Sunday, September 30, 2012


You know that moment when a light bulb lights up in your head? This recently happened to both Jim and I. So we moved, and all of the Perryman clan are thrilled with our new home. There is only one drawback, one. It's that Kira Jean and I are sharing a room. While it works structurally  it was not working during the hours when one should be in R.E.M. All night long, Kira would snort, breath heavy and just out right be loud and unable to tune out. I would change her position, but nothing seemed to make her comfortable and quiet. I was getting NO sleep. I have been slow drip feeding her all night long for at least a year. She eats from basically 8 p.m. until 8 a.m. Well, almost at the same moment Jim and I realized, "Hey, she's quiet and comfy during the day, why is she aggravated at night? The feeding!" So I am putting her back on bolus feeds during the day, and nothing at night. VIOLA! I slept last night!!! Yay, so this rooming situation will in fact work out. She was 2 seconds away from sleeping outside! Guess I will keep her! ;)

Monday, September 10, 2012

We are moving in a couple of weeks, and we are losing a bedroom. I am considering putting the "2 babies" together. Being Kira and Aaron. I am not sure how this would work though. I know Aaron would be happy to have Sissy sleeping in the same room. BUT, then there is the decorating aspect. I want Kira's area to be her girly girl, and Aaron is obviously a boy. Do I split the room down the middle, one half is boyish, the other, beauty Queenish? I know that there will be a separate play room area, so Aaron does not need much space for toys in his room. Just a thought here, Otherwise, Queeny will be with me, and I obviously do not mind a room decked out for a Queen! ;) Opinions are welcomed. P.s. the playroom area is not an option for a room, sadly.

Thursday, September 6, 2012

It seems that our lady, Miss Kira Girl has had some kind of positive development.  For a short while now, she has been rolling her eyes open a bit more and throwing her little smiles around without it being associated with a seizure. Kira really only rolls her eyes open or gives us those sweet crazy smiles when she is seizing. It SUCKS. While people would say, " Aww, she's smiling!" I'm like, "Nope, she's seizing." Howeva.. yes, meant to say "eva", I think it adds to the joyess feeling I have about it.. she has been doing it recently for reals! Initially I thought there was something going on with her, something brewing or an infection somewhere, etc. The last time she opened her eyes, I got beyond excited, but turned out it was just a "stress reaction" caused by a 107 degree fever. So naturally, if she starts opening her eyes without seizing, I want to find the source. However, when I took her to her latest Neuro appt., and told her Dr. about this, he was confident that Kira has had a development! He said that she is growing and her brain is growing and growing myelin, even though she has lost much myelin, it still continues to be made. She still most definitely has microcephaly (small head, because of small brain), but it IS growing. So with the growth, baby girl has made a positive change. This is new for us. I was surprised when he said she has made a development.. I said "She's never had one of those before!" Although, I suppose she has. She use to lay there silent and still while being poked and prodded by needles. She must have been about 3 when she started reacting to pain. It was so bittersweet, but really, it was totally awesome! She started arching her back, kicking her legs like a bicycle, and grunting if a needle was really hurting her. I am sure I blogged about it, but one time she thrashed herself all the way from the head of the bed, to the foot of the bed because she definitely could feel the needles. While I was crying because it was a HARD day, and I knew she was in pain, I was cheering for her as well, saying "Go baby go, you show them it hurts!" She also has not been sick since her last admission, back in March. *Knock on wood*. I better not have just jinxed myself.. 6 months is a pretty good stretch for Sis to stay out of the hospital, feels great! So right now, Kira is doing great! She is a happy girl, giving us smiles and lots of love. xo