Skip to main content

A diagnosis...

Today was Raya's 6 month follow-up with her neurologist. I should just quit forming expectations about doctor visits because I'm usually wrong. :) I was expecting her to say that Raya looks great & we don't need to see her again, and half of that happened.
To start, Raya now weighs 9.3kg (20 lbs 8.2 oz) which is HUGE compared to our other kids. Developmentally she's doing great as well. She's alert and very interactive. She crawls faster than I can keep up with her at times and is standing independently for a few seconds at a time. She will be walking any day now, which will make her our first kid to walk before a year. Dr. A was thrilled with the progress she's made since April. BUT, there's a "but".

She still has increased muscle tone in her upper and lower extremities, she's hyper-reflexive (meaning her reflexes are very sensitive) and she has sensory processing issues such as wanting to be held but not held close, fear of and sensitivity to food in her mouth, etc. Even though her MRI was clear, those issues combined fit the clinical description of cerebral palsy, which is something we had discussed at her last neuro appointment in April. Based on today's evaluation, Dr. A has decided to give her the clinical diagnosis of cerebral palsy.
I suppose I shouldn't be happy about that, should I. I am though. This diagnosis doesn't really apply to or help with the GI problems, but it will allow her to qualify for more therapies and will give us something to show to our insurance company if/when issues arise over her therapy. More therapies will help her continue to make progress with her coordination & fine motor skills and that's a very good thing. Obviously I'm not happy that her symptoms are to a degree that she can be given the CP diagnosis, but since the symptoms are there whether they have a label or not, I'm grateful to have a label. Maybe happy isn't the right word, but grateful to finally have someone say, "We acknowledge that your child does have a problem and this is the name of that problem." Now if we can just figure out the vomiting thing...


Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …