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.

cuteness...update soon!

Katelyn just hangin out. She is getting so big! 14 lbs 8 oz at their last weigh in. Getting smiles from her on camera is a rare occassion . I don't thin she likes the camera, she'll automatically stop smiling or whatever cute thing she's doing, and just stare at me like I'm some sort of freak.
I really love this one of Katy. She is getting so good at picking things up off the floor. I'm contantly checking to make sure all the little stuff is picked up, because she'll find it, and put it in her mouth.
Madelyn and HER kitten. We have adopted 3 cats, a momma and her 2 kittens that Ian found at his work. This little kitten adopted Mady. He loves her, and always snuggles up right by her. And if she's sleeping in her room, he often lays by the door waiting for her. It's so cute! Maybe they both hit it off so well because they're both the runts of the litter.
This is my new favorite picture of Madelyn. It really shows off her personality well. Too bad it's a little out of focus.

I'll post a more detailed update later tonight when I have more time. I have so much to report about the last 2 weeks.

Madelyn's EI evaluation & other news

Today we had Madelyn evaluated by a team from Early Intervention (EI), which is through the school district. It's essentially special education for children under 5 years old. They believe that treating issues EARLY in developmentally delayed children, or kids with other handicaps is better than the "wait & see" mantality that was used in years past. Since this is a service through the school district it is free to any child who qualifies. In order to qualify for services, the child has to show delays in 2 or more areas. They did a test similar to the Baley Scale Test that was used at OHSU. This test scored Madelyn a little better than the Baley Scale, she scored a bit better on this test for her motor skills, but still low on the congnitive skills. Her scores showed a delay in every area, so she qualifies for therapies. The issues that the Occupational Therapist (OT) & the Physical Therpaist (PT) saw are some weakness on her left side with a preference for using her right hand, poor trunk control, & weakness in both legs. All these things we already knew, and are glad to have someone validate the concerns we've been seeing, and we're really excited that something pro-active will be done about her issues. Madelyn will be getting OT & PT a few times per month, and then Speach will be thrown in when needed. The good news is that she's starting to make some progress on the things that she was WAY behind on back in early August. She's started making a bit more noise, and she's even started pivoting a bit while playing on her tummy. She still has quite a bit of work ahead of her to be able to "catch up", but we are very optomistic that she will with therapies.

In other news, both babies have their first head colds. It started last week with Aaron having some congestion with a bit of a cough. On Sunday the girls started with the runny noses, and today they had a bit of a cough. So far the worst part has been when they wake up with very crusty noses, and that Katelyn is fussy. Madelyn seems to be her same ole' happy girl self. Katelyn was extremely grouchy tonight, and screamed for about an hour non stop. She wanted to be held, but she was really stiff, and couldn't get comfy. She screamed in my arms for an hour before I finally just had to let her cry it out in her bed for the first time. It only took her 8 minutes to fall asleep, and all 8 of those minutes she was screaming while I watched the clock. It killed me not to go in & pick her up, but it worked. We'll see how the night goes. Hopefully she'll be able to sleep well.

The girls are now also sleeping in seperate cribs. Their first night was last night and they did very well. They love having a whole bed to themselves, and actually slept a lot better. Now I'm thinking, why didn't we do this sooner?!

Jacob has lost his 2nd baby tooth! It happened last night during dinner. Unfortunately the tooth fairy forgot to visit our house last night!!! I know, I know, worse mother of the year award goes to me!!! I had to think of something fast @ 6:00 a.m. when he came in to wake me up screaming that the tooth fairy forgot him! I don't think I've ever felt more awful! I told him that since he lost his tooth so late in the evening, the tooth fairy already had her list of kids to visit made out for the night, and that there's a 24 hr waiting list for kids to be visited by the tooth fairy. Thankfully it worked, and the tooth fairy WILL be visiting for sure tonight! With an extra dollar! Maybe she should make it an extra couple bucks for the completely disappointed look that Jacob's mommy had to see thismorning.

We still haven't heard from our Ped. about Katelyn's weirdness. I will be calling and "stalking" him tomorrow morning for news.

And that's a wrap! For now anyway.

