We went back home and visited over Labor Day weekend. Showed a guy our house. He seemed very interested, and is supposed to give us a yes or no this weekend if he has decided to buy it. That will be a huge weight off our backs to get that off our hands. We had a good time visiting but it went by SO fast it didn't even feel like we were there a day. We went out on my grandparent's boat and enjoyed the weather. I think it was only like 72 the day we were on the lake so it was very nice.

    Well Carson is doing great. His seizures seem to be under control. We just got his medicaid straightened out and approved and we will have Josh's company insurance next month. We took him to visit Kelly Thelen today. She was the nurse practicioner that care for Carson in Madonna last year. She has gone into Practice on her own and is going to be our PCP here in Nebraska. Carson is in the 50th percentile on weight and 25 percentile on height. Way off from pre-accident, he was always in the 90 percentile then. Kelly said Carson looks great and is very healthy but he has a slight ear infection and his throat was alittle red so she put him on some antibiotics. Kelly also re-issued all our medicines under medicaid so when I went to the pharmacy tonight to pick them all up it looked like I robbed the place. 

    Madonna wants to drop Carson down to one day a week. We are not happy about that and told them it would have been nice for them to tell us they only wanted to treat him for 8 weeks and then drop him when we started. We could've not completely moved up here and had insurance trouble or switched medicaid and changed everything. Anyway they want to have a family meeting to discuss Carson's options. I don't really see the point. I have argued it with Kilee (our PT) and Erin (our OT) respectfully. We have agreed to disagree so they want their boss to sit in on the family meeting. WHY? She's going to say the same thing as they have and the issue has apparently already been decided by the therapy team. I don't see arguing about it, they aren't going to change their idea to cut him back. They say they think Carson does need as much therapy as he can get but he's not showing "ENOUGH" progress for them to keep him 2 days a week. We have decided that we will look into other therapy options here in Lincoln. It's truely a love/hate relationship with Madonna. I love everything they have done for us but I hate that they are in a sense giving up on Carson. I even offered Kilee $50 a session to come to our house and do therapy under the table. I threw it out as a joke but, legally I don't think they can do something like that, but I hoped maybe.

   OH BIG NEWS**** Carson is "fixin" to start Preschool at Adams Elementary. Its through the Early Child Education program through Lincoln Public Schools. Special needs kids can get therapy once a week through the program at home, plus other things are available like respite care and free daycare. The therapists do so much more than just therapy with the kids. They were my lifelink to getting everything set up for Carson here. Anyway the Pre-K program will be 2-3 hours a day, Monday through Friday either mornings or afternoons. They even have a bus that will pick Carson up here at home, plus I'm allowed to go and volunteer in the room or visit anytime I want. 
   Carson has been saying MOM and MOMMA and Uh Uh and OW. Ow is usually reserved for stretching & therapy. Its not alot but it is purposeful and becoming more and more frequent. Oh he said DAD the other night. So maybe it is all still coming back. Who knows.

    All in all things are working out ok. The dust is starting to settle and things are calming down and falling into place here. I miss home but we are trying to give it our best up here. Our town (Ponca City) died. Jobs are so hard to come by and the people who still have had their hours cut back so much they can collect un-employment. So we won't be going home anytime soon.

   

Hey everyone,

Well here goes. Everything has been crazy for about a month now. We went to St. Paul for Carson's evaluations at Gilette Children's Hospital. Carson slept through all his evals. It was awful, but i had some recent pictures and videos of therapy so that helped the therapists see what Carson could actually do. While in Minnesota we visited the Mall of America. Man it was awesome, four levels about 2 miles to walk around each level, plus an aquarium in the basement. We spent about 4 hours there and visited the aquarium, we barely made it through half of the 2nd level. 

  Gillette couldn't do much for Carson other than offer us 3 day a week therapy. The said he was appropriate for an outpatient rehab program but they didn't have one there. Even at 3 days a week Josh and I thought it would be alot better therapy than what he gets in Stillwater since they specialize in pediactric brain injuries. Josh and I left the evaluations with one thought. Wether Minnesota or Nebraska, we would have to move to get Carson the appropriate therapy he needs. We decided on Madonna back in Nebraska since we had been there before, they have treated Carson and know his history. On the drive back from Minnesota we made arrangements to have Carson evaluated at Madonna.

