Happy New Year!

We’ve had 3 or 4 new calendar years, i.e. Eid, Rosh Hashanah, “normal calendar” New Years, Chinese/Lunar New Year,  and 1 new fiscal year begin since I last wrote … 7 months have gone by.

During the past 7 months, Jennah has finally fully recovered from her hip reconstruction … yay! The doctors told us it could take up to a year to recover, but I didn’t truly believe it. The procedure was truly invasive and traumatic and little Jennah is such a trooper for having endured it all. She lost a whole inch in height/length, but she can now fully straddle the horses for hippotherapy and her hips are well placed in the sockets … wohoo! In addition to the robust titanium hardware now permanently implanted into her hips are 6 scars and extra hairy legs … another “rare” side effect from having a fully body spica cast that just happens to affect her.

In September, Jennah began attending preschool at the local public school. I drop her off at 12:30 everyday, except Wednesdays, and she rides the bus home at 3:15. This has been a challenging adjustment for mom and Jennah. Major separation anxiety for both! Then at the end of October, just as she was adjusting well to school, we decided to wean her off of one of her seizure meds. Great news to be able to get rid of one of the most depressing, sedative medications on the market (phenobarbital), but then withdrawals hit. The holiday season, between Thanksgiving and New Year, was filled with screaming and temper tantrums as she worked the medication out of her blood. She is finally feeling better now, but she has unfortunately started having seizures again … UGH! We are feeling pretty confident that we can get the seizures back under control by increasing the dosage of her other medication, Lamictal, which she’s tolerated very well with very little side effects.

Nonetheless, Jennah continues to make some really great, exciting strides! She is now standing in a stander at school up to 30 minutes at a time without complaint. She can also keep her head up (as you can see in the pictures!) for minutes at a time. Now that her hips have healed and her head and trunk control has improved, she is beginning to sit, unsupported, for a few seconds at a time!

I still reminisce a lot about Dubai … especially the perfect weather they must be having now, not to mention missing my dear, dear friends. But when I see how much Jennah has accomplished this past year (we arrived on Christmas day, 2010), I remember why we made the decision to come back and why this is the best place for Jennah. My immediate family is here, too, and without them, none of this would be possible. The pediatric specialty care here is just incomparable to the rest of the world. Emergency aid in less than 5 min, blood test results in hours, nurses on-call for random questions … luxury to the parents of a disabled child! The benefits of Jennah attending an integrated school program alongside typical children have been immeasurable.

We are home now … Happy New Year!

How I ruptured my eardrum–by me, Miss Jennah!

A ruptured eardrum sounds a lot worse than it really is … although in my case, it probably is a lot worse than it really should be! It’s a wonder how sweet, innocent, little ol’ me managed to rupture my eardrum. It couldn’t have been from too much Lady Gaga, could it? No. Nonetheless, I will share with you my technique for rupturing an eardrum …

1. Have your parents decide that you need reconstructive hip surgery, which will put you in a spica cast for 6 weeks. This will keep you immobilized from the chest down (don’t worry, you head and arms are free!). Despite the nasty smell of the spica cast after the first week, you will begin to become accustomed to the cast. In fact, you will feel very secure in the cast and find that you no long need to use your leg muscles. It’s a great way to lose weight and muscle mass!

2. This is the most important step. About 1 week before getting the cast off, catch a cold from your brother or sister. If you don’t have a sibling, an airplane ride or trip to the Dr. may suffice.

2. After 6 weeks, have the spica cast sawed off. My mom couldn’t wait for this to happen since she was really tired of carrying me around in the cast and treating it daily with a vinegar wash. She tried to make the cast smell better, but it really didn’t work … shhh! don’t tell her!

3. Immediately after having the cast removed, SCREAM! and cry and scream some more! Because it’s going to hurt like crazy, folks! They will put you into a soft brace to help maintain your legs and hips in the same position as the cast, but it’s not the same! The soft brace is “soft” … it moves and so will your hips. The skin on your legs will have goosebumps big enough to slow down a speeding car in Dubai. Stop screaming only when no one touches you. You won’t want any hugs, you won’t want to be held, you won’t want to be fed. Most importantly, don’t move a muscle because it will hurt and it’s just really scary!

4. The first week out of the cast will take some work because you have to cry and scream a lot and not sleep very much. Also, since you won’t want to move or be moved at all, for fear of pain, you won’t be able to belch/burp/wind, so you’ll spit up a lot. Your spit-up and vomiting will be even more productive and messy if you managed to catch that cold earlier as mentioned in step 2. Since you can’t change positions very quickly to vomit into a bucket or off to the side, a lot of it will just shoot right back up into your nose and into the back of your ear. Prime recipe for an ear infection, wouldn’t you say?

My mom noticed my ear infection about 10 days after I got the cast removed. Since I can’t talk or tug on my ear like other children, my mom somehow figured it out when I flinched at the touch of my ear. Then she tugged on it again, just to make sure … OUCH! Gosh woman! Leave my ear alone and get me some antibiotics already! So we got to visit the Bellevue Seattle Children’s Urgent Care clinic for the first time ever! I was looking forward to the ride in the car …

Oh sorry … I’ve diverted from my step-by-step instructions!

5.  Continue to move around very little. With little movement, you won’t be able to help your ear relieve the pressure. You don’t want that ear infection to clear up too quickly! My friends with tubes in your ears, I’m afraid it will be very hard for you to accomplish this task since your tubes will help your ears drain … drats!

6. Once enough pressure has built up in your ear, let your eardrum rupture! They say that sometimes a rupture will heal on it’s own immediately, but if you have a case bad enough, you can get it to rupture again … wohoo!

I managed to do this since I’m sooooo good at not moving around. When my ear started draining, blood started seeping out along with the drainage. It was kind of messy! My mom thought it was just ear infection drainage, but I continued to cry and scream, and, most importantly, bleed from my ear a bit more. So we got to go to the Urgent Care clinic again! Only 5 days from our previous visit … fun!!!

I have some more antibiotics in the form of ear drops now. This should help heal the eardrum and keep it healed. The Dr. thinks I’ve ruptured it at least twice. I’m feeling better now and my mom can lightly touch my ear to get the drops in. I’m also starting to move my legs a bit. Best of all, however, is that I’m out of my soft brace! It still hurts to be moved around, but I can tolerate being out of the brace now.

I’m going to go back to my own pediatrician this week, inshallah, to make sure the eardrum has healed. Hopefully it has because I don’t want a patch on my ear, or worse, and surgical procedure!!! My mom would not be pleased. She’s so easily stressed out anyway …

Thanks for reading my long blog post!

Love to all,

Miss Jennah