Sunday, November 7, 2010

A big one hits Jennah ...

Halloween 2010 will undoubtedly be one of the most memorable Halloweens for us! It was our first attempt at participating in Halloween festivities here in Dubai. The weather was actually pleasant with a little breeze. I had assumed that we would just dress the kids up and let them run around the outdoor mall and not expect any candy. It was pretty cute, actually … what they do here is arrive with a bag of candy and trade with each other. Such a great idea! A & B were confused as they hadn’t arrived with any goods to trade. Luckily our friends from school who had instigated the whole affair came prepared for the crazy Americans who knew little else from going door-to-door on Halloween. After a lot of running around and mistaking women in abayas for witches, we rushed the children home around 8 PM as all the Year 2 kids had spelling tests in the morning!


A is a "hip-hop" fairy and B is the Spider-Man
 We managed to get A & B into bed by 9 PM … a little bit late, but not too terrible. Jennah was still awake, a bit wired from all the festivities. She began humming herself to sleep as she often does and she was even giggling a bit as she fought sleep. I must of dozed off by her side, because the next think I knew, I felt a big jerk from her legs that started me out of sleep … then all hell broke loose: breakthrough seizures, which became status epilepticus … this is bad.

9:44 PM – Jennah jerks and begins vomiting; Eyes fixed to the left and dilated; non-responsive to light; shallow breaths; apneic (lips turned blue)

10:01 PM – got a hold of her neurologist in the U.S.A. to confirm dosage of rectal Diazepam (Valium) to administer

10:07 PM – administered 5 mg rectal Diazepam

10:19 PM – seizures stop

10:25 PM – paramedics arrive

10:56 PM – arrive at American Hospital’s ER (cannot believe how long it took us!! should've driven ourselves, but we were not in the state of mind to do so); seizures begin again as soon as we pull into the ambulance bay

11:00 PM – doctors order and administer another 5 mg rectal Diazepam

11:13 PM – seizures slow down, but do not altogether stop; 270 mg (not sure why this amount since it was supposed to be 20mg/kg) phenytoin (Dilantin) administered over 30 min; no change in seizures

0:01 AM – 1mg IV Valium administered; seizures stop

1:25 AM – seizures begin again

We head up to the ICU, which for the life of me, I cannot remember how the hell we got Jennah up there! Was she on a gurney? Did we go in an elevator? So weird that I can’t remember …

Anyway, we agree to take “aggressive” measures to stop the seizures. She had been seizing for nearly 3 hours and we have to get them to stop! The longer they go on, the more likely that there will be damage and regression. Ironically, since Jennah is so delayed and damaged to begin with, odds are in our favor that she won’t lose much more … if that makes any sense. So bring on the phenobarbital … we HATE this medication. It’s a big depressor. After all the Valium/Diazepam she has had, plus the phenytoin, adding this drug will severely jeopardize her respiratory system. Wonderful. So she needs to be intubated and put on a respirator, “just in case”. Additionally, they’ll throw in a central line straight through her jugular vein for easier blood draws and medication.
Jennah in the ICU on a ventilator w/ a central line in her jugular vein

She looks like hell, but what do you know? Phenobarbital works again … no surprise. This was also the drug of choice when she started seizing at 12 hours old. And back then, it took us 16 days to wake her up‼ During the next 24 hours, she seized 4 more times and was given Midazalam (Versed) each time, which slowed them down to a stop. Subsequent EEGs showed no more seizure activity. The video shows one of her "aftershock" seizures and the nurse administering Versed to make it stop.

video

Although Jennah was far from her normal self and barely awake, I begged the doctors to discharge us. I was frustrated with the nursing care, not to mention the hell that my husband and I had to go through to coordinate and care for our other two children. The poor kids missed their little sister, too! But seriously, there were only 2 pediatric nurses on staff (literally‼) and only 1 of those 2 knew how to feed her through the G-tube. Ugh. So we were finally discharged and we bee-lined it straight home! Oh, and when I was about to pull into my street, the hospital calls … they had forgotten to give us the discharge instructions. Not surprised. To all my nursing friends and brother in the U.S. … you are incomparable to the rest of the world‼

Thank you all for the phone calls, texts, FB messages, etc … it was hell for us, but you made it bearable. Chris and Cristina – I can’t begin to tell you how much your visit helped. And Chris, you always leave me speechless, but with a clean house and a full stomach. :) (((HUGS!)))