  Grandpa and I drove Carson to Nebraska last Monday. We went up a couple days early with the hopes that Carson would be awake after the drive for his evals. It really seemed to help. Carson did very well with his PT and OT evals. Speech was last for the day and that was at 4pm. He slept through that one. Not just slept, he was concked out. While visiting Nebraska we got to meet up with our friend Alexis. She was with Carson in inpatient, and then came to outpatient with us. She just turned 2 in Febuary. She is a survivor of Shaken Baby Syndrome (from the baby sitter) You can check her out on you tube by searching "Alexis Verzal". They are originally from College Station, Texas and moved permanently to Lincoln last year. Anyway we went to a special needs playgroup with the Verzal's. They go every Tuesday night, its a public program funded by the goverment. There are ton's of kids. Anyone with a special needs child can come, not oonly that, the kids' siblings can come along and play too. Its in a huge indoor play area (similar to those at McDonald's). They even have college kids (since its a college town) training to be Ot's & PT's who volunteer to come out and play with the kids. Its just a great program. We have already decided that once we get to Lincoln Carson will join the play group. It was just really nice to meet a ton of other people who share similar life dilemma's as our family. People we have something in common with, to talk about therapists, and doctors, and trials, and procedures.

  So our house went to auction last Thursday. Only 2 people showed up, and they just wanted to watch, see what it went for. Well it didn't. There was a phone in bid for $20,500. So it didn't sell. We had decided to rent out our home so if we ever want to come back we can, plus it gives us some income before we even get moved. Well, yesterday our agent's boss (owner of the company) knocked on the door and told us he had an offer, almost a sure thing. A couple (early 40's) with a handicapped child, and the wife bigtime pregnant wanted to buy the place. They want to be in a town with a hospital and like the shop in back. The guy works on computers and wants to use that for his business while being close to home. They are from Medford (less than 5,000 people). Anyway they were supposed to come walk through the house today and decide. I haven't heard anything yet, i've called the real estate guy but got no answer. His phone is off. The deal with the buyers is that they are selling their house and won't close for another 60 days or so, but have offered to pay us rent until they close, then give us a check for our asking price. We'll see. If they back out, we can still rent it so not to worried either way.  
  We have found a house in Lincoln. Its kind of a private deal, the guy isn't really into renting, but is willing to rent us a place. Its a 3 bedroom, 1 bath built in the 70's. Hoping its pretty nice since its one block off from the country club. The only thing is that the lady moving out won't be out until next Wednesday. Carson starts therapy Monday at Madonna. So we have decided to get room this weekend and stay until we can get into the house. The rooms at the Victorian Inn are nice (its where grandpa and I stayed last week) and they'll let you have pets. So we'll take our cat, and figure out something with the dogs until we can get them up to Lincoln.

  Our house is pretty much empty. We have bare necessities. Wich makes it difficult, i had to use Josh's razor to shave, I haven't straightened my hair in over a week, packed up our damn socks yesterday, only ones we have are dirty, .....gotta do laundry..., we tried to leave out stuff we knew we'd need but things have been forgotten. Oh well.

 Looks like we'll move next week or weekend. We may have to rent a Uhaul after all since we loaded Tim & Kristy's trailer and still don't have room for Josh's precious TV.

 

 Okay, well BYE.  

