What do you think?

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

Moderators: Tmagic650, Lori-ann

Posts: 2
Joined: Sun Mar 04, 2012 2:00 pm

What do you think?

Postby bellasmom » Sun Mar 04, 2012 3:20 pm

Hi there,

I am new here and looking to see what your opinions may be of our little girl :-)

Bella will be 8 months old tomorrow and has had whirlwind start to life. She was born at 34 weeks gestation and stayed in the NICU for a month. She was diagnosed with a VERY rare craniofacial abnormality, Pyriform Aperture Stenosis(she looks normal on the outside but has bone overgrowth in the midline of the face), Central Sleep Apnea, had feeding difficulties and trouble gaining weight. She came home on a sleep apnea monitor and has also had surgery in December to try to correct the stenosis and help with the feeding issues as alot of those were steming from the stenosis. She has since then been able to breath MUCH better, the sleep apnea has drastically diminished and she also feed much better.

In december, we were referred to PT by our pedi, as Bella was behind and not hitting her milestones. We really thought that this was because of the PAS and that she would catch up since she was now able to breath (and would actually exert energy now) and eat correctly. She used to lay completely still and sleep constantly trying to help herself breathe.

Her PT has said that she has spascicity and hypertonia in her legs and arms(worse in the legs and trunk). She can roll over to the left and just the past week is now rolling to the right as well. She can not sit yet and acutally really dislikes trying too.

We are on a waiting list to see a Nuerologist in the Texas Medical Center which is where most of her Dr's are and where her surgery was performed. We do not know what to think of all of this, as our real concern when she was born was the breathing and apnea's and her slow growth, and a million other things...

She is still small, weighing 15 lbs at 8 months and is now been approved to start eating solids (she has had two sleep studies and also two barium swallow tests done.) The only testing she has had done on her brain would be for hydrocephalus because of the central sleep apnea. They did an ultrasound on the brain which showed no water.

She does have alot of signs of CP, such as clenching of the fists, throwing herself backwards, stifness in the legs (and arms), she is rigid when she cries and seems to make movements uncontrolled.

I would love anyone's input on some or all the issues with Bella. I know this is ALOT of information and can be quite confusing, if you have any questions please let me know :-)

Thanks in advance!
Mom to Bella (7.5.2011)