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It’s that time of year again! Time to get your 2010 calendar! When shopping for yourself or a friend, please consider adding our Seb Can Do 2010 calendar to your holiday list. Inside you will find photos from the photo raffle showcased. We’ve even added some new photos by the photographers and a new photographer. So while some of the scenes from around the world will be familiar, some will be new too.
What people are saying about the Seb Can Do 2010 Calendar:
“Wow, it looks like a Lonely Planet travel calendar… I can’t wait to get my own!”
“It’s really beautiful. I love the layout and the design.”
“Once you are ready to take orders, I want 3!”
You will be happy to know you can pre-order your calendar now. Calendars will be available for shipping and arrive at your home before Christmas.
Calendars are printed on card stock with a center fold for easy hanging on your wall or your refrigerator. Exact size measurements: 30×24cm folded, 30×48cm opened out.
Price: $20 each plus shipping and handling (flat rate of $4.95)
Currently finalizing purchasing options (PayPal, Google Checkout, Check or money orders). You can go to Sebastian Can Do to purchase via Paypal now. Stay tuned for other options to be posted by Sunday evening.
Below you will find a sneak peak at what is inside the 2010 Seb Can Do Calendar. For the full calendar, please order today!
DECEMBER Himalayas, Nepal by Darryl Anderson
AUGUST Butterfly Orange, Washington DC by Sara Richmond
JANUARY Cairo, Egypt by Matthew Cassel
Thanks Dianne for pointing this out. ‘If she can do this, I can’ an article in the Guardian written by a mum whose daughter has CP and spent the first weeks of her life in SCBU (special care baby unit). She also keeps a blog, Mama Lewis. She’s originally from the suburbs of Detroit and is now living in London.
I then went to her blog to check it out and found a very encouraging comment in response to her article. It was written by a woman named Alima.
“I read your article in the Guardian today, and had to come and read the whole blog. I am an American living in the UK, and perhaps most relevantly, I am a grown woman with CP. Reading through your posts, I just wanted to say something I think my parents would say as well – you can never tell what your baby will do in the future. I have some extent of brain damage – how extensive I couldn’t really tell you, as I don’t think they MRIed me in childhood, and I only got told myself during an MRI for other reasons. But I too fisted my hands…almost continuously in childhood, especially the right, and still do for comfort, though I can open them if I think about it hard enough. I too had (and still have) twitches and spasms of the face and other body parts. I didn’t sit up, crawl, or reach at all ‘on target’. My legs and arms still don’t always go where I want them, and I have to think about every motion. But, I also walk mostly independently, have just finished a PhD, and have long proven wrong doctors and physios who said I would never walk or talk.
I don’t know what the future holds for May, but in my experience the dedication of parents who are willing to keep challenging their kids (even when the kids would rather not be pushed) and who are not shy about demanding the most from doctors, schools, and other professionals, counts for a lot. Keep challenging her and yourselves, and she will respond to the best of her ability.”
I wish I could write to her and thank her for encouraging this proud mama of one awesome little boy who is and will continue to achieve leaps and bounds.
As Sebastian gets older, the need for him to become more independent and mobile becomes increasingly obvious. Sebastian enjoys jumping and taking small steps forward with the help of his mama or daddy, but he cannot do these things on his own. Sitting and playing with toys is also a challenge, as he cannot sit up or manipulate toys on his own. There are certain types of equipment that can help Sebastian achieve these things while building up his strength. Unfortunately such equipment is not covered by our insurance. As we raised money this past summer for Sebastian’s alternative therapies, we are back at it again with a new fundraiser (details to follow).
When Sebastian was 6 months old, his therapists from London recommended we get a special seating system to help him sit in a stable position to allow him to learn to use his arms and hands to eat and play. Had we still been living in London, we would have been able to get that equipment paid for through the NHS. Because we are living in Cairo, this is not an option. The cost of purchasing and shipping the equipment was impossible for us.
Using adaptive equipment is a philosophy for some. His physical therapist thought we could modify a high chair for Sebastian rather than get him this special seat. As Sebastian was only 6 months old, I will be honest and say that I did not want to believe that my baby needed a special seat to do things. I was not ready to accept that so early.
