Snug and Warm Holiday!

We hope everyone had a wonderful Christmas Day! The snow storm in Reno was beautiful to look at from inside the hospital. We had gotten a pass to take Caitlin home for a few hours on Christmas Day but had to change that decision due to the weather. I know Caitlin was relieved because as excited as I was about having Christmas at home she was equally as anxious to go in the car and out of the hospital. Michael, Tim, and I had a bit of training as to how to transfer Caitlin. I definitely learned I am not very strong in moving her. Michael and Tim of course would be much better at transferring Caitlin. We had a quick change of morning plans on Christmas day but we still managed to be cozy and warm in our Christmas jammies while opening presents and having brunch. Caitlin is still stuck on her smoothies for every meal but the rest of us enjoyed a nice Christmas brunch thanks to Dagmar's delivery service! Caitlin was exhausted after her morning and took a two and a half hour nap to get ready for the late afternoon Christmas celebrating with other relatives. It was just wonderful how the whole day worked itself out. I left the hospital on Christmas Day feeling happy and full of the Christmas spirit that I felt was absent as I drove to the hospital in the morning. We had a surprise visit from Colleen and Paul Solomon who live in Southern California but were in the Reno area for the holidays. They were a bit stranded due to the snow so they ended up eating Christmas dinner at my house and spending the night. Paul is a musician so he came the next day and played his guitar and sang for Caitlin. It truly could have been a Christmas movie on the Hallmark Channel! Caitlin is chugging along in her therapies with success! She is actually getting rather feisty which as good as it is we need to be a little mindful of her sense of humor these days. She is getting away with a few inappropriate gestures and comments as she writes things down and types on her keyboard. I will not duplicate them on this blog but they are actually quite out of character for the Caitlin I have always known! Not sure if it is good or not but for now it is what it is! That seems to be a very strong underlying theme for life these days...it is what it is...deal with it! Best wishes to everyone for 2009!

Happy Holidays to All!

Creating Christmas while spending as many hours with Caitlin in the hospital has caught up with me. I never fully understood when people were running around at the last minute complaining about all the holiday traffic and stress of shopping in crowds. I gained a new insight yesterday afternoon while shopping after spending the morning in the peace and calm of Caitlin's sunny hospital room! By now my house would be decorated, the presents wrapped, and I would be making cookies while listening to Christmas music. Life is definitely different on this December 21st! But, I need to remember that this is all temporary just like I tell Caitlin about every part of her recovery. Again a reminder to practice what I preach!
Caitlin is doing just GREAT! Yesterday she spent the morning in her wheelchair being kept busy with therapies and my desire to make life as "normal" as possible. I was on a roll. We wrapped a present together, wrote the gift card, and worked on cleaning up her room! That girl must have fifteen pillows in her room. She gets packed in pillows for her comfort...under her legs, under her arms, and depending on which position she is forced to lay in at times all of them may get used. On the flip side of that, when she is on her back she doesn't use any. It would be great grounds for a fun pillow fight since pillows are scattered all over her room!
We have laughed and joked at so many of the daily occurrences in Caitlin's life right now. Getting on an adaptive potty chair is a celebration and a lot of work, but it is happening. So of course we want the whole world to know! Debbie Baer said, "Don't put the results on the blog!" I was tempted! We are still working on getting Caitlin to eat more and we did accomplish 1400 calories one day. As we have learned what works one day doesn't work the next. Mal tried her hand at having Caitlin drink a Strawberry Ensure and we were laughing so hard that the amount of drink on Caitlin's towel bib was more than what we even thought was in the can! Earlier that same day Caitlin had consumed a whole can of it. She is currently into Keva Juice thanks to the reminder by her brother of what she really likes. Michael was so correct in this bit of advice. Of course, I am now going to make daily trips to Keva Juice until Caitlin tires of this too.
Tuesday we have what is called a "family meeting" where all the therapists and doctor sit with us to update us on what they believe are Caitlin's progress and program. I know the conversation is going to turn to Caitlin having a peg tube placed in her stomach. This is where she will eat all day long as normal and however many calories she doesn't consume on her own she will be fed through this tube in the evening. There had been lots of conversation of this while she was in intensive care but the four doctors couldn't agree on how long Caitlin could be off blood thinners to have the procedure done. Consequently it wasn't done at that point and the NG feeding tube through her nose was left in instead. I feel that we have been trying incredibly hard to avoid doing this but keeping that calorie count up is getting us down. The good thing is though, that when Caitlin got weighed this week she really is still within her normal weight range prior to her strokes. So I wait in anxious anticipation of this aspect of Tuesday's meeting. I believe every therapist will be lauding Caitlin praises on the results of her hard work this past week. Caitlin is raising her left arm on her own to about shoulder height, picking her left knee up so can can put her foot flat on the bed, writing sentences from dictation, reading her Christmas mail, and trying with all her might to communicate. The other night the words , "oral care" came out of her mouth when it was time to get her teeth brushed. Her Aunt Christine was there to follow that directive!
We will be busy creating new heartfelt memories for our Christmas this week. Rejoicing in the goodness of our lives has got to be our only focus! Reality hits on the 26th when I meet with the case worker for Medicaid. This application is a massive amount of paperwork which I am sure no matter how much I have together it will not be enough! We are hopeful that Caitlin will qualify because it will mean that her care in the hospital can continue after her insurance coverage for acute rehabilitation runs out January 12th. She has insurance coverage for other things but will have exhausted the once in a lifetime coverage for acute rehabilitation. Once again the learning curve has been huge for me as I learn about the assistance we will need in Caitlin's life...our hopes for this being temporary are still high! But for now it is our reality so I am working hard to do it all correctly without a lot of confidence, I might add.
Enjoy the holidays with much appreciation for all the goodness that has been bestowed upon you!

