Although we have access to different therapies, we haven’t been able to afford them as frequently as we’d like. We are STILL on the waiting list for PT and OT covered by OHIP (national health care). Sebastian had three sessions using the Theratogs and he works hard every time. He loves going to see his therapist and is so proud of all of his achievements. And so are we. The photos below are from his most recent session, a week before summer camp started. When asked if he’d like to wear his special suit, he always smiles. It helps him sit up straighter and works his muscles in different ways that allow him to build strength while making things easier to accomplish, like sitting and reaching for toys. You’ll notice he’s sitting on a potty seat in two of the photos. We were trying out an idea that we hope will work at home for potty time. Yes, I’ll be writing about that closer to the end of the summer, after I finish reading all of my books on the subject!

In the next two weeks Sebastian will be getting his Kid Walk walker as well as a set of Theratogs. We are thankful for all of the support we have received from friends and family in past fundraisers as well as to Easter Seals which has helped fund the walker. Watch out world, Sebastian is headed your way!

‘Talking’ on the Tubaloo

An open letter to our readers, fans, friends and family,

We have appreciated your support in the past, and are writing today to share about our latest adventure while seeking your support again.

Last year Holland Bloorview Kids Rehab Hospital started a contest called filmpossible. This year we are taking part. filmpossible is a video and photo contest that’s bringing visibility to disability! The photo above is our submission.

You can view our entry and vote for us HERE. You need to create a login to register to vote. It’s quick and easy!

The sponsor Cisco will donate $1 for every vote up to $10,000 to Holland Bloorview, where Sebastian receives many services. In the first round of voting, the top three submissions with the most votes receive monetary prizes. The judges also choose six from each category to go on to a round two of voting, with the top three in each category winning prizes. If we win any cash prizes, the funds will be used to pay for Sebastian’s therapies (so that they can be more frequent than once every two weeks) with a portion of the winnings also donated to Easter Seals. With the help of Easter Seals, Sebastian’s Kid Walk (walker) is scheduled to arrive next week.

Round 1 voting closes August 21, so please vote today! Also, take a look at the other entrants as there are some beautiful videos and photos in the contest. And don’t forget to spread the word!

Thanks so much and wish us luck! Please vote for our entry and help us bring visibility to disability!

SebCanDo
aka The Sharps, Alastair, Kara and Sebastian

A special thanks to our fabulous friends, The Divozzos, for being a part of our photo as their daughter Jilliann stars along with Sebastian in our entry.

Bingo Adaptive Stroller (very similar to the Kimba Adaptive Stroller). The major bonus with the stroller is that the seat can be removed and placed on an indoor base which is a high-low base on wheels. This was great for being at school. Sebastian’s classroom isn’t very large, so maneuvering the stroller to the table for snack time wasn’t as ideal as putting the seat on the high-low base. Although it was an option, it wasn’t an easy switch after first, so when I was in a hurry to feed Sebastian, I didn’t take the time to switch from stroller to base. Sebastian’s feet also didn’t reach the stroller foot tray, so a foam base would need to be created for his feet to rest on.

The Bingo stroller is BIG. It is very wide and didn’t fit through all of our doorways easily. It is also very HEAVY. Getting it into and out of the back of our Subaru Forester (2005) was not easy and it took a few times before I was probably even doing it safely in terms of leg and back support. It also took up a lot of room, especially if we fit the base in as well, leaving little to no space for additional items. I know many people with kids with mobility disabilities have mini-vans. At the time of purchasing our car, it was not an option for us.

Of course the stroller was great for walking through the neighborhood or being out and about and eating. It offered Sebastian the support he needed while also providing shelter from weather with it’s large sun visor and rain cover. We went to the CN Tower with the Bingo on a very cold and sunny day, Sebastian was nestled safely in his cocoon. He was also able to eat lunch easily and have a place to rest when tired. We had extra room beneath the stroller for our bag of tricks, food and meds for Sebastian. This is definitely a plus for the stroller.

