"We are a contradiction in packaging,for encased in our small bodies are not small minds,not small needs and desires,not small goals and pleasures, and not small appetites for a full and enriching life."
I gave the kids a bath after dinner tonight since Will's helping feed Kaela turned into Kaela being covered in yogurt. I give them their baths take them out and get Kaela dressed. Will is walking around with no diaper and says, 'Mama I potty." So I ask him, 'do you need to go potty?' He says I potty I potty, sure enough, he peed right there on the kitchen floor. So I say tell him we don't go potty on the floor we only go potty in the toilet or diapers, not the floor, "that's nasty". His response? "I nasty." Not asking, not upset about it, just telling me in a 'well of course it's nasty, I'm nasty" kind of a way. It was quite funny.
Here's a pic of the little man thinking he's pretty cute after mom laughs at him...
Kaela after her bath just being her cute little self.
Kaela had her scheduled appointment with the Orthopedic surgeon here at the University of Michigan Wednesday. It was a long day! We got to the hospital before 9 and were there until about 1:10. It makes for a longer day with a 13 month old and a 31 month old :) They were both very good though. We started with xrays of Kaela's spine to check her scoliosis and kyphosis. We then went to meet with Dr. Hensinger, Kaela's ortho. He brought the pictures of her spine which I could tell right away were quite a bit worse then they were 6 months ago. Her scoliosis has increased quite a bit, just about doubling, and her kyphosis went from just about nothing to a 32 degree curve. (I think that's right). I know 32 doesn't sound that bad in comparison to some, but with the scoliosis and knowing this is not going to correct itself it is pretty bad. Plus it didn't take long for it to get to this point. The Dr. was actually a little concerned about the kyphosis. He said they don't really want it to get past the 30's, and that they try not to do surgery until the kids are at least 3, but we are going to have to watch this closely :( Kaela's back brace has been way too small for awhile now, so he ordered a new back brace as well as afo's (ankle/foot orthodics) because her feet are really turned in. Her legs are bowed too but we are not worrying about those right now. Since she's standing so much now, we need to get these on her feet/legs to help her feet stay straight as she stands. She likes to stand on her ankles sometimes as well as her tippy toes, which doesn't look like it feels too good. Hopefully these will help her out.
So after we met with the Ortho we went to check out and go down to get fitted for her back brace and afo's. While I was waiting in line to check out I had Kaela's brace around my arm and this lady said, 'look she has a brace just like yours.' So I look over and there's the cutest little girl sitting there with her mom. My first thought was oh my gosh, that little girl has Achondroplasia! I didn't really know if I should say that and all I could that about was me saying, 'Does she have dwarfism?" and the lady saying "What? NO!" and me shoving my foot in my mouth:) I mean I was sure of it but still....so instead I asked if her daughter used the brace for scoliosis or kyphosis or both...then she told me, oh she's a dwarf. I said OH MY GOSH! MY DAUGHTER IS TOO! I was so excited. I mean I knew this, but she told me and we now share something in common :) We both KNOW we have dwarfs :) okay so anyway, I got talking to her while Matt was out in the hall giving me looks like would you shut up and get moving, not knowing why I was talking to this lady. So anyway, the mothers name is Misty and I think her daughters name is Hayley. She is 28 months old and seriously is one of the cutest little girls I've ever seen! Kaela is going to have some competition now :) Misty said she has never met anyone else in person and that the people she talked to have older kids so she didn't think there were any kids around here the same age. They are from Milford, assuming I remember correctly. I told her there are a bunch of cuties around the same age and said she has to get together with all of us which she sounded very excited about. So that was very exciting. I can't wait for you to all see how cute this little girl is. I thought about asking to take a picture but didn't want to sound like some weirdo asking to take a picture of her kid that I just met. So that's pretty exciting.
