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Before Sebastian was born, we never talked about co-sleeping as an option. We bought him a baby cot and set it up next to the bed. It was a big decision; which bed do we buy for our unborn baby. We didn’t know how much shipping allowance we would have when Ali’s company would transfer us, so we went with something small. Of course, looking back we now know we could have gotten a crib or one of those cribs that go right up to the bed so it’s like co-sleeping, but the baby still has his own bed. And then eventually the crib would turn into a baby bed. But I digress. Like I said we went with the baby cot.
When Sebastian was born, he did not first fall asleep on my chest. Nor did he first fall asleep in his baby cot. He was sedated from anti-seizure medicine in the hospital and sleeping in his incubator. In a room full of preemies who hardly filled their clear, plastic beds, Sebastian barely fit in his. After the incubator, he moved to a plastic cot on top of something with wheels, so he could keep moving up from NICU to SCBU and eventually out of the SCBU (special care baby unit for those of you lucky enough to not know what that stands for) altogether. We decorated it with a special bear from Ali’s friend D and some soft receiving blankets with animals on them from B. We tried to make it special so when he woke in the night or early in the morning when we were not there, he would have something familiar, something that smelled like mama and daddy.
Eventually we took Sebastian home. The first time he fell asleep, it was in my arms. We placed him in his baby cot, which we had moved to the living room so we could be in the same room as him as he slept. We were too nervous to have him out of our sight yet and also wanted to be near him to make up for the hours we couldn’t be while he was in the hospital. When I read about babies being in the hospital for months after birth, I don’t know how the parents survive this as 16 days was traumatic enough for me. Not long after he fell asleep we heard a choking sound and ran to his crib. Sebastian was spitting up (later we would confirm that he had acid reflux) and it looked like his entire meal was on the cot and the floor. That was the end of the cot. (In America we just call it a crib, or even a cradle if it’s small. But in the UK, they call it a cot. And since that’s where Sebastian was born, that’s what I learned to call it.)
After the spitting up mishap, we created a bed for Sebastian in the middle of our bed. We had a baby pillow to elevate him so that if he did spit up again while he was sleeping, he wouldn’t choke. We had his special soft blanket beneath him and the blanket his grandma (my mom) had made for him. We stared at him as he slept and left the room with the door open. Even though we had a monitor, we weren’t quite ready to rely on it fully. We climbed into bed quietly later in the evening and slept on either side of him. Ali was surprised by how aware he was of Sebastian sleeping next to him and I was already on his feeding schedule and sometimes woke before he did.
Sebastian slept best this way. In the mornings after a night of waking every two hours and having little sleep (some of you recall that I was still pumping back then and after I fed Sebastian a bottle, I had to stay up and HAND PUMP before I could go back to bed again, to do it all over in another hour or so. Life got easier after I rented the electric pump and started to have extra milk and didn’t have to pump EVERY TIME.) So in the morning, after Ali left for work, Sebastian would fall asleep on my chest and we would sleep that way for a little while.
Health care workers came to our apartment once a week for the first month Sebastian was home because he came home with a feeding tube in his nose (NGT-he took it out after a week and promptly went to the bottle). Sometimes they would arrive when he was sleeping and tsk tsk at the fact that he was still sleeping in the middle of our bed and ‘it wasn’t a good habit to get into because really he should be in his own bed.’ I didn’t want to care what they said because finally we could be the parents we wanted to be out from the shadows of the routines and nurses at the hospital. But what they said made an impact because then I started to have him in his cot again. And it worked for a little while. But getting him back to sleep and putting him back into his cot got harder and harder to do.
We could never do that nursing position where you get to lay on your side in bed and fall asleep while your baby is nursing. Sebastian’s body couldn’t relax in the right position. So I was always sitting up, I mean, I am always sitting up, crossed legged as he nurses and falls back to sleep. I’m not sure when I started keeping him in bed with me after he first woke in the night to eat. Maybe it was when he was two months old, when we were living in S. London for the summer before moving to Egypt. But we started it and haven’t stopped.
