Monday, March 30, 2009

What's it like...


I was talking with a friend the other day and thought about a topic to write about on the blog. I know I get a few new parents who read the blog or come across it when they are searching for things, so I wanted to talk about what it is like to raise a child with dwarfism. I know there are also people out there who don't have a dwarf child, who might wonder too and that's okay! I know this is different for everyone, so I can only talk about my experience and state my opinions. Obviously I still have a lot to experience, since Kaela isn't quite 2 yet, but I do have some idea. I'm sure the dwarfism part is a bigger deal to some people and families then it is others, and people are going to have their own feelings about what's right and what's wrong for our children just as we do with our average sized children. For our family, the fact that Kaela was born a little person, really means very little. I worried a lot before she was born and right after she was born, but I feel like that was a natural grieving process in some ways. I was scared and I worried about her and things I should not have to worry about, but this was my baby. All I ever wanted was for my kids to be healthy and happy, and then I hear that my daughter is going to be born with a skeletal dysplasia and she will be very little. It turns out I have much more important things to worry about then Kaela being little, because there are a lot of complications that come along with her form of dwarfism, but still, for us, it's really a non issue. Don't get me wrong, I want the best for Kaela and that include the best health care and treatments. I take her to see an Orthopedic surgeon at least every 6 months to see how her spine is curving, check her neck to be sure it's stable, look at her bowed legs, we've seen physical therapist, occupational therapist, a physical medicine doctor, a pulmonary doctor, etc....our lives are different then they would have been had we had an average kid with no medical complications, but really, she's just a kid just like any other kid I would have had. Kaela does everything any almost 2 year old kid does other then walk. I think parents get scared sometimes thinking their lives are going to be so different and that their child's life is going to be so different. I'm not saying that in some ways it isn't going to be or that it isn't different, but I personally feel like it's as different as we make it. I want Will and Kaela to both grow up to be good, caring, smart people. I want them to know they can be whatever they want to be, they can do whatever they want to do. Obviously we all have our own limitations, but for us, Kaela can and will do just as much as William. I don't ever want Kaela to feel different around her family and friends. I want her to know that we love her, respect her, and support her and the same goes for Will.


I sometimes have people ask me if we'd have another kid not knowing which gene causes Metatropic. I don't really understand this question 100% unless you haven't met Kaela ;) I absolutely would and will (hopefully) have another child even knowing that their is a small chance we could pass this down. I adore my Kaela! Will adores his Kaela and Matt adores his Kaela! And our Kaela adores us! Kaela plays just like any other kid...well, maybe any kid that has an older brother. She likes to play with his cars and she likes to smack Will when she doesn't get her way...but hey, she's got to fight back and she does it well! She screams just like any other kid, she laughs, she climbs, she does it all! There is no stopping Kaela. Matt and I joke (I use that word lightly) that Kaela is going to be our problem child. We know she's going to be the one that brings out the grey hairs. She thinks she rules the house with her little index finger out telling everyone "NO!" Or "STOP" to anything SHE doesn't like. I know our kids might need an extra stool, or may need help with some things that other kids don't need help with but I think it just makes them stronger. I don't worry so much about Kaela going somewhere where she can't reach something or what not, because she's already found ways! Obviously I will do what I need to do to make sure she has what she needs in life, but she is one determined little girl! I walked into Will's room yesterday to find her sitting in the middle of Will's train table. Apparently when your arms aren't long enough to reach the middle of the table, you climb on top and sit on it! I just want people to know that our life is just like yours! We might have more doctor's appointments and we may have some extra hurdles, but it does not consume our lives. We really rarely even talk about Kaela's differences unless we have just been to an appointment or we are worried about something with her spine. Obviously we know it's there, but Kaela is Kaela. She is a little girl, a person, before she is anything else. I don't mind the questions people have, because that tells me you are interested enough to ask! If you say something that isn't okay, I'll let you know. I'm not scared to talk about Kaela. I LOVE my kids and would talk about them all day if you let me! I just want people to understand that we really are just the same as everyone else. My kids like to play and have fun just like any other kids. Kaela deserves to be treated just like any other kid her age. Even if you don't think she can do something, assume she can, because usually she can! She might do it in a different way then you and I, but she can do it! Yes, we will have to go through some things that the 'average' kid does not have to go through, but those things are not our everyday life. I do worry about her and Will both, and yes, I may have a day here and there where I worry more then I should, but I feel like that can happen with any child. Obviously I have some things I need to be more concerned with when it comes to Kaela, but I really don't want to ever make her feel any more different then she has to. I know when she steps out into the real world she will have to adjust to certain things too, but I truly believe that because we will raise her to be a strong person she will be fine. I also believe that in some ways this was the best thing that ever happened to us, because it's taught us so much in such a short time. It makes us better people. It educates us, and it's brought us into so many lives we never would have known.
The Kids love this Sit and Spin :)

Kaela on the train table showing off

This was taken at the natural history museum in Ann Arbor....And Kaela with her Bella

Monday, March 23, 2009

Guess who's expecting?!

