Saturday, November 7, 2009

My achey breaky back ...

OK, I sure do hope people are reading this blog because I have spent so much time trying to get it posted! First, I had to get pictures taken because what fun is reading a long blog without some pictures to make up for it? Next, I had to study for a midterm, so blogging went offline for a few days. Then when I came back to work on it, the blog entry was gone! NOOOOO!!! Dammit! So I had to rewrite the whole thing. This time I thought I was being smart by doing it in Word first. Now this whole morning I have been busy copying it back into Blogger and uploading the pictures, which takes quite a bit of time. Then I proceeded to adjust the pictures and accidentally highlighted everything and somehow deleted it. OK, no problem, I’ll hit ctrl+z to undo. But NO! Blogger auto-saved just before I managed to hit ctrl-z!!!!! NOOOOOO!! So here I am again … please, does anybody have any tips on successful blogging practices? This time I’m saving the actual HTML, but still … UGH! Obviously shorter, more frequent blogs would be ideal, but I’m just not like that. ;)

So here is as much of the originally intended blog as I remember …

I have so many things to blog about, and what seems like so little time to do it! There's always so much to do, yet when I get a moment to myself, I end up catching up on my Lexulous moves on Facebook, or sneaking in an episode of House or Grey's Anatomy while reading my Chemistry text ... multi-tasking, but unfocused at best.

Other times, I sit around and dwell on the stresses in life. It creeps up on me often these days as my back is constantly aching and I long for a good massage. My back aches because of Jennah, so I really don't want to complain because God knows I will go through any amount of pain for that girl. So indeed, Jennah is getting bigger and taller. She is just over 11 kgs now (the non-American metric system in use here ... like the rest of the world aside from the States), which is over 24 lbs. I carry her around all day and often, she rests on my arm at night. Some of you remember my slightly OCD behavior of washing my kids bums frequently throughout the day, especially at poopy times. With Jennah, this involves me folding her long legs into the sink and draping the rest of her body over my left arm as I use my right for soaping and rinsing. We do this about 3-4 times a day. I'm crazy, I know. But I can't stand the smell of a poopy, baby butt. Sorry. Now her legs are getting very long and she is getting heavier and heavier. I'm trying to figure out how to do her washings in the tub. The other kids used to stand in the tub and drape themselves over the edge for me to wash. Easy. There are bath chairs, but she is either too small for the ones built for special needs or getting too big for the ones made for non-sitting infants. Not to mention how expensive these devices get. Anyway, enough of that little rant ...

I wanted to write today about some of the devices that we already have for Jennah. With my studies in Medical Engineering, I've been thinking a lot about devices for special needs and the design and commercialization involved. I understand the reason for the heavy price tag and feel lucky we are able to obtain them, but I wish they were more available to others in need.
Here are some items that we have for her:

The Easys Jazz wheelchair/stroller hybrid, aka “The Chair” ($4000+) - this piece weighs well over 40 lbs and should be taken apart into two pieces for “easier” lifing and to fit into a typical trunk (or “boot”). It can also be anchored as-is with Jennah sitting in it in vans or buses with anchor points and a ramp. It comes with a double-paned plexiglass tray and provides her with the best support for her trunk, hips, and neck possible. Just sitting in it is considered work and therapeutic for Jennah.

Switch toys ($30 - $100 per switch, per toy) - we could probably get these cheaper if I just spend some time at Radio Shack and adapt some typical toys from Target or the mall. However, such toys are rarely appropriate as-is for our little Miss Jennah. With her poor eyesight and mobility, we have been working on alternative communication and these switch toys provide a basis for communication switches that we hope she’ll be able to use in the future. Basically, she hits a switch of various texture and sizes and receives immediate feedback in the form of movement and noise. It’s a simple concept that we take for granted every day.

The Bard gastrostomy tube ($20,000 installed + food and supplies) - this tummy tunnel is the primary method of feeding for Jennah and it has been an absolute blessing. This is when I appreciate medical technology. Jennah is back on the “normal” growth curve at the 25-percentile for both height and weight, which is absolutely phenomenal considering where she was just 3 months ago. It is a little plastic device that goes directly into her stomach and using and adapter tube and syringe, I provide her bolus feedings of 8 ounce, 4 times a day. I am also able to push her meds through the tube, although it does tend to get blocked up especially with the viscosity of Tylenol or her Lamictal “chewable” tablets if I don’t crush and dissolve them enough. We hope that in time, she will be able to sustain herself with oral feeds, but in the meantime, we are most thankful for this little device!

