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.

Wednesday, March 7, 2012

Appointment Updates

The last couple of days Norah and I have had lots of Mommy Daughter time while we hung out going to doctors appointments.

Norah sitting in the doctor's chair waiting at her appointment.

The first appointment was yesterday, which was also our last appointment in the neonatal followup clinic. Norah has been going every 6 months since she was discharged from the NICU. I have enjoyed these visits because they let me know how Norah is doing developmentally but more importantly they always give me great resources for followup or new ideas to pursue. Alas they only follow you until you are 3 years old, so no more visits for Norah because in 5 months time we will be celebrating Norah's 3rd birthday.
We always meet with a nurse case manager, physical, occupational and speeck therapist, and the developmental neonatalogist. The PT that usually meets with us yesterday was unable to make it to the appointment (bummer I wanted Norah to show off her new walking skills), but the OT and SLP were there and worked with Norah. It was no surprise that Norah doing great (at or above adjusted age) for her fine motor skill, cognitively and with her expressive language. The surprising results was that Norah's receptive language (her ability to understand) is beginning to fall behind. They gave me lots of great ideas on how to work on developing this with Norah, as well as the name of a psychologist who specializes in improving learning abilities in children with brain injuries. They cautioned me to be aware that when Norah begins school to watch her closely because her expressive language is so good, it may fool people into believing she understands a concept when in fact she does not.
We also talked about Norah's low weight, she weighed in a 22lbs 8oz, below the 3rd percentile. Norah has been struggling with weight gain but has also developed some problems with constipation. If you are full of poop, your desire to eat isn't there. A new plan to get the pooping issue under control was made, and if we don't see a change in 2 months, a recommendation of a doctor to followup with was given to us. We will continue to work on getting more calories in and putting on weight. So I need to put peanut butter M&Ms on the shopping list again - Norah's favorite.

Today Norah and I headed off again to have a MRI done then followup with her neurosurgeon. After we waited for 2 hours in the exam room (yep, I was getting inpatient and frustrated). We spoke with Norah's neurosurgeon. Norah continues to have slit ventricles, that put her at a higher risk of shunt malfunction and a Chiari malformation. We discussed where we should go from here. At this point, they believe Norah chiari is an independent problem, at one point there was concern that because her ventricles were slit like there may be pressure that was not being scene that was causing the chiari. Again they don't think this is the case anymore. Norah continues to have problems with ataxia, despite making great progress in balance and walking in the last six months. Is this just Norah or is it the chiari? Norah has also developed a mild tremor when reaching out for things or most noticeable when she wakes up from sleeping. Along with Norah's poor weight gain and feeding issues, there is concern that this is all coming from her chiari. But surgery to correct a chiari malformation is BIG, nothing that you say let's give it a try and see where things go from here. We decided the next thing we could do to see what kind affects the chiari is having on Norah is to do a sleep study. He said that if Norah has sleep apnea it may be worthwhile to pursue surgery sooner rather than waiting to see if symptoms of her chiari get worse.

That's what I have for now, I'm still processing the information. I am one of those people who needs a couple days to process information, put it together in my mind, then the questions come and better understanding. I feel truly blessed with how Norah is developing. I do have concerns and fears about Norah's receptive language. I also want to make sure we are doing what is good for Norah medically. It is hard to know when to push for more answers and when to accept things as they are, thank goodness I have my faith and know the power of prayer.

1 comment:

Anonymous said...

Once again I am touched by your Norah update. U r amazing, Jen for being such a wonderful, patient and insightful parent. Jason is also so dedicated to his family. Norah is always on my mind and prayers. She is amazing! LOVE is such a gift. :-) mimi