I’ve read a lot about co-sleeping on different websites, in different books and in magazines. Of course the professionals poo poo on the idea. But the best I read was in a Mothering magazine. Basically, studies show that if you do it correctly, it’s perfectly safe for your child. That means no smokers in the bed, no drinking/heavy doses of medicine. For me, these things are easy. I don’t drink. I’m still nursing, so I don’t even take medicine. And when you are nursing, your body clock is on the same one as your baby. Sebastian has recently slept through the night THREE times in one week. Each of those nights I woke at the same time, wondering why he hadn’t woken. It was almost bliss, except even when he can sleep through the night, I can’t!
I definitely don’t think co-sleeping is for everyone. I think you have to be dedicated to making sure you do it safely. But it’s not my place to tell people to co-sleep, just as others shouldn’t tell us we shouldn’t. I fall asleep with Sebastian curled up next to me, sometimes up on the pillow (he still has reflux) or in my arms. I wake to him stretching his body out and a big yawn follows. I open my eyes to see him looking at me. He smiles and I scoop him up in my arms for his morning milk time. Now that’s bliss.
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!
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.
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.
While we were in Michigan we were able to see Claire seven times for ABM sessions with Sebastian. She was fantastic and we miss her!
Below are some short videos my mom took while we were in Michigan at Sebastian’s ABM sessions. Just little snipits so you can see some of the exercises as well as Sebastian’s reactions. You will see that he is pretty happy and enjoys what he is learning how to do.
Thankfully, we have found a woman who does ABM here in Cairo and have had one session a week for the last three weeks. Ali has been able to go with us which is really exciting since he can see both Sebastian and the therapist in action. He is a big fan of this type of therapy. Although our insurance doesn’t cover ABM we are going to go once a week because we can really see how well Sebastian responds to it. You can see the ‘wheels turning’ as Sebastian listens to the therapist, looking at her intently as she explains what she is doing to his arms, legs, etc.
*This post has been cross posted with Sebastian Can Do. Please note that I am working to update his fundraising blog with photos and videos from our trip to Mi and I will not cross post all posts.
Sebastian and I made a visit to the CSA (Community Services Association) on Sunday to stop in at the Garden Bazaar and see our favourite Thai ladies at the Cooks Day Off, where women (and sometimes men) make and sell food from their respective countries.
The Bazaar was very busy and it was challenging to find our way through with the stroller, but we made our way back to say hello. Sebastian is pretty popular with the ladies, as we all know, but the ladies at Cooks Day Off always get him to smile and laugh and I get to use my rudimentary Thai that I learned when living in BKK. And eat some yummy food that reminds me of living there too. Our favorite is the Thai food, but there is some good Indian food there and I get Ali some French stuff once in a while (it’s laden with meat) and I also get the night off of cooking. Everyone is a winner.
We didn’t purchase anything on this day and as we left the room, I was happy to see the Advance Society table right outside. After loading Sebastian back into his stroller, I decided to have a chat with one of the volunteers. The Egyptian Advance Society is an ‘organization for developing skills of children with special needs’ and they usually have a table at the bazaar. Sometimes they have students running it to get practice with making change, etc. The Advance Center is linked to the LRC where Sebastian has therapy. They teach older students so it’s not a place where Sebastian can gain from their services at this time. They do have a parents support group, but they hold their meetings in Arabic.
The Advance Society is building a new center and is currently fundraising for that venture. I mentioned my fundraising projects to fund Sebastian’s therapies and equipment to the volunteer. I was curious if I would be able to work with them on my next project. (A friend of mine is putting together a calendar with photos donated for the photo raffle. Some of the photos were offered as prizes, and some are new ones by the same photographers. It’s in very early stages, but will have to move quickly as we want to sell for the holidays. The main goal will be to reach out to people we don’t know this time! Stay tuned…) They were actually selling calendars, so it wouldn’t likely work for us to bother sell our calendars together but, I had a very good chat with the woman volunteering for their fundraising department. It was one of those conversations that makes you feel like people come into your life at that moment for a reason and vise versa.