Looking back, I think that there are still pros and cons to the adaptive seating system. Giving him secure, supportive seating for eating and playing would perhaps enable him to use his arms and hands more confidently. But if this seat supported him so well, would it enable him to build up those trunk muscles that he needs to sit and play on his own on the floor? I wasn’t willing to place Sebastian in this seat from the beginning. Sometimes now I wish we had a seat like this because as he is getting bigger, the high chair we have is not supportive enough, even with modifications on our part. I think partially this is because we only have access to certain things in Cairo. While we were in the US, we used a high chair that was very supportive with the modifications we made.
We believe that Sebastian is full of potential. Through research and discussion with other professionals, we work to find the best ways to help him reach his potential.
Here are some pieces of equipment we would like to get for Sebastian now: click on the links to see photos and more information.
Gait trainer: wheeled walking frame with armrests and upper body support.
Seat to Go: lightweight, padded positioning seat for children that need support while sitting on the floor, at the table or at play. Can be used at home or when traveling (which is very important for us since we need to travel long distances to see our families).
Second Skin: custom-made medical pressure garments and splinting.
The reason I think the gait trainer is so wonderful is because Sebastian can already stand, jump and take steps forward, but with upper body support. And these are things that he finds very fun. I do them as much as I can with he but they are hard on my back and my arms get tired. I also want him to gain more independence from me. I want to see him walking towards me with a smile on his face rather than always looking back at me through the mirror we do our exercises in front of. Developmentally, he is at that age where he really wants to move around but his body is keeping him from doing that. I believe he will be able to walk, at least with the help of a walker. But I see the gait trainer as a step towards that independence as he continues to improve his upper body strength and posture.
As for the seat to go, this is a more affordable and transportable option for independent seating for floor play and possible eating while out and about. I don’t know if it is right for Sebastian. We will be taking a trip over the holidays which will allow us to try one of these seats out and see if it would work for him. If not, then back to the drawing board.
I learned about Second Skin from a blogging friend whose son uses one of the suits. He has a similar kind of CP as Sebastian. I have contacted the company and am working towards when we can be in one of the locations for a full assessment to see if Sebastian would benefit from wearing one of these. It would build strength in his trunk and help him with more purposeful movement.
Sebastian’s needs will change as he grows and his abilities develop. With that will come modifications or new equipment. But we will take it one step at a time.
Photojournalist Dan Habib creates a documentary over a period of four years about his son, diagnosed with CP, and their effort to include him in all aspects of their lives. Check his film out: Including Samuel, ‘Using the power of documentary film for inclusive education, social change, disability rights, worldwide outreach, public awareness, curriculum and training.’ Watch the extended trailer of the film on the home page. It’s awesome.
Some of you have most likely heard of Team Hoyt. These guys are amazing and every time I watch one of their videos, I cry. It’s a father son team who compete in marathons, iron mans competitions, triathlons, etc. The father acts as his son’s arms and legs because his son has CP. This is the latest inspirational video about them that I watched last week.
Other moms of CP kids know how important the possibility of rewiring the brain is for our kiddos to achieve motor tasks which come easily to others. My husband shared this story with me about adults learning new tricks, like juggling, which improves the wiring of their brains. Both grey and white matter areas of the brain are mentioned, and I know about those areas because of Sebastian’s MRI’s. So I wanted to share this Reuters article: Learning new tricks improves wiring in the brain
Not really realted specifically to CP, but needed for us to get Sebastian around Cairo without a stroller/him walking: I’ve found a couple of baby carriers can that be used for children up to age 4/ up to 45 lbs. Luckily we have a friend visiting from the US that can bring one over for us. Boba Baby Carriers and Beco Baby Carriers. We are going with the first one because it has special foot rests that help aline the spine which sounds good for Sebastian. It will also help his legs and feet from extending. The price is a bit better for us too. The second carrier is trendier with cool prints as well as a head rest for sleeping baby, but I am pretty sure I can make one of these. I found both advertised in my online subscription ($4.95 per year!) of Mothering Magazine.
We have a wrap around sling we thought we’d use into the toddler years, but Sebastian never liked it unless he was already sleeping because it was so restrictive and uncomfortable for him. So we got the active baby bjorn and that holds up to 26lbs, and although Sebastian still fits in it, he’s getting a little long. The great thing about these other carriers is that they can be used for front or back, which I think is great for travelling, hiking, and walking on roads that are not conducive to strollers or other adaptive equipment.
And in case you are wondering, this week is going much better for me. Thanks so much.