Message from Caitlin!

Hi everyone!
Love Caitlin

Caitlin typed you this love note mostly by herself. She had me on the backspace button when she had difficulty hitting the correct key. I was thinking she would want to hunt and peck with one finger but oh, no, Caitlin had her left hand spread across the keys in the correct keyboard position. She then moved her left hand to the right side of the keyboard in a similar fashion. It was a lot of work, BUT, she did it!!!

Today Caitlin was creating new signs and signals to answer questions. Yes was now her left foot raised a bit. No was her left knee out to the side. Or perhaps yes and no were head shaking and nodding. Then again it might have been her eyes opening and shutting for yes and moving side to side for no. She just thought she was SO VERY funny! We were feeling rather ignorant as we had to keep looking for the correct signal!

It was a good day overall! It is just so great to see her smiling so much. The more she communicates the less frustrated and tearful Caitlin is. One step at a time!

Cheers!

Today I want to shout from the highest mountain that Caitlin's feeding tube has been out now for twenty four hours and her catheter has been out for about ten. All systems are working! Yesterday I wanted to jump off the highest cliff screaming obscenities! I stood and watched the feeding tube working it's way out of Caitlin's nose each time she took a deep breath. Then I listened to her crying as she pointed to her chest. She definitely was able to pinpoint the movement of the tube. Talk about feeling helpless to rectify the situation...not a position a mother is supposed to be in. The nurse called the doctor to order another feeding tube. I strongly suggested she call the doctor back and ask to give Caitlin the night off the feeding tube until I could speak with him in the morning. He was willing to give it a try and I think it worked well today. Caitlin ate more and drank more than she has in the last two weeks while we have been attempting to get her to eat! The pride on Caitlin's face today was wonderful to see!
The laughter that rang out of room 406 tonight was just so fun to hear. Caitlin's co-workers from Sierra Eye Associates brought over ornaments for the infamous Christmas tree. Each person was photographed with a red and green striped hat on. Then the photo was decorated as an ornament. While each ornament was hung on the tree by Lisa, Holly and Karen had a story to tell about the photograph or the co-worker. Caitlin just laughed and laughed. In between laughs I was feeding Caitlin. She ate a lot! It was definitely a great night for Caitlin! It was a sigh of relief night for me...to know bad is to also know good. Yesterday and today were exactly that!
The kindness, love, and generosity expressed by all at Sierra Eye Associates toward Caitlin is incredibly amazing and heart warming. As a parent you tend to think no one will ever love your child more than you but I think those folks at SEA are changing this belief of mine. Caitlin is so very loved by many others as well. The nurses at the hospital remind me of this every day and include themselves in that circle too! We can only say thanks and thanks again to all of you for continuing to pray and sending positive thoughts Caitlin's way!