Saturday, October 2, 2010

Back in Dubai and loving it!

Things are back to "normal" again ... yay! Ramadan and Eid are over, A & B are back in school complete with after school activities and swim lessons, and Jennah has resumed therapy sessions at the Rashid Paediatric Center. I love it here. I really don't have much to stress about, so I find things to stress over. Right now, it's the fact that we (the kids and I) have to return to the States in just over 2 months. I love my friends and family there, but I don't want to go. In the long run, we'll have to return for Jennah to receive the best care and schooling, but I'm not ready. A & B's school here is phenomenal compared to the U.S. It's sad, but true.

Ready for 1st day of school back at Royal Dubai School
Our return in January will not be fun at all. I have to complete my last two quarters at UW and receive my MME degree in June 2011. It will definitely require some work. Jennah will have reconstructive hip surgery and we will continue to tackle her seizures. Oh yeah, since my last posting about the 24-hr EEG, we learned that she has not been seizure-free. At all. In fact, she has been having seizures daily and I didn't realize it. Her current medication is at maximum dosage, so I pray that it will work before we have to introduce yet another new medication. This, we get to tackle in January. So no, I don't want to go back. It's not going to be fun and games at all.
Jennah practicing her fab standing skills ... GO Jennah!

So I guess we'll just enjoy what time we have left here. The weather is going to be absolutely perfect in a few weeks so we'll have lots of picnics, and coffee dates outside. I'll go for high tea at fancy hotels with my lovely friends. Inshallah, inshallah. We'll have fun while we can ... lots and lots of fun ... can't wait!

Oh, and look what A won! She was awarded "Sports Performer of the Month"!! I believe she was nominated for her efforts mostly in swimming, but generally, she is a very good sport. She doesn't win very often (actually, she's NEVER won an event!), but she is a very gracious loser and exhibits wonderful sportsmanship while trying her very hardest. I couldn't make it to the assembly when she was awarded ... God knows I tried. I was there, but Jennah wouldn't let me stay. It was a hard day, but we are so proud of you, A!

Well done! We are so proud of you!!


Sunday, August 1, 2010

Happy 3rd Birthday, Miss Jennah!

Three years ago today, our lives were flipped upside-down and the world seemed to come to a complete stop. You can reread some of my original posts after Jennah’s birth here: http://sariya76.spaces.live.com/blog/cns!21374023F554B726!607.entry

Jennah fresh out after emergency c-section, pale, not breathing
As with any birth of a child, lives are changed forever as families welcome a new being. However, with Miss Jennah, it felt like we moved into a parallel universe. Everything was unknown. Her very survival was questionable. I could no longer look to the books that I had studied such as, “What to Expect When You’re Expecting” since this was not at all what we were expecting, or even “Your Child’s First Year” since we didn’t know if she would survive her first year at all. Months later we would gain books on epilepsy and cerebral palsy. Not necessarily the books you plan to have on your bookshelf …

Nonetheless, Jennah has been my biggest accomplishment and my pride and joy. She makes my life worth living. Of course, I love my husband and my other two children, but Jennah is the one who is completely dependent on me and will continue to be for a long, long time. I don’t mind one bit and wouldn’t trade our situation in for the world. Lately, I have realized how much I actually enjoy my life. Aside from our exotic living situations, I never get bored. I’m always busy juggling A & B’s schedules and caring for Jennah at the same time. I feel guilty that my hubby has to work day to day and remember those days of going to work every day, drive the same road, enter the same building, sitting my butt on the same old chair, which, let’s face it, we keep the same old chair since it has molded comfortably to your ever growing, ever sagging butt.

With Jennah, there’s always a surprise or something new to tackle. She keeps my life an appreciated challenge. Changes in drugs, changes in her weight, changes in my weight, new abilities that she’s developed, the threat of a seizure or aspiration on her own saliva or spit-up, the occasional diaper blow-out, which would typically be gone with potty training, and heaps of equipment that enables me to care for her day to day. She’s even made me the healthiest and fittest I have ever been. It’s the only way I can keep up with the physical demands of caring for her.

