Saturday, January 17, 2009

Mom's Update

After many people over the last several days have been commenting on Courtney's haircut and now that she has found her voice she managed to ask me if I had her hair cut? I told her yes and she pushed me! I asked her if she was mad at me for having her hair cut and she nodded her head. I explained the circumstance (tangles, matted mess, blah blah blah) but she was undeterred. Courtney then said something to her sisters - they asked her if she was upset about it - she nodded yes. Then while sitting with Uncle Kevin she spoke some incoherent words among which was one clear word 'haircut'. He asked, "are you upset about the haircut?" She nodded yes. Again, later in the day she brought it up to me again, finally after I showed her the mirror a couple of times and promised never to have her haircut again she dropped the subject. So much for attention span issues!

Courtney had a relaxing day with many visitors all of which she handled well. During her one therapy session Courtney walked up the hallway 200 feet and then back down another 200 feet. She was quite energetic without a full schedule of therapy and so we spent the day with her pulling herself along the handrails up and down the hallway. Early this evening she decided it was a good time to get out of bed herself. Courtney doesn't have any difficulties sitting on the edge of the bed - straight up - without assistance! Walking is another issue but she's not quite aware that she can't just get up and go. The coming days will certainly bring new and exciting challenges.

I've no doubt that no one is going to keep Courtney down and by next weekend she will be walking the halls unassisted and letting everyone have a piece of her mind! Look out Braintree!

Friday, January 16, 2009

from Uncle Brian

Uncle Brian has been on Hiatus. I don't really know what hiatus means but I like saying it. (go ahead, give it a try). It also makes me feel smart when I use it. I asked my neighbor if a hiatus was a vacation to Haiti. For a brief moment I thought he was going to strike me. He told me to stay away from his kids.
Just this morning I was telling my parole officer (just kidding!) what a remarkable story this is. From the moment of impact on that terrible day to this wonderful day, there has been a tremendous human effort aimed at willing and praying Courtney back to full health while also supporting her family. More proof of that,,,,
I went to Walmart today to pick up a tea kettle ($8.78 if you need one and it's the CUTEST little thing!). Of course, I was driving one of the "Please Pray for Courtney" mobiles with the big sign on the back window. As I returned to my truck, I noticed a small card pinned under the wiper blade. The card was approximately 1 1/2" x 2 1/2" inches and there was an image of the Virgin Mary on one side. As I flipped the card over, I could see someone had written a note. It reads as follows, "We prayed for you, Courtney. God bless."
One last thing. I'm not convinced that Courtney's first words were what her mom reported. Not that I don't trust Diane it's just she could have misheard. I'm quite sure Courtney's first words would have been, "Where's Uncle Brian?"
But that's just me.

Love you all, UB

Courtney's first words

"I have to go to the bathroom" - yup. Never in a million years could any of us have guessed that her first words would be an entire sentence. I'm not surprised that her first words had such meaning and purpose!

Courtney's voice is a whisper and so Melane, her OT and I were leaning in close trying to understand what she was saying and we realized it at the same time. We looked at each other and said "I have to go to the bathroom!" You can imagine the rest of the story and yes it was a success. Two amazing milestones in a 3 minute span!!!!

Next Courtney was in bed and I asked her if she wanted me to snuggle with her -she shook her head 'yes'. As I laid next to her she said "I love you" - I asked her if that's what she said and she shook her head yes.

Katy came in and then left the room. Courtney said some words I couldn't understand among which was "Katy". I explained that Katy left the room to eat her lunch. Then I asked Courtney if she was worried about Katy. She again shook her head 'yes'. I told her not to worry that Katy was doing just fine. She stared right into my eyes as I spoke these words.

Then she said "Claudia" and I told her that Claudia was at school but would see her tonight.

After that Courtney drifted off to sleep.

Amen! Alleluia!!! Thanks be to God - one of the happiest days of our lives!!!!!!!!!!

Courtney's communicating

When I arrived this morning I asked Courtney if she wanted to wear a particular sweater. She shook her head no. She hasn't really been shaking yes or no consistently up until today.
But each answer she's giving is deliberate and her response is clear.

Courtney is also trying to speak! It is coming out in incoherent whispers but this is a huge step.

One concern about brain injury recovery is the length of time a patient can attend to a task. This afternoon Courtney played with velcro tennis balls for 15 minutes - throwing them at a velcro target and hitting dozens of bull eyes! She did this sitting up but did take 2 breaks to lie down while continue to extend her hand for the ball!

Thursday, January 15, 2009

Mom's Update

Courtney had Botox treatment today in her left arm. As with many other break through treatments in TBI Braintree and Dr. Katz studied the effects of Botox on muscle spasticity some years ago. It has been found to greatly improve spasticity when used in targeted areas.