Not so flattering pictures

This is Katelyn having one of her "episodes". We call them episodes because we aren't quite sure what they are yet, if anything. We're a bit concerned that it's a mild seizure that is happening to her several times a day. When I say several she probably does this close to 100 times a day. Sometimes less, sometimes more. It's hard to see exactly what's going on in the photographs, but basically, she turns her head to the side, and gets a blank look on her face & her eye and check seem to stiffen up, and spasam. This only occurs on the left side of her face. She is definitely not intending on doing it, and I can not even duplicate it to show someone what it looks like. She doesn't seem to notice when she does it, and it only lasts 5-15 seconds. There are times where she'll do it over & over again, back to back to back. Whatever is occuring looks very unnatural, and I can only describe it as odd. We have video taped several of these episodes, and given the tape to her pediatrician. We haven't heard from him yet, as to wether we should be alarmed and do some tests, or if it's just some weird facial twitch. These pictures posted completely out of sequence but the top & bottom picutres are during the "episode", and the middle ones are as she is "normalizing" again. I am only posting these pictures to see if anyone can offer any insight on what could be going on. I've never seen a baby do this before, so if anyone can offer me some peace of mind, please do so. Just another confusing thing to worry about!

Will they ever like solids?!

I'm beginning to wonder if these girls are EVER going to like eating solids. So far we've had no luck with rice cereal, or any orange veggies which is what they say you should start with. They just don't like any of it AT ALL. I get gagging, spitting, tongue thrusting, and lots of bitter faces. Mady is definitely the worst, she won't swallow ANY of even the smallest little bite. Katelyn doesn't like it, but she'll at least swallow some here & there. But she usually ends up in tears after a few bites in. I don't know if I should try fruit mixed with veggies to see if that'll get them to eat or what? My boys pretty much liked most solids after getting used to the new texture, they both took to eating pretty well. I just don't know what to do. Should I be stressing about this? Is it too early to worry about it? Right now Katelyn has been waking a lot more to eat at night, only going 3-4 hrs at a time again. This tells me she needs more in her diet, but she won't have anything to do with it. I'm going to try some green veggies, probably peas first, but I doubt they'll like that either.
I just don't want them getting hooked on fruits before veggies, fearing that's all they'll eat (if they like it that is). I just hope this isn't the start of poor eating habits for them. I mean they're so small already, and if all I can get them to eat is formula then what does that mean for their eating in the future? They are both on higher calorie preemie formula which is fortified to add even MORE calories. Madelyn gets even more because she does'nt eat as well, and the thick it we have to use adds more calories to her bottles. So thankfully they seem to be gaining weight, though slowly.
They are 6.5 months adjusted, so maybe it's still just too soon for them. I hope that we find something they like SOON though, so that way at least I feel that they are moving along, and making progress. I know sometimes you have to intoroduce the same food several times before they decide they like it, so maybe they just aren't sure what to make of it yet. In the meantime, at least they are gaining weight, and these faces they make sure are amusing.

First day of 1st grade

Our first baby has started 1st grade today. Jacob was so excited for this day to come. For weeks he counted down..."only such & such days till school starts Mommy" he'd say. He really enjoyed his time off this summer by playing with friends, fishing with dad, playing X box, swimming in our backyard pool, watching a bit too much t.v. But he LOVES school! Of course I am very glad that he really enjoys school, and is super excited about being there...BUT, today was very hard for me in a totally different way than when he started pre-school or kindergarten. Today it REALLY hit me that my baby is growing up, he's not a little 3 year old boy anymore, he's becoming a BIG KID!!! He had a bit of the 1st day jitters when I took him into his class. I smiled & told him he was going to have such an awesome time, stayed with him for about the first 10 minutes of class, getting him settled. Then off I went leaving my baby behind, of course crying as I walked back to the van. Heck I'm still crying this evening. I'm very surprised at how emotional I've been today. I guess I just kinda feel like it's the end of an era. My time with him being home with me as a little guy is now officially over, and now his days will be filled with school, friends, homework and undoubtedly less Mommy time. When I picked him up today, I was so happy to hear about how those 1st day jitters quickly changed to lots of fun & excitement, he told me lots of details of all the new experiences he'd had today. Making new friends, meeting a new teacher, reccess, eating lunch in the cafeteria for the 1st time, reccess, rules, oh & did I mention reccess? I know I'll get over this little pitty party I'm having for myself today, which by the way was completely overshadowed by all the celebrating we did for Jacob. I just wish time didn't go by so damn fast! I wish I could freeze it for a bit, and keep him my little 3 year old boy who only had eyes for his Mamma. Here's to growing up! Jacob your daddy & I couldn't be more proud of you, and the sweet young man you are growing into. We love you!!!