Tis the Season!

Christmas has always been a very exciting time for Caitlin. She worked hard to make it extra special for so many others by adopting children in a family from my school and even standing out in the freezing cold to pass out gift bags of toiletries to homeless people. That is to say nothing of how special she made Christmas for Michael and I every year. Yesterday as I went out for my first Christmas shopping,it hit me very hard about how much I miss doing so many of the things Caitlin and I have traditionally done together at Christmas. Thankfully, Dagmar, my dear friend, came with me so I was able to hold myself together in one piece. One of our usual silly things to do was to ask Sadie, our dog, if she wanted to go shopping. She would immediately run to the back door to get in the car. We always took her with us and she would wait patiently in the car as we ran in and out of stores. We would just giggle at how much Sadie was one of the girls!
So, in creating different Christmas memories for this year, my friend and Mal's mom, Deb, put a large paper tree on the wall of Caitlin's hospital room and wants to have everyone who comes to visit make an ornament to tape on the tree. I would like to add that anyone can make a paper ornament at home, drop it by and visit for a few minutes in the evening, or send it to Caitlin at the hospital and we will hang it up on her tree. The hospital address is St. Mary's Regional Medical Center, 235 West 6th Street, Room 406, Reno, Nevada 89503. We want to fill that tree up with good cheer to get Caitlin through the holidays!
Caitlin was up in the wheelchair today helping to hand letters to Deb as she was taping them on the wall. Deb would make a great PT because she was so positive and yet still demanded that Caitlin stretch that left arm higher and higher. Caitlin was laughing with Deb at their antics. We all missed Mal's participation in this decorating event but she has gotten a yucky cold that is going around town. Terry Christensen visited and immediately got put to work. Little did she know how much fun she would have! Caitlin wrote her name and the year on her ornament which is a great accomplishment for this weekend to celebrate and rejoice in!
Michael hooked up a brand new Wii for Caitlin today. They attempted to play the games that came with the Wii but they seemed to require too much movement. They were the tennis and other sports games. Michael has been doing research on how successful using the Wii is in stroke recovery. I know that it will be helpful to Caitlin as time goes on.
I think there is so much to focus on each day but the hardest is getting Caitlin to eat and drink enough. Her dad, Aunt Christine, and I have been trying our best but it is difficult when your best isn't good enough. There is talk of Caitlin's catheter coming out tomorrow and the possibility of taking the feeding tube out on a trial to see if Caitlin would get hungry enough to actually eat more than a half cup of food at one sitting. It would be so nice to see Caitlin's beautiful face without her "elephant trunk"! We are all trying to KEEP ON KEEPIN' ON!

Moving Day was Successful!

Caitlin is back in room 406 at St. Mary's surrounded by many familiar faces and loving hearts. She was moved into her room and withing about 15 minutes she began her CT. This continued for about an hour. Next was lunch and then at 1:00 she was whisked away to physical therapy. This was followed by occupational therapy. Needless to say when Caitlin returned to her room at about 2:45 she was tired! That is what I love about Caitlin being in the Rehab Unit. She is very BUSY! Today it was suggested that she eat cheesecake to load up on calories. It is the right consistency and will definitely satisfy her caloric intake to work away from the feeding NG tube. We have a wonderful connection with Cindy Etcheverry, a head decorator at the Eldorado's bakery and a lifetime friend. We just gave her a call for a piece of cheesecake and she appeared with four different kinds and enough cheesecake for about 30 people! Guess who had a huge smile on her face and was able to eat a whole piece! I was told by one of Caitlin's doctors to not think about nutrition just about calories. I guess we did that very nicely tonight. Caitlin ate and immediately fell asleep. Cheesecake Coma! I am pushing food and at every meal giving Caitlin the pep talk about needing to eat 1600-1800 calories a day to get the feed tube out. Another little piece of the uphill climb. Another day that Caitlin succeeded in her climb!

