December 14, 2018 Home Again

I just realized that I have been pretty lax on updating the blog this week, so I apologize for that. I have good news to share!

This past week I spent my days at RMHC fighting off what I initially thought was allergies, but came to discover was likely a bad cold. Because of my symptoms, I stayed away from the hospital but got daily updates from Chris on her progress. My poor husband, he’s had to do almost all of the work this week.

He said today was an eventful day in therapy. The beginning of the week she kept the same schedule with OT at 10 and PT at 1, but today they combined the sessions into one and both therapists worked with her at the same time. They were able to put her in a contraption that allows her to suspend from the ceiling. Chris said she “walked” much better in it than she did the gait trainer. He also said the therapists had her stand in front of the desk that holds the computer game today. They have been doing this during the week, but today she was able to stand without assistance for 45 seconds. She was able to correct her posture with her knees buckling. This is big progress compared to what she could do standing last week!

We are back in Orange Beach for the weekend again. We will be meeting someone from Coastal Medical to get Annadelle’s new wheelchair that is being donated by them. I cried for hours after they told me about the donation. In my defense, I also poured out all of my anxieties on Nicole when talking about it so maybe it wasn’t just the donation. But still.

We will have three more days of therapy next week and they will finally release us to regular outpatient after Wednesday. We will be traveling to a clinic in Mobile for outpatient therapy. This particular clinic partners with CRS, so if we want help covering any medical equipment we have to use that clinic. We have decided to try it out and see how well she does there before trying to transfer her to a clinic in Orange Beach or Mobile.

Even though we are being released to regular outpatient therapy, we have still been approved for KKI. I spoke with KKI yesterday and if we decide to go inpatient we will admit on January 7th and will be there for 3-4 weeks. I asked about the possibility of going outpatient due to the fact the rooms are shared and only one parent can spend the night in the room. They can admit her outpatient but she was not sure when they would have an outpatient opening. She was suppose to call me today to let me know but I never heard from her. I will check with her again on Monday.

It doesn’t matter if we go inpatient or outpatient, we will still need a place to stay in Baltimore. If you happen to know of my housing close to KKI or Johns Hopkins Hospital, please let me know. I have a limited amount of time to find a place to stay if we do admit on January 7.

As far as our travel to Baltimore, we actually had someone offer to fly us there and back. I really can’t believe the generosity of total strangers and have definitely felt overly blessed.

Please continue to keep our baby girl in your prayers, as we are far from being out of the woods. Every day I pray and ask God that he give her full restoration and healing, and also to give me patience and understanding. I ask that you pray specifically that she show signs of improvement in her legs so that she may walk again and maybe get some independence back.

Annadelle helping me to fold towels and sheets in preparation for Christina and family visiting tomorrow
Poor old Ruby now gets mandatory rides with Annadelle in the wheelchair
Nicole got Annadelle some makeup and taught her how to put it on last week
Annadelle telling Chris to watch how well she can put on mascara
I haven’t been able to keep up with moving Annie being away from home, so my mom helped me out in order to surprise Annadelle tonight.

1 Comment

  1. Vickie Bowen
    1:16 AM (3 hours ago)

    I have been showing my granddaughters pictures of Annadelle, so they recognized her on 13 news the other night. They have enjoyed watching her videos. Priscilla is 5 & Chloe is 4. I told them that we are going to have to meet her 1 day. They liked that idea. Maybe when she improves enough to be out more, we can do that. 1 of them asked why she wore the mask, I explained to them so that she wouldn’t catch a cold since she had been so sick. They used to ask why she had those tubes in her nose, so I explained that. They like watching her videos. Prayers continue for her healing. Prayers continue for you & Chris to keep your strength up, so that you can continue to take care of her. I know from experience what it’s like to take care of special needs child that can’t do a lot for themselves. My son, Steven,was born with Cerebral Palsy & required a lot of care. He did eventually get to the point that he can do a lot on his own. His CP affected his mind more so than his body. He can now walk without a walker, but still needs a wc for long distances sometimes like in Wal-mart. He has the mind of an 8-10 yr old. After 1 of his surgeries, I was told that if he didn’t start walking better, he would be in a wc by the time he was 18. He is now 43. I’m not telling you all this so that you will feel sorry for me. I’m telling you this to give you hope & encouragement. God has performed a miracle for you, but HE IS NOT FINISHED YET. He can take a test & turn it into a testimony.
    Love, Vickie Faulkner Bowen & family.

    Like

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