Saturday, November 06, 2010

Ahren's big appointment

The day had finally arrived. After 2 years of trying to figure out what is just not 'quite right' with Ahren, we will be seeing a pediatric neuro-muscular specialist on Wednesday. There is nothing horribly blatant about what Ahren is dealing with. No smoking gun, no giant red flag that would have helped us find answers more easily. Instead, it is a compilation of factors and a mommy's gut instinct.

Here is what we see and are concerned about. In fact, this is the list I will have to hand the Doc on Wednesday.
1) Born prematurely to a woman with no prenatal care
2) Major physical delays
rolled over at 10 months
sat up at 15 months
walked at 22 months with lower leg braces/boots
3) Sacral dimple (defect at the base of the spine often associated with neuro issues)
4) Very low muscle tone, muscles feel spongy
5) Constant falling
6) walks on curled feet or totally flat footed with limp floppy feet
7) incontinence, especially with #2, chronic severe constipation
8) kidney involvement, thought to be compensatory mechanism for underlying condition
9) low energy, easily fatigued
10) speech issues, floppy tongue
11) difficulty chewing and swallowing at first (age 3) better now with lots of work
12) one eyelid droops at times

Maybe I am making a mountain out of a molehill. I HOPE I am making a mountain out of nothing. Unfortunately, even our pediatrician has been very concerned. He sees something not right too. As much as I dread the appointment, I am also so relieved to think we will finally be uncovering the truth and THEN we can make a plan. I need a plan. No matter what, we can handle it, we just need a plan.....


Recovering Noah said...

Wendy, good luck with Ahren's appt! Let us know how it goes.

And if you are ever in the Dallas area, we HAVE to meet for lunch! We have so much to talk about!!

P.S. Wonder if Svetlana's methods would work for Ahren??? That primitive reflex stuff is fascinating!

Leslie =)

Ellie said...

praying you find answers... I for one completely understand what you are going through... Miss you, and yes, i am still reading!~

Amy said...

Don't give up Wendy. Someone will eventually figure it out. You need answers. I have a friend with a guattot that took 4 years to diagnose (her symptoms were similar to Ahren but milder) but she eventually got answers. Hang in there and go with your mommie gut.