Despite the gorgeous photos my hubby took and the fun outings we went on to try the Bingo in all situations, before we even got the wheelchair to trial, I was pretty sure the wheelchair would be the way to go. Mainly due to age appropriateness, but also because the stroller was too big and heavy. Would I have wanted the stroller had Sebastian been younger and then worked our way up to a wheelchair? Not likely. Sebastian wasn’t even keen to sit in a stroller until he was a year old. And the ones we started with were easily modified to offer the extra support he needed. We also traveled quite a bit and lived in a country without much accessibility, so using the strollers we had/have worked best for us. Although I liked the option of the stroller seat base moving onto the high-low base for eating and play, I would have preferred a special seat for these activities, not needing to use them as a mobility option as well.

Zippie Quickie Tilt Wheelchair
One of the main things Sebastian needs is the option for tilt for when he gets tired and has trouble keeping his head up. This was an option with the Zippie Quickie Tilt so we tried it out. Right away I liked the size of the chair. It was easy to maneuver at school and into and out of the car. Although it’s not light by any means, it is much easier to lift into the car in one go, without even needing to break it down. Because the size is smaller, it’s also less awkward to lift in and out. There was some room for groceries as well, although one of the back seats was down for the handle bars. We also had the opportunity to use the chair at therapy and took it out for a neighborhood walk on an overcast day. The huge bonus for Sebastian being in the stroller was the sun visor. I think that for a walk along our nearby nature path I’m more likely to take the stroller or even our carrier. If eating is not involved, we do ok without the additional support a wheelchair provides. Unfortunately we didn’t get a nice photo shoot of the wheelchair.

Sebastian is waiting for lunch. Hurry up Mama!

Much happier after eating!

As I mentioned before, using the wheelchair is also more age appropriate. Some people asked about the manual versus the electric. Getting a manual wheelchair now is beneficial because if we do need an electric one later, it will be good to have the manual in situations where the electric is too heavy. Not to mention that we just don’t have the car or home for an electric wheelchair at the moment. We were advised to get the manual first because getting funding to get a manual after having an electric is pretty much impossible. This way we can have both if  necessary.

We decided on the wheelchair over the stroller. Since we were deciding between two different types of equipment, we didn’t then decide between different brands, like this wheelchair versus another brand of wheelchair. Before our trials I did research different types of both adaptive strollers and wheelchairs on blogs and online support groups, which helped me choose our vendor. I felt like the vendor we chose had options that seemed good for us. If you are researching the best seating/mobility equipment for your child, have a look at Bird on the Street’s info page on equipment.

A word about time lines and funding: Under the government health care system (OHIP), you first sit on a wait list for the seating clinic. You choose a vendor from a list and then once you tell them they put you on another wait list for the actual seating clinic appointment. We had met our vendor when trying some seating options through a private clinic where Sebastian attends feeding/speech therapy when he was still seeing an OT there (when we could afford it). We waited about 6 months before we got into the seating clinic. We had one month of trialing the equipment then another month to get the paperwork and insurance approval. We wait 3-4/4-6 months for additional funding from a government program (ADP) which helps fund equipment. Last week I sadly discovered that there was a slight glitch in paperwork and the right forms were not submitted to our insurance company by the vendor when I thought they were (miscommunication). Although it’s pretty definite they will cover the cost the ADP funding doesn’t cover under our plan, we have to wait until both funding has been approved to get the chair. We should get Sebastian’s wheelchair this summer.

We are now trialling a set of Theratogs (thus the reason for wearing them over his clothes).

We’ve been able to trial some equipment this past month and hopefully I will post this week about the adapted stroller and wheelchair. I think we finally found the walker/gait trainer that is going to be right for Seb. He loves the Kid Walk. We tried it at therapy a few weeks ago and were able to trial it at home for two weeks. Sebastian needs a lot of encouragement and help when he’s wearing his braces to move his legs and pick up his feet. When he’s just wearing slippers, he’s jumping and taking steps forward with just prompts from my pushing/pulling of the walker. He also enjoys a bit of independence and is much happier to hang out in it while we are in the kitchen getting dinner ready too. It’s pretty exciting stuff.

