Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, May 18, 2011

Kiss the Bear

Yesterday (Tuesday) Axel had just a few minutes where he was feeling semi good. It seems a long time ago already! Anyway, he was loving on his Bobo bear.


Right now I'm waiting for Dean and Angela to come to the hospital with clean clothes for me so I can get a shower. I expect him to get worse today since he's going to get up and moving with PT today, get his vest and halo adjusted, drain tube out of his hip, bandages removed from his neck and changed on his hip and other things he really wants nothing to do with!

5 comments:

Gretchen Thibault said...

Oh,Axel sweet boy. What a little love. Ge better quickly sweet love. Keep hugging and kissing that bobo.

racheal_stewart said...

Sounds like a tough day. Sending hugs and postive thoughts your way.

Difference2This1 said...

Prayers that each day gets better. What a trooper!! Prayers for you, Dean, and Angela too through all this. Blessings, Jennifer

Ellen said...

We did not do a halo but my son had an external fixator frame screwed into his femur. I remember those first few days with a shudder so I feel for you. It does get better. One issue I found was that although after a couple of days the pain was not nearly as bad, my son anticipated pain and threw fits out of fear. That will be more of a challenge with Axel as he does not have the language that my son had at age 6, with two years of English and 5 years of language. It does get better and once he figures out he can gain some autonomy and the pain settles he should be more himself. But until then it is tough and I felt sick looking at him and thinking I "did this" to him. But you know you are saving his life. Still tough.

Does the padded part of the vest come off? If so, why no showers? We were allowed showers within a few weeks, swimming pools with chlorine as well. I realize femur is different from skull but the pins should only be into the bone, not the brain?

Ellen

marlene said...

Somehow I missed this one from earlier in the week. This is sooooo precious! His little hand patting the bear, the little kisses. Awwwww . . .