To top it all off, I have AMAZING, and admittedly quite beautiful, friends EVERYWHERE! Be it here in the States, or back in Dubai … or even if I end up in Germany, South Africa, or New Zealand for some odd reason, I have friends who will be there to support me. You are all absolutely amazing … thank you. From the bottom of my heart and the core of my soul, thank you.



















And to keep things exciting for Jennah’s 1st week of her 3rd year, we will enjoy a 24-48 hour inpatient stay at Swedish Hospital for a video-monitored EEG. She’ll be hooked up with 20+ electrodes cemented to her head and confined to our hospital room as she is videotaped to record her actions with brain activity. The goal is to see what type of seizure activity may be left and if they are worth treating further to avoid more brain damage. Ideally, we would like to being weaning her from the last medication that she is currently taking. Hard to believe that there was a time during her 1st year when she was on 4 anti-seizure medications simultaneously and has actually tried 10 different types of meds altogether … what a life.

Jennah has now awakened from a little birthday slumber, so off I go to play with one of the best things I have ever made …



Happy Birthday Jennah!!!

Thursday, July 15, 2010

Where's the hippo?

Most of you have probably already seen the amazing pictures on my FB page from Jennah’s first hippotherapy (physical therapy while horseback riding) session at Little Bit Therapeutic Riding Center (http://www.littlebit.org/ ). Hippotherapy is not an “official” form of therapy as it has not been proven to show results. Some insurance companies don’t even cover it. It’s a ridiculous shame and I think a disservice to so many disabled children out there who could benefit from it. Regardless of what those people say, I am here to declare that it is absolutely awesome! After a 30 min. session of traditional clinical physical therapy, we prepped Jennah for her first ride. There is no riding helmet in the world that would fit her little microcephalic head, but with some padding, we made do and onto the horse she went! It didn’t take long before Jennah began supporting her own head and trunk for extended periods of time. She was all smiles despite the wide spreading of her hips and her ankle-foot orthotics, which she usually resists wearing. She had many points of stimulation to make up for her lack of vision: the rocking and swaying of the horse, the warmth of the animal’s body (she was riding bareback!), the sound of the horseshoes clip-clopping on the pavement, and the smell of the horse, hay, and other not so pleasant, but still stimulating, odors. I met one father there who was watching his sons ride. He told me that doctors had ruled out walking for one of his sons. They put him in hippotherapy and I saw with my own eyes that the boy can walk. Not well by any means, but he was definitely walking. We just hope that Jennah can hold her head and trunk up for extended periods of time … maybe even sit up on her own some day …


As for the other appointments …

• Dentist – B had excess gag-reflex so no x-rays, sealants required for A, and decalcification on Jennah’s molars, so will probably have to go to Seattle Children’s to fix this up in January.

• Nutritionist – she’s a bit too chubby for her height. She’s 40 %ile on weight and only 20%ile on height. So we’re just cutting out a few ounces of Pediasure, supplementing with vitamins, and increasing water to maintain overall fluid intake

Orthopedics – UGH! Not good news. The dysplasia is getting worse and still progressing alarmingly fast. It is now inevitable that she will have reconstructive surgery involving bone and muscle cutting in January. Bummer.

G-tube replacement – what a little trooper!!! After being numbed with heaps of lidocaine, they ripped the old g-tube out. She whimpered for literally 30 seconds and then she was fine! We now have a Mickey g-tube instead of the Bard, which will allow for easier changes that I can perform myself, however, the changes must be done quarterly rather than yearly.

Next up …

• 7/20 – Neurodevelopment
• 7/28 - Neurologist
• 8/2 - Pediatrician - 3-year check up

Until next time … thanks for reading!!!
(((HUGS!!!)))

Tuesday, July 13, 2010

Nothing gained, nothing lost ...

Hello from Seattle!
I'm not even going to bother apologizing for not posting more often and go with my daughter's wise words learned back in preschool, "you get what you get, so don't throw a fit" ... most often in regard to cookies, cupcakes, or the color of paper they got back then, but words to live by no less!

Indeed, we are in Seattle, escaping from the horrid heat of Dubai. When we left Dubai, it was hovering around 117' F. We arrived in Seattle where it was 58' F and we were freezing! It was literally half the temperature that we left. Jennah doesn't own any long sleeved clothing and has resorted to wearing B's smaller clothes ... very cute.