Ankle orthotics ($1180) – these cute little things were custom casted by a local Brit here in Dubai. I told him to make it girly and he came up with this cute design … and in pink, of course! Jennah has to wear these braces when we do weight-bearing exercises so that her ankles don’t collapse inward. They should also be worn with tennis shoes (aka “trainers”) to provide additional weight and traction. The shoes Jennah is wearing in this picture are Aziza’s first trainers from her first Li’l Kickers soccer class!

SPIO vest ($110) – these little vests are made in Kent, WA by a local physical therapist. The theory behind it is to provide continual spatial feedback during wear, and is much like wearing a girdle. It is constructed of a lycra-neoprene combination where the back panel is velcro'd onto the front piece. We are able to see immediate results in her trunk control … have you ever seen a woman in a girdle slouch? ;) She should wear the vest as often as possible, but with diaper changes, spit up, and g-tube feeding, we don’t get to keep it on her as much as we’d like. We just looked into some new custom-sized ones that they make over in the UK that include a zipper-entry, and a tummy tunnel hole along with diaper changing snaps, but it will run us around $850 USD. I guess nothing is too much for our little girl, although we’re going to wait until she really grows out of this one first. :)

The standing frame (free!) – we have been fortunate to be able to borrow this standing frame from the Rashid Paediatric Centre here in Dubai where Jennah goes for physical therapy. We have also acquired a bigger, more complex one, back in WA state for when we return, which was graciously donated to us from folks at Children’s Therapy of Woodinville (thanks Ms. Judy for ALWAYS thinking of us! And thanks Na Matt & Na Mark for coordinating, picking it up, and exchanging and picking it up again! We love you!). This is was extremely generous and appreciated as these babies typically costs at least $2000. The standing frame is, as you can guess, where Jennah does her brilliant standing and weight bearing exercises. This is really good practice to improve her bone density and we also hope it will aid in maintaining her hip stability. Ideally, she should stand in this frame for 30 min, 2x a day. I like to try to stand her in front of the kitchen door while I cook for that extra auditory and olfactory stimulation. :)

So there you have it ... what we play with all day, every day. And now, Jennah is telling me it's time to utilize that handy dandy feeding tube of hers. BTW, thank you to all my friends here in Dubai who put up with our tube feedings in public or in your homes, always ready with that cup of water for flushes and hopeful that she won't spit up all over me, you, and your decor. :)

Thanks for reading ... leave your comments!!


Thursday, October 1, 2009

Eating, tweeting, and not enough blogging ...

Why can't I manage to regularly post blogs? I want to and it nags at me like unfinished homework assignments. I have friends who post beautiful, articulated blogs multiple times a week! (you know who you are and yes, I am jealous!) I have unfinished blogs about my reflections during Ramadan and our Eid celebrations, but now that Ramadan and Eid are over, the mood is gone as well.

So you're just going to get what I decide to ramble on now, OK? In no particular chronological order ...

First of all, I'm twittering. Or is it "tweeting"? My brother made me do it and that's the story I'm sticking to. Anyway, I'll add the Twitter widget to my blog page so you can follow me if you wish.

Next, we've moved to a different villa! Just a couple streets down and still in the town of Mirdif, but those two streets make a world of difference in the flight path leading into the Dubai International Airport. Previously, jets were flying directly overhead. Jennah absolutely LOVED the noise! It was ground shaking and I'm sure the decibels were doing permanent damage to our ears. It wasn't our only reason for moving, but it's been one of the most noticeable. So long pink villa. Hello caramel villa! I will get pictures soon ... I hope. Or as we say, "Inshallah", which means "God-willing". The acronym "ISA" is often used especially for emails, texting, etc. Oops, a bit of a diversion there, was it? Anyway, this new brown villa is so much bigger and the rent is a lot cheaper. Prices dropped due to the shoddy economy soon after we moved into the pink villa. One word: Wardrobes ... w00t!! aka "closets". Imagine not have any closets in the house, which was the case at the pink villa. It was ridiculous! Now we have storage galore and I will never go without closets again, ISA. I'm telling you now ... appreciate your closets. Love them and never let them go ...

