Monday, January 28, 2008

Little Miss Kaela

So our little miss Kaela is just so cute. She is really doing great too. She started rolling about a month ago, but she's really a pro now. She had a hard time to start, which PT has really done a lot for her in this aspect I think, but now she's all over the place. She loves to be on the floor and rolling around. She really gets herself where she needs to be. It's pretty cute. She is getting quick too. If she sees something on the floor that would go perfectly into her little mouth she's off. She's working on getting those little legs up under her and trying to push forward but it is still hard for her, although I would guess she may actually be able to scoot within the next 2 months. I do worry about her and PT though. So many people talk about PT in a postive way for LP kids, and then so many of them talk about it in a negative way. I go back and forth. I see what it has done for her in terms of her rolling now and her flexiblity has improved SO much...but I do worry that they will do something that could cause more problems now or in the future without knowing it. I can't blame them for not knowing- there is so little information about it out there, but I have to sometimes go with my gut. I think to myself that if I feel this is not good for her, I just have to listen to that. I mean, really, what's the big rush. Everyone says that LP babies/kids do things in their own time. Which I really believe about all kids. Every kid is different wether we are avearge size, little people, etc...we are all individuals that will reach our own milestones in our own time. I don't care that Kaela is not sitting. I mean really, who cares. Well, the PT cares, but does it really matter? I do understand that she needs those stomach muscles to do many things, but it will all happen in it's own time. So many people have strong opinions on this on the POLP website too...I enjoy reading things people write and really like that I can ask something if I need to and get help from other parents of LP's, but some people are soooo opinionated. WOW. I think sometimes we get caught up in thinking we know what is best for people, when as a parent, there is no one that knows better. We all have the rights to our opinions, but again, not one of us has a child exactly the same. And what works for one may or may not be good or work for another. I think we need to listen to ourselves and our doctors here. Many of the parents on the POLP website have Achon babies, and what is true for their babies may not be true for mine....or someone elses even who is Achon. It makes you question things though. I don't know. I think it's important to talk to your specialist and Ortho docs because I believe they really know the most.

Anyway-back to Kaela (I got off topic there a little huh?!) So yeah, she's rolling all over the place, she's eating real foods, well smashed up that is. She seems to be doing really well with them too. She's always been good at that. Our little chunky girl. She really liked her pears last week. She ate the whole jar. She seemed to really like the sweet potatoes and corn too. My mom gave her some ice cream this weekend- talk about loving food...that she loved!! Go figure! Will was kinda the opposite as her. He was not too crazy about sweets, but she is crazy over anything sweet that you put in her mouth :) Just like her mama!

Her and Will are still madly in love. I just love watching them together. Kaela truly lights up when she sees her brother approaching. Talk about a picture perfect world. They are just so cute. I can only hope that they continue this special bond as they grow. I know Matt and I will obviously raise our children to be loved and love...and hope that they will carry it on in life.

I could probably write forever...but will stop for now.

Monday, January 14, 2008

How we found out...

So, we wanted to start this blog, and did, but have not really done much with it. I guess it's time we start. So it's now January 14th, and our little Kaela is almost 7 months! It's crazy how time flys when your busy busy busy...and having fun :)
I'm going to do a little back about 7 and a half months ago to give a little insight into how this all came about.
This was our second child. We already had a son, William, who brought more joy into our lives then we ever new existed. He is now 2, as of December 2nd and such a great big brother. So my pregnancy was pretty routine other then having gestational diabetes for the second time. I was taking insulin twice a day and started those lovely twice a week non stress test at 30 weeks I believe?? I also had an ultra sound with one of those non stress test, so I was able to see our little girl quite often. Something good that comes out of having to poke yourself twice a day with needles and 4 times with the sugar tester! We didn't find out we were having a girl right away either, it took a couple of ultra sounds before we knew, but we were so excited to find out we would be able to add pink to the wardrobe :)

So around 32 weeks I had an ultra sound to test the baby's weight since I had the diabetes. The babies weight was measuring a little low for the number of weeks and her long bones were measuring shorter then 'normal' (a word I really don't like using anymore). My mom was with me at this appointment. They had us in this room forever waiting to see the doctor. You know something is not right when you are waiting to see the doctor forever and their are about 7 other doctors/interns looking at her images on the computer outside the room. Once we finally saw the doctor she told us that they weren't sure what it was, it could just be that she was small, asked us if we had 'shorter' people in the family but also told us it could be a skeletal dysplasia. I had never heard this term before and didn't know what it meant. She very briefly told us that meant her bones were not developing properly and she could be a little person but lets schedule another appointment in 3 weeks to see how she is growing. I was worried but not too worried. Sure we had smaller people in the family and who would have thought? Well, 3 weeks later little Kaela hadn't grown at all...this is when they confirmed she had a skeletal dysplasia. They said they thought it was Achondroplasia but couldn't be sure until she was born or if we had an amnio to find out. We opted not to have that done since it would either say yes, she is Achon or no she isn't and we don't know what it is. About 3 weeks later Kaela was born at home. No, not on purpose! Why would you do that on purpose :) She came VERY mom caught her, my son was throwing up sick and my husband was trying to put a video on for him when my mom walked in just in time to say what the...and pretty much catch the baby! EMS got here about 3 minutes after she was born and took us all to the hospital. We knew pretty quickly she didn't have Achondroplasia because she didn't have any of the characteristics. About 2 days later they diagnosed her with Metatropic from some xrays they had taken. She was in the NICU for 2 days and in a regular room for 4 days. She had to stay there until she had an MRI to be sure her neck was stable. It was and we finally brought her back home.