Looong Day

I screwed up on a million fronts today. Before 7:00 am I had already overslept, forgotten to eat breakfast, forgotten my directions, and failed to confirm where we were actually going for Seren's genetics appointment. Stellar. Like a complete idiot I actually thought that I would be able to get Seren to Duke and back in time to get Gray to a birthday party in Raleigh at 11:00. Seren's appointment as at 8 so I figured we would be done by ten and home in time to get to the party. Ha! Ha! Ha! I didn't get back to Raleigh until 2:00 in the afternoon and I didn't bring any food or drink with me. I was starving . Seren's sweet nurse wouldn't even let me buy her lunch. She had to be ready to pass out! I hadn't even made lunch arrangements at home for G. I was a complete trainwreck. Seren had enough food though so we at least took care of the wee one.

Discombobulated morning aside, I really like the geneticist we saw today. She had a really nice manner about her and seemed to really know her stuff. I liked the way she explained things to me as well. We also got to work with a genetic counselor that specializes in genetics related to eye disorders so it was nice to talk to someone who could really explain things in detail. I really appreciated the advance work and paperwork they had prepared for our visit. The geneticist at UNC and the geneticist at Duke agree as to a probable diagnosis. We have had blood sent off for testing but since we are part of a study the timing works differently and it is anyone's guess as to when we will find out any results.

I have to say that genes are fascinating. They are at the very core of what makes us people. The only thing I remember from high school science class was the square of dominant and recessive genes and how they are passed on to children. Its amazing how one tiny thing can send information to so many different parts of our body. One thing I've learned though this process with Seren is that we all have genetic mutations. Most of us have mutations that don't affect anything. However, in Seren's case the mutation was somewhere critical. It is what changed everything for us. Maybe today we got a tiny bit closer to getting some answers.

Maybe?????

Seren's new seizure medicine seems to be working!!!!! The third medicine was the charm. She is a tiny bit drowsy but her seizures are greatly improved. She seems so comfortable and content now. It is a wonderful wonderful answer to prayer! Its so great to be able to hold her and not worry that at any moment she is going to go into a painful looking episode. We are going back to Duke tomorrow to see another geneticist. I'm not sure what I'm hoping to get out of this appointment, but it would be great to walk in and have the doctor say that she treated a baby with the exact same symptoms and it was "x" so that we can have an answer and be done with the uncertainty as it relates to a diagnosis.

Seren has started school (she's an overachiever clearly) where her reaction to stimulus has been quite encouraging. She's also been making efforts toward taking a paci. This would be huge. I'm so very sorry but in addition to being a great stride in her development, I think paci's are just adorable. She also got her first pair of fancy pants. I searched everywhere to find a pair small enough but I finally uncovered some. They are so stinking cute! Hopefully a picture will be forthcoming. I must admit that girl clothes are fun!

Photos with Mimi

Two weeks ago Mimi was here which meant we got some pictures with Poppy's camera. The picture above is Mimi with her grandchildren in the family room at Seren's facility. It was donated by a Wake County organization so that families can spend time together in a true family setting. Its stocked with some really neat toys that G enjoys getting into. The room always starts out perfectly neat and gets torn to shreds in minutes (hence the toys all over the place and the upended chair). Grayson figured out how to put movies in the VCR which sometimes keeps him still for second or two but he mostly runs around like a banshee. I'm not sure how Seren feels about the wildness that ensues.

This particular day Seren managed to stay peaceful during all the chaos.

But then we wore her out.... I thought this little yawn was just precious.

Three Month Update

I'm having a hard time staying current with Seren's updates! She was born three months ago today which boggles my mind. She had a doctor's appointment last week that confirmed she had finally gotten rid of her ear infection. Her rash is totally gone as well. The jury is still out on the new seizure medicines. Yesterday, in a three hour span, she only had two episodes, and one was very mild, so it seems to me that she is improving a bit-however, sometimes I think that and the next day they are worse again, so, I'm withholding any sort of determination.

As time passes its definitely hard to see other tiny babies who are progressing when Seren is still just as she was as a newborn. Even though some of her prognosis breaks my heart every single day, she is the sweetest most lovable little baby just the way she is. Seren is a "floppy" baby so when she lays up against you she does it in the sweetest, most dependant, and seemingly trusting, way that she can't help but melt the hearts of everyone who gets to hold her. Its like a little gift she gives us.

Happy three month birthday little S-You truly are special!
(xoxo, Mom)

July Already?

Its a Monday which means Seren is another week older. She's thirteen weeks today if my math is correct (and frankly, it may not be-Lance is the sole numbers oriented person in the family). Time is flying and baby girl is definitely getting bigger. She's not on any charts but she is still outgrowing clothes and looking bigger. Her hair is starting to curl a little, which, really, we all knew would happen sooner or later. You just can't entirely escape the curly hair! Several of her nurses agree with me that she smiles in response to certain stimulation which is just thrilling for all of us!!

Medically, Seren's ears seem to have cleared up but her seizures remain problematic. We are working with several doctors to adjust her medicine to try to get the seizures under control. The good news is that other than the seizures Seren seems to be doing rather well. One of her eyes seems to be slightly less opaque than it was at birth. We were told that sometimes this can happen. Her vision would remain restricted in that eye but we will take any improvement we can get. We do think that she can hear some sounds and perhaps see shades of light. I've been taking my ipod and playing it with the ear buds about four inches away from her ears. I think she maybe liked the "Rainbow Connection" but she was definitely not a Sinatra fan. Oh well-points for trying I guess. Tomorrow maybe I'll try some Coldplay or Elvis or something:)