So Ramadan has indeed ended and was marked immediately by Eid Al-Fitr. It's a time to eat and wear new clothes and allow your digestive systems to function normally again. It was a three day celebration ... the second and third days undoubtedly used to recover from the first day's celebration! We had a great time, but it was exhausting no less. We have celebrated Eid in Seattle before, but that is nothing in comparison to the atmosphere here, of course! We began with Issam leaving at 6:30 AM for the Eid morning prayer, followed by a breakfast gathering at 8:30 AM (crazy getting the kids primped and out by 7:45 AM!), a late lunch at 3 PM, and a late tea in the late evening.

The kids had a blast and received a couple hundred dirhams as it is customary to gift the children with money. Jennah had enough and let us know around 9 PM ... poor thing.

Eid led us into Bassil and Jennah's illness. Undoubtedly, Bassil contracted the virus and shared it with his baby sister, but he barely showed symptoms with a mild cough and a decent amount of congestion. He was barely even fatigued! Jennah, on the other hand, had a terrible time. With her lack of mobility, the mucous buildup was hideous. She can barely control what excretions she has when she is well, let alone when she is ill. It was a mess, and later became a bloody mess, as she coughed and gagged on her own phlegm and was spitting up most of the food I put into her g-tube. However, the g-tube was a blessing in keeping her hydrated! A blessing until it became infected. Ugh. Her tube looks terrible right now. It looks like part of her skin has been flipped inside out, which as you can imagine, has become quite painful. We've finally started on antibiotics and hope to see an improvement in a couple of days. Don't ask me why it took nearly a week to get her started on the meds because I'm just a bit hostile about it. Let's just say that I miss the nurses line at Pediatric Associates. :(

So yes, I guess we've been a bit busy with the holidays, the move, and now Jennah's infection. Autumn quarter at U of Wash has also just commenced, so I am back in class. This quarter I am required to attend "live" at the lovely hour of 5:30 AM. Not terribly bad, I guess ... I could have been 2 or 3 AM! At least I get to have a nice cup of coffee and the rest of the house is still asleep so it's nice and quiet. I actually kind of look forward to it ... but don't tell anyone. ;)

Aside from the illnesses, the kids are all doing quite well! Aziza and Bassil have started "normal" school hours, attending from 8:00 to 2:30 each day. Aziza is also taking ballet and piano lessons at the school ... oh the convenience is just luxury! They will both be starting after school swim soon as well.

Jennah is progressing very well! She remains seizure-free Thank God! and has made great strides. She is improving on her neck control everyday and her hands are now kept open. Some of you may remember that she kept a fist, which was very infantile, until just recently. Now she is swatting and trying to use her hands with intention, which is very exciting! Therapy will commence again in the next week and once her infection clears up, we'll be visiting the orthopaedic surgeon, ISA, to check up on her hips.
Here is Jennah holding a piece of fresh-baked pita ... yummm

Time to make dinner ...


Sunday, September 6, 2009

Sleepless in Dubai

Hello from Dubai!

We survived the 2 + 16 hour plane ride. Only Emirates Airlines could pull off such a hellish trip. Of course, I have to admit that my kids are pretty well behaved. Then again, Bassil is a game/tv junkie and Jennah is immobile, so that just leaves Aziza as the well-behaved, lol.

The jetlag was absolutely horrible. The kids were waking at 3 AM and would fall asleep around 4 PM. It took a good 7 days for Bassil and Aziza to recover. Jennah, on the other hand, is a whole different story. She maintained her Seattle hours to the tee. Slept from 9 AM to 6 PM and awake the rest of the time. I have been on no nighttime sleep for over 10 days, I kid you not. I am exhausted. These past 2 nights, she is finally sleeping for some consecutive hours and awake during the day, but now I have insomnia. I am so exhausted that I cannot sleep and it makes me want to scream, but I'm too worn out to do so. Not to mention that we are still in the midst of fasting for Ramadan. I don't even want to count the number of days we have left.

Nonetheless, it is kind of nice to be home! The kids are back to swimming in our pool at night between dinner and bed time. But it's hot. True there is A/C everywhere, but for those 10 seconds when you're running, or should I say dragging yourself, to the car, it is hot. Like turn-on-the-broiler-and-leave-the-door-of-your-oven-open hot. Then there are the extra things that make you extra sweaty like trying to get all the kids buckled in and always wearing at least 2 layers of clothing to be hijaab appropriate. That said, I couldn't wait to get my hijaab back on! It's amazing that it's so easy for me to wear it ... I remember telling Issam long ago that I would probably never wear a hijaab unless it was in a mosque. Go figure ...