Just about everyone....except me! I just wanted to post about my how I'm incredibly jealous of all you pregnant women out there! I swear I've read about at least 3 of the blogging families are expecting baby #2 and my cousin is about to give birth any day, and basically I'm just jealous! But so happy for all of you!! I love babies and kids and I'm so excited for every one of you! We've had a cold winter, but apparently that didn't stop some of you from keeping active ;) My OB doc did tell me he thinks more babies are born in the summer because people get bored in the winter! I just wanted you all to know how excited I am for you even if I am a little jealous. I can't wait to have another baby...although I'm sure it will be a little while still. I guess I do have 2 kids 3 and under right now, as if I need more craziness :) Although I like to use the excuse that at least we wouldn't know what we were missing yet if we waited so long that the kids actually slept through the night and could poor their own milk. Where's the excitement in that! Anyway, I just wanted to say congrats to all of you beautiful glowing mommies out there (daddy and siblings too)!
....wondering when we are going to hear about Cole and Owen being a big brother ;)

Saturday, March 7, 2009

Kaela's birth day...and a little more.

I know I've been a disappointment to the blogging world (thanks to my friend Cat for reminding me lol) so I thought I better get on this before I disappoint even more :) I was thinking this morning about how I wanted to write about the day I had Kaela. I know we are going on 2 years in June so this is a bit late to be writing about, but I wanted to write before it's so late that I can't remember all the details....this is something I should have written about a long time ago, but after having Kaela we were so busy with just taking care of her and all the doc appointments it just never happened. Then we got busy with life with these two little rug rats and once again it was not on the top of the list of things to do.  
Kaela was due on July 2nd, and I had not been working full time in the last few weeks of my pregnancy for a few reasons.  I woke up on Thursday, June 21st early as always.  I had been having contractions (minor) for a few days and I just wasn't feeling the best. I called my boss, Katherine, and told her I didn't think I was going to come in because I wasn't feeling the best.  While talking to her I asked her to hold a sec. while I had a contraction, but it was really nothing.  Later she told me she didn't think much of it either because I was talking and sounded fine. I got up and started doing things around the house. I went to the bathroom around 9 a.m. and thought I felt a pop. I wasn't sure, but I thought maybe my water broke. When my water broke with Will I knew it...nothing really happened this time.  I went and woke Matt up and told him I thought my water broke. Will had been sick (throwing up sick) and was laying in bed with Matt.  I just told him casually that I thought my water might have broke. He started to get out of bed, but I went to the bathroom again to check and see if I could tell if my water broke. I came out of the bathroom and said I was pretty sure that's what it was since I had some leakage (sorry to gross anyone out). I called labor and delivery at the University of Michigan hospital and they said they'd have a nurse call me right back.  The nurse called me within 10 minutes I would say and by the time she called back I was in severe pain.  I was having the most intense pain I'd ever felt, up until that moment at least, and I knew something was not right.  When I had Will I had an epidural and loved every minute of my labor.  This was different and I didn't like it one bit.  The nurse told me I needed to come in right away.  What was the hold up? No one was available to come watch Will who at the moment was throwing up in my arms as I'm having a contraction that is making me double over in pain.  Matt had called his mom a few times by this point, but she was in a meeting or something and didn't get the call. We called my mom who was also in a meeting and kept asking Matt if we could bring Will to her.  I was in the background screaming at Matt to hang up the phone and tell her to get here NOW! Matt called his dad at some point to come watch Will.  I had a moment where I felt like my sugar was really low because I got really dizzy.  I had gestational diabetes with both pregnancies so I had to check my sugar regularly and remember when I was in labor with Will I had the same feeling. They checked my sugar then but told me it was fine and it was just a feeling you can get during the last stages of labor. I thought of this while I was in my bedroom, at home, waiting for someone to get here and watch my kid so I could get to the hospital, where you are supposed to be when you have a baby. I checked my sugar anyway to be sure and to my horror it was fine...I knew what this meant....labor was progressing way too fast and I was going to have this baby here. I had to of said this 100 times to Matt and heard him say about a 101 times that I wasn't going to have the baby here.  He later told me he thought I was just exaggerating and being a baby...This goes to show you, you should always listen to your wife!! I asked him for an epidural several times, but he just couldn't help...he did offer me Tylenol :)
