As usual, things have been nuts around here.
We got the results from Lennon’s DNA back – she is 100% “typical” – which means that she has no genetic abnormality what so ever. I am actually shocked. I thought with multiple birth defects and low amniotic fluid (etc) that it was almost a guarantee. Alex was so happy when the news came in that he cried. I have mixed fillings. I am relieved but also still stumped. Something is still going on with my child and I am still no closer to answers.
She missed her MRI due to a major traffic jam on the freeway and that needs to be rescheduled. She missed her last speech therapy appointment for the same reason. Lovely.
She did see the cranio-facial plastic surgeon and the neurologist. The neurologist thinks she has CP (which is what is causing the shaking, in his opinion) but wants us to bring her back after her birthday to be diagnosed definitively.
The CFPS said that she had some gaps in her skull (hence, huge gap in the corner of her eye) from the surgery that her body was trying to fill in with new bone. Apparently this is rare and is also quite painful. This is our one and only theory as to Lennon’s strange behavior. I am afraid to hope that it is something this simple.
I’m also afraid to even post that she seems to have snapped out of it.
She still isn’t eating great most of the time (sometimes she eats like a champ) but at least she is eating like a typical toddler now. By that I mean she will eat fruit, french fries, some veggies, yougrt…you know…what SHE wants to eat.
The CFPS also said that he is hopeful that she will not need any more surgeries for the craniosynostosis. I am hopeful but going to keep my guard up until she is a teenager and stops growing as rapidly, because you just never know. Can’t ever trust cranio.
So the plan now is to get the MRI to rule out Chairi and then hope like hell that she doesn’t revert to her zombie-like state again.
I stumbled across a few blogs by parents of children who have had heart transplants today. Most of the time I try not to think about the fact that Lennon needs heart surgery too. It’s just more than I can deal with right now and, hopefully, something I won’t have to face for awhile.
Alex has been struggling with UTIs lately – which is not good news when you have a brand spanking new kidney transplant. Hopefully this next round of antibiotics will knock it out.
Other than the medical drama (what else is new?!) things are going well around here.
The girls birthday is coming up in a few weeks. I can’t believe they are going to be TWO! And they are getting ready to potty learn. Evelynn is more interested than Lennon is but I bought them some Yo Gabba Gabba underwear and I’m going out today to get the potty and some carpet soap. We’ll see how it goes.
Evy is also talking up a storm…we are up to five word sentences now. Len is right behind her. She’s a bit quieter, but talks well when she decides she wants to.
He is starting to cruise. He is in size 24 month clothes. He has two bottom teeth. He is going to be a year old in less than nine weeks. *sob*
I also think that HE is thinking about weaning. I never thought he would want to so soon, he has loved nursing, but he has less and less interest these days. I think he’s just too busy to stop and sit down to do it. He has also started occasionally sleeping through his 5/6am nursing session. I’ll keep nursing him as long as he keeps showing interest, but I’m saddened to say that it may be the beginning of the end.
In between running around like crazy people to different Dr’s appointments we also had the privilege of meeting up with some bloggy friends earlier this week. I haven’t asked her yet if it’s okay so I won’t say who it was – but I *will* say that they were even nicer than I could have imagined and I was so, SO thrilled to meet them. How awesome, after reading someone’s blog for YEARS to actually get to meet up? Her’s was one of the very first blogs I ever started following.