Sunday, February 24, 2008

William's Big day..and little Ka had fun watching

Today was a big day for big brother Will. He went skiing for the first time! Downhill skiing! We were at the mall playing this morning when Grandpa Bill called and asked if we wanted to take Will. My mom and dad have been looking forward to taking him skiing. So we went out to Brighton and Will had a blast! I thought he was going to freak out and start yelling no (it would not have been a surprise if he had), but he was totally excited to go. We told him the whole time on our way to my parents and the way to Brighton he was going to go ski with Grandpa and he kept saying 'grandpa, ski' even though he had no clue what skiing was. But once we got there we went to get his boots and skis and he was sooo good. I took him outside while my parents were getting their stuff and he was thrilled to put his skis on! Matt and I took turns holding Kaela and helping Grandpa get will around. We started by just walking/pushing William up the hill a little ways so Grandpa Bill could get used to skiing with him in between his legs...then off to the rope pull it was. Will LOVED it! He had so much fun. Every time they got to the bottom of the hill William was already saying, ready again again. He LOVES his Grandpa and was sooo happy to be out playing with him. If I even tried to help sometimes he wanted me out of the way and wanted Grandpa! So it was a total success! He did really well too. He got the hang of walking on his own in the skis and getting over to Grandpa on his own. I think by the end of the day Will was supporting himself more going down the hills too. Grandpa said he was getting 'free' rides and turned to putty for awhile :) He enjoyed the ride while Grandpa did all the work! I think Grandpa Bill is going to be sore tomorrow! So we had lots of fun and can't wait to go again. Next time I think Matt and I are going to put on some skis too. Matt has never been, so that will be fun to watch :) For me at least!

Kaela had fun watching her brother and being outdoors. It was such a great day for it! Kaela was great of course. The only thing she had a problem with is she wanted to get down! She is sooo squirmy these days! She wants to move so badly...she rolls like a pro and is starting to get her knees under her, but not sitting or anything yet so it makes it a little harder. Harder on us and her really. Matt took her to the doctor the other day because she has not been feeling well to be sure she sounded okay (breathing) and she weighed 18lbs 8oz! Holy cow! She's so big! I think Will only weighs like 27 lbs! And he is 2 years old! Big girl :) She's sooo cute though. They are total opposites, it's pretty funny to see them laying together with no pants on and see how different they are. I love those little chunky legs Kaela has! And by the way- her lungs sound good. Poor little girl doesn't feel very well though, although you would never know it. She's always so happy and always has a smile on her face!

Well, I just wanted to add an update and write about Will's big day!

I want to throw a HUGE thank you out there to a wonderful friend of mine that I spent some time with this know who you are! You are too good to us and we love you! We are so thankful to have you in our lives.

Saturday, February 16, 2008

How smart and cute are my kids?

SO- May I start with bragging? Of course I can, it is my blog :) Well, although we all think (well know it some cases) that our kids are the cutest and smartest, I must say my kids are at the top of that chart! Who cares about how tall you are or how short you are- if you can give a look like Kaela and Will, then you are set for life :) I will start with my loving little boy! I know we started this blog with Kaela in mind, but I do not want Will to ever feel left out because the love and admiration we have for this little man is indescribable! We went to twelve oaks today, I guess for something to do, and realized how much better he is getting in terms of listening. He turned 2 in December, so he's still young, and enjoys doing things on his terms, BUT he's getting so much better. Those crazy fits are more and more rare (thank you GOD!) and he's listening! Now, I have always thought William was a terrific child, he was a calm sweet baby, and he is a sweet toddler...calm, not so much anymore :) The point is, we were at the mall and of course he prefers to walk then be pushed around. HELLO, he is a BIG boy mom! He tells me he wants to walk, so that's fine, I tell him he can walk but he needs to stay close. He starts walking and we are trying to get Kaela adjusted in her seat and he STOPPED...I'm making a big deal of my son stopping when I tell him to right? But he's 2! Those of you who have kids this age or have had kids this age probably understand. He was just really being great. I'm so impressed. He totally gets it from me ;0) wink wink (If you know me, you know I don't like being told what to do, so it really must come from Matt ha ha). So besides being SUPER cute, and hilarious (seriously, this boy can crack you up!) ...and a good listener he is also super sweet and cuddley. I hope all of you who have baby boys have them grow as sweet as Will. Every night he will lay with me when he's tired and rub my arm and give me hugs and kisses...Oh how sweet! I just love this little boy!
Now onto my super cute and bright little girl! Valentines day she decided to come out with da da. My mom was here to witness it! She's very much into mocking and I have been trying so hard to get her to say ma ma...then out comes da da. That's alright, Will gave me mama first. Now, I know I know, she doesn't really KNOW what da da is yet, but she still said it! That counts! And if you ask Matt it counts for more then just making the noise :) THEN she showed us her true brilliance today when we were at the mall. Matt was drinking a smoothie and I told him to give her a little taste. (I think I mentioned she likes sweet things before?) WELL, she goes on to SUCK out of the straw! He was giving it to her with just the straw (like outside of the cup, hope that makes sense)...but she sucked! So I was shocked, so I said put it in the cup and see if she sucks out of the straw and she did it! It was soooo cute! Matt and I were both so excited! Matt gets his IPhone out and takes a picture for proof of course! We were sitting down in the food court laughing and jumping around taking pics :) Dorks I know! But hey, Will was over a year before he started sucking out of a straw! It's so cute to watch her suck out of it! She's so smart:)
Well, I just wanted to update quickly before I forgot on how cute and smart my kids are!