From the photos you can see how open it is in the front so his peers can go right up to him an even walk alongside. He tried it out at school and everyone had fun walking with him across the classroom. We are hoping to get one for him in time for his school summer camp the first two weeks of August. I’m having his PT write up a letter to go with the estimate and application for ADP funding to see what we can get covered. Fingers crossed it will be fully covered. I will also be getting an estimate for Peidro boots to send in to our insurance company. I’m hoping these would work better for him than his braces for when he’s in the walker. They are orthopedic boots with additional support, usually costing around $400, but allow more flexibility than his current braces which are not yet hinged in back.

Walking is an exciting prospect, but a little motivation for independence is even better.

Trying it out with AFOs on.

The exerpt below was taken from an email I received today from Reaching for the Stars, an organization in the US raising funds for CP research, providing support for families and raising CP awareness.

‘We are very pleased to announce that today, March 25, 2011 has officially been designated “National Cerebral Palsy Awareness Day” by the U.S. Senate (Resolution No. 75). Senator Johnny Isakson (R-GA) sponsored the effort, along with Senator Robert Casey (D-PA), via the efforts of RFTS over the past year. National Cerebral Palsy Awareness Day has now been put on the National Health Observance Calendar permanently and we are thrilled to see so many organizations and groups around the country marking the day in a variety of ways that draw much needed attention to Cerebral Palsy.

The establishment of National Cerebral Palsy Awareness Day helps shine an important light on CP and those children and families impacted by it. Cerebral Palsy is the most common motor disability in childhood. It is not a disease. It is not contagious. The latest statistics show that the Cerebral Palsy prevalence rate is approximately 3.3 per 1,000 births – more common in any year than many types of cancer, stroke, spina bifida or muscular dystrophy, and affects over 800,000 Americans. In the majority of cases, the cause of CP and how to prevent it is still unknown, despite advances in genetics, obstetrics and neonatology.

There is currently NO federally funded national CP surveillance or causation research despite the number of children, adolescents and adults affected.

It is estimated that the lifetime care and medical costs for all people with CP who were born in 2000 alone will total more than $13.5 billion. Dedicated research is needed to investigate the cause and best interventions for CP to help reduce this substantial (financial) burden.’

For more information please stop by Reaching for the Stars.
One of their current spokespersons/advocates is Michael Kutcher, Ashton Kutcher’s twin brother with CP.

Remember to post any questions in the comments as I will be answering them on March 31.

We came out with Sebastian’s diagnosis on World Cerebral Palsy Awareness Day two years ago. This year, I wanted to ask my readers (you!) if there were any questions about Sebastian that I could answer and then on that day I would post all the answers. Well, Sebastian was on Spring Break last week and he was also sick with a cold all week, so that meant little-to-no blogging time. I’m also taking two writing courses, one online (for free, I won it!) and one which meets once a month, so I’ve been doing a lot of personal writing as well.

Since it is still Cerebral Palsy Awareness Month, I’m going to ask now for those questions, anything at all, and post the answers at the end of the month. Or share a story about an amazing person in your life that has CP. Because I certainly know there are many.

Kids are expensive. I’m going to go out on a limb here and say kids with CP are more expensive (regular trike $150, adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health care like us in Canada. Where we get some help from government programs. Compared to the US which is insurance based and usually comes with a fight. We also have insurance to help out with additional costs not covered by the government which helps pay for private therapies while Seb is on the long wait list for publicly funded therapies. Ha. Unfortunately, it was not created for parents of a child with a disability. It was created for someone who might get a sports injury.

Our plan covers $500 a year for PT. One session of PT privately costs between $120-125 an hour. An hour. In Egypt it was $80 an hour and our insurance covered 80% of all costs/therapies (except alternative ones). Hippotherapy is $70 per half hour session. It is covered under PT. We’ve used our yearly allowance on that alone already. ABM is not covered. We stopped going shortly after school started. School costs $505 a month, prorated for starting in November. Our plan does not cover OT. One session privately is also $125 an hour. We did half hour sessions every two weeks once school started to help minimize costs. SLP/Feeding therapy, that’s $125 an hour too. We’ve been doing 45 minutes every two weeks. We just started doing an hour. Our insurance covers $1000 a year. Better. But if you do the math you’ll find weekly visits, which are better, would put us at our limit in just a few months.