This week I posted some more pic of HBOT over at Sebastian Can Do, with a link to more therapy photos. Shhh, it’s the guest pass.I tried to upload a cute video of us in the chamber but thanks to our internet connection it didn’t go through. So just imagine him watching the Wiggles and his smile breaking out midway and the silent laughter that follows from one of his favourite songs. Then he gets serious again. Priceless.
This week Sebastian came down with a cough and it’s very difficult for him to clear his throat. He wasn’t sick at all and swallowed some water too fast on Wed. and then got the hiccups and then got the cough. I’m worried about pneumonia (from aspirating) even though the doctor says he has a virus (no meds) and it’s not pneumonia. I’m worried anyways but we are going back to the doctor tomorrow for the check up and I am going to request an x-ray to be sure.
This week has been an extremely rough week for me. I’m feeling better today. I think sometimes I am not over the trauma of the birth and following days spend in the NICU. Actually, I think that I am over it and that I don’t blame anyone but then I read something or have to tell the story for whatever reason and then thoughts cloud my mind and tears well up in my eyes.
This week there was one thing after the next. First, I read this article in the NY Times that I found on another blog about the trauma parents feel after their child has been in NICU (often being diagnosed with post traumatic stress disorder from the experience with little to no counseling over the experience by the hospital). The article mainly addresses parents to babies born pre-maturely, because babies born at term aren’ts supposed to go into NICU, right? Anyways, the article brought back a lot of memories and feelings.
This week I saw on facebook that a friend had her baby at term but had an emergency c-section. Continuing on from that, I saw two shows on tv where the woman had to have an emergency c-section, one because the cord was around the baby’s neck. I have to get over the fact that we should have had one but didn’t and even though most of the time I feel like I have there are moments I feel like I haven’t. It’s complicated.
This week I went to Maadi Women’s Guild and met some new people. I don’t even know how it came up but there I was telling the woman next to me that Sebastian had a traumatic birth and now has CP. I felt like I don’t even know how to socialise anymore because Sebastian is my life. I was at the meeting to mainly meet with the woman in charge of the Christmas Bazaar so that I could sign up to sell calendars and cards for Sebastian’s next fundraiser.
Our weeks start on Sunday. And so tomorrow is the start of a new week. It will be better. I’ve had some good talks with Ali. But I miss talking to my mom. I’ve had some good laughs with Sebastian. I’ve worked on some projects for myself. And I’m feeling a bit more balanced and ready to live in the present again. One day at a time.
Sebastian and I have been back in Cairo for almost three weeks now. We started physical therapy last week and are waiting for our occupational therapist to get back to town (visa issues). We also started weekly sessions with a woman who does ABM downtown, which is very exciting! Ali has been able to go with us for the past two sessions. It costs a little less than in Michigan, at $65 a session. We’ve decided to only go to PT once a week since we are able to do ABM and will still have OT and soon Speech and Language. We are slowly getting back into the routine and it feels good after such a rigorous routine while in Michigan. Ali has been able to take some time off so it’s been great for Sebastian to spend some quality time with his daddy (me too!).
During our last month in Michigan we had several doctors’ appointments as well as the HBOT daily, ABM twice a week, and Early On services once a week. We did not anticipate all of the doctors visits so were really pushed to the limit with time and energy. This is why the Sebastian Can Do blog has not been updated as regularly as I had planned. I will be posting past events, stories, photos and videos of the therapy and development from that last month over the next couple of weeks. Some posts will be cross posted here.
We received donations until our departure from Michigan. We raised about $5500 which covered the full cost of HBOT and half the cost of the ABM. We did have some fees for Pay Pal as well as preparing and mailing the prizes which came to somewhere between $400-$500. Subtracting the fees paid, we were able to raise the full amount for HBOT, which was indeed the main goal of the fundraiser. You helped make it happen! Thank you!
Please come visit Sebastian Can Do over the next few weeks to check out photos and videos from the therapy in Michigan. I also have another fundraising project in the works, so stay tuned for that too!
I was thankful beyond words for the flights returning to Cairo. They were so much better than the flight from Amsterdam to Detroit. [Although we were blessed with a helper on the flight from Cairo to Amsterdam and also managed to both get some sleep as we had a whole row to ourselves.] A few different women helped Sebastian and I get through security, and a nice man at the flight check in made sure we had help getting on the plane. It was nighttime, so once we got ready for take off, Sebastian nursed to sleep and slept for the next eight hours. I love my nursing cover. It kept out the light and created a little warm cocoon for Sebastian once he fell asleep. I kept my eyes closed and probably dozed in and out, but sleep never really came to me.