Headed to Acute Rehab!

Tomorrow is the moving day! Caitlin will be returning to the Acute Rehab Unit at St. Mary's in room 406. She will be occupied with all her therapies throughout the day. When you pair this with rest she is occupied all day long! We are excited for Caitlin to be taking this next step. We have made so many friends in all the nurses and assistants on the fourth floor North that it will be with mixed feelings that we move once again. The TLC from everyone on the fourth floor has been tremendous and a huge part of Caitlin making growth in some way each day.
One thing we know for sure is a bigger room and a nice big window are going to be so very nice!

Weekend Warrior!

If you have been to Caitlin's room at St. Mary's you know that it is quite a distance to the elevator. When Clare and Jess, Caitlin's college roomates, arrived Michael, Tim and I left so the girls could visit. We could hear Caitlin's laughter very loudly all the way down to the elevators. Clare and Jess are just about the two kindest women anyone could ever meet. They showered Caitlin with love and a sense of all that she had shared with them during their college days. Catching up with them was so important because the weekend after Caitlin's first stroke she was to have been in Seattle reunioning with Clare and Jess. Clare has been in Africa for the last three years, Jess and her husband visited Clare in Africa, so together they had many pictures and stories to share. The smile on Caitlin's face the entire weekend was great. Her heart was lifted and only contrasted by the tears we all cried this morning when the girls all had to say good-bye. Once again we are reminded how blessed Caitlin is to have such good friends in her life.
Today Caitlin got a pedicure and a manicure while in her hospital bed. Denise, a friend and colleague of mine, did the deed. Caitlin was excited and Denise loved pampering Caitlin. It was a relaxing event for Caitlin as she got her fingers and toes looking holiday ready! Today is also the start of Caitlin's seventh week in the hospital. So much has happened and yet so much needs to happen that I am not sure it is good to be counting on more that just today. We are working on getting Caitlin to eat more. The hospital pureed food leaves a lot to be desired for the picky eater Caitlin is. Her feedings with her feeding tube are being cut back in hopes of increasing her appetite. This seemed to work tonight as Caitlin ate pureed chicken and cranberries. I think it helped that she had visitors from Sierra Eye Associates to concentrate on rather than the taste and texture of the food! As always I try to imagine how I would feel in Caitlin's position and I know I wouldn't have the tenacity and courage that she does. When Caitlin gets discouraged and frustrated she will cry and somehow through her tears she will still be able to laugh and crack a smile. It was great when Clare and Jess said that Caitlin's spirit hasn't changed a bit. It is that very spirit that will drive her recovery day by day!

A Stand Up and Cheer Day!

I can't begin to tell you the excitement and awe that I am writing with tonight. Last week I had worked with Caitlin on letters after watching the communication therapist attempt to have Caitlin identify letters with a yes or no. It was not a successful experience for the CT nor for me. I was fretting about this all week but didn't want to stress Caitlin by working on this. With this anxiety inside I watched as the CT put a cup and a spoon on the hospital table. She then held up a card with "You use this to stir your coffee." She told Caitlin to read the card and pick the correct object. Caitlin immediately touched the spoon. Then the CT put a hammer and a screwdriver on the table. The card read "You pound nails into wood with this." Caitlin immediately touched the hammer. The CT did this activity with different objects and sentences about 8 more times. Each time Caitlin just looked at the card and picked the correct object. I was astounded that this was happening. My girl could read silently, process the answer, and then move her hand to touch the correct object. We were cheering! Caitlin glowed with pride!