While it’s wonderful to see old friends and family, our primary goal (or at least my justification to dear hubby) is to make the rounds with all of Jennah’s doctors and intensive therapy. This week is loaded with appointments and we went for our first appointment yesterday to the ophthalmologist at Seattle Children’s Hospital. I got my C.A.P. (Clinic Access Pass) Badge, which allows me to fast track through registration procedures since we’re a frequent visitor. It sucks to have one of these since it’s obvious that any parent who wears one of these has a child with a chronic condition. Nonetheless, there is an unspoken bond and friendly smile when we pass by one another with our huge babies in arms, special prams, or wheelchairs.

Without further delay and ramblings, let’s get to the report …
  • Ophthalmologist – in brief, the VEP (Vision Evoked Potential) measures brain waves in response to visual stimulation. Jennah did a fab job during the hour-long visit, which involved scrubbing sections of her scalp and securely gluing on electrodes for an abbreviated EEG. She barely fussed and seemingly looked toward the monitor when we made noises with bells and rattles to grasp her attention. On the monitor were images of black & white geometric shapes and lines at various resolutions. Unfortunately, the results showed pretty much nothing. Meaning that her brain registered very little. This was expected, but that little tiny glimmer of hope that something could be done for her vision was diminished. She sees like a newborn. Blurry and clueless. But this is OK. We haven’t lost anything. She just never gained vision … never learned to see. As I’ve tried to explain to others before, it’s like an open window with no one looking out. Her occipital lobe has atrophied and there is really nothing to be done. No point in torturing her with patching, operations, contact lenses, or glasses. Well, perhaps just some super-cute sunglasses to protect her eyes since she does respond, as a reflex, to bright light! On the positive side, we can rule out any vision-oriented therapy and appointments and focus on her other skills.
Appointments to come …

  • Every Tues/Thurs – physical (physio) therapy and hippotherapy (horseback riding). Our dear occupational therapist, whom we won’t be seeing anymore as Jennah’s needs do not require her brilliant services, got us into the Little Bit Therapeutic Riding Center (http://littlebit.org/). This place is in very high demand, so we are very fortunate to have been given a place this summer! She’ll be receiving 30 min of clinic PT followed by 30 min on a horse. You can bet that pictures will be soon to follow! We will also look further into aquatic therapy once a week.
  • 7/13 – Dentist for all three kids … yes, even little Miss Jennah!
  • 7/14 – Nutritionist &
               Orthopedics – the one we’ve all been waiting for … what will we do about Jennah’s displaced hips??
  • 7/15 – G-tube replacement – this is going to be a painful one … yikes!
  • 7/20 – Neurodevelopment
  • 7/28 - Neurologist
  • 8/2 -    Pediatrician - 3-year check up
A & B are also doing well and have adjusted to the jet lag … took exactly 7 days!
A is doing ballet and jazz with her old dance company
B will do sports camp (basketball, soccer, baseball) next week

Thank you all for reading and you can expect another post later this week … but no promises ;)
(((HUGS!!)))

Friday, April 9, 2010

Jennah has been seizure-free for ONE YEAR ... Wohoo!!!

That's right! A whole year. April 9, 2009 was the first day that Jennah went for 24 hours without a seizure. They haven't returned since, Alhumduillah! Since last year, we have weaned her from all but one of her medications, which is now a mere 50 mg of Lamictal once a day. Good bye nasty side effects! She is so healthy and so happy now. Her development has noticeably improved. One of the most miraculous is that she can see! Well, at least we think she can and only when she really wants to. We take so many things for granted and it's weird to watch her actively "switch-on" her seeing ability. But I think this is possibly what is happening. She's also getting so big! More difficult on us as we have to carry her around, but well worth it. She is also "talking" soooo much! She laughs and squeals and tries to imitate sounds. It's the sweetest thing to my ears and we can't get enough of it!

As for blogging, I've been terrible indeed. Since the last blog some 3 months ago, I began winter quarter for my Master in Medical Engineering program and it was absolute hell! Thank goodness I have some amazing friends here who helped me through it by dragging me out for coffee dates whenever I had a free moment and especially to my then next door neighbor, Sarah who was at my beckon call and helped with the kids' school pick ups and drop offs.

