June 5th. A week from today. Wow. How should I feel about this one? It has been so long! I feel prepared to take care of Kyara. I am ready for us all to be under one roof again. I am nervous about how each day is going to go. I am disappointed that she is leaving and not going to get the intense therapy each day. I am excited to be able to do my own thing with her. I am angry that she has not improved more during her time at the hospital, but I am hopeful that being at home will help stimulate her and help with her recovery. I am concerned that by sending her home, people are writing her off. I have so many different emotions going, I don't know how to descibe them all. I guess we will just wait and see. Hasn't that been the rule since January? It is only appropriate that we continue... waiting. See what God has in store for us next.
Good news... Kyara has pooped some on the potty!! 3 days in a row she has gone on the potty. I think we are catching her at the right time, she doesn't go everytime we put her on, but she has gone on the potty 3 times!! YEA!! It is a start! Today she pressed buttons on command to turn a light machine on and off.
She also got the loaner chair that we will take home until her wheelchair is ready (could be months!) The loaner chair is HUGE and doesn't fit her, so I hope her custom chair will be ready soon.
This week we will be crazy busy get ready for Kyara to come home. Home-health is bringing her supplies over, including a hospital bed, sometime this week. I am not sure how we are going to fit everything in her bedroom. She used to share with Skylar and I am trying to figure out how we are going to work all of this. The girls' bedrooms are small (10x10), I think I need to empty the room out until they get the hospital bed in it and then see how much room we have left for a dresser and stuff. I think Skylar and Kassey are going to be sharing a room now, it just makes more sense. I know it will be ok...
9 comments:
Going home is good news! We are so glad for you all, Genie.
We are so happy that you will soon be bringing Kyara home! Please let us know what we can do to help! We continue to pray!
We love you guys very much and can't wait to see Kyara again!
Laurie and Josette
Wow! Going home. I bet you are right that being in her own home surrounded by her sisters and parents will help her continue to make progress. Good luck with the room situations and the changes.
Clara
Wow What news!! I am happy for you and the family. It will be nice to be at home and Kyara will enjoy it. Let me know if you need anything as I come to Newnan more frequently now and would love to do anything for you!! Beth Murray
So happy to know that you will all be under one roof again! This can only mean good for Kyara. We will pray for continued progress and for the strength and love in your family to keep growing.
Love,
Michelle
Genie-Once you get whatever PO/OT services that are avail. for her at home, check w/ those providers in terms of a chair that fits her better for the time being. Sometimes they know of services where kids who have out grown chairs or other more appropriate fitting kid loaners might me. I'll see what I can come oup w/ for assistance. The local parent organization is www.parenttoparentofga.org. They seems to have a lot of info on hand.
Susan K.
Genie,
We are so glad to hear that Kyara is coming home and you all will be together again. One of my clients has an organization that helps medically fragile children, I'd like you to check their website out and see if its something you all could use for Kyara. Its: www.dreamhouseforkids.org
If you think its something you all could use, please let me know and I'll set everything up.
I'm working from home, so if you ever need any help, please call me. We'd love to see Kyara too when you are ready, Gracie really misses her.
Much Love & Prayers to You All,
Allison, Orlando & Gracie
Genie
I have been checking the updates daily, sorry I haven't written. Great news that Kyara is stable enough to go home. I understand your emotions being all over the place, that is normal. It will all fall into place and become routine again. I miss hearing from you everyday, but find comfort in knowing that means things have finally settled and are now mostly headed in the right direction. Slow as it may seem, at least she is still taking those baby steps. We will not forget about Kyara and will continue to pray. Don't worry Kyara is not being written off, she is etched forever in our hearts. Hope to see you all soon, Megan would love to spend time with Skylar this summer. Take care and please let us know if there is anything we can do to help with the transition, or anything.
Love and friendship
Anne Henley
Genie, I think it will be a great thing for you to have her home with you:) I've seen kids go home that we call were extremely worried about, and they come back to visit and you can tell that there is just something about being in your own home that helps with healing and rehab. I think you'll all do great! It may be a little scary at first, but even when you were here in Michigan with her, you practically did everything for her anyway. And we always said you and Bunny were her best physical therapists:) I think of all of you often, and I will be praying for a smooth transition home:)
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