Wednesday, February 13, 2008

Moment of Impact

This is my second post to Kaela's blog and I feel a bit embarrassed that I have not added more. There are a few reasons as to why I have not been able to express myself that have to do with, I now realize, just how much I didn't want to believe anything was really different about Kaela. I have also had a bit of bloggers' block. Ever since Kaela's diagnosis I have accepted fully that my daughter would be different than the typical child and I can say that I do not care. Kaela has grown to be my shinning little pumpkin, so sweet and inocent and she melts my heart with her little smiles and amazes me by saying nothing more than "ba, ba, ba". It wasn't until recently that the gravity of her situation hit me in a very negative way and also a very positive one. Most people want the bad news first but since I can't call the shots with the outcomes of kaela's development I will call the shots here. I'm going to tell you the positive impact first. Recently my family and I attended our first LPA event in Troy Michigan at the home of Stacy, an LPA member and a little person herself. Sarah and I were both nervous because it was an environment that we had never experienced before coupled with meeting new people. The event went better than I could ever have expected. Everyone was welcoming and easy to talk to. The people we met were all amazing and offered insights that we couldn't have found at any doctors office or genetic counceling session. We were also able to meet other parents who shared our circumstances and shared stories with them as well. There was one moment however that I will never forget about that meeting for the rest of my life. Itwas really a small thing now that I think about it but the way it made me feel was what made me remember it long after we got home. We had arrived at Stacy's house in Troy and my wife suggested she take the kids into the house while I parked the car down the street. After parking I walked to the house more nervous now because I would be walking in alone and without my family. When I came in the house I was greeted by another LPA member and she walked me into the living room of the house where I saw the image that impacted me so much. There in the center of the living room was my daughter, smiling and happy as could be, sitting on the living room floor surrounded by little people just like her. That image froze in my mind. It was the most beautiful thing I had ever seen. To see my little pumpkin, welcomed, almost as if she had been saved. Those surrounding her seemed to speak to me with their eyes saying, "its ok matt, we are here now and theres nothing to worry about." I felt an extreme feeling of relief and comfort. I knew at that moment that no matter what happens in Kaela's life she will always have people that she can relate with, share stories with, share pain with. She will have these people and others that will be able to empathize with her like no one else can including myself and Sarah. Kaela will be able to develop relationships with these people, relationships that will be more beneficial than any reassuring words from her parents, any doctors advice, any surgery or physical therapy. To have people to be with that are a lot like you physically when no one else is like you can feel like salvation. I'm glad and we are blessed that we live in a time where organizations like the LPA and the people that make them great are alive and thriving.
Now for the negative impact I have recently experienced. My wife spoke in her latest post about our trip to the hospitalfor Kaelas x-rays. When we recieved the x-ray results it was another moment that I will always remember. I had taken my son William to get a bagel and then I made my way to pediatric x-ray. When I got to the waiting room I sat down to finish my breakfast while William played in the lobby with the hospital toys. Sarah came out shortly after with Kaela. For some reason I felt like I did at every other doctor appointment meaning I didn't expect to hear anything new about Kaelas condition. So I just sat there staring off until Sarah murmmured, "her spine looks REALLY bad." My heart sank. I had been told by doctors from the beginning that her spine would eventually start to curve and that it mayeven be very bad. I had also always been told at those times that her spine looked fine and was not curving. I guess I just expected to hear that again. This time was different. As Sarah's post said before, Kaela's spine is curving and it is curving a lot. It has her doctor concerned and now thoughts of surgery cannot be erased from my mind along with theother health problems that stem from Kaela's kyphoscoleosis. I just didn't expect this to happen so soon and so agressivly. I thought we would have at least a couple years before we had to consider weather we wanted growing rods or regular ones or if we would be worrying because our daughter was having a hard time coming out of anesthesia. I just thought there would be more time. Never-the-less that time is here and we have armed ourselves to the teeth with knowledge and support structures that will hopefully allow Kaela to have a fighting chance. I know she will be ok or at least I like to tell myself that and for now I have begun taking things a doctor appointment at a time. We have our goals and assignments until next time and we will do everything in our power to make sure we stay on track. Well thats all the gushing I can muster for now. Not bad for a second post if you ask me. I want to wish all those other families out there who share our circumstances the best of luck and may god be with you as he has been with us.

