Let me back up a bit:

When Hannah got her first wheelchair, I ordered an EZ-ACCESS manual ramp, removed the middle row bench seat and installed the ramp in the 2002 Dodge Grand Caravan Sport that we had purchased the year before Hannah was born. At the time, the aluminum ramp cost approximately $900 and even though I never checked on a power equivalent - I knew money had been saved at the expense of having to manually put the ramp up and down. Now years later, the ramp has served us fairly well - I say that because Cheri has broken her hand in the last year while unfolding it to get Hannah out at a therapy appointment.

Hannah has recently gotten a new wheelchair, which is her third one to date. The new chair is taller than the two previous, which makes getting in and out of the otherwise unmodified van quite a challenge. The problem is there is very little roof clearance when approaching the top of the ramp - which makes it a challenge maneuvering the chair into the center of the van.

So, I knew the inevitable had been put off as long as possible (too long actually - because Cheri shouldn’t of had to handle that thing with her with existing back problems). The boys would do the work when they were with her, but all of Hannah’s doctor appointments and therapies are during school hours.

The search begins…

The first thing I did was probably the wrong move - however it did turn out ok in our situation, which I will explain to hopefully help others that might find themselves in a similar situation.

Without doing a single bit of research on modified vans, we headed to a new car dealership in hopes to find just the right vehicle for conversion. Here lies the mistake: Most car dealers no little to nothing about equipping a stock vehicle with a wheelchair ramp. Our initial hopes were that we could pick out a van off the dealership lot and have the sales person tell us where to take it to get it converted. Please note, most probably would not go this way - but hopefully this will help the small percentage of people that might try to do the same thing as we did. The big lesson here: Do the research first!

Here is what happened:

We found that luxurious van at the car dealership which had everything a person could want: Dual DVD Players, Satellite radio/tv, backup camera, radio with an internal hard drive which allowed you to store all your cd’s in the radio as mp3 files and much, much more. On top of that - we got the details of all the current incentives from the manufacture, which brought the price down quite a bit. Everything was looking good, next stop - finding someone to do the conversion. Luckily we didn’t just purchase the van on impulse and then go looking for a wheelchair conversion service. Our salesman did have a name and number of a company he used several years ago with another customer, which he gave to us. We told him that we would contact the van conversion company the next day for those details and then come back for the van.

The next day, I called the company given to me - which was in Nashville, TN. The gentleman I spoke with was a very nice guy that was really helpful (note: if you don’t get a person like this at a place that sells handicapped vehicles, then look further, because they don’t have your best interest at heart.) He started to explain the initial life cycle of a ‘conversion’ van, which was very different than the idea I had formed in my head.

To be continued….

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Jacob:

Joseph:

and Dad…

Yesterday was kind of tough; she was moved from the Pediatric ICU to another floor. You could tell she was in a lot of pain and she whined a good bit. We were able to keep her feeling reasonably well with the pain medication.

Right before she got moved, there was an IV in her neck that had to be taken out - Of course, I couldn’t be present when that started to take place. Cheri felt like she was going to pass out, we didn’t realize the needle was stitched to her neck so that it wouldn’t move. So it took a few minutes to get the stitches out for needle removal. The whole time Hannah had to be kept from moving - which was obviously a challenge.

Great news is that the worst should be behind us… Hannah got her chest tube removed today. Most of the fluid draining from her heart had quit, which allowed them to remove it. She does not have to use the morphine for pain anymore - it is able to be controlled using Tylenol w/Codeine.

Cheri is somewhat concerned that the doctor has already mentioned going home sometime tomorrow afternoon. Cheri’s concern is being able to care for her properly after leaving the hospital so soon.

When you have to move Hannah around in the hospital bed, she whines because she is in pain - especially when shifted around. Everyone has assured her that Hannah won’t be going home though until we are comfortable. So, hopefully the rest of the day will be good and we will have a clear understanding tomorrow on what is best for Hannah, regarding her remaining hospital stay.

Again, thank you for your continuing prayers - they certainly have been evident through the whole thing!

We went in to see her for the first time about an hour ago. She is basically still under the remains of general anesthesia - but is expected to awake later on this evening. She has a breathing tube, several IV points that serve different purposes, a catheter, and a drain for her heart.

Mom and Dad did really well through the entire process. All the prayers were surely felt! I know that to God taking care of Hannah and this procedure takes no effort on his part - but he really showed out today! I am so thankful to have that peace which only he can provide. Knowing he is in complete control is so comforting and whatever comes our way - God will be there to help us.

Please continue to keep Hannah in your prayers as she begins this recovery process. We are praying specifically that she will not develop any infections from the procedure. She is expected to be in the hospital anywhere from 4 - 8 days. Cheri will be at the hospital with Hannah the entire time she is here.

This past holiday weekend I was off Friday and the following Monday for Labor day. On Thursday, Cheri said to me “We need to take a trip to the mountains this weekend”. My first reaction was wow - too short notice! All these things started going through my head, we can’t afford it, it hasn’t been planned, etc. However, I was quickly convinced that it was a good idea and would be a good way to get in some relaxation before things get hectic.