Let’s talk about equipment. This is the department where we come out on top, so to speak. There is a program here called ADP which can fund up to 75% of equipment costs depending on your salary and you are required to pay the remainder. So, let’s say we want to get a manual wheelchair for between $5-6000. We (hopefully) pay around $1200. The wait for the funding is about 3-4 months after applying. Not too bad. There was also a 5 month wait for the seating clinic which would put all of this in motion. I called our insurance company today and it looks like they will help cover the cost of the wheelchair. I’m almost jumping for joy; I am so very excited about the possibility that the cost of the chair may be fully covered. That would pretty much make my month.

We are finally on the wait list for PT and OT at the hospital, which means we could look at applying for ADP funding for a walker/gait trainer by summer too. Our costs for that with funding hopefully don’t go over $1500. Which we have set aside from our Calendar Fundraiser last year. I will also submit an estimate to the insurance company with a letter from Seb’s PT to see about getting additional help from them. The reason for the wait in getting on the wait lists for OT and PT? First we had to wait for an appointment with a developmental pediatrician. That was about 5 months. Then she had to discuss Sebastian with his therapists at school. Her belief was that since he is in school he gets therapy there and thus doesn’t qualify for additional therapy covered by OHIP.

Sebastian’s school therapy is on a consultative basis. There is an OT, PT, and SLP (or SALT) at the school once or twice a week for all the kids at school who need their services. They come in to see Sebastian in class and sometimes try new things with him or work on skills he’s developing and then show the teacher what to do. Any therapy he gets at school is mainly carried out by his teacher in bits throughout each morning, over the course of the week. Making sure he is in the right positions, trying different equipment, activities for fine motor development, etc. In the beginning the therapists spent more time with Sebastian so they could get to know him and his needs. I think the therapists at his school are fabulous and his teachers are wonderful. For one-on-one work he needs private therapy until we get it from OHIP, which is organized to start when school is over for the summer.

Before moving to Canada I had heard nightmare stories about waiting to be seen by doctors. Well, that has not been the situation for us. Yes, we have to wait to get appointments with specialists but we have a pediatrician that I can call up in the morning when Sebastian is sick and they will fit us in that day. If we need advice, the nurse will call us at the end of the day. We’ve been to the ER a couple of times. Thankfully we have not waited in the waiting room either time. We waited 6 months to see a gastro-ped, but then she didn’t have anything new to tell us. We were meant to wait 3 months to see a neurologist, but after Sebastian had an increase in seizures and we ended up in the ER, the neurologist on call that night got us in to see a specialist the NEXT day. Before we had OHIP our insurance reimbursed these visits 100%. Now that we have OHIP, we pay nothing.

Medications. Sebastian takes a lot of medications. Our insurance helps with that so we pay very little every month, depending on the script. Name brand ones cost a little more. I read a post from a mom in the US that paid thousands of dollars last year on her daughters prescriptions. Our previous insurance in Egypt covered 80% but when we were in Egypt we couldn’t get the medicines he needed!

I am so thankful we live here in Toronto with national health care in place. We do struggle to afford all of the additional therapy Sebastian needs but he is also very well taken care of by the system. We go to a feeding and nutrition clinic every few months at the same place where he had his seating clinic and (hopefully) soon his OT and PT. It took time to get ‘into’ the system and Sebastian being in school helped fast track many, if not all, of his services. No situation is perfect and there are times when I feel worried about whether he is getting enough therapy because of what we can afford. Then I find out we get help with some of the equipment he needs and things start to balance out a little.

