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

The first snag in the road...

Allyson has hit the first snag in the road to being seizure controled or free. The surgery itself went very well. They resectioned what they could and left what needed to stay.

As she is waking up from the surgery, she is unable to speak or move on command. The surgeons truely believe it is temporary. The next 24 hours will tell us more.

Keep praying,

Dana

Monday Morning

Allyson has had a rough morning. We woke up around 5:00 am to Allyson having a generalized seizure (grand mal) . even an hour afterwards, she was still very agitated and her head hurt badly. The resident ordered Dilantan thru her IV. It should take about ten minutes go in. After about 1 minute, Allyson began to vomit. I made them stop the drug. She got better right away. I wouldn't let them start the drug again until someone woke up her doctor. I'm like that, you know. Well her doctor sided with me. By this time, it was about time for her to go to surgery, so we opted to wait.

She went to surgery around 7:45 am. Surgery began around 9:00 am. It will be around 4 hours till she is done.

Will let you know more soon.

Dana

Sunday Night

Sorry, I haven't blogged today. It has been busy. Lots of visitors and an evening of brain mapping. We've just been really occupied.

Monday's surgery is set at 7:30 am. It should take around 5 hours. After surgery, she will be in ICU for 24 hours. Then she will be moved to a regular room, but not the room we were in this past week.

I will update everyone as I can.

Dana

Saturday

Saturday has been pretty slow. allyson hasn't had any more seizures. We have had lots of visitors.

The Doctors have pinpointed the spot of the seizure activity to a small spot in the frontal lobe. Randy and I are being cautiously optimistic because the spot is outside both the speech and motor areas. Based on the current information, Ally's doctor believes that they can completely get rid of her seizures if they take this spot out. Again, we are trying not to get too excited yet. But the idea is exciting.

Brain mapping is set for tomorrow. This is when they use electric impulse to see what happens with that part of the brain. The hope is that nothing happens which means the section doesn't control anything (which is what they believe.)

Hospital life is beginning to wear Ally down. She is feeling better which makes her want to get up and move more. Since she is wired to the wall, moving is difficult as the I.V. pole and large heavy pouch with 72 grid wires have to travel with her. The farthest she can travel is the restroom. Randy and I get out as much as we can. One of us has to be here all the time. Randy will be at church tomorrow, so I will be here to 2:00 PM or so.

If things go as planned, after surgery Monday, Ally will be in ICU for 1 night then on 7ANorth until we go home.

God Bless

Dana

SEIZURE!!!!

Around 2:30 PM today, Allyson a seizure that leasted about a minute and a half. The neuro docs were pleased with the readings they received. This relieves some of the pressure we were all feeling, most of all Ally. If she didn't have a seizure soon, things for the 2nd surgery on Monday would begin to have to be delayed. Talk about pressure!

Ally has also been slowly dropping her blood count numbers. We have been told if they don't come up by Sunday she will need a transfusion before Monday's surgery.

She is back on track with her pain meds. They also reinforce the head bandage which has helped a lot with her pain. She is now sleeping soundly and will be for several hours.

God bless

Dana

Lots of pain today

Ally has been in a lot of pain today. For the first time she gave it a 10 out of 10. We figured out that one of the residents stopped the Tylenol she was getting every 4 hours. So unless she asked for other pain meds, she was getting nothing. Well, the nurse practitioner from neuro set them straight. I believe the statement went something like " she just had her head cut open, she should be on round the clock Tylenol til Monday! Give her a break!" Go Nurses!

Ally is really getting down. I think the pain and lack of seizures is wearing on her nerves. She's crying a lot. I'm going to get my sunday school class to make her get well cards. maybe that will help. It's tough when you can't do anything to fix the problem.

Dana

Thursday Night

Ok - no seizures yet. Ally has now been taken off all of her meds. We are hoping for a readable seizure tonight.

She has had a much better day. Her head hurts when she lifts it off the pillow. The wires pull from inside her head. She had a lot of grids put in, 72 is more than the norm. The doctors needed to be thourough because of the difficulty of their locations. anyway, she hurts but still is only taking tylanol plus she has had 3 pain pills since monday. Like I said before, I take more drugs for a hangnail. She is a trooper.

Thanks for all your cards and prayers

Dana

Thursday

Today has been uneventful. We are waiting for Allyson to have a seizure. Like any teenager, they never do anything when you need them to do it. So we wait...and wait...and wait.

Ally is in a lot of pain. We are trying to keep her comfortable. She has to stay awake during the day. She does not want to co-operate, but she's trying.