Changing form

I'm giving this post the name 'changing form' because the word Metatropic comes from the greek word, “Metatropos," which means changing form. Today was Kaela's appointment with the Orthopedic surgeon. She also had cervical and spine xrays. We all went up to the hosptial this morning, so it was a busy morning. I took Kaela up for her xrays after checking in downstairs in Ortho and Matt took Will to get a bagel. The xrays were actually a little more traumatizing then I had imagined them to be. I walk into the big room with those big xray machines that hang from the ceiling and a big bed. I figure that's where she's going, but then the lady says, "we need to set her up here." It looks like a little torture chamber. There's this little 'seat' that sticks out (kind of like a bike seat, but much smaller) where her legs hang over the sides and then they put velcro straps all around her body, check, holding her little arms down and then this plasictic 'thingy' that goes from above the side of her head over her face, under her chin and back up. The poor little girl is sitting there looking like some crazy person having to be strapped down (only sitting up). She was still smiling though...until I had to leave her sight, then her little head turned as much as she could get it to turn being strapped down and couldn't see mama anymore! My eyes filled with tears and I wanted to run out there and hold her! After the first picture they let me put a vest on and go stand with her, which made her happy. She did her little 'ba ba's' after that :) Anyway- I'm dragging this out much more then it needs to be. We then go back downstairs to see the doctor, who I really like! It's just too bad he won't be around much longer, but at least he has the chance to train a group of people and educate them! SO, he brings in the xray pics and shows us the curve. We knew before going that her back was starting to curve because you can see it and feel it, but you don't really realize how much until you see the xrays. I just loaded a picture of her xrays so you can get an idea of what her spine looks like.

In 6 months she went from nothing to a 37 degree curve :( Now, we knew this from the beginning, but knowing this doesn't really make it any easier to 'deal' with. She is our baby and while you know it's going to happen and you know it's happening, you hope it won't. Sounds silly, right? But I can hope....I will continue to 'hope' and pray that it doesn't curve 'too' much. Well he seemed to be a bit worried about it, so he said he thinks we should start bracing her now. Again, I knew this was coming, and I actually even said before going that I had hoped he would brace her since I knew it was starting to curve and I want to do whatever we can to help minimize the curve. We went straight to orthodics to have her fitted for the brace. She will have to wear this at ALL times. Poor girl. It will help both the kyphosis and the scoliosis. You can see the kyphosis in the last picture. It's not too bad, but again, is supposed to get worse over time, so we are bracing for all purposes. She was a little angel getting fitted for the brace (of course). We go back in 3 weeks to get the actual brace, then back to orthopedics 3 weeks from that or 6 weeks from today to have xrays done with Kaela in the brace and out of the brace to see how it fits while it's on and to see if it's helped since wearing it.
As for the other parts- her legs are very bowed, which he said look as though they may have gotten worse. One of the bones can grow faster then the other, causing the bowing to worsen and cause the foot to turn inwards. This is happening. He said they try to let it correct itself usually until 12-18 months, then try bracing, and then do surgery. It is thought she will need surgery, but again, we hope that will not be the case! It may be something we look at sooner then 12-18 months if those bones grow faster and cause more curving.
The GOOD news...well, her neck is still stable. Something he wants to continue to watch every 6 months for now, and then possibly change to once a year, but knowing that is stable right now is huge! As those of us with dwarf children know. Also- one other thing he confirmed, which I knew, and have stressed to the PT, is that she should NOT be putting pressure on her feet, knees and NO trying to get her to sit. The PT's have been GREAT in helping her flexability and range of motion, rolling, etc...but sometimes it's hard to convince them I am correct about the sitting, knees and weight on the I'm glad to get it first hand from him. Kaela's trunk is really long, so he said that can cause even more problems then maybe Achon babies who have a shorter trunk, because she has more weight on top that she has to learn to control (although that is true for dwarf babies in general with head and trunk) but her trunk is extra long...even longer then the average kid! So falling forward can mess with her spine even more...something we don't need. It does enough of that on it's own!
There's an update on our appointment today. We pretty much left with that sad feeling of thinking, "poor Kaela," but also knowing we are doing everything we can for her and will continue to. Kaela has so many people that love and adore her! She has GREAT grandparents, aunts, uncles, cousins, friends, and family! So while I'm on that topic, I want to say a BIG thank you mostly to grandma and grandpa on both sides! You have been extremley supportive, loving, caring from the day we had that ultra sound that told us there may be something wrong. You all have been so great to us, being sure we are okay, and the kids are okay and just supporting our decisions and supporting and loving Kaela and William. So we love you guys and are so lucky we have you, and the kids are even luckier! I know that both William and Kaela will grow up feeling loved and cared for by all of us (friends and family included).
I also have some GREAT friends that I work with that have all been extremly supportive on a work level (time off for all these crazy appointments) and on a friend level (asking questions, making us meals, getting us groceries, even if it was awhile ago, it has not been forgotten) we love you guys and are so thankful!
Rachel-We love you and miss you! We know you are far away, but know how much you love all of us and worry! And don't worry, Kaela knows YOU are her aunt :) Will too! They love you and miss you tons! Come home soon.
All of you- we are lucky to have you and appreciate you all!

