for Lydia, especially during the winter. I especially worry about slipping on ice while carrying her, so I wanted to get as close to the destination as possible. We've had it over a year and I still feel guilty parking in a handicap spot and hope people actually see her get out of the van so they won't think I'm taking advantage.

Sarah said...

I am planning on getting one for Kaikai once we move to MO. Our pediatrician said that it would be no problem. So, once you get your new little guys, you should be able to get one I would think!

Liz Freeby said...

we too have one for JD. He has dwarfism so it's not that he can't walk but he's short and if we have to park too far away at the mall or store...he just can't walk the whole way inside! It's truly a blessing and I'm thankful our doctor signed our form!!!

adoption journey said...

Our son is "legally" blind, so we were able to get a handicap pass for him. We don't use it 99% of the time because I feel guilty taking up a space just for my convenience, but when we go skiing it is especially useful. I do have to hold his hand when we walk in new places, and I can't manage all the ski equipment and hold his hand and still walk 1/2 a mile with 6 little ones. We have a grocery store that has preferential parking for pregnant ladies or those with babies. I just love that idea!

Learning Together at Home said...

I love our placard. Having a self-confident young man in a wheelchair or even on his prosthetics makes for scary times for Mama on the way out of the store. Too much to keep track of (other kids, loaded shopping cart, other drivers and then our son with the bravado). Wow. I'd see if you can find another dr to fill one out for you.