More Later

Dana

Better news

The doctors think they have figured some of the trouble out. Rather than swelling, Dr. Mangano thinks Ally is reacting to the grids as an irritation. This is kind of like when you get a pebble in your shoe. He is hoping she will be better tomorrow.

So far tonight she has been awake since 8:00 pm. Which is the most she has been up all day. If she keeps the awake time, she be back on track by tomorrow.

Randy and I are just glad there isn't really any swelling like they originally thought. Obviously, that would have been bad.

More Later

Dana

Swelling part 2

They have done the 2nd csan. There is no change from the 1st. That is good. Allyson has woke once and been very alert for around 20 minutes around 3:00 pm. Since then she has been semi-awake and/or asleep. The Neuro team doesn't seem to be in the room when she does the weird stuff, always the pediatric team or a nurse. At least we know from the csan that it is not getting worse. It could just be pressure from the swelling. They will continue to monitor it closely.

More later.

Dana

Swelling

From the beginning, the surgeons told us to expect swelling. I always assumed they meant face or head. Well, this morning, Allyson was not responding well to commands and the neuro exams. The commands are about "who's president?" I suggested asking "who's still in American Idol?" if they wanted her to get it right.

They did a csan and found what they call a "mass." From what I get from the explanation, it is slight swelling inside. This is not abnormal except that Allyson was very alert all day yesterday then went downhill late last night. the plan is to watch her till 2:00 pm and do another csan. Check the difference and go from there. The neuro checks are happening every hour instead of every 4 hours.

The long and short is she is not doing want they hoped for surgically. So we step back and fix that first then move forward with the rest. Allyson is a very determined young women who wanted this procedure very much, maybe more than her parents. She's a fighter. she will do well.

More to come.

God bless.

Dana & Randy

lots but yet nothing happening...

Things are going quite well today. Allyson is in less pain. Tylenol is all she is curently taking for the pain. Boy, do I feel like a wimp. I take more drugs for a hangnail.... She is swelling a little more this evening. I think that will get a little worse before it gets better.

She has been up twice. She needs to eat but hates soup, jello and pudding. We are trying ice cream and sherbet.

She hasn't had a seizure yet. They need her to seize with the grids in place to verify the starting spot. if she doesn't have one by the morning, they will begin cutting back on her meds to force a seizure.

We will know for sure how bad she feels at 8:00 PM tonight. If doesn't watch American Idol, we know she is really feeling bad.

God bless

Dana

Rough Nite but good news

Ally had a bad nite. They had to change her pain meds from every 4 hours to every 2 hours. the surgeons had to cut the muscle that controls her jaw to get to her brain. Every time she opens her mouth, it hurts. Even sedated, ally loves to talk. It was the first thing the surgeons told me she was doing after surgery. Direct quote "Allyson is awake and talking"

However it hurts to talk or eat. So we are going to need to get her to eat over the next few days. She will get to choose whatever she wants to eat, ice cream, pizza, popsicles, anything she wants. So at least I'm not trying to force feed her spinich.

Dr. Lee (the Neuro - specialist) visited ICU this morning. he said everything was looking great. Now we will proceed with the tests to make sure the doctors are finding the right spot.

Allyson should be in a room on 7A by this afternoon. She can then have visitors. She is still very groggy but will wake up for short periods of time.

More later.

God Bless

Dana

First Surgery is finished

The first phase of Allyson's surgery is done. They began today at 12:45 pm. The surgeons placed 72 grids on her left side. These grids will map her brain. The surgeons will know what functions the damaged portion of her brain controls. Dr. Lee said that he found exactly what he expected and was pleased with the outcome of the first surgery.

The rest of this week will be testing to verify previous information. She will be in ICU until tomorrow. Only parents can visit until she is out of ICU. She can have visitors after that. She should be on 7A by Tuesday if all goes well.

Dana

The night before...

the surgery is set for tomorrow at 12:50 PM. The time has changed at least 3 times. But we were assured this time was right. We have to be at Cincinnati children's at 11:15 am. The surgery itself should take about 5 to 6 hours. I will be blogging when I can about what it is going on.

After surgery, they will be trying to get Ally to have another seizure. this will allow the sensors that they set inside her head to verify the spot that the seizures start. Once the spot has been identified, the surgeons then begin to decided what the effected part of the brain controls.

Then the hard decisions must be made. There are some motor skills that could be affected by the resection. Randy, Ally and I will all be making the decision along with the doctors on what is worth risking (losing) in order to live a life without seizures. Example - Full use of her left pinky finger = most likely yes but any speech = most like no ...etc.

We will keep everyone updated as much as possible and call as we can.

Dana

Things are a little crazy here....