Well it's a new year. It was exactly 11 months ago today that Carson had his accident. I can't believe this has been my life for almost a year now. I haven't updated in a long time so here goes....
Once Carson was discharged from Madonna on August 29th, we came home to begin therapy in Stillwater. We began going to Total Health Rehab 5 days a week for Speech, OT and PT. Even though we were used to getting several hours of therapy a day, we could only get an hour and a half in Stillwater.Since they were a standard outpatient therapy facility, they typically only allowed therapy 3 days a week. They fudged  to 5 days for Carson's sake. However after being at Total Health for just a few weeks, medicaid frowned on us getting daily services. We were cut off. So we made arrangements with Total Health to do 3 days a week of therapy with just PT. Speech and OT seemed kind of a waste at the time. Carson had quit responding to the therapists and would typically sleep during their sessions. I feel its because they rarely took him out of his chair for the sessions but who knows... Anyway PT had been going great, he walked on the treadmill using a harness at least once a week. He even walked without the help of the therapist moving his legs for 60 seconds. Not long but a huge deal for us all. The longest he walked was for 11 minutes. He was doing very well on the treadmill.
   We were set to begin the 3 days a week PT regimen the first week of November. Before we could begin, we had a major change of lifestyle.....well sort of anyway...My Papa(Maternal-Grandfather) not the one involved in Carson's accident; had a pretty massive heart attack. He was discharged from the Coronary Care Unit to Hospice care at home. They discharged him in the condition that they admit most people to ICU. Carson and I moved in with my Great Aunt & Uncle. I had decided that since I couldn't work due to Carson's injury, why not go up and stay with my Papa and take care of him too. So now we all live in Wichita as one big happy family. Well except for Josh, my husband, he's still in Ponca. He left Albertson's Warehouse after 8 years, when we came home from Nebraska in September becasue he was only getting about 25 hours a week. He's been at Mertz now since Sept 15th or so. He really likes it and pulls about 54 hours a week but he hates being at home alone. I mean he's pretty much lived by himself all year. Carson and I were in Wichita a month and a half and then Nebraska for 5 and a half months, and now we've been back in Wichita since November 1st.
  When we came to Wichita, Carson and I became involved with a company called Rainbows United Inc. "www.rui.org" They do therapy for kids at home. I think the program is pretty similar to Oklahoma's Sooner Start program. Anyway the therapists come to our house once a week and do Speech, OT, and PT with Carson. They bill our insurance and if insurance denies the benefits then Rainbows does the treatment for free. Because Josh switched jobs in September, we didn't have insurance anymore, just Soonercare, which doesn't work in Kansas. So Rainbows took Carson for free until we get our new insurance benefits. On top of the in-home therapy, Rainbows offers Aqua Therapy and also contract therapy through Wesley and St. Fracis Hospitals here in Wichita. Since St. Francis is where we spent all the time in the PICU I decided thats where we'd like to go for contract therapy, if they felt Carson needed it. They do! We should be starting that sometime this month. It's just therapy services "contracted" through the hospital. Our therapist said it should be a more intense and more of a daily type therapy that Carson would benefit greatly from.
   Things with my Papa have gotten pretty bad. I went home for 2 weeks for "Christmas Break". I got my house clean. Since Josh is a bachelor again I guess he's forgotten how to clean up after himself. Oh well. When I came back up from Christmas break on Monday, Jan 5th things had really declined. Papa had taken a fall last Friday and fractured some ribs. Hospice was pretty sure he'd also had a small heart attack. By Tuesday night things had gotten so bad Hospice brought in Special Services at night so we could get some sleep. As of today (Saturday) Papa is just sleeping and Hospice beieves it won't be long before he passes away.
   Thursday (Jan. 8th) Carson had his first AQUA therapy. We hadn't done Aqua Therapy all year because we'd been told we couldn't submerge Carson's Mickey Button. Turns out we must have heard wrong because when I finally called the surgeon who put in the Mickey Button she said she didn't know where we got that information but that there was no reason we couldn't get it underwater. So i was super excited to get him in the pool and see how he'd respond. Carson was by far the worst injured child in our therapy class. Most of the exercises had to be adapted for him and we got a therapist all to ourselves. Carson did very well. He was fussy in the beginning but by the end of the 45 minute session he had relaxed and the teachers were impressed by how well he did. They said usually the new kids in the class only last about 25 to 30 minutes before they get to tired and upset to finish. Carson was wide awake and I think could have lasted longer. He slept most of that day. The therapy was bright and early at 9 am. (Thats early for me since I don't work anymore) So by the time we got back home and got something to eat Carson was ready for a nap. Speaking of that I'm pretty proud of myself. I haven't used Carson's Mickey Button since last Sunday (jan. 4th). Carson has been eating orally great, he still has to have between juice & nectar thick liquids. We've discovered he loves Orange Julius'. YUCK... When I had called the surgeon about Carson's Mickey Button I had also asked her when we might be able to get it taken out. She said since we were getting into Winter she'd like to leave it in just in case he got sick but as long as he maintained weight without it they'd probably take it out come Spring. Well Spring is almost here and I can't hardly wait to get rid of that thing. It gets crusty and red and tender. Its just a pain.
   I don't remember if I told y'all but Carson went to see a Neurological Opthamologist in October. They found damage to his optical nerves and said his vision in his right eye is pretty limited but that he didn't need glasses and they felt he could see the largest letter on the eye chart. Not sure if that was good or bad news but whatever.....doesn't really matter to me.
   So Carson never got back any words from the subdural hematoma. He does cry if he's unhappy and screams if he's really unhappy. The only time we've seen him smile is when he has one of his 5 or 6 seizures a day. Anytime we talk to him and he concentrates he will go into a seizure. Really any kind of stimulation he concentrates on causes seizures. He still takes Keppra for his seizure activity but we have discontinued the Baclofen that was used for his muscle tone. Using even the lightest dosage of the Baclofen would knock Carson out for most of a day. He has some tone issue but he's nowhere near needing medicine for it. We go back next week for an EEG and Neurologist appointment. We haven't seen them since September and haven't had an EEG since July. We go back to the Neurosurgeon's office for an appointment in Febuary. That will be our 1 yr check up with him.
  Carson could only hold his head up for about half a minute when we left Madonna on August 29th. Now Carson can hold his head up for anywhere from 2 to 5 minutes. I've been really working on the head control. Hopefully his trunk control will follow soon. We have a whole therapy place set up at home and I try to work with him for an hour or so every day. His hamstrings are still just as tight as can be....he usually bawls when I stretch them. He still can't grasp or hold onto anything except my finger. He still can't walk or sit up on his own. He does still sign for More and all-done. (THANK YOU MS. LAYNE) He tries to talk and sometimes I think I can read his lips but I don't know. He still loves to be sang to and listen to music.
  When we had our evaluation with Rainbows the therapist felt he was functioning above a 6 month old level but not quite at a 9 month old level. They also found out that my degree was in Early Child Development and told me that I would be a great person to have on their staff. I was very interested to find out that if I were to take a job with them, not only would our family go back to a two person income but it would pretty much bump Carson to the top of the waiting list for their facility. That would be the same facility I would be working at. So I have applied and we'll see what happens. That does mean Josh and I (and Carson) would permanently relocate to Wichita. They offer great benefits, a paycheck, and the thought of going back to work right down the hall from where Carson would be getting all day therapy. Josh definately wants to have more kids and being able to go back to work and actually have a future for myself and Carson is huge! I never thought i'd get an opportunity like this. FYI....I was pregnant in July, and miscarried. It sucked. I'm OK. So anyway, actually having a future now means maybe if it works out, Josh and I could expand our family and be ok.
  On top of the news about maybe a job, I just found out Thursday from our lawyer for my grandpas car insurance that we will finally be going to court. They have to set the date but we're finally going. And GOD BLESS ALBERTSON"S!!
Because Albertson's was self insured United Health Insurance actually worked for Albertson's. I have climbed the ladder talking to every big dog I could get. I even got ahold of the big dogs in Utah that run the whole company. Aparently they do have hearts and understood our pain. All the phone calls and emails and stress of tracking them down way back when we were trying to go to Madonna paid off. Literally. Albertson's has decided to forfeit thier half of the insurance friendly suit money from my grandpa's car insurance. Our lawyer said she has never seen a insurance company do that so someone must be looking out for us. So THANK YOU ALBERTSON's!!! The money, once we go to court, will be put into a trust fund for Carson to have once he turns 18, unless we need it for future medical needs.
  I'm telling you all, I have never been a super Godly person. I've always believed but never been a perfect Chrsitian by far. God has done more for me and my son this year than I would ever deserve. I not only am a believer but now when you see me you know without any doubt that I am a Christian and I will continue to live my life by him. For those of you who have followed our story thank you so much for everything, and for those of you who continue to ask about Carson thank you for caring. I'm sorry i haven't updated in so long or answered alot of emails. Things have been crazy. Its no excuse. I really do feel blessed to have each one of you....even people I don't know, praying for me and my son. THANK YOU ALL!!!

