About Me

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Hi I’m Jen- I'm one lucky lady to be married to the most wonderful man, Jason. I am a mother to three beautiful children, Grant, Norah, who was born with hydrocephalus, and Mason. I love spending my time with my family. I also like to challenge myself with new things. I'm on a constant quest to become more organized, it may never happen but it's a dream. I currently work part-time as a RN in an emergency department. I love this journey of life that I am on with God by my side, knowing that all things are possible when you Believe.

Friday, September 9, 2011

Appointment Marathon

Norah picking her ears with her toes, she's a silly girl!

Well we made it through Norah's marathon of appointments. Norah has been doing great the last couple of weeks so to go to all these appointments led to some frustrations. I wish these appointments actually happened when she was symptomatic but with specialist it takes time to get appointments and gives problems time to get worse or better. I'm glad Norah decided to go with the better. Here's a quick update on our little lady.

Tuesday - Developmental Appointment:

Norah is now excelling in all areas except for gross motor skills, impressing everyone at the appointment. Norah's language skills are most impressive, she's currently scored at 33 months for her expressive language and 26 months for her receptive language. Norah's cognitive and fine motor skills were skill between 24-26 months, just above her adjusted age of 24 months. That leaves her gross motor skill...set at 14 months. I'm OK with that number because I see Norah take steps in the right direction and she has a lot stacked against her with regards to her gross motor skills. Besides missing her corpus callosum and septum pellucidum, she also has a Chiari malformation, all that effect balance and coordination. Her team made great recommendations for ideas to help improving the areas she is excelling in but when it came to PT and helping her gross motor skills they said to take a break (really? take a break on the area that she's most behind in). This made me upset and frustrated, it was like they were giving up on Norah making improvements.This just doesn't make any sense to me. So we are going with my recommendation to continue PT and get Norah walking.

Wednesday - Orthodics Appointment

Since getting her SureSteps, Norah's feet have grown a full size (up until she got her braces she was wearing a size 3 what a 3-6 month old would wear) and made some changes. Her braces were starting to rub the insides of her feet and she was taking them off every chance she had, so adjusted they were. It was a quick appointment. The orthotist thinks she need a new pair by December so we made our next appointment for then, but we may be back before then.

Thursday - Neurology

Back in May, when Norah's episodes of vomiting and being off were peaking, neurosurgery referred us to see our neurologist. Well, our neurologist had left the hospital, we went unassigned and were told we would have to start again as a new patient. OK appointments were made and cancelled several times, so Norah's pediatrician referred us to a pediatric neurologist outside Children's hospital. I went with Norah. His recommendation was to do an at home EEG for 48 to 72 hours, just to make sure anythings abnormal was being missed, or not presenting in a typical manner. He thinks that Norah may be having migraines. He said because Norah is so young and can't describe what she is feeling on her off days that the only way to treat her is to start giving her medication to see if there is an improvement. I'm not sure if I'm on board with that yet, but I'm willing to do the EEG and start there. As for the medications, I'm not a fan of giving medications just to see or treat a symptom, so there will be a big discussion at our next appointment.

Friday - ENT

So today we started on the road to see why Norah isn't gaining weight and having difficulty chewing and swallowing foods. I really liked the ENT we saw (he graduated from Duke so it was a sign) and he was engaged with Norah. Norah will be having a swallow study in the next week or so and then we will followup to see if she needs an endoscopy as well. He did say he didn't think Norah's chiari malformation was necessarily causing the feeding issues.

So we survived a very intensive Norah week, because on top of that she also had a stellar day at therapy on Thursday. She did a great job with her speech therapist working on chewing and moving food around in her mouth. Then in PT she was taking some great steps independently (I'm working on get a good video of this, unfortunately she doesn't do this as well for Mom and Dad).

Also all her doctors remarked that looking at Norah on paper versus seeing and interacting with her you would guess her to be the same person. The neurologist even said if he were to guess her age by listening to her talk he would think she was a 3 year old. Another observation they made is that she amazing adjusted to letting doctors examine her, no tears were had, but a very watchful and questioning look was given, letting them know not to cross any boundaries. They all enjoyed our delightful little girl.

***Also keep Norah's hydro friend Shelby in your prayers, she had a shunt revision this week. And Tiffany, I don't know why I can't leave comments on your blog and your email address doesn't work for me, but we were thinking of you this week.

1 comment:

Tiffany said...

Glad Norah is doing so well developmentally. I know that is frustrating about the on-again, off-again symptoms. Good for you for sticking with the PT mama! Shelby is doing amazingly well 3 days post-surgery. Thanks for the shout-out and prayers!