We are running a little ragged here. Friday, we got a call from the Elementary school saying that Josiah had Pink eye and we needed to come and get him right away. Normally, no big deal. You get drops. You get over it. WRONG! Not this time. If Ally gets it, she may not be able to have the surgery. This would delay everything another six months.

So Josiah has been a trooper. He has spent most of the weekend banished to our room. Not a horrible thing, there's a bathroom, tv, computer but no PS2. The drops 4 times a day are a challenge for a 7 year old but he is doing pretty good. This evening, his other eye began showing signs. So now it's 2 drops in each eye, 4 times a day. He hates it but understands he mus stay away from Ally and has to get better or he won't be able to get near Ally for a while.

Love and prayers,

Dana

First visit with actual surgeon

Hello everyone,

Today we had Allyson's first visit with the actual surgeon. There will be several doctor's involved. Up to now, the visit's have been with the doctor who has been determining the spot of the problem, Dr. Lee. He will be the one who sets the electrodes on her brain and verify they are in the right place for the set of tests that will be done between March 24 - 30.

Dr. MAngano, is the one who will be cutting. Ifeel that this pair is a little like the goodcop/badcop team. Dr. lee lets you know there is hope, good chances of life without epilepsy. Dr. Mangano comes in with the badcop routine which includes all of the risks and what could happen. I don't think Ally's chances are any less than they were before but the risks were just laid out for all to see. It just deflates the bubble a little.

Thanks for listening,

Dana

Allyson's Surgery has changed....

The neurosurgeon's office called today. They are moving Allyson's surgery up to March 24. Nothing is worse with Allyson, They just had a cancellation.

So the new schedule will be:

• March 24 - Surgery to place electrodes on brain.
• March 24 -30 - Tests to verify diagnosis
• March 31 - Resection will take place
• April 5 - release from hospital (approximately)

You can send her cards at:

Cincinnati Children's Hospital Medical Center

Floor - 7A

3333 Burnet Avenue

Cincinnati, OH 45229

Thank you for all your prayers and cards. We have all waited a long time to get to this point.

Dana Randy and Ally

Seizures are down to a dull roar..

Allyson is having less seizures the past day or two. She was feeling well enough to travel to Hamilton, Ohio last night for a Rainbow Installation. I'm glad because she had a good time and got to see some of her Rainbow friends. We are hoping and praying for a better week this week. She missed Thursday and Friday at school. She has become an expert in make up work.

Randy had a great sermon on HOPE today. He showed the clip from Apollo 13 when they lost contact as the astronauts were entering the atmosphere. There was a 4 minute lapse of time in which the nation watched and waited to see if they made it thru. Even though everyone in the congregation knew the answer, we all seemed to hold our breath. Our family is holding their breath and it's been a lot longer than 4 minutes. I have faith in God. I trust him wholly. I hope that His plan is the same as mine. that is all I can hold on to right now. My faith and hope..

Dana

Just a reminder, Allyson is allowed to have visitors at the hospital. Several people asked.

Not a good night...

Last night was a tough one for Allyson. She came into our room around 1 am saying she felt weird. I told it would be OK. She said it didn't feel like the normal seizures. We had her climb into bed between us. During the rest of the night, she had about 4 more seizures. The seizures were similar but were giving her an aura. this aura would frighten her. It's like the feeling when you know something bad is going to happen, but that feeling repeats with every seizure. it's exhausting.

She stayed home from school. We were hoping not to miss any school until the surgery. Oh well.

Ally says she is feeling better tonight. We'll see tomorrow....

Dana

Feeling good this week!

Allyson has been feeling pretty good this week. She managed to stay at school every day this week. She does have a sinus infection that she is taking meds for but other than that she is back to her old self. She actually wants to go out and do things. Last night she went to the winter formal. She looked beautiful. Of course, I'm not bias at all.

More to come.

Dana

We have a Date.....

We received a call from the neuro-surgeon's office today. She apoligized for the long wait. There was a mix up with Allyson's file and it was set aside.

Allyson's surgery process will begin on March 31, 2008. On this day they will place the electrodes directly onto her brain. These electrodes are similar to an EEG but done inside the skull. This test will verify the doctors are in the correct place. Then on April 7, 2008, the actual brain re-section will be done. Allyson will be in the hospital from March 31 - April 12, at least.

The good news in all of this is that Allyson will be able to take her OGT's at the beginning of March. This has been a point of contention with Allyson. When we thought the surgery would be in 2007, she hopefully would have been back in time for the test. With each delay, Allyson worried she wouldn't be able to take the tests. This last delay was just long enough to avoid the tests all together. It seems strange but this makes the last delay good news.

Thank you for all your prayers and cards. They are most helpful.

More to follow when available....