ENT Appointment, where Laila is very 2

"Laila, you're very...2!"

The funny thing is, these words were exactly what I needed to hear from Laila's ENT. Most of the time, Laila is treated like a baby due to her short stature and {unwillingness? inability?} to speak. But yesterday, Laila's refusal to participate in the play audio hearing necessary to evaluate her hearing and the function of her pressure-equalizing tubes was completely age-appropriate.

Umm...good girl, Laila?!

It is nice when doctors recognize that within the tiny body is a little spitfire who has her own likes, dislikes and personality.

So, since Laila was sooo very 2 and because one of her tubes seems to be malfunctioning after only 5 months, she has been referred for an Auditory Brainstem Response test, to be done in the Operating Room so that her airway can be monitored. This test should give us more information as to whether hearing aids will be helpful. (Despite Laila not wanting to participate in the hearing test, she did seem to hear louder tones better, but the overall results were inconclusive, as usual.) At the same time, her ENT will probably put in a new set of PE tubes (3rd set before age three; I think she may be going for some kind of record!!)

Laila was also scoped to determine whether the Zantac/Prevacid combo is making any difference as far as her reflux/laryngeal inflammation is concerned. We never found out, since her doc was so impressed by her need for a steroid nasal spray that we moved onto that discussion and never went back.

But, hopefully the addition of Flonase--which she couldn't take until now, several months after her palate surgery--will help stop the awful HISSING all night long.

We shall see.

One of these days, I will actually write some background info about Laila, but until then, feel free to hang in as the mystery continues...

Pedi Visit

I have to start somewhere and since I can't seem to find time to start at the beginning, the middle will have to do.

Laila is seen by her awesome pediatrician every 3 months when she is well. In between, we coordinate with a number of specialists, including Gastroenterology/Motility, Pediatric Surgery, Otorhinolaryngology, Orthopedics, Ophthalmology, and Endocrinology, as well as Early Intervention, which includes Special Education, Speech & Language, Physical Therapy, Occupational Therapy, Nutrition and Music. She will also begin Hippotherapy soon.

Yesterday we had one of her pedi visits. Her pediatrician, for once, was thrilled with her weight, which is finally on an upward trend! The weight gain, I'd imagine, is due to more successful feeding thanks to our inventive use of the Farrell Bag, which we've been using to vent her stomach (g-tube) while we feed through the jejunum (j-tube). Laila blows through 2-3 Farrell bags a day, but her comfort, weight gain and strides developmentally are well worth it.

Just this past week she learned to give a high-five and has shown much more interest in playing with toys.

Next steps medically involve getting the antroduodenal manometry study done at Children's Hospital Boston to evaluate the extent of Laila's dysmotility and talk about next steps (i.e. will she benefit from an ileostomy), getting insurance to approve Mepilex AG for use around her G-J button site so we can stop cauterizing it so darn often and increasing Flovent slightly to try to decrease the familiar "change of season wheeze".

Other than that, my "Puggle" is a happy girl. That's all for now. One of these days, I'll get around to posting about Laila's underlying conditions and all of that.

Cheers. :)

In Progress

As you can see, this blog is very much under construction. Ultimately, the goal is to create something dedicated to my quiet little girl, Laila. My personal blog, A Little Twisted, which is also quite new, will likely talk about Laila, the boys and parenting in general quite a bit, but more from my perspective as a mama with Ehlers-Danlos Syndrome.

Laila is an amazing little girl and I get the feeling she's love to tell her story to the world. Until she's able to do so (or tell me to stop doing so), this will be her primary forum.

I'd still love you to check out "A Little Twisted" and hear about EDS, me and the rest of us, but I won't be so presumptuous as to assume that you all want to immerse yourselves in it. So, if you just want to know what's going on with Laila, you're in the right place...once everything is up and running.