Blogging about life in Minnesota, raising our six 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!"

Friday, May 20, 2011


I'm beat.

Downright beat. And I didn't even take a single picture or video today!

We arrived at the hospital at 8:00, just in time to give Axel breakfast and get him up to use the bathroom. Then the resident came in to make the necessary adjustments to Axel's halo. That needed to wait until he was able to stand and sit upright for a couple minutes at a time.

Then it was time for PT, and we made a loop of the 5th floor again. (that's 280 feet for anyone who wants to know.)  Then we brought him down to the therapy play area where we could practice stepping up and down curbs since we will have to maneuver two steps to get in and out of our house. Axel was a little quiet during this time, which is about our only indicator that he's in pain. We brought him back to bed, and it was time for lunch so he ate and then took a rest.

When he woke up the PT was back. Our biggest concern is my back since I messed it up doing the very first transfer with him back on Tuesday. When we go home on Friday next week, it will be me alone with Axel, having to get in and out of cabs, in and out of the plane, etc. That, and I'll be alone with him every day so I need to be able to do transfers in and out of bed as well. There is a lot, and with the  halo on he weighs about 70 lbs.

The therapy play area has real car (though it's a two door.) and we practiced doing transfers in and out of the car. I was able to do it ok, but there is a lot to think about, like the fact the bars from the halo hit the roof of the car as he's getting in if I don't bend him over at exactly the right time, while at the same time making sure his butt is on the seat, but that he's leaned back far enough to REACH the seat with his butt!

 We transferred in and out of the car twice, and while I was buckling him back in the wheelchair, I lost it. I started crying and I didn't even know why. I think it was the combination of being tired, the thought that I'll be completely on my own doing this, and just all there is to think about when traveling with a child in general, then add in that I'll have Axel, luggage, wheelchair transfers, his pain, what if he has to go to the bathroom on the plane, etc. etc. and it was all just too much for that one moment. I hate when I'm crying and I can't even talk well enough to explain WHY I'm crying because really, I DON'T KNOW! And I asked God to just make me comfortable with all of this because my kid is depending upon me to manage it all safely....ALONE!

Half hour later, we were back in Axel's room when his surgeon came in to do rounds. He looked at Axel's surgical site and removed the bandages from his hip. It was the first time we've been able to see the hip wound. It looked great, and he said Axel is healing FAR faster than expected. He didn't see any reason for us to visit the clinic next Thursday unless there was some unusual problem, so.....we are free to FLY HOME! In a whirlwind of activity, with about five different people working at once, we were able to get my and Axel's flights changed so we can fly home with Dean and Angela on Sunday! We were able to get prescriptions for pain meds sorted out and all the other little details. The only one we're left to figure out is the wheelchair which....please God!....will be taken care of tomorrow!

So, the plan is to pack up everything tomorrow night, then arrive at the hospital about 4:30 Sunday morning, get him discharged out (paperwork is going to be prepared Saturday night) and be to the airport by 6:30 for our 8:00 a.m. flight. This puts us on the ground at home at 10:30 a.m.

Thank you God, for arranging all of this! I know it's because it really is too much for just one person to get him home by plane, and God knew I really needed Dean's support in doing it. Dean and I are a great team. Several times today staff told us how well we work together and communicate with each other. I know part of their job is to encourage us as parents, but it worked. It really helps that we have God guiding us, and an amazing little boy who we love dearly!


alyssa said...

God is good! So glad you won't be alone!

racheal_stewart said...

That is fantastic! So glad you don't have to go it alone. Wonderful that Axel is healing so quickly.

Mel said...

YAY!!!! Praying that things stay on schedule for you with the plans! I'm so relieved that you will be with Dean and Angela on the plane!!

And patiently waiting... said...

Praise God!!! I so close to tears reading this post!!! So glad God can arrange ANYTHING!!! :)

AddingOn said...

Oh, Leah, I'm sorry you went into an ugly cry at the hospital. You just needed to let it out. I've been there and usually there's no warning it's coming! Thank you God that you will not be alone getting him home, amazing that God has healed his little body so fast that you were able to move your flight up!