There are some people in the US that are afraid of a national health care system. This makes me sad. I’m pretty sure that we can’t afford to live in the US on a single income with Sebastian’s needs. If we had lived in the US when Sebastian was born, we’d likely still be paying on tens of thousands of dollars from his 16 days in the NICU. You could argue that it’s also possible it may not have happened. It could too be possible that had we been at another hospital in London, where the maternity care was better, it wouldn’t have happened either. But I digress. It did happen. And this is what it cost. And this is how we do it. One day, one therapy, one piece of equipment at a time.

Sebastian has been doing some pretty amazing things since the New Year started. You’d think he made resolutions and is working hard to accomplish them.

Just wanted to toot his horn and share some of the fun things that have happened despite the big sickness last week.

With Mama’s help, Sebastian walked from room to room in his AFO’s (foot braces) yesterday afternoon for about ten minutes. I held him up and he bent his knees, picked up his legs and moved them forward, one step at a time. This is big news for us since he usually does not bend his knees or even try to walk with his new AFO’s on. He also hasn’t been trying to walk much since he started on his second seizure medication in October, Volproic Acid. I cried tears of happiness and hope. It was very exciting and I’m hoping to get some video when we practice with his Papa-Daddy this weekend. We’ve got a lot of practice ahead and also need to build up his trunk muscles, but we are going to get there, on Sebastian’s schedule. Way to go Sebastian!

Sebastian has stopped breast feeding. I’m sure you read all about that in Two Years and Eight Months over at Free As Trees.

Sebastian is taking naps again, albeit short. After lunch we lay down facing each other and get under the covers. I close my eyes and try to peak at him with one eye open so he can’t see me. He does a really big pout and whimper to let me know he doesn’t want to nap and then within about five minutes he’s asleep. He sleeps between 20-30 minutes but we try to lay in bed for at least 30 minutes. He started napping again when he was sick and so I wanted to stick with it because with the extra rest he doesn’t have seizures.

We’ve had a couple weeks without seizures and little to no twitches (which are mini-seizures that usually start when he is over-tired). He usually goes a couple weeks without them and then has a cluster, but he’s been resting a lot so fingers crossed we skip the next cluster and keep on going seizure free.

Sebastian is going to sleep the same way he takes a nap, but I am slowly working my way out of the room. We started under the covers together and now I cover him up and lay down next to him. He’s asleep within ten minutes. I think the slow transition is good for both of us and of course coincides with no longer breast feeding. I’m thankful for the video monitor so I can still watch his sweetness sleep!

Sebastian has been moving his tongue more from side to side when he has food in his mouth and is starting to use his tongue to move it around. Although sometimes the food ,still ends up out of his mouth, he is really working hard to get it back to his teeth, chew and swallow. This is huge progress. The feeding therapy and clinics we have been going to as well as the exercises we do at home have really aided in his development. We hadn’t seen his SLT since before the holidays, as well as the ladies at the Feeding Clinic at the hospital, and they were all thrilled with how much Sebastian is doing with his chewing, biting and tongue lateralization. Me too.

He has more energy and is getting stronger at school. I think his body is finally acclimatizing to the seizure medication. Wahoo!

He has been laughing out loud more and more and making more sounds in doing so. He also knows how to put on a ‘happy face’. Recently he was sad and so we did ‘sad face’ versus ‘happy face’ and now I can say, ‘put on a happy face’ and he gives you the best one around. He is also making more sounds when he wants something.

Last week was a really tough week. It’s amazing how things can turn around so quickly. Sometimes we go months with nothing new and then there is a domino effect and they just keep coming. And I am so thankful for those moments.

Sebastian really does have the best smile ever. He makes me so happy and I just burst with love for him when I look into the rear-view mirror in the car on the way to school and he is laughing at me talking to the traffic or singing a song to him.

He loves school and school loves him. I will never tire of walking in, pushing Sebastian in the stroller, and having him greeted by one of his classmates. I love it. Those sweet voices so happy to see Sebastian and saying ‘good morning’ make me burst with happiness and love all over again.

This week. Yeah. This week was pretty awesome.

For a few more photos from last weekend’s winter snow in, check out Toronto Winter on flickr. I am sure to add more this weekend.

This post has been cross-posted on Free As Trees.