Now that's not the end of our excitement. Matt and I got an email last week from a father of a little girl in the UK who has Metatropic Dysplasia just like Kaela. So that's pretty cool right? Now most of you know MD is very rare so of 80 some people in the world, here's another little girl's family that finds us who's daughter's name is Kayleigh. Which is kind of cool seeing how close their names are, then we find out Kayleigh was born 6 days after Kaela!! And not six days and 3 years, but just 6 days! They were told Kayleigh had Achondroplasia sometime after she was born (not right away though), but just found out in June I believe she has MD. I think they are going through what we went through in the 1st six months now since they just found out she has MD. MD has quite a lot of complications and can have some life threatening problems, so I think it's been hard for them thinking she has Achondroplasia which in most cases doesn't have a ton of problems, to MD :( So Matt and I have been in touch with her dad quite a bit the past week. They seem like a very nice family and I know once they get through all the scary stuff you hear when you first find out it will be easier to deal with. Of course we will have things to go through their whole lives, but I know the first six months was very very hard. Kayleigh and Kaela look a LOT alike too. I won't post any pictures because I want to respect their privacy. Maybe one day..but not for now, but trust me, she's cute :) So anyway- that has been really exciting for us. Hopefully one day we will be able to meet them in person!
So otherwise we are enjoying these nice summer days while they are here and looking forward to my cousin and her son Hunter visiting soon!! The kids are growing and changing so fast! It's really fun watching them play together and watching how they interact with each other. I hope everyone is having a great weekend. Tonya and Will (and family) we are thinking of you and are here if you need anything!
A few pics of the kids for your enjoyment!
Look at those arms stretch :) It's so cute she does this every time she sees us now :)
Will loves talking to his Aunt Rachie in Texas..as you can see he also loves playing in flour with this trucks (even right after a bath)!
The kids at the hospital being so good.
P.S. I added a guest book. We'd love it if you signed it. It's fun to see who reads (even those of you who don't comment)! :)
Okay, I need your opinions, and I really want your honest thoughts or opinions. The neighborhood I live in started a blog about a year ago to keep everyone in our community updated on new developments, for people to post questions, comment on things about our neighborhood, etc. The person that started the blog lives here in our development. So today their was a new post just letting us know he gave the blog a new post, and posted a 'funny' picture. Well for some reason the picture really bothered me. I don't want to post the picture here, but want your opinion on this, so if you click here you can see the photo. If you look closely at the person in the photo it looks like this person may have down syndrome. My first reaction was, 'this really isn't appropriate to post on a community blog,' and obviously having Kaela, I'm a little more sensitive to things like this. I don't know if the picture is poking fun of that person (but we all know how people can be), but I thought it could really offend someone...so I left a comment. This is what I said:
"I'm not usually one to comment on something like this, but I am feeling a bit bothered by the pic. I don't know if the intent was to poke fun or not, but it seems as though the person in the picture may have a disability and being the parent of a child with a disability I think this is a bit insensitive. I just think that this could offend someone, and I really am not sure what the point is? I can understand how the photo itself can be funny, and I'm sure you did not intend to make fun of the person or disability, but I'm not sure that the picture is appropriate for a community blog. I really am not trying to be the annoying neighbor, I am just trying to think of the affect this could have on someone that may read/see this. Sarah
So I was trying to be nice and say this in a nice way. Just my opinion. This is what he wrote back:
Um-it's not poking fun at anybody. It's a picture of a person who is using a couple of trees to prop up a champion stand and that person just happens to be in the middle of it. The point is, the trees just happen to be positioned in the 2nd and 3rd place spots. If this picture is TRULY offensive to anyone else, I'll take it down.
Okay, I really am not usually like this, but this pissed me off even more. I felt like what I had to say didn't mean anything and I felt like I was being treated like I was stupid. Maybe I'm just having one of those days, but it really bothered me. I came home and cried. I said to Matt, if that person in the middle was a little person I would be really mad. It just so happens to be something different. I mean I could be wrong, (it wouldn't be the first or the last time!) but it sure looks like this person has a disability. So anyway- I was really upset. I thought, oh, okay, if two people are offended then it's worth taking down, but not just one person. Plus I was pissed about the way he explained the picture. As though I'm an idiot and I didn't understand the 'joke.' So I wrote this:
"I have enough sense to understand what the joke is, and even GET IT! But my point is that their happens to be a person with a disability in that picture. I guess I'm sensitive to it since my one year old child has a disability. Apparently one person being offended is not enough for you-and apparently you'd rather have this turn into an argument about who thinks what. I just stated my opinion as a person who has to deal with this kind of ignorance every day. I don't find the joke offensive, I said I believe it could offend someone seeing as though it happens to be a person with a disability, obviously that doesn't seem to matter."
