Hypotonia

 

It's hard to admit you have a problem; I think in a way it's harder to admit your child has one.  From the moment they are born they melt your heart, they are perfect. At least they are meant to be right?! Well my baby is different; in a way she is perfect yes, her bubbly smiles and determined attitude can not be rivalled. :) From early on I have known that something wasn't right, yet denial is easier to accept than the truth.

 

My poor baby has been poked and prodded tested and re-tested since she was 1 month old she has had x-rays, EEG's and ultrasounds. Still we are short on answers all tests coming up negative (all but one which the Dr's tossed aside because they said it was irrelevant AHHHHHHHHH. her Metopic suture was closed at 1month when they tested x-rayed it). We have seen a family Dr, a paediatrician, 3 Nero-surgeons, 2 Neurologists (3 if you count the student), Geneticist, optomaligist, ear nose and throat specialist, and someone else that i can't think of at the moment it has been constant tests and Dr's apointments to say the least and we live 45 min out of the city where all these tests are done.
What we do have is just scratching the surface Strabismus (cross eyed) needing to be patched to help the weak eye and hopefully we won't need surgery.

 

 Ear tubes putting an end to 3 1/2 months of constant ear infections and antibiotics and then there is the one thing that makes more sense Hypotonia. (http://www.nlm.nih.gov/medlineplus/ency/article/003298.htm) (For anyone who wants to know more) well at least i feel it's a step forward. Why? so far the Dr's don't know what is causing it. She started to hold her head up at about six months and at that still needed support. She is now nearly ten months she can hold her head up although at times she will go floppy randomly. She is also having bowel problems it seems like on a constant basis. She also chokes on thin liquids and has trouble coughing up phlem more often then not turning everything from bright red to blue bursting a few blood vessels in her cheeks and under her eyes as she tries to get a breath. The first time that happened it scarred the crap out of me, now it happens enough that I hold my breath waiting for her to take one then go back to what we were doing. We have been seeing a physiotherapist but honestly I am already doing everything they are with her. I do count my blessings though; even though she is not hitting her milestones when she should she is rolling around trying to play with my other children. It's hard though knowing that she should be doing more or having babies younger than her sitting up and crawling and doing other things in a way pulls at my heart not knowing what lays ahead for my beautiful little angel.
We have more tests coming up in January a MRI/MRA and Spinal tap(not sure if i want the spinal tap done) are the big ones. It seems all the Dr's are waiting on the MRI/A so we are stagnating as we wait. I hate not knowing what is wrong or why. Honestly I think the Metopic Suture being closed early ha caused all her problems (including seizures she experienced till her head shape changed about 4 1/2 months, it changed and everything in proved the seizures stopped and like a light switch she started improving smiling all the way to moving one of her eyes since then she has been progressing). Yet the Dr's toss the theory aside because she does not have a ridge of bone down the center of her forehead so frustrating. Sigh well thus far this is the bones of everything and we are just at the beginning of what's ahead.