I’ve noticed many folks reading the Seb Can Do 2010 post from last year. We did not put together a calendar fundraiser this year for the holidays. We still have about 150 calendars left from last year sitting in a box. If anyone is interested in the calendar for the purpose of using the photos, let me know. I would be happy to post them to you for the cost of postage, otherwise they are sitting in the box.

If you have your calendar from last year and don’t know what to do with the lovely photos, one thing I did as a teacher was make them into Silent Puzzles. I actually got the idea from one of my classroom placements in college. It’s simple: Cut up old calendar pictures into different shapes and put each cut up photo into a plastic Zip Lock bag. I would number the pieces on the back of each picture to keep all the pieces together. Example: 1a, 2a, 1b, 2b, etc. Then I would give two kids a bag with a puzzle in it and they would have to put it together silently. They would have to use other ways to communicate to put their puzzle together. They would start out in pairs and then as the year progressed, work up to groups of three and then four. It was amazing watching these kids use gestures, facial expressions, etc. to put the puzzle together as a TEAM. Thinking back on it now, it has so much meaning for me since Sebastian cannot communicate with words.

We have really appreciated all of the support we have gotten with both of our photo fundraisers. With our photo raffle, we raised enough money to get hyperbaric therapy for a summer as well as paid for a summer of ABM. With the calendar fundraiser we raised enough money to purchase Theratogs (finally placing the order this week for those, just in time for Christmas), and put money towards a gait trainer/other equipment. Some of you may be wondering where we are with that.

We have put the money into savings for Sebastian and use it as we are ready for the equipment. We trialed a few different gait trainers this summer, but did not decide on one to get yet. When Sebastian started having seizures this summer and we began to try different medicines for him, everything got put on hold. I am just starting to not feel totally overwhelmed by the seizures, although I still struggle. Each time the medicine increases, it is a set back for Sebastian. He doesn’t have the strength to get into a gait trainer right now as we try to find a medicine that will help get control of his seizures. So we wait.

We also have some new items donated to us by that amazing family in the Target parking lot: a gait trainer for when Sebastian is much bigger, a bench, a special stroller that we’ve been using for his eating chair at home, and the special tomato chair that we use for bubbles, catch and other reaching activities.

Now that we are in Canada we will get some financial help for additional items like a wheel chair and possibly a gait trainer. But we are on a long wait list for both of these (6-8 months more for a physical therapy assessment at the hospital which would then allow Sebastian to be put on another wait list for a gait trainer). If we want anything sooner, we pay for it. Currently our therapy costs are so high and minimally covered by insurance, that we have to budget and go without in other areas (a car is not in our immediate future.) We are saving for more intensive therapies (CME for a week in February, plus car rental) and for a bike for Sebastian. The bike costs $2300 (this is the demo version, a brand new one costs $4900). It will last at least 5 years! We have already had a couple of people donate out of the blue for his bike, which was so unexpected and a true blessing.

We have appreciated all of your support, whether it be in supportive words or financially or both. We appreciate your thoughts and your prayers and your questions. We appreciate you being a part of our lives, taking the time to get to know Sebastian for who he is. I just wanted you to know that while the money from the fundraiser is not all physically spent, it’s there for us when Sebastian is ready. We thought he was ready last summer but were thrown a curve ball with the seizures which have changed the pace of life quite a bit. And now, hopefully, the money will go further with the help from the programs available in Canada. The only thing needed, patience and time!

We went to Michigan last weekend. I saw some old friends I hadn’t seen in over 18 years at a mini high school reunion. We spent time with family. We went shopping. We encountered the kindness of a stranger. Extreme kindness.

After loading up the car in the Target parking lot, I walked over to put the cart away as Ali got Sebastian into his car seat. I noticed a mom with her two daughters headed towards their vehicle. One of the daughters was in an electric wheelchair. I was watching to see which vehicle was theirs and how they would maneuver getting in. We are currently vehicle shopping and so I’m pretty interested in other people’s cars these days. She looked up at me as I watched. I headed back to the car and she kept looking at me. I was about to get into the car when I stopped. She was down the aisle a bit across from us and I decided to walk over and tell her about Sebastian. I did not want her to think I was staring at her daughter because she was in a wheelchair.

