I need prayers

[2manypets]

sending love and prayers to Ashley and your whole family how is your other daughter doing

Thank you so much for thinking of Krysten my youngest daughter. She started school so she has other things to occupy her mind. Krysten's getting adjusted to having a sister that's not the same as she was.

Ashley is still improving every day. Her cognative reasoning is showing in little things. We were rolling a ball back and forth and I asked her to roll it to Krysten who was on the side of her. Ashley pushed the ball so fast it almost flew off the table. It was the first time she used her left arm externally.

We found out that she can still read and responds by pointing to the answer. It's still a bit inconsistent, but it's a great start. Her therapists are please with her progress in her movement on request. She's no longer taking baby steps...they're now toddler steps! Except for the speech therapist...Ashley is having a hard time relearning to swallow. She'll have to remain on the PEG tube (feeding tube) until she can swallow, clear her throat, stick out her tongue and chew on request. She can stick out her tongue and her swallowing is a bit faster now, but she chokes on her swallows still.

She's moving her lips like she's talking but no sound is coming out. We've heard little grunts and moans so we know that when she's ready to talk, her voice is there. We are beginning to understand what she wants by her pointing and facial expressions. It's still pretty much a guessing game which is very frustrating for her.

Our insurance is still giving us trouble and still denying our request for the next level of her care, a NeuroRestorative Rehab facility. As of yesterday, her current rehab is setting her discharge date as of 9/06/10. We'll have a CNA and Speech, OT, and PT set up to come to our house to continue her care. We've already ordered her hospital bed and a hoyer lift for home use. Unfortunately, we're in the process of buying a house that will accommodate her wheelchair and won't be closing on it until the 16th so we'll have to set up the bed in the dining room until we move. At least it will keep her in the hub of the activity and keep her stimulated with activity.

It's more stressfull than I ever imagined trying to get this house ready for Ashley's homecoming while trying to deal with buying the new house and then outfitting it with Ashley's equipment, (we're setting up one of the room at the new house as her rehab room) I have no idea what we're going to do with our sweet, overly protective dog when all these people will be at our house for Ashley. I hate the idea that Tempest (our dog) will be a garage dog. For the current house, we have to rip up the carpet and lay tile and then take down door frames. Rearrange the furniture and put a lot of it in storage so Ashley can get around easier. Oh I forgot about having to pack everything up to move it. Maybe we'll be so busy that we won't have time to feel sorry for ourselves!

We are buying a minivan that's equipped with a ramp and lowered floor today. We borrowed the van last Saturday and took Ashley over to her Aunt's house. Ashley was nothing but smiles that day! She did so well and was so "with it"! We were there for about 1.5 hours. Being home may be the best thing for her at this point. I'm scared of the change but it will be a good change, just a whole lot of work.

I've already cancelled our planned December trip, with everything that's going on there's just no way that we can take the finances or time away. It's so strange that I don't feel bad for not going this year though.

 

[sorul82?]

Thank you for the update and thank you for allowing us readers here into this part of your journey in life.

 

[mdvlprof]

So glad to hear about Ashley's improvements. Good luck with ins issues.

It's scary bring home a child who is disabled, esp a college-aged who is newly disabled, totally depedant on you. Been there, done that with DS. But as a Dr told us, probably will get better care at home than even in a hospital. You can do it......

On a more practical note - have you applied for SSI for Ashley? Have you gotten a Power of Attorney?

 

[WheeledTraveler]

I'm really glad it sounds like she's doing really well!

I have so much sympathy for insurance problems. With the insurance I currently have I know that if I were to have an accident like Ashley's I'd be SOL in terms of getting enough care. And then they'd probably insist on dumping me in a nursing home long term rather than home care! (Which is kinda amusing because home care is cheaper than nursing homes, but insurance companies haven't grasped this yet)

Since it's obvious that she's trying to communicate, but for whatever reason her voice just isn't working yet in terms of speaking, has anyone talked about alternative augmentative communication devices (often known as AACs)? If she can press a button, she can likely use some form of AAC and the not being able to tell you what she wants is just going to get more frustrating for her the longer it lasts and while I don't think you meant it the way it came out, but I don't think the being "ready to talk" is something she has control over since it sounds like she's trying to! And learning to use an AAC and talking again are not mutually exclusive! I'm sure the speech pathologist is far more concerned about the swallowing and it's certainly important, but for Ashley's mental health getting a way for her to communicate directly is also very very important. I have a couple friends who use both feeding tubes and AACs due to progressive disabilities and it was far more upsetting for them when they couldn't talk before they got their AACs than moving to the feeding tubes.

I hope things continue to go well and the move to the new house and both of Ashley's moves go as smoothly as possible!

 

[mdvlprof]

They have eye-gaze systems that do not even require ability to use a switch or button. DS uses one. Techies find his computer fascinating. Therapists, also, because most have not seen one before.

