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. :)