We had nine hours in Amsterdam and checked into the Yotel. I want do to this whenever we have a long layover because it was so refreshing. Every airport should have one. We were able to sleep in a comfortable bed and Sebastian watched The Wiggles while I showered. Feeding him was easier too since I could easily clean him up afterward. [The only mishap was sitting on my glasses, due to the small, compact nature of the room. Snap. Right in half. I am still searching for a pair here that doesn't have rinestones or brand names written down the side.]
While waiting to board the plane in Amsterdam to Cairo, we found ourselves sitting next to a published children’s author, and having a hopeful conversation about HBOT and a place in Cairo which does HBOT. I am looking into that further to see if it is a possibility for us as we believe Sebastian would only benefit from more HBOT sessions and here in Cairo it is much more affordable.
We had someone to help us fold down the stroller and board the plane as well as store our luggage. I love KLM. Their flight attendants are so much nicer, more helpful and accodomating than NW. Throughout the flight every flight attendant checked on us to make sure everything was ok for Sebastian. He slept half of the flight and was pretty fussy for the last hour and a half, but we had been travelling for nearly two days.
Getting off the plane was a bit annoying since we had to go down stais and although I did have Sebastian in the baby carrier, I also had a diaper bag, a rolling carry on and a misc. bag of things. I asked for help down the stairs and one of the not so nice attendants made a comment about bringing too much stuff on the plane. Funny, because the family in front of me had an additional large back pack on as well as the same items I had; they were traveling with an infant. The main difference being that they didn’t need to ask for help because the dad was carrying everything which freed up the mama to carry the babe.
Whether you have a special needs baby or not, travelling alone with a baby is challenging and I am thankful to all of the nice people that offer to help because I couldn’t do it without them. And Sebastian. He’s one seasoned traveler.
I have returned.
I don’t think I could have anticipated how busy we would be during our last month in Michigan. The first month was balancing seeing family and friends with two therapies, HBOT and ABM. The second month saw us adding four different doctors and trips to the Children’s Hospital of Michigan in Detroit; twice for not so fun tests. All of this has obviously meant little to no time for reflection, but of course I want to retrace and remember some of our steps and adventures a little bit at a time. I can’t say I will be able to do it in any sort of order because if I tried I would just forget it and start with today.
Being back in Cairo has been challenging for me. And I think for Sebastian too as he has been fussier than usual. I have no doubt that jet lag has played a role in this but also a lack of family around is sure to have made an impact too. I wonder what Sebastian thinks. ‘Where has grandma gone?’ The day we left Michigan, he wouldn’t let her out if his sight. He knew something was going on and he wanted to spend as much time with her as possible. It was an exhausting day trying to fit everything into the three suitcases we were allowed. Repacking and weighing on a short nights’ sleep, well short week of sleep really. He spent the day hanging out with my mom, getting in his cuddles as much as he could before we were to walk through security at the airport. [flight story in another post, just to keep things short and organized!]
We are so happy to be reunited with Ali. It feels good to be a family again, all together in one happy home. Ali took some time off for our return so we were able to get back into family life in Maadi. This week has been our fist week on our own and we are back to the long days and nights while Ali works long hours. But the moments when he comes home in time for Sebastian’s bath, and the mornings we can all have breakfast together, make those long days worth it.
I miss my mom. I miss my family. I miss the new therapy friends we made in Michigan. And I know Sebastian does too. Sometimes he’s looking around and I know he’s wondering where everyone has gone and how is the house so different? It’s amazing to exist in two places at once, but only possible to physically be in one and even then to feel you are living two separate lives. Not everyone knows what this feels like. It’s strange, heartbreaking and blissful all at the same time. There is a teetering of back and forth, back and forth. And I do my best to live in the now. In this place. In this journey. Today.
Wow. I feel blessed. Since we have started the fundraiser one week ago, we have raised over $900. We have had friends donate their time and photographs for our son. We have had friends donate financially. Some of the donations have been hundreds of dollars. That’s a lot of raffle tickets!
These generous donations are from people who probably don’t know a thing about HBOT or ABM. They may have heard of hippotherapy or at least theraputic riding. These donations are from friends that don’t even need to know about these therapies because they know us. They love our family and want the best for our son, just as we do. If you are a parent of a child with CP you will know a lot about these therapies and the dozen or so other alternative therapies out there (there are a lot). Because as a parent of a child with CP you do as much as you can to find out ways to help your child. As a parent in general you would know that you want the best for your child, whether he has special needs or not.
