Thursday, October 13, 2011


We noticed some strange puffiness around Kaela’s private area in recent weeks and decided to take her in to see the doctor today. It turns out she has a hernia and needs surgery to fix it. The first time we noticed this was a few weeks ago but it seemed to disappear so we thought maybe we were just imagining things or that it was just the way she was sitting. Her pediatrician confirmed it though and we are now waiting for a surgery date. Poor K already has so many surgeries ahead of her that we were a little dumbfounded that this came up. Fortunately she is not in any pain right now though the doctors said if she complains of pain in the area to bring her into the emergency room immediately. Sometimes I feel like Kaela has to carry all the health problems in our family on her tiny little back.

Saturday, October 1, 2011

October Is National Dwarfism Awareness Month!

Its October 1 and for those of you that didn’t know, today is the start of National Dwarfism Awareness month. Awareness of the many forms of dwarfism was reserved for October by the LPA (Little People of America). This is an annual chance to promote education and awareness of dwarfism which is often misunderstood. We would love to take this opportunity in honor of our daughter Kaela and the many people who are touched by dwarfism to talk about some interesting facts.

metatropic dysplasia

  • 80% of people born with dwarfism have parents, brothers and sisters of average height.
  • In 2009, the word “midget” was declared offensive. Alternative terms and phrases to describe a person with dwarfism are: having dwarfism, little person, LP, short stature or the medical terminology of the person’s type of dwarfism. Of course these terms and phrases are less preferable to just using a person’s name.
  • There are over 200 forms of dwarfism with the most common form being achondroplasia.
  • There are about 681,000 people worldwide living with some type of dwarfism.
  • The official organization that represents people with Dwarfism is the LPA which has 6500 members belonging to one of 70 active chapters in the United States.
For more information about dwarfism and National Dwarfism Awareness Month visit the LPA website.

Tuesday, September 27, 2011

Williams First Weeks of Kindergarten

This is a little late but better than not at all. Will’s first day as a kindergartner was a few weeks ago and he was super excited to start. He rode the bus for the first time with all of his neighborhood friends. Most of them are older than he is so he had some good guides on his first day. We enrolled him in the all day version of the program so he could get used to being at school for a long period of time during the day. Luckily he had some kids from his pre-school class as well as kids from sports activities that he has participated in there with him.

I really like the school system our kids are attending. I even went up to Will's school today and had lunch with him and his class. The administration there is very professional and accommodating.

Now that Will has been going for a few weeks we are seeing that he is learning a lot. He can write dozens of letters all on his own and loves practicing his penmanship. We were reading Green Eggs and Ham last night and he was reading entire sentences on some of the pages. We are just so proud of our little boy and all that he is accomplishing.

Monday, September 19, 2011

Today was the first day of the rest of Kaela’s life, it was her first day of pre-school. After all morning screaming and crying about how she did not want to go, she did a 180 and was super excited. Sarah and I were sort of apprehensive about the whole experience as Kaela needed some accommodations in the classroom and we weren’t sure how that was going to look. The school came through in a very big way though.

Kaela stands about 34 inches tall which is quite a bit shorter than the typical preschooler. Not to mention that her arms cannot go straight above her head. Hooks for coats in the class room were easily 4 feet off the ground, impossible for Kaela to get to without something to step on. The teachers screwed hooks into the wall about 24 inches off the ground for Kaela to hang her bag and coat.

Other areas in the classroom where Kaela may have needed help are the drinking fountain and the bathroom. While the drinking fountain could have waited, the bathroom was obviously an important item to address for her first day. This was also my favorite part for Kaela to see. The school had made custom stairs made of wood with a railing for Kaela to walk up to the toilet and also the sink all by herself, no help required. There was also adhesive non-slip material applied to the steps so that she, and other kids, wouldn’t slip and fall.

Overall I was very impressed with how the school stepped up and made these accommodations. We also got a chance to come in before class and try them out. I’m glad that we live in such a supportive community that is eager to help make Kaela’s school experience a good one.

Friday, September 16, 2011

Visitors To Kaela's Blog From Around The Globe

In the past month we have had 120 visits to Kaela's blog from 11 countries or territories. 98 of them have been from places within the U.S. alone. Great to see that people are finding the blog and getting info.

Analytics 20110815-20110914

Thursday, September 15, 2011

Kaela's First Appointment with Dr. M

Today was Kaela’s appointment with Dr. William Mackenzie at theNemours/Alfred I. duPont Hospital for Children. This was our first formal appointment with Dr. M. We have seen him twice before at regional and national LPA conventions where specialists like Dr. M donate their time to meet with families of children with dwarfism. Today Kaela had x-rays done and not too much has changed since the last time we had imaging done at the University of Michigan medical center. We did however get a more accurate picture of the next steps we should take and when we should take them.

We have long expected that Kaela would need another series of surgeries to correct the kyphoscoliosis in her back. The only things we were unclear about were when that would take place and what would trigger the decision to start doing it. Our doctors at the U of M have been wonderful and have already pulled off a successful Laminectomy and C-spine fusion on Kaela in February of 2009. Dr. M however has extensive experience with children with Metatropic dysplasia and has been perfecting a method for correcting curvature of the spine.