I hope to blog more frequently (I know, I always say that!), so here's summary of more notable events for now ...
My dear friend Sarah moved away and I was surprised at how much this affected me! Not that I'm cold-hearted, but I'm just not used to having such intense relationships end so suddenly with the possibility of never seeing my dear friend again. Thanks to email and Facebook, we can still chat and keep in touch, but it's not the same as random tea (cuppas) and the UK vs. US English confusion among our conversations. And worse, I know that I will lose more friends as is the nature of our lives here in Dubai. I don't see it getting any easier, so I'm dreading it. All I can say is that I have AMAZING friends here and all over the world and I want to keep everybody around me all the time!

We celebrated Easter, Dubai-style as Aziza's classmate hosted an Easter party complete with egg dying and egg hunt!


And finally, we just had Bassil's 5th birthday celebration. His actual birthday isn't until the 13th, but we had to rush it a bit as a couple of his friends are going on holiday as we are in the midst of Spring Break. Oh the torture of Spring Break ... enough said.
Bassil's Transformer birthday cake! Carrot cake w/ cream cheese frosting, decorated by my beautiful friend, Rima!




Friday, January 1, 2010

Just need to remember, Miracles Happen ...

I find myself living in fear that Jennah’s seizures will return. On January 9, 2010, God willing, she will be 9 months seizure-free. Yay!! But I have that constant fear, one that keeps the muscles in my neck taut and stressed, that she will start jerking in my arms. If that were to happen, it would mean that the seizures have overcome the daily dose of medication she is taking. She’s currently only taking 50 mg of Lamictal a day. Her drug curriculum is so easy now compared to when she was on 3 different medications simultaneously with administrations four times a day! If the seizures return, treatment would be difficult as the drugs left to try on the list were the ones more toxic. It feels like a dream and I’m afraid I’m going to wake up. It seems like it was just yesterday that she was seizing. I still remember how she felt and how we became almost numb to the thrashings of her mind and body.


She is only 2 years old, this I must remember time and time again. It’s been an incredibly long 2 years with so much accomplished and experienced. We’ve done so much time in the hospitals between NICU, 24-hr EEG surveillances, G-tube operation and all visits in between, not to mention those to come. I earned a “fast pass” and an ID lanyard at Seattle Children’s last summer to forgo the initial registration formalities. These are not things to be proud of.

I don’t know what the future holds for us, but I find myself trying to figure and plan it all out. I’m compulsively detailed-oriented, much to my determent. Everybody wants to know when we will return to the U.S. Even I want to know when we will return! I know I must return by January 2011, since that is when I need to complete my last two quarters, in person, to earn my Masters in Medical Engineering. But the year between now and then hold another “if” … Jennah’s hip dysplasia. So here it is … if we can wait to perform the tenotomy for her hips until December 2010, then we will. But if we can’t, then we may return to do it sooner. Then that brings up problems with Aziza and Bassil. Do we move them back to the States for a portion of the school year? Do we leave them here with their dad (I don’t think I’d survive this option!)? Would we leave Issam behind and move back early? All these questions and options with no answer that would make everybody happy … this is what drive me insane. I know I should just take it one day at a time. I try. I can’t. I think about it every waking hour and have dreams about it in my sleep.

So there you have it … another one of my rants and not so much raving this time around. Additionally, I am not in much of a mood to post pictures into the blog. Instead, I have compiled a video of Jennah’s year of epileptic episodes. It’s hard for me to see and remember what we went through, but at the same time I appreciate how well she is doing now. Sorry about the music in the video … it came with the computer, LOL. I had wanted to use “Miracles Happen” by Myra, but I couldn’t allow myself to pay $0.99 to download it nor could I bear breaking any copyright laws (damn Microsoft for ingraining these ideas into me!). So maybe you can find it on Youtube (http://www.youtube.com/watch?v=UKgqnSo6_ME&feature=related) and play it while watching the video … ;-)
Or better yet, click on both of these videos and turn down the volume on the Jennah video to get my intended effect ... there! a work around that doesn't infringe on copyright laws ... the things that make me happy. :)





Oh, and HAPPY NEW YEAR!! Wishing all your families hope, love, and prosperity in the new year.

Love to all …