Hypotonic Cerebral Palsy. Her joints pop, creek and her bones slide in and out of place when I bathe and dress her. I am very gentle and it never seems to bother her. When she came, she had strabismus and nystagmus as well. After she had been here for a few months, I also noticed that she never made eye contact, didn't track objects and only reacted to light and dark. I was very concerned, as usually by two to three months old, all of the infants I have ever had in our care, could do these things. Praise God the strabismus has improved and nystagmus stopped when she was four month old. An MRI was scheduled and a trip to the Pediatric ophthalmologist. The MRI showed she had Hypoplasia of the Corpus Collosum. (Very thin bridge that connects the two halves of the brain) This explained a lot, as she was very behind in meeting any milestones and never used both halves of her body together to do anything. She actually just started to use her left arm a little in the last eight weeks. She was also diagnosed with Hypotonic Cerebral Palsy when we were at the neurologist.
In September, when we went to her ophthalmologist appointment, the doctor said it looked like her optic nerves were ok. At that appointment he said she might have Cortical Visual Impairment or Delayed Visual Maturation. But we went back in November and he said he could definitely see the optic nerves were smaller than they should be and diagnosed her with Optic Nerve Hypoplasia. We were not surprised at this diagnosis, as were told this condition often goes hand in hand with the Hypoplasia of the Corpus Collosum. (when she was diagnosed with that) He said that her right eye optic nerves were much smaller than her left and that the left was slightly small than they should be. So now we at least have a diagnosis for her eyes. I must say that over the last many months she has begun to use what vision she has. It still does not seem normal. But she will smile at me if I smile at her first, if I am with in five feet of her. She looks around at things, does slowly track things now and loves to look at TV, kindle and I-phone screens. She seems to see things better if they are back lighted. The ophthalmologist said we will not know the extent of her vision, till she can speak or be tested better when she is around four years old. He did decide to hold off on surgery for her strabismus because her eyes are lining up more and more as she uses what vision she has. Those muscles are getting stronger. Praise God! Remember how I said sometimes we go to one appointment to walk away with another appointment? Well, Optic Nerve Hypoplasia is one diagnosis we were praying she did not have, as it usually has a whole slew of other health issues that go hand and hand with it. These health issues that are all hormonal, are tied to the pituitary gland and can appear at any point in her life. She will need to be tested for Hypothyroidism, Hypopituitarism, Estrogen, progesterone, cortisol levels for Addison's disease, Hypoglycemia as a side effect of many of these diagnosis, antidiuretic hormone and growth hormone regularly the rest of her whole life. Whew. Any of these thing plus seizures could happen at any age her whole life and need to be watched for. She will also need to be followed by the ophthalmologist, as most people with this are blind or legally blind and are at a higher risk of cancer on the optic nerves. I am very grateful that she can see, as when she came we knew she could not. So any vision is better than none at all. It has improved so much, we are praying it will continue to do so. God is so good.
Baby "K" is really a joy. She has been a gift from God, to our life and home. We have seen God already do such a huge work in her life and body. Even though she has been a lot of work in so many ways, she is well worth it, as all children are. She is so sweet, that the work to care for her is a joy. We all love her so much!
1 Peter 1:8-9 Whom having not seen, ye love; in whom, though now ye see him not, yet believing, ye rejoice with joy unspeakable and full of glory: Receiving the end of your faith, even the salvation of your souls.