Update on January 24, 2014
Well, Daughter of Purpose has been moved to a regular recovery room…no longer in PICU. This room is quieter and we have our own bathroom. The nurses don’t check in as often so the pace is a bit slower, which is nice.
Two days ago, DOP started physical therapy, occupational therapy and speech therapy. The therapists come to her room, so that is nice. Here is an update on where she is….
After only two days of ST, the therapist decided she didn’t need any more. This sounds a bit odd based on our last prayer request of her not speaking much, but it actually makes sense. The problem is not in DOP forming or saying her words. She can speak and pronounce most words correctly. The problem is that she just….doesn’t.
For those who know DOP….this….is….odd.
This girl used to talk so much we would have to discipline her at the dinner table. After a half hour of eating she would still have a full plate of food because she talked the whole time. So, you can see why this concerns us just a little.
According to both Neurologists who have been working with us, this is very common among brain surgery patients. They just don’t talk. And this can last up to a couple weeks. In the meantime, she has been prescribed a low dose of medicine that has shown to help expedite this issue in past studies.
We’ll keep you updated on this.
Physical and Occupational Therapy
This is where she will have some work ahead of her. During the surgery, they went into the head through the back of the upper neck. They pretty much just cut right through all the big neck muscles that hold up and turn your head. DOP still has a lot of pain when her head turns, but it seems to decrease every day. She can very slowly turn her head side to side, but she cringes in the process.
The PT and OT specialists work together at the same time which is nice because the games she plays with the OT to help with fine motor skills helps distract her from the more painful movements in her neck. With help, DOP can sit up on the side of the bed, but she gets tired very quickly. We still have to carry her to the bathroom, but she is at a point where she can at least sit on the toilet for a few minutes by herself. She shows improvements daily, but I’m not convinced walking will come anytime soon. I, however, have been getting quite buff from picking her up several times a day. And I need to go to the chiropractor.
Her fine motor skills with her arms, hands and fingers need a lot of work but she was able to eat a piece of pizza today by herself.
I suppose there is more in her movement than I give credit for. Tonight she was trying to pick her nose because the dry hospital air was bothering her. As a result, she got a bloody nose and it got all over! She’s such a trooper…she just laughed as the nurse and I cleaned her up.
Please continue to pray that her strength returns and her motor skills improve. Pray that her neck pain reduces and her neck muscles get stronger.
Many friends have been asking about DOP’s eyes. She is still seeing double, but the shaky movements you see when you look at her seem to be much less than a week ago. She’s frustrated at this….since it is what brought her in here in the first place.
Please continue to pray that her eyes will get stronger and she will eventually only see one good image.
The hospital has a very good onsite rehabilitation center. There is limited availability and certain qualifications must be met prior to being admitted. DOP had a consult with the doctor who runs it. Turns out, we knew her! (More on that in a bit.)
We found out that she meets all of the qualifications and that insurance has approved it. Originally, we were told this part of the hospital does not do admissions on the weekends, but that seems to be changing since the nurse told me we might move in on Sunday. Then it changed to Saturday.
Scheduling with this place is crazy….nothing, nothing matches anyone’s schedule. But DOP is getting great care so we don’t mind just going with the flow.
Everybody we talk to in the hospital says that the Rehab is the…place…to…be! So here’s to hoping our hopes are not let down! Apparently the rooms are much nicer, DOP can wear whatever clothes she wants from home and there is a kitchen we can use. She’ll do therapy several hours a day…so here’s to hoping I can get more school and work done too!
So….a bit of history for those who do not know DOP real well.
DOP had Polio as a baby when in Russia. As a result, her legs are weak. She can walk, but she requires braces and she has a funny little limp to her gate. She’ll never be an Olympic runner and has difficulty with many sports.
Stairs are her worst enemy.
But she can get around just fine. She can swim, get in our very large car by herself, play baseball and various other things. She is just unstable sometimes and a random fall is just part of our normal entrance into every store.
Enter Children’s Hospital’s new Adaptive Sports program which is designed for those who have physical disabilities and their families. We have participated in this a few times in the past. DOP has played sledge hockey on ice. It’s the coolest thing to see a bunch of kids who can’t walk (or have difficulty walking) play ice hockey on these little sleds. They also do water sports, rock climbing and snow skiing. We were planning on going rock climbing with the group two weeks ago….but somebody had to go and get a brain tumor!
Some of the people we have met during these outings, happen to be people who work in this hospital and have now worked with DOP. The doctor who runs the Rehab center is the one who helps put on the Adaptive Sports Clinics. She knew who we were before she entered our room. How cool is that?
God has paved the way for many things in this journey of hers….ours….whatever. There are many areas that we see God has made provisions for our family and for DOP’s recovery. We’ve made many new friends who have showed more love and support than we knew we could absorb. Our dearest friends, Randy and Monica have come to our house almost every day to help take care of our other kids, clean the floors and heat up leftovers for lunch. They’re the absolute best and we could never have come this far without them.
So many other friends and family have brought meals every day to both the home and the hospital. The support we have been given is overwhelming. Thanks friends!
But we’re not done yet. Certainly, DOP is no longer in danger (I weep just thinking about it) of the tumor, but please continue to pray for her recovery, her mind, her drive to get well and her strength.
As always, thanks so much for the prayers and support.
Nathan and Brandy