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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.
Photo essay ONE
We spent two months in Michigan at my mom’s. It’s gorgeous, peaceful and the air is clean. Thanks Mom and Jerry for taking such good care of us!
This is the view from the field out back, the house is hiding behind the barn. The naked* tree to the right was cut down but the township. I’m so glad I got a picture of it.
Here is the view of the field from the house; one of the places Sebastian and I took walks. I love the shadows created by the large white clouds above.
Here is a tree that that marked the end of each walk. We walked toward it and sat in the quiet of its shade.
Close up. I couldn’t help sharing this one too.
I didn’t use auto settings for these photos, but focused on the aperture with the manual setting. My husband would be so proud!
*My mom lives off of a dirt road. Sebastian and I often took the stroller out and walked along the edge of the road. Sometimes cars would pass, but most times it was quiet. There were several dead trees along the way with vines crawling up their trunks. They looked bony white against the crisp blue sky. On one walk my nephew, Logan, called them naked trees. I like that. Each time I would stare up at their branches, arms reaching toward the sky, rooted in the earth below. I took mental pictures and said I’d remember my camera next time. There was a fierce thunderstorm which knocked two of those trees down, split by lightening or wind. And each time, I lhad eft the camera behind. But the memory is still crisp in my mind.
For more photos from this set Free As Trees on flickr. (As always photos of family are protected. Leave a comment if you’d like the link. It’s also posted on my facebook profile if you’d like to check it there.)
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 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.
We’ve been a bit under the radar lately. Since organising the fundraiser, I have spent most, if not all, of my down time updating the site, sending raffle tickets and getting the photo prizes organised. It’s been a great project for me to work on. Having some experience with fundraising in the past (primates in SEASIA and Free Tibet Campaign and V-Day in London) it seems like I kind of have a knack for it. I suppose the previous experience prepared me for this one, as all things in life usually prepare you for something!
Anywho. Sebastian and I are now in Michigan at my mom’s and there is less than one week left for you to get your raffle tickets. We have raised a little over $3500!!! We need $5000 for the 40 HBOT sessions and obviously additional funds for the ABM and hippotherapy. But I am so happy with all the support we have received and money is still coming in. You guys are amazing! I have no doubt we will have enough money for the HBOT sessions. We also have some money saved from reimbursements from insurance for therapy to help fund the additional needed for the ABM and hippotherapy.
Therapy stuff: I have contacted the Early On program here in Michigan, which provides free therapy to children ages 0-3. Unfortuntately we have to get assessed and then get through the paperwork, but I am hoping to have their services for at least part of the time we are here. Otherwise I will need to find private physical/occupational therapists. It is important to do the therapy with HBOT. We have been scheduled in for ABM sessions, although just one a week. I am still looking for hippotherapy in the area to find out if they will take someone as young as Sebastian.
There are so many types of alternative therapies available, and a lot of them available in Michigan, it can get overwhelming. Even though we have chosen three for this trip, there is sill organising of our schedules to do and I want to contact and check out a couple other things for the future, like Euro-Peds, suit therapy, and conductive education. I’ve researched these as well and now have the opportunity to visit facilities and see how they work and what kids are doing. I’ve been under the impression that they would be for older kids, but I will find out while we are here.
Sebastian has pneumonia right now, so we are limited in our activities and can’t leave the house since it’s been windy and rainy since we arrived. Unfortunately, we didn’t know he was so sick and we were out in the weather for two days before we found out he had pneumonia. He’s on antibiotics and taking two naps each day and feeling a bit more tired than usual. But he is getting better. Needless to say, we haven’t even been able to do the regular exercises we do at home. But, he has been getting lots of love from his Grandma and yesterday had his first visit with his cousin Ethan. More cousins are coming over later today. It feels good to be around family again.
Sebastian and I will be heading back to Michigan for two months at the end of July. While we have planned the trip to spend time with family and friends, we are also using it as an opportunity for him to do some alternative therapies not available in Egypt. Alternative meaning, therapies aside from the traditional occupational and physical therapy that he currently gets. I have been researching therapies since his diagnosis. I am a member of a yahoo group called CPmoms and I also keep in touch with some other mom bloggers who have boys with a similar kind of CP as Sebastian. Through all of this I have learned a lot. The biggest thing I have learned is that many alternative therapies can and do help.
The therapies we are hoping to do this summer: Hyperbaric Oxygen Therapy (HBOT) to treat the brain injury, Anat Baniel Method as an alternative to regular physical therapy, and Hippotherapy: riding a horse with aid of occupational/physical therapist to build trunk support. We had also looked into Conductive Education, but our schedules don’t match up this time around.
Unfortunately, these therapies cost a lot of money. Since we live on Ali’s modest trainee income, and I’m still paying college debt, we don’t have much additional funding for alternative therapies. Right now we pay out of pocket for his therapy in Cairo and 90% gets reimbursed only up to a certain amount.