ps....My grandpa is doing good. I know he misses Carson more than words can say and now with us still not home its hard. My grandpa is strong and I love him very much. I miss him and wish i could still spend hours at his house every day. I know he will never forgive himself but i'll never blame him. It just happened.

Cassie Alley

Although it has been over four months since Carson Alley was critically injured after being backed over in the family’s driveway, he continues to improve daily. Carson, who was 18 months old at the time of the accident, suffered multiple skull fractures. Doctors didn’t think he would pull through and still don’t understand how he has survived. Textbooks can’t explain it. Carson went from the best possible outcome of being a vegetable with an ICU set up at home, to having all the hope in the world, talking, sitting, standing, and eventually learning to walk again. 
 Carson, who will be two on July 5th; enjoys daily Physical, Occupational, and Speech therapies at The Madonna Rehabilitation Hospital in Lincoln, Nebraska. Madonna, 3rd ranked rehab facility in the nation, had offered to let Carson come as a charity case after the family’s insurance denied their benefits twice. After two appeals and KWCH News Channel 12 in Wichita became involved, Carson’s claim was suddenly approved. Carson came to Madonna’s Acute Care Facility in March. After he became medically stable he was released to the extensive outpatient day program where he has 6 therapy sessions a day. Carson is doing so well with the regimen that therapists have recommended him to remain in the program for an additional 4 weeks. He was originally set to discharge from Madonna on July 3rd but will now stay until at least August 1st.
Carson will be home for the 4th of July festivities as well as a meet and greet birthday celebration on Saturday, July 5th from 4 to 6pm. The Ponca City Knights of Pythias are hosting the event at 2512 W. Highland and would like to invite fellow Poncans to come out, have a hotdog and visit Carson. “I’m a firm believer that we would not be here without their prayers and letting them come see what they helped accomplish is the least we could do”, says mom Cassie Alley.
Although Carson remains strong in his recovery, other children are not so fortunate. According to kidsandcars.org, backover accidents similar to Carson’s make up almost half of all non-traffic accidental deaths. “In the US fifty children are being backed over by vehicles EVERY week.  Forty-eight are treated in hospital emergency rooms and at least two children are fatally injured every WEEK.  These unthinkable tragedies are happening most often in the driveway of the child’s home and in 70% of the incidents the driver of the vehicle is their parent, grandparent, aunt, uncle or older sibling.” Statistics by Janette E. Fennell, Founder & President of KIDS AND CARS. "KIDSANDCARS.ORG" <---CHECK IT OUT!