A little bit of normal

Agh! Lots to do since it’s a certain someone’s first birthday on Friday, and we are getting ready to celebrate!J Quick update on appointments this week:

We met with a pediatric surgeon about putting in a gastrostomy tube for Meghan. It will take the place of the NG tube, and allow us to give her extra nutrition for as long as she needs it. The tube would go from her abdomen directly into her stomach, and there will be a little “button” or port to connect to for feedings. We had a lengthy discussion about the risks. There is increased risk of the tube worsening her reflux and causing vomiting. There’s also a small risk of her shunt becoming infected if stomach contents were to leak out into her abdomen, since the end of the shunt tubing- the end that drains the excess fluid- terminates in her abdomen. The biggest risk though, is her neck. He wants (and so do we) to find out how unstable it is before he will plan the surgery. He prefers to put the tube in with an endoscope which would involve moving her neck around a lot during the procedure. Not a safe thing to do if it is as unstable as they think. So we are (still) waiting on the expert opinions. I am trying really hard to be patient, since surgery and therapy decisions are on hinging on the verdict, but I also understand how the system works.

We also saw her neurologist this week. After her MRI, we learned that she has severe deformity of the inner ear structures on the left including the cochlea, vestibule, and semi-circular canals, which explains why she is deaf in her left ear. She also has severe deformities of the septum pellucidum, corpus callosum, and the hippocampi. The doctor said that it significantly increases her risk for seizures, on top of her risk due to the hydrocephalus. This of course makes me worry, BUT, we are thanking God that so far she is seizure free. He also thinks that perhaps the reason why she doesn’t like to use her left hand as much is not due to weakness, but a sensory issue due to the way the nerves in her neck are affected as a result of the scoliosis. He isn’t sure why she won’t bear weight on her legs, as he said her reflexes and strength are normal- NORMAL!!! Normal is not a word we hear often used about MeghanJ So another reason why therapy is so important for her. He also said that cognitively she is doing “quite well”, and has a beautiful smile. We knew thatJ It’s funny how a little over a year ago we left his office with heavy hearts, as he outlined the prognosis for our little girl. Monday, we left with a little girl who had just clapped for him. I am still smiling.

"the LORD has done this, and it is marvelous in our eyes"

Psalm 118:23