Oh The Places You'll Go...

The little miss the other night at 1:30 AM.

She looks sleepy, doesn't she?


Yep, I said 1:30. How can you be mad at her though, with a smile like that?

Yesterday was a big appointment day for the little princess. A neurogeneticist appointment, GI appt, and dietitian. I keep trying to tell Bella that I will gladly have girly days with her that don't involve medical appointments.

It was tiring, not only emotionally, but also in general! The Cleveland Clinic is huge, and our appointments were on opposite ends of the campus

Not sure this will interest anyone, but here are some of the highlights (or lowlights).

Bella is not gaining weight (which I knew...). She's still the same weight that she was in July. She has grown in height, but the concern is that she won't keep growing. If Bella's only meeting her minimum amount of calorie needs, (which I'm pretty sure Bella is), height will begin to taper off. On a positive note, her growth curve looks awesome! Yay me! (No, I'm not being sarcastic, it really does look good for the last 6 mo). :)

I've avoided it as much as I can, but we are scheduled for a gtube on October 20th. So for everyone who has been pushing for Bella to have a tube placed...you win (and for the record,-even though I should probably let it go,-I think it's it a lot easier to have an opinion when you are on the outside looking in. It's not your life, your family, and your daughter who will be affected).

On a positive side, feedings will probably be a lot less stressful for Bella, and we'll only be spending 20 minutes feeding her, as compared to an hour.

The neurogeneticsist is always the stressful appointment for me. Bella's MRI showed hypomyelination, instead of delayed, so that changes some things. Myelin is the protective covering over the nerves, which helps them to transmit signals. Delayed myelination means there is a delay in the formation of the myelin. Hypomyelination on the other hand, means the myelin is there...but the consistency and quantity of it is abnormal.

Hypomyelination is somewhat rare, and still pretty new. There's so much which still just isn't known. The National Institute of Health in Washington DC, has an expert on hypomyelination, and is interested in seeing Bella, if we agree. They would pay for the visit and testing, we would only be responsible for lodging and transportation to get there.

NIH? Washington DC? Good grief, Bella.....At this point, nothing surprises me anymore.

Our Dr did order two more neurological tests, both of which take about 4 months for results. (sigh). He also wants us to see another opthamologist, and genetics at Cleveland.

So..I'm tired. I did treat myself to a pumpkin spice latte and some sangria. (Not together-haha). There's a lot to process and think about.

One thing's still the same. No matter what worry, stress, fear, and tears this little girl puts me through-she still rocks my world.

Even at 3:30 am.
(Yes, this is another night, and yes, it's 3:30)