She was showing me the plans for the new center being built that would have a heated pool. I inquired about hydro-therapy and she said hopefully. She also mentioned that a lot of the services at this new center were for children with autism. I replied that autism is really ‘popular’ right now. I immediately wished I hadn’t said this of course because she then told me her son has autism. Her reply was that ‘autism is the hidden disability.’ I said yes, but it’s also the one everyone is talking about now because for so long they haven’t talked about it. I didn’t mean this in a negative way and hoped she realized this. The reason for my abrupt comment could be attributed to my recent experiences of people/media/books/ focusing mainly on autism as the ‘it’ disability. An example of this is my trip to Borders bookstore in Michigan. There weren’t any books regarding cerebral palsy or any other special needs EXCEPT autism. There are a lot of kids being diagnosed with autism, yes. But there are also a lot of kids being diagnosed with CP and parents equally need information and support.
Aside from parents of kids with special needs needing support, we discussed the lack of education about special needs here in Egypt but how positive it is that the Egyptian community is being educated about autism through their organization. Unfortunately, children with disabilities in Egypt are generally kept at home because no one talks about disabilities or understands them. We talked about the need for the community to learn about other special needs as well and we began sharing our personal stories about our sons.
As we were talking about Sebastian she asked me when he was diagnosed. I told her that he had a traumatic birth and was not breathing when he was born and spent 16 days in NICU. I told her that we knew there would be the possibility of CP and that he was officially diagnosed at three months old with CP. I said that it was good since he’s been able to get therapy from such a young age. She had tears in her eyes and shook her head. She then told me that her daughter was also born in a traumatic birth and was also not breathing but that she died. I reached out to her. I could feel her pain. I felt so blessed to have Sebastian with me. I know that we have challenges, but had I lost Sebastian, I don’t know how I would have coped. I love him so much. And we are so blessed to have him in our lives. Exactly as he is.
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.
We spend a lot of time in the car in Michigan. My mom lives in the country and there is no public transportation. We drive back and forth to HBOT and ABM. We visit family. We do some shopping. All of these things would have been impossible back in November when we were visiting for a few weeks. Every time we got into the car, Sebastian cried. He could not tolerate being in the car or the car seat. He would do the silent cry which involved holding his breath for a few seconds, lips turning purple. We did not make it out much during that time. Most of the time it was because it was just too much to put Sebastian in the car for an outing and there was also a lot of snow.
This trip is different. Very different. Sebastian is in a toddler, forward facing car seat. He has no problem being in the car. He only fusses if he is hungry and after HBOT we always have a snack bar. He even falls asleep sometimes! We listen to his music and look back from the front seat often, singing songs and he even plays with toys. Well, he is working on playing with the toys, he is now pulling them to his mouth easily, which is awesome.
Sebastian has had a bottom tooth coming in slowly and painfully the past two weeks. So there has been a lot of drool and chewing on everything. A couple days ago I looked back from the front passenger seat to see him chewing on the plastic harness clip on his car seat. When he noticed I was looking at him he stopped, looked up at me and smiled. When I looked away, he started chewing again. I told my mom what he was doing and she began watching him from the rear view mirror, as she was driving. I looked back again and he stopped to look up and flashed this mischievous grin. When I looked away he started chewing again. This time I looked from the corner of my eyes and saw him chewing and looking at me from the corner of his eyes, waiting for me to look back so that he would stop chewing. As though he was getting away with something he thought he wasn’t supposed to do. We did this a few times, him stopping and smiling and going back to chewing, while my mom and I were laughing. It was awesome.
It was in this moment I saw a toddler looking back at me, my little boy no longer a little baby. I love him so much and am so excited about all the amazing things he is doing.
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