I went online and found the condo that we had stayed in before (the kids and I can’t get enough of the pool table!). The condo’s are called GolfView and is located beside a golf course which is all on the same road as DollyWood.

There is something about when you find a favorite place to stay at a favorite destination to travel. It’s almost like an extension of your home - which definitely adds to the comfort of the vacation.

We did have a great time! We enjoyed the room, got out and went into the mountains, walked a trail up to Clingmans Dome, played some putt putt… All the things you do on a trip to Gatlinburg!

On a sad note (for my wife) we discovered that Boyd’s Bear Factory in Piegon Forge is closing in October of this year. One of the employees told us they are going back to a complete distribution sales model, which means suppling other retailers to sell their product for them.

btw, if your looking for a different miniature golf experience - there is a Ripley’s Old MacDonald’s Farm course in Sevierville. It was great and the kids loved it!

The procedure basically consists of taking a tube and inserting into a vein in the leg. The tube is run up to the heart where the procedure takes place. It's amazing this type of heart surgery can even be performed via a small incision around your groin area.

One of the tools that Doctors use to see what is going on is inserting a tube down your esophagus and performing an ultrasound on the heart. This view allows you a very good look at the back of the heart, where it is difficult to see from a standard chest ultrasound.

This morning, the ultrasound was as far as we got. The pictures showed that the hole was a little larger than expected (approx. 2/3rds of an inch). However, the halt came when the discovery was made that there was not enough tissue around the hole for the device to attach to. This is a very important requirement before the device can be used. If the device is not fully attached to tissue surrounding the entire whole, there would be risk of complications in the future. In one sense, it was good that we were able to get identified the missing tissue before the catheter-based method was used. At the same time, it was very disappointing to hear Hannah was not a candidate for the device.

This basically brings us to plan B which is open heart surgery and obviously will be more involved. There will be another surgeon who will perform the open heart procedure, probably in the next several weeks. Our cardiologist has recommended that we do this before the cold season hits which with it comes along RSV season. Our target is hopefully sometime in September - we should here from the scheduling department in the next couple of days.

We recently completed an All About Me letter for Hannah.  I thought it would be a great starting point for sharing information about Hannah and special needs information in general…

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ALL ABOUT ME LETTER 

My Name is:  Hannah Pilkinton

This report is all about Hannah Pilkinton 

I would like you to get to know me so that you will provide me with the love, support and services that I need.  This booklet has information about me that I think is important for you to know. 

About me and my Family: I have two older brothers.  Jacob is 9 and Joseph is 7 years old.  I love them and my Mommy and Daddy.  I am happy as long as I am not hurt, sick or over stimulated.  I sometimes get excited and bite down on things or the people holding me but, I don’t mean to hurt anyone. 

Special things I like to do or play with: I love to play peek-a-boo.  I love books and music.  I like anything that I can pull on.  I like strings or ‘stretchy’ things that I can pull with my fingers.  I love to swing forward and backward and I also like vibration.   

What I don’t like to do: I don’t like to swing from side to side or in circles (it’s too much stimulation).  I don’t like to be tickled or be in a room with loud “people noise”, such as clapping or raised voices.  I also don’t like to be in a crowded area.  I don’t like my hands or back touched. 

If you do this for me, I might do more for you: Give me something to pull on or a favorite toy, such as a sensory touch ball.  I also like music and strings or wires. 

My favorite foods are: I can’t eat at school because I choke easily and sometimes aspirate. 

But I don’t like or can’t eat these foods:  My mom will feed me at home.  I have special feeding needs 
 

Let Me Tell You about Me and My Family 

My Name:  Hannah Pilkinton 

My Birth Date:  June 2003 

My Family:  Mom – Cheri Pilkinton
Dad – Scott Pilkinton
Brothers – Jacob and Joseph 
 

Special Arrangements I will need 

Adaptive equipment or Special Supplies: I have a wheelchair because I can’t walk.  I need a bronco walker to move around.  I need to swing when I need stimulation.  I may need therapeutic headphones and music when I need to block out unpleasant sounds.  I use a step-by-step to participate during story time and a partner assisted communication book and Big Mac to help me communicate.  I need a special chair with a harness to sit in to do activities. 

Other Service Needs: 

I require Physical Therapy, Speech Therapy, and Occupational Therapy.  Music Therapy would inspire me to develop my fine motor skills and give me stimulation at the same time. 

Medications: I am taking Phenobarbital, Topamax, and Lamictal for a seizure disorder.  I take 1 Tbsp. of Duocal once a day for added calories.  I take Diastat rectally only when needed to stop a seizure that lasts more than five minutes.  I take Xopenex via nebulizer when I have trouble breathing. 

Allergies: I do not have any known allergies 

My Strengths and Needs

Let me tell you about my communication abilities and needs: 

I may bang on something when I want more or am trying to get sensory input.  I f I cry, something is wrong.  I rarely cry or get completely still.  I tense up and have high tone when excited or hyperfocued and will bite if someone holds me close and I am excited or frustrated.  I may make sounds but no words when playing.  I will let you know my needs by my expressions and body language.

