December 28, 2018 Planning for KKI

We received word from Kennedy Krieger Institute in Baltimore that plans for our inpatient arrival are underway. Our coordinator, Sharla, has been extremely helpful by helping us to learn about what to expect during our stay.

She called me today to let me know that because we are expected to arrive on January 7th, she cannot submit for insurance benefits until January 2nd. This is because a new benefits year begins on the 1st so they are not able to receive an official “yes” from Blue Cross until January 2nd. This means we are kind of in limbo until January 2nd when Sharla is able to submit for benefits. Hopefully we will hear back from BCBS rather quickly since we have been assigned a case worker (Tamara), which we have learned typically makes the process move a little faster.

In the meantime, we were told to go ahead and book our flight and book a hotel room. We have been referred to both the Ronald McDonald House and The Children’s House, but like most accommodations around large hospitals, there is a waiting list and rooms are not guaranteed. However, if for some reason we are not able to get a free room, we were told there are many hotels close to the hospital that give discounts to KKI patients.

Even though we are inpatient, we will still have to get a room because only one parent can spend the night at the hospital. The rooms are shared with another patient (and parent) so space is limited.

We have also been planning for life after KKI in the little bit of time we have left at home. Yesterday we traveled back to USA Children’s and Women’s Hospital for Annadelle’s PT evaluation by her new long-term outpatient therapist (who we learned was Cameron). Annadelle only met her a time or two while we were inpatient at USACW but she seemed to like her. On the way to the hospital, she kept saying, “I wonder who my new PT and OT will be?” She was super excited to learn that Miss Aly would be her OT again.

During the PT evaluation, I made a comment to Cameron that I thought I had noticed her right quad engaging in the bath the night before and she agreed that she believed she felt a slight firing. I still haven’t noticed the hip flexor moving but if the quad is moving, that is progress!

Also while in the eval, Dr. Maertens came by to see Annadelle. He had not seen her since we left USACW, but he had called me to check on her about a week ago. I sent him a text while we were on our way back to Mobile to let him know we would be there if he wanted to come see her. He seemed very excited that she had made as much progress as she had, but he did tell us Annadelle needs to lose some weight. He suggested a low carb diet and said that if she is able to drop the weight she has put on since being in the hospital (which is a good bit), that will help her in PT, especially using her core. Chris and I immediately put her on a diet, eliminating a lot of bread and basically all candy that she had been having pretty regularly. It’s hard to tell your child no to things they want when you’ve watched them on the brink of death.

Last night we played with Annadelle a while in the floor using a medium-sized ball and a large pillow that my aunt Jeanie purchased for her (thank you, aunt Jeanie!). The pillow is so helpful because he gives her just enough support to help her stay sitting up. I still put another pillow on her left side because she is much weaker on that side and hasn’t been able to stop herself from falling over once she leans too far. She can stop herself on the right side, though.

Today we braved the wet weather and drove to the courthouse annex to get a handicapped placard. The employees at the annex were extremely friendly and gave Annadelle a few small gifts like candy and hair bows. It really is amazing how much special attention she gets when we travel out in public when people see her wheelchair. We also get a lot of stares which can be uncomfortable, but we are getting used to it.

For dinner we visited our favorite local seafood restaurant, Desoto’s, for a special meal. We are pretty tired of eating out since we have done it for so long now, but we wanted to experience Desoto’s before going to Baltimore for a few months (possibly). While we were there, Annadelle had to use the restroom which we learned was not handicapped accessible. An employee helped to hold the door open for us to enter the restroom and made the comment they had just remodeled to make the stall doors wider, but I could barely fit myself in there, much less Annadelle and her wheelchair. I ended up having to leave her wheelchair outside the stall and carry her to the toilet, leaving the stall door open. She is old enough now that doing that is embarrassing for her, but I could not get her in there any other way. Desoto’s would be a lot better off just using the restroom as a single restroom. I’d hate to see how an impaired adult could function in there with a larger wheelchair alone. But honestly, I never thought about anything like that until Annadelle’s diagnosis.

Please continue to pray for Annadelle’s complete healing, and specifically for her left foot to “wake up”, as well as her right hip flexor. We are trying to stay strong in our faith and have confidence she will be a testimony to so many.

Thank you again for everything. We love you all.

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