As of this appointment, Kaela could have her surgery when it is most convenient for our family and in the near future. The curvature in her spine has reached over 90 degrees which is about the point when these kids have the corrective procedure. The entire process takes at least two months so we will need to begin it during a time when Kaela will not be in school. We are thinking that next summer may be a good time to get it done which will be a good time for our family as well as good timing before her condition worsens to a point where she can’t get around as well.

Another great part of this trip is that we got to connect with other families that my wife and I have been in contact with over social media. We are very lucky to have these channels to connect with families who are going through the same experiences we are and that have children with such a rare condition. We met these families for the first time yesterday and it already felt like we knew them because of the relationship that was cultivated over the internet.

Overall we have had a very good experience here at the DuPont hospital. It was far better than I ever expected it to be. Dr. Mackenzie, Chris from hospital PR and Colleen, Dr. M’s nurse were all extremely accommodating. They even planned a pizza party in one of their conference rooms for all the MD families. Chris from PR contacted the local NBC affiliate to do a story on all the MD’s that were in one place at one time. Even though there were only 6, when there are only 90 sum cases in the world, 6 is a big deal. The local news couldn’t find a way to make it work although there may still be some stories in the works as well as something on the hospital’s social networking accounts. Dr. M and Colleen are pictured below with all the MD kids that attended.

Wednesday, September 14, 2011

Our first trip to Delaware

Sarah, the kids and I have begun our trip to Delaware to see Dr. M. We just finished driving about 5 hours and are somewhere in Pennsylvania. We decided to start looking for a hotel around 11 pm only to find out that at this time of year in this part of the country, finding a hotel room is next to impossible. The kids kept asking if we are at the hospital yet. After driving an extra 100 miles we found a pretty decent Hampton Inn with two rooms left. A bit pricey at 140 bucks a night but beggars can't be choosers.

Tomorrow we will make the final trip into Wilmington. We can't wait to see all of the families that we have been in contact with online over the past couple of years. It will be fun to meet face to face the people we have been chatting with online or talking with over skype. Better get to bed, its 2am in Pennsylvania and we have an early morning and 5 more hours of driving tomorrow.

Tuesday, June 14, 2011

New families and support for them

Ever since we've started the blog we have received quite a few emails from families who have a child who was diagnosed with Metatropic Dysplasia as well as people who have been diagnosed themselves. This is one reason I continue (even though it can be months at times) blogging.
I know when Kaela was born, almost four years ago (which I seriously can't believe!), there was really nothing out there. I called the main office for LPA and was immediately told they knew a family in California who had a son with MD. I was very excited since MD is so rare and there was really NOTHING helpful on line about it. The lady told me she would talk to the other family and soon after I was in touch with a wonderful family. I had a new baby, news I didn't know what to do with, fears I didn't know how to deal with and was just so lost and scared. Talking to this mom gave me so much hope. She has continued to be a huge support for me. I am still so greatful to have found her and so greatful to have her to go to when I have questions.
I want everyone who reads this who has just been given this diagnosis to know there is hope and a good possibility that things will end up being okay. I know there are different levels of severity with MD, but know there is hope regardless of the diagnosis. There are many of us out there that are here to help in any way we can. I've met so many wonderful people and families having had Kaela that I feel like my life was really opened to a new world of new and wonderful things. I know it's hard to see at first because we are so focused on all the scary things we read and hear about that it's hard to see the light at the end of this dark and scary tunnel, but I promise it is there. And there are many others who will agree with this.
As a parent we want our children to enter this world healthy and happy and we don't really worry about anything else, but sometimes we get news that changes this and makes us question things we never even though about. It makes us ask questions that there are no answers to and wonder things that we have no control over. I personally think this is okay and a normal part of the coping and grieving process. I know we all deal with things differently, and I'm the first to admit I didn't do well at all. I panicked when I found out (while pregnant) that Kaela had some form of dwarfism, went home and sobbed on my bed for a very long the point that I got sick. I was so sad and questioned what her future would be before I even met her! Then she was born which didn't go the way I had planned (home delivery, and NOT on purpose), so the bonding didn't happen instantly. We were taken to the hospital in an ambulance and Kaela was immediately taken to the NICU where she spent a few days, then was moved to a regular room for a few more days. I went home one day and wasn't sure I wanted to bring her home. I know this sounds horrible, and I don't tell people this usually because I don't want them to think I'm a horrible mother. I cried in my room and told Matt I don't want to bring her home. It wasn't because I didn't love her, but because I didn't know what was going to happen. I of course instantly looked on the internet after I was given the diagnosis, which was probably the worst thing to do. You're going to do it, no matter what I say, but it really isn't the best way to learn about your child. I spent more time with her at the hospital once she was moved to a new room and instantly fell in love. Nothing really mattered at that point. I couldn't leave her side again! I was still scared, I still cried and I still worried....but I knew she was mine and I had a job now that had a longer list than originally planned...but it was okay because she was beautiful and mine.
The first six months or so were the hardest because there were so many appointments, but things become routine. You get into and minus those extra appoitments, braces, learning what is good and not good, everything is the same. She had a big brother that loved her, she smiled just like my son had, she laughed, she cried, she ate....she was a baby, she was our baby....and we loved her...and we continue to love her. She didn't walk like every other kid and she talks about medical things that most kids her age have no idea about...but she's perfect!
You quickly learn that they are born with this, but it's in NO WAY who they are. They are our children, grandchildren,friends, sisters, brothers, nieces, nephews,neighbors..and they can and will do things you never thought they would do in ways you never knew someone could do them. They will amaze you, they will love you and they will be perfect regardless of the difficult things they may go through. They will teach you so much...including how to love more than you ever imagined you could love. Children do this in general I think...
Having gone through what we have in the last 4 years I can say we are a better family because of it. And not just Matt and I, but our son, our families and our opens our eyes to a new world of possibilities and a whole world of friendships we never would have had.
The families I've met through Kaela our like part of our family. They are there when we need them and they understand what we go through. You can find the Metatropic Dysplasia group on Facebook at: or search Metatropic Dysplasia around the world. It's been a wonderful resource and support group for so many families! The families and friends of families that are a part of this group are truly amazing people.
I just want families to know they are not alone and that it really will be okay. Kaela having this is just part of our life. We don't talk about it everyday, it doesn't change what we do. Kaela is a very happy, bossy, stubborn, loving, sweet, caring and determined little girl who will continue to make this world a better place, I'm sure of it!