Finally I told him through my screams of irritation, pain and fear I was serious. This baby was going to born at home. He said he'd pack Will in the car and we could go, but I told him it was too late he needed to call 911. He called 911 (finally) and they told him to get a bunch of towels and something to tie the umbilical cord with.  Matt went and got the towels and a shoe lace from his shoe and brought them in the room. At this point I was on the floor by the side of our bed on my hands and knees trying to relieve the pain.  Matt left the room for a minute to put a video in for Will so he was distracted and not worrying about what was wrong with mommy when my mom walked in the room and asked what was going on.  I cried out that I was having the baby.  I didn't see her face because I was in too much pain to look up but I can only imagine what she looked like walking in and seeing me there like that.  The 911 operator asked who was there and told her to look to see if she saw the head crowning.  My mom had to take my pants off for me because I was truly in so much pain I couldn't move. She tried rubbing my back which caused me to snap at her "don't touch me." I couldn't believe the pain I felt in that moment. My mom looked and said I don't see anything and at that very moment I had the strongest urge to push I've ever had and almost before my mom could finish saying she didn't see the head, the head was out.  He told me not to push too fast, but again, I wasn't in the mood to listen to anything anyone else had to tell me about what to do during this. I think I pushed 2 maybe 3 times within 1 and a half minutes and Kaela was out!  What the hell just happened here is basically all I could think about. I didn't know if I could move, if I should move, all I could think was MATT!  He was still in the other room...(this was a mater of minutes). I screamed his name and he ran in to see our little Kaela in my moms arms. The 911 operator told us to rub her down with the towel.  My mom dried her off but we didn't understand that she really needed a good rub down to get her going. Matt took her from my mom and listened to the 911 operator as he told him to tie the shoelace around the cord...he tied it, tight, to which he then heard about 6 inches from the body.  He had tied it much further away so imagine Matt trying to untie a not from this to retie it closer to her body. (quite funny to listen to him say this).  Kaela wasn't crying or making much noise, but the EMT's showed up about 3 minutes after she was born, got her to cry and gave her oxygen.  She finally had some color and off to the hospital they took us.  Just as they were taking me out of the house, Matt's dad showed up, wondering what had just happened :)  The houses across the street were being built at the time so let me tell you how much fun it was being taken out after that with all these builders looking at me :) Kaela was born at 10:40. We found this out at the hospital when they nurse told us that the 911 operator logged it.  
So Kaela's birth was incredibly fast and intense and scary, but luckily she came out easily and nothing happened during the labor that required medical attention! I was terrified and would NOT recommend this to anyone....ha :)  I guess if you plan it, that's one thing (I might still consider you a bit crazy....) but if we have any more kids, I will be at the hospital at least 2 weeks before the baby is due....living there...even if I'm in the waiting room :)  You think I'm kidding?? 
At least we got a beautiful baby girl out of it and a great story to tell!!  I still cringe at the pain when I think about it though.  One thing Matt learned during this experience? He will listen to me from now on when I tell him to do something (at least when it has to do with me). 
There's not much new around here.  I guess winter tends to be a boring time of the year since we are always locked up in the house.  The kids are doing great. Kaela is adding new words all the time, getting to be bossier by the day, which I think she's learning from Will, and has quite the attitude too.  She is very sweet though at the same time.  Will is changing all the time too. I guess that happens around these ages (3 and 20 months).  Will's talking a lot more and is just so funny! I love having these two crazy little kids around!!
Kaela has an appointment with the Orhtopedic surgeon on Wednesday. I'm a little nervous about the apt. because I know her back has curved a significant amount since the last time we were there.  We will just do whatever we need to though to be sure she gets the best care for what she needs.
We did have a great, sunny and nice day here on Friday.  Which is great, because I have Friday's off, so it was so nice to be home with the kids and get to enjoy the nice weather.  We went out a few different times. We went down to the park in our neighborhood to play which the kids loved. I'll leave you with some pictures of the kids since that's what everyone really cares about :)

I love this face! It's her sucking her breath in and going haaa...like she's surprised or something. It's so funny!





Kaela loves her stools. Here's one use for them...
And proof that she's not always so sweet :)