Who's this big girl?

Some exciting news- Marley continues to grow!

On Tuesday I took Marley to her pediatrician for a weight check. Perhaps it was all my wishful thinking, or your prayers or all the greek yogurt I force down her throat- but Marley has gained almost a pound and grown almost an inch in just 6 weeks!!!

Her official stats are 17lbs 15ozs and 27 inches. I'm so excited I'm going to go buy a convertible car seat to celebrate! Though she is still in the less than 1st percentile she is growing!

Finally, some good news!

Marley also got her seasonal flu shot. We also saw her cardiologist this morning for a repeat echo and follow up. Her pulmonary stenosis and aorta coarctation are still the same but she will most likely need another cardiac catherization sometime next year. This will probably happen at least yearly until she gets a stent placed when she is around 4 years old.

I also have all of her other doctor visits and procedures scheduled through the end of the year- Neurology, Orthopedics, hand surgeon, MRI, sedated hearing test, CT scan, ENT, Neurodevelopment and weekly OT, PT and communication therapy.

Pretty Pink Cheeks

Don't you just love her little pilot cap? We bought upon the suggestion of our audiologist who thought it would be hamper Marley's ability to pull off her hearing aids and plop them into her mouth. Marley has mastered the skill of pulling out her hearing aids so well- even if they are attached to her clips. We either have to have a very watchful eye or throw the pilot cap on. Fortunately, she doesn't seem to mind. So what do we do when she figures out how to take off the cap?

The saga of the sleep apnea and snoring has been temporarily resolved. A 2 week course of antibiotics has cleared up her congestion greatly though it hasn't been eliminated. But no more supplemental oxygen, no pulse ox, and most importantly- no surgery. Her next procedure will be Friday, November 13th (yup, you read that right) for her sedated hearing test, MRI and CT scan. I'm sure that the CT scan will reveal that her adenoids are enlarged and I'm sure that at some point in the next year, she'll have her tonsils and adenoids removed- but for now it can be avoided.

So yes, I chose for my child to have anesthesia on Friday the 13th because I figured it would be a light day in the OR at Children's Hospital as many parents are way more superstitious than I am. Hopefully, things will go more smoothly than they have in the past.

On a bright note, Marley has been accepted into a University of Washington study on eye communication in toddlers with developmental delays. She has been randomized into the treatment group and will get 16 weeks of treatment. And it's all free!

Sadly, Marley has not grown in the last 4 months. While she is height/weight proportional her head is not growing which means her brain is not growing. I feel like I feed her so much and just can't understand why she doesn't grow. Ah, it's probably that darn unknown genetic syndrome. But it is infinitely frustrating! Our pediatrician has mentioned Marley getting a G-tube which means she would get feedings at night through a hole in her stomach. I am not thrilled and have not agreed to that plan. I have so many misgivings about G-tubes- most importantly, it's just one more thing that means that my kid is not normal.

I know Marley is not normal, typical, average- she never will be. But why the fuck do I have to subject her to a surgery and a way of life that completely sets her apart from her peers? I wish I knew just 1 other mom who understood what I was going through and the hard choices I have to make. I just wish there was one other mom out there who also had to face everyday with the unknown.

Okay, enough of that. My intention is to at least end each post with something positive. Let's see...Oh, Marley is getting 3 new teeth...which means...she can eat more, she's developing and most importantly- we don't have to see a pediatric dentist to figure why she hasn't gotten in almost all her teeth yet. Yay!!!