Monday, February 11, 2008

Making new friends

So we had our first LP event this weekend and it went great! We met so many great people. I was a little nervous about going, didn't know what to expect or who would be there, but it went really well. I believe the majority of people there were little people, most of them adults. There were some college aged lp young adults and a few younger ones, and then there was Owen and his mom and grandma. What nice people! Owen is absolutley adorable! His pictures are so cute, but no comparison when you can see him in person. Such a cutie! His mom Cat and grandma Jennifer are such nice people too! I'm so glad we met. It will be fun to watch Owen grow and hopefully get to know their family better as time grows and the kids grow up. Cat- you called dibs on Kaela- I call dibs on Owen. Ha ha.
Will had fun too. He made friends quick with some of the girls. They were great with him and so patient taking him up and down the stairs. Everyone was so welcoming and friendly. I wish I would have moved around more to talk to more people. Matt talked to a few people that I didn't talk to, as did I, so overall it went really great. I think it will be great to be involved for Kaela and us. I think it will be great for Will too!

So that was great and I am looking forward to the next event.

On another note, Kaela has her Ortho apt on Thursday. She gets xrays then too. I'm a little nervous because I know (since we can see it) that her back is starting to curve. I know that it's too be expected, I just worry because she's so young and I want to be sure they do things 'right.' It's hard being so far away from the real proffesionals in Metatropic (such as Dr. Boeber and Dr. McKenzie in Delware). But we go there in April, so at least it's not too far off. Anyway-Hopefully we will find out if we need to do bracing now or what. We have been so focused on her back I have forgot to ask about her legs. They are very bowed and I don't think they will get much straighter without surgery. Surgery is a scary thought right now...I know it's a reality for her, but no one wants their baby (baby meaning your child of any age ;) ) to have to go through any sort of surgery!

I'm so glad we have started this blog. We have already met some great people just writing here. For anyone that is new to our blog, check out Kaela's friends. There are some CUTE kids!! Check out little Cole too- he is so cute! I love his smile! He just glows in those pictures. We sure are lucky parents having these amazing little babies! Not only are they super cute ;), but I know from having Kaela in our lives that she has taught us so much! I look forward to sharing our stories about Kaela and William...and hearing all of yours!