My stand up and cheer for myself occurred last night when I was told that I could have had comped valet parking at the hospital for the last five weeks. Today I got my very special yellow card to do exactly this. It was great not to be walking in a dark parking lot by myself at the end of a long day shivering and shaking from the cold and a bit of fear. I had been calling Dagmar every night once I got into my car so that she would know I was safe. If I didn't call her by 8:30 she was tracking me down. Thankfully she is a very conscientious friend!

Caitlin got casted today for orthodics with an ankle support type brace that she will be wearing inside of her shoes. This will be exciting for Caitlin to put on shoes when she finally does. It will make her physical therapy more successful as well because now she is attempting to push her foot across the floor in "boots" that she wears to hold her ankle in a correct position. These boots are big and clunky but very helpful in preventing drop down of her foot (where her toes are pointed downward instead of her having a flexed foot).

Learning about how one's brain heals and recovers is a fascinating lesson I never would have chosen to learn. But since the adversity of Caitlin's stroke came upon us I have a whole new respect for life and all that I have always taken foregranted. I couldn't think of a better teacher for me than my sweet Caitlin!

Working Hard and Playing Hard!

With every physical therapy session I am amazed at what Caitlin can do. Today she was stood up and walked, with much assistance, eight steps to the door of her hospital room. It is great to see her upright. The therapists say that each day Caitlin is physically doing more of the work in sitting and standing. Of course after she gets back in bed she crashes!
Today both the OT and CT worked with Caitlin on feeding herself and swallowing the food. But give the girl cream of wheat cereal and the eating doesn't go very well. Give her a chocolate shake and there is a whole different level of motivation to get that spoon to her mouth! During dinner tonight Caitlin's friend, Fatima, was there. Caitlin always says Fatima is making Caitlin fat because Fatima cooks good food and shares it with Caitlin at lunchtime. Once Fatima saw Caitlin eat tonight she went right home and made her some rice pudding and her special rice. Fatima was going to puree it and bring it for her breakfast tomorrow morning. I am sure the eating of breakfast will be a much bigger success!
While visiting with her dad, Caitlin got the biggest kick out of using a laser light. She and her dad laughed and laughed as they shot the laser out in the hallway at people as they walked by. Caitlin was using it tonight and had a great aim from her bed out into the hallway! We put George and Debbie out there as the targets! When Debbie was talking about Manogue's upcoming victories in basketball Caitlin took her thumb and index finger and formed an "L". She then picked up her hand and faced it at Debbie for "Loser"! We got a great laugh at that one!
So many connections and so many discoveries are making each day worthy of celebration!

Monday, Monday!

After physical therapy, occupational therapy, and a shower Caitlin was exhausted and sparkly clean. She slept right through communication therapy...the therapist tried but Caitlin only had a smile for her and then crashed! She slept through lunch as well!
Unfortunately her feeding tube got clogged again so it was replaced while I was at the hospital. I was brave in that I had Caitlin squeeze my hand when she was upset. I had to hide my face on the bed rather than watch. It took three tries and was in. Each time this is done an X-ray has to be taken as a follow up to make sure the NG tube is correctly in place. I think having an X-ray in bed has to rank right up there with the feeding tube being inserted. Lying on the film case was difficult as well. I just can't believe how tough Caitlin is!
Each evening I have been giving Caitlin a massage of sorts. Tonight after I worked her arms and legs and massaged her my arms felt as if they weighed about 50 pounds each. I am definitely getting a good workout! I am not sure how much I am helping but I love to leave the hospital knowing Caitlin is calm and relaxed.
Each day I feel as if we must work to give Caitlin a sense of independence back. Today after feeding her I had Caitlin attempt to get a fork to her mouth. She surprised herself in that she could do this. I did a happy dance and she gave me a mother look. I know that she will be working hard to feed herself this week. Smile a smile for us and if you feel so moved do a little happy dance for Caitlin too! I know she will feel it!