We're on our trip

We are on our trip. Yesterday was a long day. Lots of waiting in airports. We were picked up in a limo and taken to the airport. Josiah thought that part was the best. All he wants to do is swim in a pool. We keep telling him we could have done that at home. He's seven, go figure.

Allyson is doing well so far. She is excited but tired. We are trying to resist the urge to do to much. We have one goal, her wish, other than that nothing else matters for this trip.

I included some pictures of yesterday.

Josiah's pictures are for him to share with his friend Archer.

Dana

The meeting

The meeting went great. Everyone seemed to be on the same page when it came to what they thought Allyson needed for school. We will be doing home instruction thru the summer until the start of the next school year. She is doing better in most subjects but math is still very difficult.
Taking a summer break would be like starting all over again.

We will be scurrying around this weekend getting ready for the trip. Lots to do in little time.

Dana

Big day tomorrow

Tomorrow is the big meeting with some of the teachers/counselors from Batavia High School. We are looking forward to this meeting as we will be discussing what will be done for Allyson to finish this year and get ready for next year. This is so much more important now that we know Ally will probably be doing her outpatient rehab at Drake Hospital. This is around a 45 minute to an hour drive each way for up to three times a week. Since both Randy and I work, we are going to need to make some dramatic changes to make this schedule work.

On a happy note, Allyson will be getting her wish granted from the Make a Wish Foundation. I can't reveal the details online until it has already happened. But those of you who know her well, you know what she loves and her idol. The whole family leaves next week. She will be very happy come Wednesday night.

Dana

Ally's 24 hour pass

Allyson was able to come home to visit this past weekend. It was wonderful. She did great.

Ally has very little memory from before the surgery. She remembers the important stuff like, American Idol, Rainbow Girls, famous faces and cute boys. She doesn't remember family members and friends. Don't feel bad if she doesn't remember you, she doesn't remember either me or Randy except from after the second surgery. She knows we are Mom and Dad but doesn't have memories. The doctors say they will come back but don't know when. We now they are in there - example, when we went to church, she didn't remember the building but went right to her dad's office and was able to find the hard to find light switches. There is hope.

She is scheduled to come home on Friday, April 25, 2008. Everything is looking good for that date.

Dana

More rumors....

I really don't have anything concrete to tell. Most of what we know is hearsay. The nurse or another staff member will tell us they heard it or something.

So here is the latest "rumor" - Allyson will probably be staying until the original dismissal date of April 25. She may get a 24 hour pass this Saturday. It's to see how she does "out in the real world" and gives the therapists a chance to deal with any issues prior to dismissal.

We have recieved our first letter from our insurance questioning whether they will pay. I assume this will not be the last. We have a very nice person at the hospital who assures us that everything has been pre-certified and we shouldn't worry. I'm sticking with that until I no longer have to worry about Allyson. I can't handle my mind exploding right now.

More rumors later

Dana

Ally starts school at the hospital today.

Today Ally starts 45 min classes at the hospital for school. They are working on her writing skills. She is excited. This week 3 teachers from her school will be visiting her to see the rehab therapies she has been doing. It should be an eye opener for all. Allyson will be going back to school this year but I don't think she will be able to re-join her regular classes this year. She is doing great but it would be too much.

Dana

Ally is doing great.

Allyson's therapies are all going very well. She is re-learning very quickly. She is still weaker on her right side but is gaining strength every day. I really don't have much to report. This is actually good news. The less news at this point usually means less has gone wrong. She just needs to keep getting stronger so she can go home. once home, she will have outpatient treatment. At least we would then be back to "normal." What does that word mean anyway?

Dana

Is Ally shrinking????

Allyson is 5'3". With the exception of the two guys on the end , these guys are over 6' tall with the tallest three over 6' 9". Can you name the team Allyson had the chance to meet yesterday at Cincinnati Children's?

Big steps and little steps

Allyson has made so many big steps this past weekend. She is speaking some words, using her right hand and leg more often and making strides in her occupational therapy. She is using a dry erase board to help her with words or questions she can't verbalize. The scar is healing nicely and her hair is growing back faster than we expected.

Allyson is the talk of the floor today because of her progress. People who left on Thursday and came back today can't believe the difference. She is like a different girl. To randy and I, She is the same old Ally we always known just a lot quieter. She is doing so well the doctors are already talking about reassessing the April 25 discharge date. That would be nice.

Take care,

Dana

Allyson Speaks!!!