While the baclofin pump has made a tremendous difference most of the benefits are realized in the lower body. Courtney has significant spasticity in her left wrist, elbow and bicep that could have caused long term damage. The benefits of Botox will last about 3-4 months.

Although we haven't heard Courtney speak a word today I did hear her voice loud and clear when the first injection went into her arm and she cried out in pain. She made several other attempts during the day to vocalize and/or mouth words and began (once again) shaking her head - mostly no.

As I was helping Courtney off with her vest today her arm got stuck. She took her right hand pulled the vest off her left arm worked it around her back and pulled it off her right arm in a flash! I think she's tiring of having her spastic mother help her get dressed! She's also pulling on shirts and pants doing most of the work herself.

We finished out the day with courtney watching one of her favorite shows King of Queens.

A day at Braintree

Alot of people have asked me what my day is like so I thought I'd share a typical day with Courtney at Braintree.

I usually arrive between 7:30 and 8 depending on traffic. Along with the one to one nurses's aid I help Courtney with her morning bath. Every other day we wash her hair. I help Courtney get dressed -lately she is helping more and more.

Courtney has at least 6 1/2 hour sessions of therapy each day. There 2 - 1/2 hour sessions of pt, ot and speech each. PT sessions are for stretching, standing and/or walking, bed mobility and assessing the tone of Courtney's muscles which have improved greatly since the baclofin pump was implanted just one week ago.

OT sessions are almost always joint PT sessions so that Courtney's entire body is worked. For instance, while in the standing lift the other day therapists played with a balloon with Courtney to get her using her left arm more. They work on getting Courtney to follow commands as well.

Speech therapy sessions focus on cognition as well trying to get Courtney to follow those simple commands I've written about - picking out yes or no from paper cards. These are the exercises that Courtney seems to hate the most. She will often grab the card, crumble it and throw it on the floor! The speech sessions that are her favorite are the ones where she gets to eat!

While 3 hours may not seem like much it is a great deal of activity for Courtney. In between sessions nurses administer medications, check Courtney's incisions or assess her skin integrity and make sure that all of her vital signs are good.

During therapy I sometimes just sit in the corner and watch. Other times I will stand next to or in front of Courtney and speak softly to her to calm her down. Sometimes I'm just a 2nd or 3rd pair of hands to move equipment more quickly so as not to tire or frustrate Courtney.
Of course I'm always encouraging Courtney, telling her she's doing a great job.
I'm very pleased to say that Courtney is developing trust in her regular therapists - Alissa, Melane and Kathleen. It's comforting to see her trust them knowing how vulnerable she must feel.

In between therapy if Courtney is in the wheel chair we walk around the hospital upstairs, downstairs, in the lobby. When it's not to cold we'll go outside for a few minutes. She'll feed herself ice chips (the only thing she's allowed to eat without speech - although that's changing soon). When Courtney's in bed between therapy I encourage her to sleep. Sometimes I'll lay down with her to calm her and other times I sit in a comfy chair in the corner and the two of us nap.

By 4pm Courtney is exhausted and usually takes a cat nap until Craig arrives. Then she'll stay awake for about an 1 1/2 hours playing catch with him or just sitting quietly. By 6pm she's pretty much done for the day and ready for a long night's sleep. I help her get ready for bed and usually leave around 7pm.

Each day brings amazing new things that Courtney does. Each day is a true gift. It's a gift from God that we have Courtney with us and a gift from Paychex that they are supporting me through this leave of absence. We are truly truly blessed to have so much support from employers, friends, family and all the wonderful people here at Braintree.

By the time I arrive at "Uncle Kevin's" house in West Roxbury I'm exhausted! We've also been blessed with wonderful caring family and Kevin almost always cooks dinner for us. I'm sure we'd be eating crackers and peanut butter otherwise! Thank you Uncle Kevin!

Wednesday, January 14, 2009

Mom's Update

We had trouble maintaining our internet connection. Here is yesterday's post:

Part of the recovery process and moving out of the minimally conscious stage is when patients can use objects in the proper way. Such as a brush. Courtney has been brushing her hair for a while but today when she put the back side of the brush to her head she turned it over to use the 'teeth'. This was excellent.



She also used a toothbrush the right way. Courtney picked her name off a magnetic letter board 3 times today. We put the words yes, no and Courtney. Each time we moved Courtney into a new position and each time she found her name on the board.



She has not cooperated with a simple yes no exercise - often crumbling the papers and throwing them to the floor. Some of the therapists felt it was to simple and though she could follow the commands she was frustrated. We are going to try more complex words to help Courtney express herself and see if she can follow other commands. Courtney will respond to commands like 'scooch up in the chair' or 'put your leg in the pants' or pull your shirt sleeve off. This is why we think she could, if she wanted to, respond to much more simple commands like 'make a fist'.