Today was Aziza and Bassil's first day of school at GEMS Royal Dubai School. Aziza has previously attended "Induction Day" where they new students to the school are sorted into Houses. Siblings belong to the same House, so we knew she would be joining Bassil in the Windsor House. We had a really great experience with Royal Dubai School (RDS) last year with Bassil, so I'm glad Aziza is going there this year. She was previously at the American Academy for Girls, but the single gender environment was just not working for us. Not to mention that there were just too many local Emraties (natives of the UAE) in their Bentley's and Hummers and a lack of cultural diversity. RDS has not disappointed us so far with diversity, although their emphasis on Arabic could be better. We also get privledged parking when we arrive with Miss Jennah in tow! This was such a great gester on RDS's behalf to allow us to park directly in front of the door in a spot that is normally coned-off.

First day of school is out of the way and things are beginning to return to normal. We have yet to resume Jennah's therapy as she recovered from the jetlag, but hope to do so soon. Ramadan is also going well and I hope to reflect a bit more on the holy month in the next blog. But experiencing it here is certainly different than in the U.S. I do appreciate all the non-Muslims doing their part in avoiding public displays of drinking and eating, although I disagree with it being a law. It's friggin' hot outside. I find myself subconsciously following water delivery service trucks while driving ...
Thanks for reading!

Saturday, August 22, 2009

Welcome to our new blog site!

I've remained true to Microsoft far too long, and it is now time to be selfish and move on to what I feel is a better blogging application ... so here I am. Sorry Microsoft. Damn Google!
On that note, I'd love to hear if you all followed my blog over successfully and if you prefer this platform over MS Live Spaces. Any other suggestions to what you like to see or hear are most welcome!
We are counting down our final days here in Seattle before returning "home" to Dubai. The kids start school on Sept 6 attending on "Ramadan hours", which is essentially half-days until after Eid since fasting students, teachers, and parents may become delerious with short fuses and hunger if the school days last too long. With that, I should say Ramadan Mubarak! or Happy Ramadan! We are departing Seattle on Aug. 26. Until then, Issam and I will be fasting during daylight hours, which in Bellevue is from 4:45'ish until just past 8:00 PM ... yikes! At least the weather is cooler here. For those of you new to the Ramadan concept, the holy month of Ramadan is the ninth month of the Islamic calendar. We do not eat or drink (that's right, NO water!) during daylight hours for 30 days. It is a purifying time of patience, humility, self-restraint and good deeds. Children, pregnant women, and the terminally ill are exempt from fasting. I made myself sick with nausea yesterday dreading the holy month! I feel guilty about it, but come on ... who is really excited for this? I do, however, look forward to returning to Dubai for the vast majority of the month as I hear it is quite a festive time of year in the evening hours once fasting for the day ends.
We are leaving Seattle on a good note as we finally received some good news in regard to Jennah's health!! We had our 24-hr video monitored EEG and it shows nothing. That's right ... Jennah is truly seizure-free! There were no underlying seizure caught throughout the monitored period ... phew! Our doctor was careful to say, however, that although things haven't gotten worse, things have not exactly gotten better, i.e. her brain waves are still quite depressed in comparison to a typical child. This is OK ... this is Jennah.

We also got another opinion on Jennah's hip dysplasia. This orthopedic surgeon also recommends the hip adductor release operation. So the question is no longer if we will pursue the operation, but when. We will return to Dubai and continue to monitor her hips very closely, i.e. x-rays every couple of months. If her hips continue to progress in this direction as rapidly, then we may return during the holiday season (i.e. Thanksgiving thru New Year) for the procedure. Ideally, we'd like to hold out until next summer's visit.
In other news, my little bro, Mark, received his BSN and Nursing Pin! Congrats Mark!
The ceremony was abruptly halted as they huddled to figure out the pronuciation of "Harnpadoungsataya" (Harn-pah-doong-saht-tie-ya) ... hilarious!
I have also enjoyed playing with the Sammamish Symphony for their Summer Pops concert. We played a free concert at Pine Lake Park and also at the Village Theatre in Issaquah. It was a bittersweet ending as we played our encore piece, realizing that I will likely not be playing again for another year. They do have an orchestra in Dubai, but I have not really considered joining them since it would be so temporary.
It's been hard saying goodbye to all of my friends here, but I am also so thankful for having so many of you to leave! I know I always say it, but I really do love all of you and am so glad to have your friendship and support for everything from playing online games, to coffee dates, to playdates, and just the words of encouragement are more meaningful than you may ever know.
Until next time ... from Dubai ...