I waited to posted this so that Randy could tell the family and church members this morning the wonderful news. Allyson began speaking yesterday. She is still having a great deal of trouble but can read words to you and does sometimes answer questions with standard type answers. This happened as the therapist her if she was frustrated with not being able to talk. Ally touch her yes word card. The therapist then brought out a sheet that had letters and a picture of something that began with that letter. She asked Ally to try to make the "a" sound. Ally looked at the letter with a picture of an apple and said apple. She read almost the whole alphabet by reading the picture word, like apple, bee, cat, etc. She still has a long way to go but this is the biggest step.

Dana

I had major computer trouble

Sorry for the long lapse in blogs. I had some computer trouble. Well, most people would have been OK, but I'm more technically challenged than I would like to believe.

Allyson has done very well the last few days. She is walking well. She has trouble seeing things/obstacles on her right side so that is what they are working on now. They have begun to get her to write some. she is not doing to bad. Her spelling stunk before this, so anything is good now. ; ) She is eating well, also. Speech is still a major obstacle. We ask yes/no question which she answers by squeezing our hand for yes. She did say OK twice but is was a spontaneous utterance not really speaking. she has to train her brain to make her vocal chords talk again. The literature says 4 - 12 days for speech to return. We are on day 5.

The team gave us a goal discharge date of April 25. This could change but is the goal for now.

Dana

The first day of Rehab

Allyson survived her first day of rehab. She is very tired. Her day totaled about 5 1/2 hours of speech, physical, and occupational therapy. She made many firsts today. Today she walked up and down the therapy stairs, moved her right arm and leg on command and stood up without much help. She was exhausted by 4:00 pm when her rehab day ends.

Tomorrow, Randy and I have a meeting with the doctors and her therapists to discuss a plan for Allyson that will include a timeline for coming home and/or if she will be eligible for outpatient therapy. That meeting is at 12:30 pm. I will let everyone know what happens.

Tomorrow evening, Josiah and Sarah will be coming down for a family movie night. Josiah is excited. Sarah is, uh, "thrilled." I think she would rather just spend time with her sister.

Dana

Wednesday has been interesting

Today we have moved to the rehab floor - 4th floor. Ally is getting OT, PT, ST 2x each day for 45 minutes each session. She is a detrimined girl. With determination comes stubborness. Now I'm not sure where she gets this stubborness but it couldn't be from me, must be her dad...LOL ; ). SMA syndrome causes both apathy and impulsivity. So Ally either really is into the rehab or is really not into rehab. There is not an in between. Because of the impulse issue, one of us will need to be here at the hospital with Ally 24/7. She doesn't realize some actions may injure her. Just getting out of bed without assistance is dangerous because of the weakness on her right side. So Randy and I must be here to help her. She hates it. The therapists are talking about a picture board so she can point to the things she wants. Randy and I keep joking about a box that says "GO AWAY, insert name!!!!" Ally is very independant. She can't wait to get that back.

Dana

Tuesday was a very busy and eventful day

So much happened on Tuesday, I'll just start at the beginning of the day and move on from there. Dr. Mangano came in first thing and said they were going to be very aggressive with Allyson's treatment. She has what is called Supplemental motor area Syndrome. She can't speak or move on command. He ordered speech, occupational, physical therapy. At this point, she still had barely even woken up.

By 1:00 pm we were in our room on the 7th floor. The physical therapist came in first. She got Allyson to stand with help. Then the speech therapists came in. Allyson pointed to what she wanted and drank and ate applesauce and a cracker. While the speech people were there, our friend Joyce Conley came to visit. They asked how she knew Allyson. She said she was Ally's district advisor for Rainbow Girl's and that Ally was one of her Grand officer's. She then said how special she thought Allyson was. Ally got the biggest smile. The first time since before surgery. It was amazing.

When the occupational therapist came, she and I were just talking. Allyson begin fidgeting. Julie walked over and talked to her. Before I knew it. Allyson with Julie's balancing assistance was walking to and from the restroom. I know this is more than Ally would want me to tell but apparently with the right motivation, she is determined to do things the way she wants, not the way they think she can. Go Ally.

I came home last night to be with Sarah and Josiah. I got a call from Randy saying Allyson was eating handfuls of cereal by herself. She was still hungry so they ordered applesauce and grilled cheese sandwich. She ate every bit. By the end of the evening, She was able to swallow her meds without help.

These are true miracles. Yesterday morning, she couldn't stand, walk, swallow, or even smile. By evening, she could do all these things. Life would be less beautiful without Allyson's smile, wouldn't it?

God Bless

Dana