thoughts, journeys and musings written by an American mom living in Cairo, Egypt
My new favorite photo. Taken in Dubai Children’s Park.
I’ve been having a bit of trouble with uploading photos to flickr due to our poor internet connection. So hopefully they will be uploaded slowly over the next week and I will have time to write and post about our short trip there.
Introducing, the latest fund raising event for Sebastian Sharp. Thanks to my friend Alex, we will be selling 2010 calendars to raise funds towards equipment for Sebastian. Featured in these calendars will be photos from some of your favorite photographers who donated their work for the photo raffle. You will also notice some new photos included with some of the originals included in the raffle.
I will be meeting with the printer this week to decide on all the fun stuff and will let you know when the calendars are available for purchase online. I will also be selling them at a couple local shops in Maadi, Cairo and at the Maadi Christmas Bazaar on Dec. 4. AND I will be bringing a good size pile to Melbourne to sell there, just in time for the holidays. Price will be confirmed after meeting with the printer.
Details and photos to follow. Sneak peak tomorrow. Having internet issues so uploading photos is not an option at the moment!
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.
There aren’t many green, play spaces here in Cairo. Which is unfortuntate, especially as winter is approaching and it’s cool enough to spend time outside after a long, hot summer. But we recently joined a club – paid for by the company – which allows us access to some very nice play spaces for both Ali (basketball) and Sebastian (swings!). I like the swings too, although we did get told off because the swings are for the kiddos, but I convinced them it was ok for me and Sebastian.
Below are some pictures Ali took with his blackberry while we were out yesterday afternoon. Fun times. Sebastian was besotted with a little girl over on the swings, which is why he’s not looking at the camera in most of the photos!
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.
It’s too early in the morning for pictures! I love how they are making the exact same face!
Photos taken when we were in Michigan in August.
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.
While we were in Michigan we saw several doctors. When we first arrived, Sebastian was quite sick and soon diagnosed with pneumonia. Thankfully, he recovered quickly. We went to see our family doctor because that’s who we’ve known my whole life. He is not a pediatrician, but was helpful and able to guide us in the direction of other doctors to visit while we were in town. Thankfully, we have very good health insurance through Ali’s company. Our insurance is based in the UK but international so it covers us anywhere. The tricky part was finding doctors that took our insurance. And we did. In Southfield and Detroit, about 50-60 minutes drive from my mom’s. But we were in Michigan, and in Michigan, you drive places!
I’m going to run down the list of doctors and procedures we had while in Michigan. These happened mostly the second month we were there and in some cases the last week we were there. This was because once you find a doctor, then you have to get an appointment and sometimes there aren’t any for weeks at a time. In our case, I had to explain our situation so we could get in when there were cancellations. If you didn’t hear from me while I was in Michigan and we were planning to talk or even see each other, I think you will understand why that didn’t happen after you read our list (coupled with therapy treatments).
Neurologist: Southfield. We went to the MIND Institute. The neurologist did a basic check up and didn’t tell us much of anything that we didn’t already know (since I know my son so well). He did refer us to several other doctors. Which was a big help because you can’t see other doctors without a referral. I did not know this!
Ophthalmologist: Southfield, part of the Children’s Hospital of Michigan. Great doctor. Had over twenty years of experience with CP kids and was able to diagnose Sebastian with strabismus, and prescribe him some pretty cool eye glasses. His strabismus is NOT related to his CP so can be corrected by his glasses. Sweet. We saw him twice.
Gastroentologist: Southfield, also part of Children’s Hospital of Michigan. Recommended two tests for Sebastian’s reflux. Barium Swallow test and Mag Airway test. Both were AWFUL. Traumatic for all involved. Went down to the hospital in Detroit for the tests a week after the initial appointment. No one warned me what the tests would be like but when I later mentioned them to the physical therapist, she was like, ‘yeah, those are tough’. Thanks. It would have been nice if anyone could have told me my son would be velcroed to a board from head to toe and rotated under an x-ray machine (Mag Airway) then forced to drink disgusting, thick, white, chalky serum and rotated again (Barium Swallow). It was actually comical that the nurse thought my son could be soothed by a bottle of this stuff, while being strapped down to a board, unable to move, a child that breast feeds and does not take a bottle. Not so easy. We used a syringe. A big one.
Ear Nose Throat: Southfield and Detroit; Children’s Hospital of Michigan. This was for Sebastian’s stridor. Essentially to see if/how it was connected to his reflux. He had the initial appointment in Southfield and after looking at the results of above tests, was scheduled for an endoscopy, 6 days before we were leaving the country. While he was under for the test the doctor decided to do minor surgery on his epiglottis, making two small incisions on either side because the flap was falling against his vocal chords. What was supposed to be an outpatient event turned into an overnight stay at the hospital. I don’t even need to go there and discuss the extreme pain killers Sebastian was put on or the lack of sleep we both got. The amazing thing that happened was that I saw Sebastian swallow for the first time, purposefully and carefully. We have since seen a decrease in his drooling, except when those teeth are coming in. He was prescribed another type of reflux meds in addition to what he takes because during the endoscopy, the doctor saw that his esophagus was red from the acid in his reflux. The new medicine is working well. And his stridor is mostly gone. I think over time we can see it was a successful surgery.
So that should about do it (!!!). Nothing like fitting a year of appointments into about three weeks. We are very blessed that Sebastian is so healthy. I am very thankful to my mom for coming with me to every appointment because they were very tough. I had to retell the story of Sebastian’s birth to all of them and some in more detail than other’s. I had to watch Sebastian go under general anesthetic AGAIN and if you have ever done that, it’s pretty emotional. I had to make the ultimate decisions to go through with the tests. I had to talk to doctors and insurance people for lengthy periods of time to make sure everything was taken care of.
The day before the last test and surgery (it was learned that day we needed it and scheduled immediately for the next day) I had one freak out on Ali over the phone because the weight of all of these appointments and decisions was heavy upon me and I felt like it didn’t really effect him at all because he couldn’t begin to imagine what is was like from dusty, hot, Cairo. We work through everything and come out stronger. The creamcicle shake my mom and Sebastian picked up for me while I was ‘working through’ my conversation with Ali certainly helped too.
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