Wednesday, February 6, 2008

Some good ones and some bad ones

I'm beginning to feel overwhelmed, like I can't handle this job I've been given...the job of parenting a child who has so many more needs. I know this doesn't come out right, because I love and adore my little girl (and my son) more then anything on this earth, but it just feels like too much. I still can't really understand why us sometimes. Why not us is really the more fair and real question...I mean really, why not us? We are good caring people who can love this child like no other, but why Kaela...This poor little girl is so sweet and innocent, why do this to her? I know and understand that things could be worse. I really do, on a personal level, I understand that...I've met those that have it worse and would probably take my problems over their problems any day...but at this moment in time that does not make it any easier. I feel like I'm about to break...but it's weird because I don't feel like it's been leading up to this. I mean I know I have some days where I'm more sad then others, but I don't feel like I've been in this downward spiral. Maybe because I don't have the time to think about it. I just start each day the same and do what I have to do to help provide for my beautiful family. I always will of course, I just feel like I need a moment for myself. To breath and RELAX. I worry so much that it becomes hard to sleep and then I have to come to work and then go home and care for my family...and those lovely doctor's apts. inbetween. I always wanted to be a mother, and love the job more then anything. It's by far my greatest acheivement and by far the most difficult job I have ever had. Then you throw all the things Kaela goes through and has to go through and it at times seems impossible to do. It's so hard to look at her and know all the horrible things she will have to go through and there's nothing I can do to prevent it. The spine surgeries, the PT on her poor tight joints, the people who point with their fingers or their stares, and make those obnoxious comments, and any pain she will go through both emotionally and physically. I know she will grow up with so much love. She will know what it feels like to be loved and know how it feels to love...but that alone doesn't take away all the worries. I come home and see this little girl who is so happy and sweet and just feel so guilty sometimes. I want her to have it easy, or as easy as it can possibly be for someone in this world. I'm so thankful for our son. Not because he's the 'average child' but because Kaela has him and us. I know what a loving sweet child he is and know he will look out for her. I suppose I don't know anything about the future for sure, but I belive it. I know the way they look at each other now and know that behind those eyes within that complex little body of theirs there is so much love to be shared. The way they laugh with each other and at each other tells it all. So I am grateful for having Will their too. (for Kaela and for so many other reasons too of course). I know we all have our moments or days..(or weeks..months). however long it takes, and maybe today is just mine. I know I will forever worry about both of my children. Isn't it somewhere in the unwritten handbook of parenthood- you worry worry worry. And usually for nothing, right? I can only hope that one day Kaela will look at me and say how happy she is and I will look back and say- all that worrying for what? I am not a negative person, I do believe my children will be happy because we will raise them to be proud of who they are and accept ourselves and others for the good and the bad. We all have our own issues...I love my little bean so much and wouldn't trade her or the things she comes with for anything...Those of you who know Kaela know this :) She's a doll. And those of you who are going through the same things...I'm sure can understand some of this more then others...the ups and downs...I know we will get through this. I know I will get through this and I KNOW Kaela will...that's what matters I suppose. Both of my children bring a whole new level of love to my life every single day. You wonder how could it get better...and then all of a sudden they do something as little as look at you with a half smile on their face and you only gets better. Each and every day it gets better. Watching your child grow (as fast or slow as it may be) is the most amazing adventure in life. So on that note...As hard as one day or one week may be....I know I have to be one of the luckiest people in this crazy world!

Saturday, February 2, 2008


So I would like to think that I'm good at this blogging thing (although I've never done it before) but as I look at other people's blogs I think I may be clueless. I love the blogs I've read through meeting people on line. People are so good at sharing their stories, which I know are not always easy. Sometimes it's strange to think you share such personal feelings and issues with people you have never even met before, but I guess it's important to help others and learn from others...and really for me in a lot of ways it's to hopefully help teach others to be more accepting and understand that altough some of us have many differences, we are really all the same.

We have our first LPA event on the 9th of February which I am super excited about. I think it's going to be fun and maybe even a little emotional too. I say emotional because for some reason I feel like when we are in a room with other children and or adults that are little it will make this whole experience more real for us. Maybe not, but sometimes I forget Kaela is going to forever be a little person. I truly have no problem with the fact that she will be little (I wish I could say that about all aspects of it, but when it comes to the health concerns there's no being okay with not okay things)'s just that I have never known anyone who is a LP. I know Kaela will grow up to be the average kid though...the only thing that will not be avearge is her size....and maybe her heart...I have a good feeling about my kids :) Maybe that's the mom talking in me (ha ha)...but I think they will be good caring people. Lets hope at least :)

Anyway- I am very excited about going and meeting new people of any size really. I think Will is going to have fun too- I think he enjoys being around other kids. Matt's starting a play group with the kids in Feb. though, which will be really good for him...both of them really...

So our trip to Delaware is in a few months and I am getting more and more anxious by the day. I am also getting more axnious about meeting more people with Metatropic. I really hope that there will be at least ONE person at the Detroit Conference in June who has Metatropic. It would be really great to actually meet someone face to face! I would really love to meet anyone with dwarfism or a child with dwarfism face to face....I would love for Kaela to have lp friends growing up. I think it would be really good for her...I know I've said this many times before, I guess I really think it would be good for her. I better go tend to my children. Kaela's having fun rolling all over the floor shoving whatever fits into her mouth. She's such a cutie....and Will's off playing with his trucks of course! Who knew a boy could love his trucks SO teddy bears in bed at night..only the biggest metal diggers you can find in the house surrounded by little ones...:)