Just to give you and idea, the HBOT therapy is $140 per session, initial requirement is 40 dives (that’s what they are called), which brings us to $5600. The Anat Baniel Method could be similar per session but Sebastian could do one a week, I am still connecting with practitioners in the area to find the cost and availability. I don’t know if Sebastian is old enough for Hippotherapy, but those sessions are around $70 per session. We need to do physical therapy in conjunction with the HBOT, so I am researching ones in the area which our insurance will cover. [This doesn't include our flights for $1000 to MI, thankfully already paid for.]
In order to make sure Sebastian has access to the best therapy available, I am planning a fundraiser to help raise funds to pay for Sebastian’s therapy while we are in Michigan.
Details on fundraiser to follow.
This post has been cross posted with a new blog I have started: Sebastian Can Do. This blog will highlight the types of therapies we are planning to do as well as follow the treatment over the course of the two months we are in MI. It is being set up for the fundraiser so all information about the fundraiser will be posted here. There will be a Paypal Donation button on both blogs.
I got an email from my mom last night:
Kara,
I need you to call me please.
Love you,
mom
Immediately, I felt my stomach drop. I knew something was wrong and tried to imagine who it involved. Then I calmed myself with the thought that if someone had died, she surely would have called me. Both my grandparents (her parents) aren’t in the best of health. I tried both her home number and mobile and couldn’t get through. Did some Facebooking then tried again. I kind of half asked and half stated; ‘Everything’s ok, right?’ I wanted her to say yes. Everyone is fine. But she didn’t.
My great-grandmother went into the hospital for extremely high sugar levels yesterday. They were able to get her levels down but also discovered cancer in her pancreas. She is 96 years old. 96. Nearly a century. There is nothing to do about the cancer. She went home and ate some pizza. I sobbed on the couch as I held the phone tightly to my ear. Ali stopped studying Arabic to come over and run my back. Surely, he thought someone had already died. Thankfully, Sebastian was asleep.
‘I won’t get to see her before she dies,’ I said. ‘Not unless you get on a plane this week,’ she replied. We both knew that wasn’t possible. We had planned to see my Grandma while we were in Michigan in November. But we all got snowed in and there was no chance travelling was possible or safe. I had a feeling, that this was it. It would be my last chance. But I kept this thought to myself. Because my grandma has been around a long time and she has been healthier than both my grandparents. Her husband died eight years ago, while I was living in Saipan. I was unable to attend his funeral either.
My sadness is selfish. My grandma has led a long, full life. I know that she is ready. The summer before last we sat around her kitchen table going through old photos. One of which I have framed on our counter. She is sitting next to my grandpa. They are in their thirties or forties. It is a black and white photo and they look so hip and happy. She missed him so much. Every day she would wake up and sit on the edge of her bed looking at his photo.
This was the last summer my grandma was spending in her home. She would be moving in with her daughter in the Autumn. I took pictures of every room. Of every corner. Of the flowers and trees in the front yard and back. Of the wall paper in every room. Of the collectible figurines on the sink counter in the bathroom. Of the framed picture of her and my grandpa on the dresser in the ‘pink’ room. Of the view from the dining room table. I spent part of every summer growing up at her house ‘up North,’ and I was sad to see the end of this era.
I called her this evening. It was morning there, almost lunch time. I spoke to her daughter first, my (Great) Aunt Kay. When my grandma got on the phone, she could hardly speak, she was so overcome with emotion. Her words slurred as she tried to hold back the tears. She couldn’t believe it, ‘Kara’s calling from England? All the way from England?’ She doesn’t know that we live in Egypt. She was born in England. She likes knowing I was living there.
She immediately asked about me and the baby. ‘How is the baby doing?’ She’s always asking about us since Sebastian was born and spent time in the hospital. ‘Good Grandma,’ I said. ‘We are good. I miss you Grandma.’ She couldn’t talk anymore, it was too much for her.
Aunt Kay took the phone again and I thanked her for sending us the Christmas card my grandma had prepared. She included a 2 dollar bill in it for Sebastian. My great-grandma has been sending me birthday cards since birth, always with a crisp bill inside. She had this writing desk in the guest bedroom we slept in . We called it the pink room because both beds had pink comforters and the wallpaper was pink striped. I loved the writing desk. It was organised with envelopes. She has dozens of grandchildren. Great-grandchildren. Great-Great-Grandchildren (that would be Sebastian). She sends us birthday cards without fail every year. Even though her eyesight is failing her, she signs her cards each time and her daughter posts them.
My Aunt Kay and I talked about the 2 dollar bill and how it’s there but no one uses it. You can go to the bank to get one but you won’t be given it back for change in a shop. Isn’t that funny, we laughed. Silly, we said. We didn’t want to talk about my great-grandma’s, her mother’s, failing body.
When you live far away from your family, it’s like there are two worlds existing at the same time and they cannot converge and this is the hardest part. We must keep on living. We have our day to day things we do. We cannot stop this. We cannot afford to hop on a plane. I will not get to hug my grandma one last time. But I will call her again tomorrow and tell her I love her.
What You are Saying