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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, August 5, 2011

Is it Monday yet?

Well the last couple of months Norah has kept us on our toes. Jason and I have just felt more anxious and worried about her overall health.  We haven't had any episodes of vomiting, but we have seen changes in her activites and behavior.

Norah continues to be underweight. She currently is weighing in at 20 pounds. In May she weighed 18.5 pounds, and we started giving Norah Pediasure twice a day. Our goal was to have Norah gain weight, hopefully helping her grow and increase endurance. Norah tires out quickly if we do any activity that requires moving around, or using her walker. On therapy days, she is wore out for the rest of the day after a busy morning of working with her speech and physical therapist.

This last month Norah seems to have hit a plateau or even slightly regressing on progress made previously on chewing foods. She has begun to grimace occasionally when swallowing. She has also developed a crackling cough, it's not there all the time but when it does come it's usually after eating. She sometimes has a soft scratchy voice with this. We are wondering if she is beginning to aspirate.

While Norah has made good progress on her cruising and walking skills she cannot stand or walk independently. Occasionally she will tease us with a good 5 second stand or standing up with a couple steps to follow. She loves to walk, holding on to our hand and has since last spring. This last month her coordination with the ability to do this has worsened. Not significantly but enough for us to notice and her physical therapist.
Norah had an eye appointment next week. Since our appointment to the neurologist keeps getting cancelled we at least can find out if some of her usually behaviour is related to visual problems. She has mild strabismus, where her eye don't move together. We are also wondering if she is color blind.

Norah continues to "off" days where she just isn't her happy, smiling, talk your ear off self. They make me worry about this precious girl that is my daughter. My heart is heavy with worry, wondering if I'm missing something or am I stressing over nothing. I ponder many questions in my head; Could her Chiari be worsening? Could her tonsils and adenoids be to big causing difficulty swallowing? Is she just trying to be a normal 2 year old? Could her hernia just be bugging her and making walking more difficult? So many questions I wish I could turn my mind off sometimes.

Monday is Norah's 2 year check up with our pediatrician, the one who helps to reassure me with my concerns or is instrumental in getting us the help we need when things change. I had multiple appointments schedule for all of Norah doctor's this month. However many of her doctors have cancelled appointments scheduling them for September. I'm hoping that either our pediatrician will calm my fears and worries, or help to contact her doctors to open up an appointment for us. I have written a letter to the hospital sharing my frustration but am also wondering do we need to seek out care for Norah somewhere else. I pray for guidance on this road. Monday, will it come soon, can I plan enough activities for our family to distract me in the mean time? Will Monday come and leave me more questions and worry?

1 comment:

Diane said...

I sometimes wish I could tun my mind off too. I pray that you find some answers and hopefully your pediatrician can get you in sooner to those specialists.