We are also not the first to come up with creative ways to help raise money for our child’s CP. One mom over at Better Than Normal makes party hats, crowns and now super hero capes to raise money for her son’s alternative therapies. I would love to create things too, but being in Egypt makes that difficult since I can’t guarantee items will make it through customs! (My mom only received one of her two scarves which I sent her.)
Being in Egypt we are very lucky that we have services for Sebastian. Very lucky considering there are only FOUR occupational therapists in the ENTIRE country. And just as we are thankful we have access to physical and occupational therapy, we feel that is not enough. We feel that there is more that we can do because of the research I have undertaken since coming to terms with Sebastian’s CP.
We are lucky that we have insurance that helps cover the costs of some of these traditional therapies. For some of the therapy Sebastian has received here, we have had to pay out of pocket and risk not being reimbursed. But that’s ok. Because this is what we do; we take care of our son. Our insurance does not cover the cost of any adaptive equipment. So when/if the time comes for Sebastian to need a gait trainer or a walker or even a special tricycle, we will have to find a way to pay for these things too. Our hope is that the therapies we choose will help him do things. But as every child with CP is different, so is the outcome of every patient in each therapy.
Cerebral Palsy is the most expensive disability to treat over a life time. If I can organize a fundraiser to help Sebastian get therapies NOW that can possibly help him sit up on his own, play with toys independently, self-feed, talk, crawl and even begin to take aided steps, then bring it on. I will tell everyone I know and everyone I don’t know to buy a raffle ticket. Going without a drink at the pub or a desert at a cafe can purchase one ticket (ok, going without two drinks or two deserts). And everyone doesn’t even need to feel pressured to contribute financially. Just spreading the news helps too. I have a friend I haven’t seen in over twelve years who has volunteered to work with her church community to help support us.
Thank you to each of you who have already donated your time, support, photos, and purchasing of raffle tickets. We appreciate it more than you can know.
I’ll leave you with this photo taken on his first birthday, nearly two months ago. The outfit is from my Uncle Brian, Aunt Kathy and their kids.
This week I was sifting through hundreds of emails in my inbox (dating back to Christmas) and so I’ve been a bit behind in blogging this week. Only now catching up on my favorite blogs, I was pleasantly surprised to be tagged by one of my favorite blogging moms, Bron.
“It’s really simple. I love how every photo tells a story. Some short stories, some long tales. I want to know what is your favourite photo of yourself. Everyone has one. The photo they look at and smile. It reminds them of something, some time, some place. A moment in time. So share the photo, share the story and then tag three other people. I want to see photos and stories all around the blogosphere.“
So I started the task of looking through photos to choose my favorite one of myself. Myself! Can you believe it? Have I had a photo taken of me without my son in my arms since he was born? I don’t know. He is such a huge part of who I am now. Mid-post he roused from slumber although he hadn’t even been asleep an hour so I was able to help him fall back asleep (breastfeeding magic!). As I sat there with him in my arms I began to think about photos of myself that stuck out in my memory. I thought of one from when Ali and I were traveling in Nepal. When I came back to my computer I went to my flickr account and found the Kathmandu, Nepal set. Although I originally had one of Ali and I together in mind, instead I chose this one:
We were sitting in a cafe on Freak Street playing cards and writing in our journals. It was August 29, 2004. We had been backpacking/traveling in SE Asia for a couple of months and were now in Kathmandu. During our stay there were several ‘bandh’ (strikes) in which sometimes we had to stay in our hotel and the streets were quiet; no one dared to go out. The strikes had been ordered by the Maoist insurgency (before they were in government). This was not one of those days and we found our way to the ‘hippie’ haven called Freak Street. When I look at this photo I remember how young and carefree I was. I am smiling at the man I will marry two years later. Did I know this then? Maybe. I’m tanned. Thin. I have my short, bleached blonde, funky hair. I’m wearing the necklace he bought me on an island off Thailand while he was traveling his way up to me from Malaysia, where we had met a month earlier. I am happy. I am living the dream of exploring places I never imagined I’d visit. I have no worries. Only an unmapped future before me. Which I embraced. Which brought me to where I am now. With my family. My beloved husband and son.
Sebastian’s first birthday. I am happy. All that I have experienced to this point has helped prepare me for this life. For this place. For this happiness. For this love.
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