Update..........(FINALLY)

So much has happened with the girls over the past two weeks. We've had so many appointments, it's really been busy around here! The first news is that we heard back from our pediatrician about Katelyn's possible seizures. He said that he was pretty sure that they were seizures, so he sent us to OHSU for an appt. with a nuerologist. I took her last wednesday (along with our tape of the episodes), and they checked her out, and did an EEG. She looked so funny with all those wires sticking out of her head! She didn't like it at first and kept trying to get it all off, but after they wrapped her head with some bandages she was o.k. During her EEG she only did the weird siezure thing 2 times! During her EEG the Dr. reviewed the tape, and had to consult with 2 other nuerologists. They at first thought that the activity was a seizure disorder, but the EEG came back normal, so then they all started scratching their heads again. And can I just say when you have 3 nuerologists standing over your baby scratching their heads, it's SOOOOO NOT COMFORTING!!! They pretty much said we still aren't exactly sure what is going on with her, and they gave me a couple of possible diagnosis.

1: Is they think it could be an aura that one might experience before a migraine. Most people that experience an aura get a change in vision. Like distorted vision, seeing colored rings, or bright flashes. So I'm not convinced this is what it is, as she has upwards of 100 of these episodes a day!, and it's not vision related.

2: It could be a nuerological movement disorder called dystonia. It is the 3rd most common movement disorder after parkinsons disease. It can affect any muscles in the body, and causes them to stiffen up and spasam. They've not seen it in a baby as young as Katelyn is, so there is just little information out there, on babies who have this disorder.

They gave us a script for Topimax which is an anti-seizure/anti-migraine med. which she has to take daily. She has been on it for 4 days now, and I can definitely see a difference in her episodes. She's still having them, BUT they are occuring less frequently, and don't seem as extreme. So does that mean she was indeed having migraines, or that she is having seizures??? I DON'T KNOW!!! I'm still not entirely convinced that the activity is not seizures. During my own research I have read that absence seizures can be very tricky to diagnose, and may take several EEG's to show up. All I do know is that I'm glad they seem to be coming under control. We will be following up with Dr. F, the girls Ped. and depending on what he says, we may get another EEG. We also found out, that Katelyn had 2 hematomas (sp?) on her brain during her last head ultrasound in the NICU. I was furious that we were not told this information. They only told us that her ventricles were enlarged, and they needed to do a follow up after discharge. We had the follow up within a month of her coming home, and it looked to be normalizing again. So that's what's going on with Katelyn's episodes. Still no concrete diagnosis, and still lots of frustration for us.

The other big new concerns Madelyn. She has just started receiving her EI therpaies, which has consisted of OT & PT. They come out to our home for each visit, which is so cool! I can lay Aaron down for his nap, and Katy too, then the focus is on Mady where it should be. The PT didn't do much with her during their first visit, because the OT took up most of the time regarding her feeding issues. She spent 2 hours with Madelyn, and gave me lots of tips on how to get her feeding better. We've tried most of them, and so far no luck on that end, but it's still early so I'm very hopeful that she'll come around. We also have set up weekly feeding clinic appointments with an OT & ST. Those will be every thursday starting today. I'm excited, and apprehensive about the therapies. I'm so hopeful that she'll start making progress, but very fearful of the possibility that she won't and will have to have a G-tube. So Mady is pretty much in therapy mode right now. It's been crazy with so many therapies, and Dr. appts around here lately. Not to mention that RSV season is coming. So scary!!! They'll be given the monthly doses of synagis (sp?) incurring more trips to the ped. And we will be in lock down mode again this winter. Visitors only if no cold symptoms, and MUST WASH THEIR HANDS. Now that Jacob's in school full time it's scary how many germs he could be bringing home. Oh the joys of preemie parenting!

Now time for the fun stuff! The girls are learning so much. They continue to amaze us everyday!

Lets start with Mady: She is coming along with her motor skills. She's finally learned to pivot while playing on her tummy. She can go in a full circle! Of course the little stinker will only go to her right side (again showing preference to her right & weakness on her left). But she's really taking off, with her rolling and pivoting skills! She is cooing a bit more, and making razzing sounds. Very cute little raspy noises. She practices making her voice high & low pitched. So the OT said her skills are coming along the 4 months mark in language now. She still can not laugh, but smiles so big you know she wants to. She has started sleeping through the night on most nights, because she doesn't like to eat. I would wake her up after Katelyn but she just started refusing more and more, so now I just let her sleep. She is very playful and smiley all the time. She loves to shake her head back & forth (like no no). I think she likes the headrush she gets from it! And that about covers it for Miss Mady May!

Katelyn: Katy continues to roll & pivot very well. She can get pretty much get anywhere she wants to go by log rolling and pivoting. She's sitting well with minimal support, and with no support for about a minute or so then she flops over. She's getting very strong, and loves to jump while standing on our laps. She is eating bottles very well, but hasn't come around to solids yet, which by the way is very difficult since both girls have to be spoon fed their meds. She has added a lot more sounds to her vocabulary and can say dadada, & gagaga. She's become a good babbler. She still doesn't laugh consistantly, but has a handfull of times at Jacob. (Maybe we just aren't that funny to her). She does not sleep through the night and wakes up once to twice per night for a bottle. Her favorite thing to do is play on the floor where she has more freedom to move. She doesn't really like her snuggley chair as much anymore. She is a very good baby, and it's been so fun with her lately watching her play and interact.