Like a car

You know that phenomenon where you take your car to the mechanic because of a nagging sound, and viola, it is mysteriously gone as soon as the mechanic investigates? This is not the first time Miss Jean has resembled a thumping car. She is okay, does not have pneumonia, but does have something going on. She keeps dropping her oxygen levels. Going down to 78%, which is quite low. I put her on oxygen last night, and took her in today for a Dr. appt. to ensure that whatever this is, is not turning into pneumonia. While we were there, the MA put the pulse ox on her, and......she was registering at 96%.. she's cured! All I can think is REALLY?! Anyhoo... great part is, her x-ray resembles her last x-ray that was taken during her last admission with pneumonia, which would be the one that shows the best image. They were almost identical. So it is now my job to be aggressive and not allow this "thing" ( the illness, not Kira) to develop into the nasty beast that we know so well. :) I have a good feeling that it will not.

Lightbulb

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! ;)

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.

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

1-31-12

I feel terrible only blogging when she is not doing well. But really, what else is there for me to blog about? On the  23rd, Kira became sick. Just a cold. I think. Aaron had a cold and of course since I'm my babies love machine, I transfer the germs from Aaron's mouth to Kira's mouth without knowing. I can't just stop kissing my babies, and the cheek or forehead isn't enough. She started with the normal congestion sounds, needing frequent suctioning to cough and clear, and requiring some 02. After 3 days of being sick and NEEDING oxygen, I decide to take her in. My plan was to come home with her that day, but I wanted to see if she needed antibiotics or not. You would not believe what happened next. As SOON as I take her in, she is satting ( oxygenating) at almost a full 100% and sounds pretty clear. It actually pissed me off, because it was ridiculous. She IS sick, she HAS been sounding terrible and needing oxygen, but viola, she's better in front of the hospital staff? All I could keep saying, is " Are you kidding me?!" " I kept telling them, I would not have brought her in if she was like this at home. It was bizarre. Her x ray showed "viral streaking" but no pneumonia. So we went home, and of course, she is looking/acting sick again. That theory of when you take your car to a mechanic and it won't make THE sound. It totally applied to us. Anyway.. yesterday a.m. I thought she sounded better and I took her off the 02. She held her oxygen well enough, in the mid 90's. But by the afternoon, she needed the 02 again. This morning upon waking, I was happy to *hear* her breathing sounding pretty clear. Until I realized that it's like a tricky surface clear breathing... make sense? That's okay if not, I hardly ever do. But she is satting at 87-89 on room air, and it sounds like the congestion is deep, but clear in her throat and upper. I still think I can keep her home for this illness... if it does/has in fact turned into pneumonia, I will treat accordingly. I am so *over* hospital stays. I am over the chaos, the anxiety, the discomfort, the sleep deprivation, the family disruption... all of it. 

My apologies for the downer post.

I would like to ask for some Prayers for 2 beautiful little girls. I have been reading their stories lately. These two beauties have anencephaly. One's name is Katie and the other's name is Pearce. They are such precious fighters, and have exceeded their grim prognosis..much like Sissy. As you can imagine, they have many issues, and challenges. Pearce is about to celebrate her 1st birthday. Her Momma has already received over 400 "yes" RSVP's. Very exciting time! I wish them lot's more time on this earth with their loving families.

Also, while you're at it, if you don't mind... can you ask the man upstairs to bring Neo back to us if possible. Neo is our cat that went missing during that yucky storm 9 days ago. I don't even know how he got out. But since this is a new house, my guess is he can't find his way back. We all miss him and are worried. Thanks.