Thursday, May 11

I know some people have wondered how Heather can have so much going on with her.
I wanted to explain how these things are all tied together.

Heather has a cystic hygroma on the neck(fluid filled tumor growth)
- this may have caused her torticollis(twisted neck-left muscle is too short) and may have caused her tracheomalacia(floppy airway)
- her plagiocephaly(flattened skull) was caused by the torticollis
- her hypotonia(low muscle tone throughtout her entire body~legs, arms, mouth, jaw) was caused by the Torticollis
-she has Sensory Integration which some believe can be caused by hypotonia in some kids
-Speech delays are extremely common in sensory kids, plagio babies and kids with low mucle tone in the face. She has all of these.
-she has trouble eating because of her sensory issues with most foods, combined with her low muscle tone in her mouth making it hard to chew and swallow right.

Right now the Drs feel that her cystic hygroma was caused by a genetic defect. We arent doing further genetic testing right now, because we(the Drs and us) decided that the tests were too much on Heather and we will just watch her as she grows and treat things as they appear.

Our hope is that because we were so quick and "Aggressive(for lack of better word) in treating her, that we can get her on track so that by the time she hits school age, you wouldnt know she ever had any challenges. Some of her problems will always be here and she will always need therapy to help keep them under control, but because we started so young with her, they wont cause her a lot of problems.

I hope that makes sense. There is SO much more to each thing I listed, but I wanted to keep it basic, just to show that these are not things the Drs and therapists are making up. They are all things that Heather clearly has and they are all related somehow.

2 comments:

Anonymous said...

You don't have to explain, defend or justify Heather's health to anyone girl!

Anonymous said...

I am so sorry that you feel you have to defend your childrens health to people. I have known Heather since day one..(okay, day 2, thanks again Bob) and I have seen what you go through and she goes through. Heather has made amazing progress, but she definately has some issues. I don't say that to be mean in any way, you know I love your girls like my own. I know what sensory and speech problems look like from my own experience, and it is so important that you treat it early to prevent many more problems later in her life. I think you are doing wonderful with your girls. Keep doing what you are doing, and don't let people make you feel bad. Some people just can't understand until they've lived it.
Lots of hugs for you!!
love,
Aimee