Tonight when Craig came in to visit he had his gloves in his hand. Courtney took the gloves from him and put them on her hands. Imagine that they are very bulky on her small hands and yet she was able to put the second glove on and pull it tight around her wrist

Tuesday, January 13, 2009

Mom's Update

Courtney had the trachea removed today - this is a big deal!

After months of watching her tug on it afraid that she would yank it out herself Dr. Hill came in and removed it. Just the feeding tube to go and Courtney will be 'tube free'!

Courtney will eat more each day but skipped this afternoon's food to give a chance for the trach opening to heal. We've been told that it heals in no time and will already be better tomorrow.

Courtney also had her hair cut last night. This too was a big deal since as the mother of a 19 year old I normally would not make hair style decisions for my daughter. In fact Courtney would most likely ask her friends for an opinion than her mother!

But after weeks of trying to detangle the back of Courtney's head and her own frustration with trying to keep it off her neck while in bed I made the decision to let the hairdresser at Braintree do the deed. It was a very over stimulating experience for Courtney and yet miraculously the cut is beautiful. I can't believe she was able to get it even and look as nice as it does with all the squirming Courtney was doing.

The previous 2 days of standing and walking, eating, hair cut, etc finally caught up with Courtney and she was very tired all day - quite exhausted. At one point while sitting in the chair eating apple sauce Courtney put her head down on the tray table! She kept leaning her head to the side during therapy and looking at everyone with a 'can't you see I'm exhausted' face.

The therapists pressed on as best they could pushing Courtney but not to the point of exhaustion or complete frustration.

Now that the trach has been removed we are very much looking forward to and anticipating hearing Courtney's voice.

Monday, January 12, 2009

Amazing Courtney

Yes Courtney is truly amazing and she continues to amaze the staff here at Braintree.

Today Courtney did much more walking and lots of standing. She sat in the wheelchair in front of a bar and pulled herself to a standing position over and over. Melane told Courtney that she would stand 10 times. Like the driven determined person we've always known her to be Courtney kept standing past the count to 10. Courtney had 3 separate therapy sessions today during which she practiced standing and walking.

Tomorrow Courtney will use a machine called Lite Gait. There is a harness that goes around Courtney's body and allows her to weight bear as much as she can but holds her body straighter than she can currently do so. She can walk alot more with this support without having 2 people holding her.

Courtney had apple sauce and ice cream and her trachea was capped (meaning that she was only breathing through her nose and mouth) most of the day. We talked about a plan to remove the trachea maybe by the end of the week or early next week but we are going to be aggressive about it because she is ready. When the therapist turned the spoon upside down so Courtney could lick the ice cream off the spoon Courtney immediately imitated her and did the same thing when feeding herself!

Courtney is also doing alot more to help dress herself. She raises her legs, reaches down to pull the pants, moves her upper body off the bed to pull the shirt on and puts her arms through sleeves almost independently. She spreads the blanket out herself, fixes her pillow the way she likes it was working to try to pull her socks on!

So much happens and changes every day that the staff is amazed and excited. She played catch with a ball with Melane today and then kicked the ball back and forth. Craig throws her stuffed pig in the air and she grabs it out of the air with one hand. Her eye and coordination is so impressive.

Interestingly she won't follow simple commands like close your eyes, open your mouth, thumbs up. It's hard to tell if she's being stubborn or just hasn't woken that part of her brain.

In answer to a question asked earlier, Courtney is just emerging INTO the confusional state. I know it seems odd that she could be counted as minimally conscious and yet doing so much but that is mostly due to her not speaking and very often not following commands. We are not concerned because her progress is so much more than anyone here expected when she arrived 3 weeks ago.

Tomorrow Courtney will eat different ground and pureed foods and do alot more PT/OT.

As a Mom I'm of course beside myself with happiness when Courtney stands and walks and shows her determination but the best part of today was that she was smiling while standing and being encouraged by Alissa and Melane. Your prayers are being heard and answered as Courtney makes her way to a full recovery and back to the life that God has planned for her.
Thank you!

Sunday, January 11, 2009

Courtney Walks!

Yes! Today, January 11th is a great day. Courtney walked 3 separate times today.

Alex and Maura, pts, came in to work with Courtney today. As soon as they had Courtney sitting at the edge of the bed Alex said, "it looks like she wants to take some steps - let's see if she'll do it." So they got Courtney to her feet and she walked 10 feet to the door. Then she sat down, Claudia ran to get Craig and she did it all over again - this time about 12 feet out the door and around the corner. Finally, Courtney sat back in the wheelchair, took a break and then walked out of the room and down the hallway past the nurses station. That's a distance of about 30 feet!!!

It was an amazing moment for all of us. All the staff came out to the hall to watch Courtney walking - other patients' visitors watched knowing that they were seeing a big event. Of course we were crying happy tears!

Every day is an amazing miracle but Sunday January 11th will forever be a day of celebration in the Hollingworth family!!!