So after this he decided to take it off the blog. Maybe I am being overly sensitive, but I just found it to be rude and and I found it to be even more rude when he made that second comment. So I want your opinions. I really do, so tell me the truth :) I know people who have children with down syndrome and I'm sure they would not appreciate seeing that. I don't know, just as this person does not know, if their is a family in our neighborhood that has a child with DS and might not appreciate that picture. UGH. It is 11:33 at night. I sat here thinking about blogging about it so had to get up and get the laptop so I could do it. I just picture Kaela standing in that picture and knowing I would appreciate it if someone stood up for my child in a case like that. Anyway. I'm off to bed.
I know I know, I am a slacker. I have neglected my blog and some of you have reminded me of this (thanks Rachel and Tonya)!
I will try to update you with a quick "what we've been up to" post.
Lets see this past weekend was fun. We went to Hannah's 4th birthday party which was lots of fun! They had lots of good food, a pool, swing set, sandbox, ride on toys and Will's favorite, a trampoline! Will had a BLAST!! Now I want to get a trampoline for our 4 ft yard. Okay it's not quite that small, but it is pretty darn small! Thank you Catie for inviting us, we had a great time. It's so nice being so close to so many great families! We feel really lucky to have met so many wonderful families. We were lucky enough to see Tonya, Will, Knoah, Hannah and Jacob their too!! For those of you that haven't met them or Catie and her family, they really are as great as they sound on their blogs :) Actually better. Really fun and nice people.
So for those of you who remember, my sister was supposed to come home in June. She was going to be here for the end of the LPA Conference and for Kaela's b'day, but unfortunately she faked being sick and cancelled last minute. Okay, she didn't really fake it but I like the reaction I imagine she has in my head :) Love you Rachie. She really was sick
and we were so sad that she wasn't able to come home, but we understand. Now we don't know when we will get to see her, but hopefully sooner then later. I would love to make a trip out to see her, it's just so expensive with all of us and trying to save for next years trip and our trips to the doctors. So feel free to send blank checks made payable to Matt or Sarah :) Just kidding...well sort of.
Art fair starts this week Wednesday in Ann Arbor. This is a HUGE event. People come
from all over the country to sell their art, whether it is pottery, paintings, life sized 'people' (which are truly amazing they are so life like), and so many other forms of art. I love going. I work right downtown so we get to enjoy it on our lunch break too. Hopefully my mother will be participating in it next year. My mom is a very talented potter...but I will save that for the next post. I have some great pics to share with you, but have to figure out how to get them to upload....so stay tuned.
Last, but certainly not least, we saw Dr. Pauli last week. It was really a great visit.
Dr. Pauli is such a great guy. Cassie is wonderful too. I just love how he takes the time to go over EVERYTHING, to answer questions and he's so prepared. Most of you know how rare this is. I mean how many times have you walked into the Orthopedics office and they didn't have pictures of the films you just took a week ago (sometimes an hour ago), or they are missing some notes, etc...Well Dr. Pauli is always organized and stays right on track with the conversation. He said Kaela looks GREAT and is doing great. He said that he's never told parents of a Metatropic baby not to worry about the lung/breathing issues (most M
D babies are born with many breathing/lung problems) but he said we don't have to worry about that. Kaela is very healthy! We have to continue to watch her neck and spine on a regular basis, which is of course a big deal, but expected. This reminds me I never posted about our apt. with Dr. MacKenzie and Bober from Delaware Childrens hospital. They were WONDERFUL too I might add. Dr. Mackenzie wants Kaela to get an extension/flexion MRI soon and says she needs a new brace, which we knew, but otherwise looks good. I guess there was something on her xrays that showed a little concern so he wants to be sure
her neck is stable. That's a little scary and frustrating because we had just seen the docs here literally a week before who said we didn't need that. UGH. But we see our docs here (Ortho) next week and Dr. Mackenzie should be emailing with our doc so this should get done. The neck is not something we want to mess with and it's very common for kids with Metatropic to have their c1 and c2 vertebrae fused at some point so we must watch this closely...so lets hope for the best with that.
I will keep you posted on that too.
Anyway-so much for not having a lot to say. I will leave you with my cuties!