As I approached her I nearly shouted ‘My son has cerebral palsy’ and she said smiling, ‘I was praying to God you would come talk to me.’ I wanted to hug her and cry at the same time. I’m pretty sure she felt the same way. Apparently she had seen us in the store with Seb. We were taking turns carrying him and pushing the cart. We had only planned to stop in quickly as he was really tired from a busy day so we didn’t bring the stroller in. We almost didn’t stop. She introduced me to her daughters and showed me her awesome mini-van that had been converted with an electric ramp in the back and space for her daughter’s wheelchair. She started writing down the company that does conversions in Michigan. Hers cost $20,000 on top of the cost of the vehicle. She had loads of helpful information.

The real reason she wanted to talk to me was not because of her van but because she wanted to give us her daughter’s old equipment. Her daughter was now eleven and she had all this stuff in the basement and she thought we would be able to use it. Little did she know that we didn’t have anything!

The next afternoon, the day we were headed back to Toronto, we met again in the Target parking lot and she gave us a special stroller with an additional seat base for when Sebastian grows out of this one, a bench with supports for back and legs, a gait trainer (it’s large, probably a few years away using that one), and a Special Tomato floor chair on wheels (that I had just been looking at online the previous week to buy). She was planning to donate it to the Livingston Education Service Agency that week. Until she saw us.

Pretty amazing. Sebastian smiled happily as he tried out the stroller and chair in the parking lot. We spoke to D for a bit, she offered tips and things she wished she had known or done way back in the early days. We let her know how thankful and blessed we were to meet her. And then it was time to go. We embraced in a big family bear hug, all grinning ear to ear.

It’s true we get to meet the most amazing people we wouldn’t otherwise. I’m thankful God put us in each others’ paths.

Here are a couple photos from my phone, the first is the stroller. It still needs a bit of adjusting, moving the seat back and the foot rest up (books work in the meantime!). We just haven’t had a chance to get it sorted yet.

We are using it as a high chair as the support it offers for Sebastian is so much better than his high chair. It also has a tray so he can try to play with some toys and hopefully even work torward feeding himself. With the extra support in the trunk area, it’s easier for him to move his arms. There is also a butterfly harness which goes across his chest and a waist strap to hold him in his seat.

Below is Sebastian in the sun room (hence the washed out face from all the autumn sunshine!) in the Special Tomato Chair. It is on wheels so he can be moved easily but the wheels also lock. The seat is attached with Velcro so it can be adjusted. It can also be attached to a regular dining chair, but we haven’t tried that yet.

The other equipment we got is at my mom’s still, as it’s a bit too big for Sebastian to use yet, but he will grow into it!

Sebastian worked really had on rolling from his tummy to his back, which is more challenging for him than rolling from his back to his tummy. He also worked on sitting up and bearing weight on his hands and arms. As well as side sitting and leaning on each side, working towards balance and putting his arms out when he falls.

And of course there was tummy time in all sort of disguises to build up that head control. Sebastian also started reaching for toys while sitting, which is awesome. On the last day, he purposefully reached and pushed a toy to get a sound twice in a row!

This is a big deal for us because up until now we do a lot of the interaction with the toys for Sebastian. I am excited he is able to take that next step. Whenever therapists ask me about my goals for Sebastian, one of them is always to get him playing with toys independently. It seems like a right of passage for children, don’t you think?

He’s also a big fan of piano keys and music makers. Nothing too loud, of course!

Would we do Euro-Peds again? Well, they’ve given us a home program to do, with video to help. We were able to try a couple of gait trainers as well as the bike. We met some wonderful people, both staff and other families that attend. But we also used the basic services they have, because that’s where Sebastian’s needs were. By basic, I mean the traditional physiotherapy plus the massage and stretch sessions, no frills like the activities with the cage or the therasuit. Next time our insurance won’t cover it so I would like to make sure that we are doing something we can’t get elsewhere, like the latter two. I liked the massage and stretching they did at the end of the session, it wasn’t needed at the beginning because Sebastian does not have tight/spastic tone.