 

[rodeo65]

Thanks for keeping us updated and it's so great to hear of Ashley's continued progress.

Good luck with the insurance issues, the renovations and move(s). The light at the end of the road will be having your daughter home with you again, even with some of the normal uncertainties around managing her care. I'm sure you'll be amazing - you have been every step so far!

 

[cm8]

Thanks for the update...wanted to see if Ashely came home yet. I understand that you may have your hands full at the moment. Praying for you and your family

 

[2manypets]

Ashley is home!!!

We closed on our new house on 8/31, stripped wallpaper and painted for the next two days, moved our stuff into it on 9/3, unpacked (almost ) and moved Ashley in on Monday. We haven't slowed down yet!

The first night, she slept for 12 hours straight. After being in the hospital for almost 4 months she's not been sleeping very often. It's so good to have her home with us where she can relax

All of the therapies will start this next Monday. She's progressing so rapidly that I can't wait to challenge her. But so far we've been able to help her to continue moving forward.

Ashley has come such a long way just in the last month, she now has torso control so she can sit up on her own. She is using her legs in a walking motion in her wheelchair and she has the most beautiful smile most of the time. Her head shakes and nods are pretty consistent now so we're beginning some very useful communication. She also has a wonderful electronic communication board thanks to Mid-South ACT that she can spell out full sentences. On Thursday she had a swallow test and passed with flying colors! I've gotten her some Gerber stage 2, 3 & 4 to start her off on feeding herself. I've pureed some of my own food, but I think she remembers that I'm not such a great cook. She only ate a little bit and then shook her head when I tried to give her more!

I never dreamed that having her home would be such a relief. I knew it was going to be hard work, but it's so worth it to see her grow and re-learn so much before our eyes.

 

[carley]

this is wonderful news!! my thoughts and prayers are with you .

 

[rodeo65]

Thats SO great to hear. Congratulations on moving into this next, exciting phase of your/her life. I'm sure she's just as thrilled to be home as you are to have her.

 

[kampfirekim]

I just found this thread and it nearly broke my heart. Then as I read further, i was so happy to see the progress she has made so far. You and your family will be in my thoughts and prayers. May God continue to bless you and bring healing and restoration to your precious daughter.

 

[mdvlprof]

So glad Ashley is home. Be ready for positive changes...

After DS-20 came home [5 months in hospitals/rehab] - it only took a few weeks - he was off pain meds, didn't have painful brainstorms, twitched his thumb, didn't scream when someone touched his arms, was laughing and smiling -alot.

 

[Piper]

I am so glad she will be home with you. It will make a lot of difference for both of you! Prayers are continuing.

 

[irishsharon]

I'm so glad to hear that Ashley is home You and your family are in my prayers

 

[sl_underwood]

I have been absent from this site for awhile so I just found your post today. I will add my prayers to all those you and your family are receiving. You are so positive and upbeat, a real inspiration. I know it is your attitude that is propelling your daughter forward. With you by her side, I have no doubt she will continue to do well.

 

[Brightsy]

So happy to read that Ashley is home!

 

[2manypets]

So glad Ashley is home. Be ready for positive changes...

After DS-20 came home [5 months in hospitals/rehab] - it only took a few weeks - he was off pain meds, didn't have painful brainstorms, twitched his thumb, didn't scream when someone touched his arms, was laughing and smiling -alot.

This is where we are as well! Always smiling, always playing tricks on us! We've cut a lot of her medication and she's now weaning off the stomach tube. This morning Ashley ate scrambled eggs, bacon, biscuit and a sweet roll. Also a glass and a half of milk. After 4 months of not eating, she's making up for it now. Her next appt for the gastro is in November. DH & I are expecting, at the rate Ashley is going for the tube to be pulled. Her therapists are coming almost every day to work her out. She's starting to bear weight for her transfers which is wonderful for my back. Her memory is still very affected. We took her to a restaurant a few nights ago for a friends birthday party, but the next morning she didn't remember it. The next night we took her to another friends house and this morning she didn't remember it. I'm hoping her memory improves in time. DH & I are beginning to video tape and take pictures as reminders of what she did.

She's doing really well at home, but she still needs more. We're fundraising to send her to Timber Ridge in Arkansas, where she'll have pretty intensive rehab. Ashley has the drive and determination to see this through!

 

[bookwormde]

Glad she is making such great progess. In this day of digital images, taking lots of pictures of her activities and printed them out (even if not at photographic quality) is a great way to help her imprint the memories and to be able to reference back to them later.

bookwormde

 

[sunset30]

so happy to ready she is making good progress, I send prayers that this continues x

 

[mdvlprof]

She's starting to bear weight for her transfers

That's great!

DS foot-drop was fast. We're having to look at surgery to fix his feet so he can weight-bear. [too bad he can't do ballet-toes are perfectly pointed].