Let me tell you about my personal care/adaptive abilities and needs: 

I wear a body brace.  I have to wear it all day but, it has to come off when I need a clean diaper.  It will need to be put back on after being changed.  I also wear braces on my feet to help me stand without rolling my ankles.  I can not eat at school due to my swallowing issues.  I do not respond to commands so, I will need to be taken to different centers.  I can’t walk so, I will need to be carried, go in a wheelchair, or in a walker.  I can cruise furniture but, can not move forward without a walker that supports me all around.  I will need a chair with a harness or, I will fall.  I will crawl away if I lose interest.

Let me tell you about my health, including hearing and vision: 

I have congenital heart disease, severe scoliosis, severe dysphasia and aspiration, seizure disorder, mild hydrocephalus, and developmental delays.  I have two lazy eyes, especially my left eye and no depth perception.  I may be farsighted.  I can hear but will not respond to name if distracted at all.  I will have another ABR test soon.

Let me tell you how I learn: 

I learn better through play therapy.  I like to play games like peek-a-boo.  I focus better if I am in a chair and am right in front of teacher.  It is not easy to get my attention and keep it.  I respond well to positive verbal intonation and music.  I like computers and buttons or switches that I can activate. 

These are my family’s concerns about me: 

My family is concerned about my seizure disorder.  I am more likely to have a seizure at onset of an illness.  However, sometimes I have one with no known reason.  All of my seizures present themselves differently; however most of the time, I will turn my head slightly to the right, along with my eyes.  I may slightly produce rhythmic mouth movements.  I may or may not twitch or shake.  My family is also concerned because I get choked easily.  I can get over stimulated.  I may need to swing or take a break from other children. 

In case of emergency call: 

I case of emergency, call mom at xxx or xxx.  Also, call 911 if seizure happens at school.  Timing the length of the seizure is also very important. 

Communication Map 

Family –> Hannah 

We watch Hannah’s facial expressions.  If she cries, we check to see if she is over stimulated, hurt, or has a dirty diaper.  If she turns her head away from something, she has had enough because it is over stimulating. 

Service Providers –> Hannah 

Hannah’s service providers sign “more” and “all done” to her.  They use positive voice intonation when talking to her and play therapy with her to encourage speech.  Her speech therapist imitates the sounds Hannah makes to encourage speech. 

Community –> Hannah 

People outside our home will try to talk to Hannah but will walk away when they get no response.  She doesn’t usually respond to them at all.  She may stare if it’s a child. 

Communication Map Output 

Hannah –> Family 

Hannah will pull up on an adult if they get in the floor with her.  She may grab mothers hand to try to get help with toy activation.  She will bang if she wants more. 

Hannah –> Service providers 

Hannah will reach for toy if Therapist takes away before ready or will make frustrated sound and beat arms up and down if mad. 

Hannah –> Community 

Hannah will smile and pull up on any adult that sits in the floor with her.  She doesn’t notice adults if she’s in her wheelchair but will stare at another child. 

Preferences for 

Likes 

Strings, Wire, anything she can wrap around her foot and pull or pluck with fingers.  Hannah likes music and things that stretch or light up.  Hannah loves to hold and look at books.  Hannah likes to put hands in different things, like rice, pasta, play dough, etc. 

Hannah likes to be outside on cool days.  She likes to splash in water.  Hannah likes to crawl and pull up on things like tables.  She loves watches, bracelets, and necklaces and will try to pull them.  Hannah likes to have someone sing to her. 

Dislikes 

Hannah doesn’t like her hands touched or to be held still in someone’s lap or arms held.  She doesn’t like loud voices or clapping.  She doesn’t like to be tickled.  She doesn’t like to be brushed.  She doesn’t like other kids to touch her. Hannah doesn’t like to be outside if it’s hot.  She will cry.  She doesn’t like to have a favorite toy taken away when she’s really focused on it.  She doesn’t like water on her face.  She doesn’t like her hands grabbed or to be restrained physically by someone. 

1.  What types of things does your child enjoy learning? 

Hannah enjoys learning new games like “peek-a-boo” or “so-big”.  She likes walking in her walker or cruising around a table.  She also likes anything that plays music or for someone to sing a song. 

2.  What things are the most difficult for your child to learn? 

Hannah has trouble picking up and holding things for any amount of time.  She can’t color by herself and struggles to place items in something. 

3.  What are your child’s favorite toys and activities? 

Hannah likes her 5 – function sensory board.  It vibrates, plays music, lights up, and has a string she can pull.  She also likes her ball toy that plays music and blows the balls with a fan.  She loves to wrap strings, necklaces, or beads around her foot and pulls on them. 

4.  How does your child get along with other children? 

Hannah doesn’t currently play with other children.  She gets absorbed in what she’s doing.  She will take something away if she’s interested in it and not notice other child.  She will smile and laugh at her older brothers.  She pulls their hair and grabs their faces.

5.  What types of rewards work best with your child? 

Hannah likes hugs, smiles, and stretchy string like items.  She also responds well to “happy” voices.