But my favorite therapy, still ABM. Hands down. I do know that Sebastian did benefit from Euro-Peds and I’m so glad that we had the opportunity to try it out while we were still covered by international insurance.

There is a handle in the back that can direct the bike as you push it.  Once Sebastian learns how to pedal on his own, there is more independence involved and less pushing. He would also be able to steer on his own with the bike. It’s likely a bike like this would last Sebastian a few years, which is obviously a plus where cost is involved. I just love to see him moving around and having fun.

For the rest of the photos from our last week at Euro-Peds, return to Euro-Peds flickr set.

Euro-Peds is traditional physical therapy and I was a little nervous after doing two weeks of ABM, because Sebastian responds really well to ABM and hasn’t always enjoyed regular PT in Egypt. There are some differences at Euro-Peds, they do a warm up/cool down massage and stretches. They also use something called a cage that looks awesome, providing upper body support with bungee chords and a harness so there is an independence in standing and moving. Sebastian isn’t likely to try this out this round, but I am hopeful for the future. They also have the therasuit available for use at Euro-Peds. Unfortunately, Sebastian isn’t ready for that yet either, he needs to gain about 15 more pounds. Maybe next year!

There are aides, helpers that play with Sebastian and keep him entertained during therapy. One boy we met while waiting has been going to Euro-Peds for 7 years and he loves it. He says it’s hard work, but a lot of fun. His mom said he took his first steps at Euro-Peds. He uses two crutches to walk now and I have seen him in the hall practicing with one. The staff are very friendly and seem very knowledgeable.

Rolling
Sebastian is good at rolling from back to front, although it does take him some time to get his arm unstuck he does it and smiles afterwards. We are now working on rolling from tummy to back.

Sitting
Sebastian is working on sitting on his own. He can currently sit with support and is putting weight on his arms to help hold himself up. He is also doing some reaching in sitting position and learning to put his arms out to keep himself from falling. Something new for him is working on side sitting and reaching while side sitting.

Tummy Time and Four Point
Tummy time is always good for improving head control. Sebastian is doing much better on his tummy. He is tolerating it, even enjoying it sometimes, and lifting his head while leaning on his elbows. He is also pushing up from laying down so that he is on his hands and knees with his head up. Which is AWESOME!

Standing and Gait Trainers
Sebastian loves standing and walking. He is standing and learning to lean to stand. He is also trying out different gait trainers as we are on the quest to find something that works best for him. At the end of the two hour session, Sebastian has a half hour of massage and stretch.

Another bonus about Euro-Peds is that it is covered by insurance (except for the suit therapy), and while we have international insurance it is the best time to try it out. There are elements about traditional PT that I am not a fan of, such at putting him into four point position rather than encouraging his body to get there one step at a time (which is what is done in ABM) and some things that I think are helpful, such as the rolling, sitting and walking stuff. I think the best combination is having a PT that is aware of the Feldenkrais/ABM methods and interested in incorporating them into their therapy. I think a lot of the exercises in traditional PT build up strength, but I think that ABM encourages Sebastian to do things on his own, with motivation to get through each step. I don’t think being placed in a position is going to help him learn how to get there. I prefer ABM, because it makes Sebastian happy and also because I see him do such wonderful things. But once you see the slide shows, you will see him doing some pretty awesome things in Euro-Peds too.

Since we have arrived in MI in May, Sebastian has improved in so many areas. Sitting, head control, tummy time, pushing up from belly and bearing weight on his arms. I think that all the therapies have helped with this, especially hippotherapy and ABM. They really laid the foundations for what he is doing in Euro-Peds. And HBOT will hopefully bring them all together too.

Rock on Sebastian.

Slide shows created from Euro-Peds photo set. Cross posted at Seb Can Do.

More photos and a new video can be found in the Hippotherapy set on flickr. This post has been cross posted with Free As Trees.