Tuesday, May 31, 2011

family update

I owe all my friends, family and followers some updates. Our lives have seemed to be at full speed ahead the last several months, and I haven't made the time to update the blog the way I should have. I've received a few friendly reminders in the last few weeks too, so I better get to it :)

Most if not all of you know this already, but our baby boy is due in just a couple of months now. We are all so excited to meet him. William is so loving and already tells me how much he's going to help me with him. It's really quite sweet. He tells me when he's crying he will pick him up and hold him, help feed him and teach him things. I believe it too because he loves babies and he's just a very sweet kid. He really likes feeling the baby kick too. Kaela on the other hand does not want to waste any time putting her hand on my belly to feel the baby. She is very uninterested, but she says she's excited to help with the baby too. She said she'll feed him and teach him how to sleep. I told her I'm loving the idea of teaching him to sleep! She's my good sleeper too, so I am hoping she has some good tricks to teach him.

I'm starting to feel a little slower these days, so I'm really looking forward to the end of July when I will be induced. Everyone ask me why I'm being induced, or how I know this already, so in case you are wondering....I had Kaela on my bedroom floor and NOT on purpose. She is just very determined and was ready to enter the world, so she did....and not the way I would have liked to have had it happen. She was also about two weeks early, Will was a week early and quick for a first time labor, so to prevent any craziness this time, we are planning ahead. Lets hope it all works out the way it's supposed to this time (me in a hospital room being pumped with drugs).

William finished up pre school just last week. My oldest and sweetest little boy will be entering Kindergarten this fall and we are all so excited for him. He loved pre school so we are really looking forward to him starting Kindergarten and learning so much more! He's such a good kid and we are so proud of him. He starts Safety Town in a few weeks too which will be another fun and exciting thing for him to do.

Kaela is finishing up her first year of preschool this year. She has been in a program in the school this year where they've worked with her a lot to get her comfortable in the school, learning how to get around better on her own (walking, a lot with her walker), using the potty, learning to catch herself if she were to fall, etc. She has loved it and they have all loved her. Next year she will be moving up onto the pre school program Will was in this year and she's looking forward to making new friends there. It's me that is nervous :)
Kaela has had some recent issues with her spine and is scheduled to have an MRI to check things out in June. We are hoping for good news or we are going to have some big decisions to make regarding some major surgery. We know her spine/rod surgery is inevitable, we are just hoping we can wait as long as possible.
We saw Dr. Mackenzie from Dupont Children's Hospital in Delaware in April. He's very familiar with children with MD and we feel really lucky to have him to go to. We've made an initial visit to see him in mid September to see what he thinks of Kaela, her images, and to have a breathing test done. I've been a little emotional lately, which I'm really just blaming on my pregnancy hormones, but thinking about all this can be wearing. One of our friends with MD is having his surgery this summer and my heart really goes out to him and his family. His mother was the first person I ever spoke to after Kaela was born so she has been a huge support for me. I know this surgery is needed and will really help our children in the end, but it's still scary and draining just to think about. At least for me :) But we know he and all of our other friends, and Kaela of course, will all do great when they go through it! I'm so excited we will actually get to meet them this summer for the first time too!
Otherwise, Kaela and Will are doing great. They are so much fun and make us laugh all the time. I know Matt and I feel so lucky to have them both and really couldn't ask for better kids. We are so excited to add this little guy to our family. William and Kaela are such great friends and have so much fun together, it will be fun to see this little guy with the two of them.

Tuesday, January 11, 2011

Learning/Teaching Experience

This Friday Kaela and I have been invited by our very special friend, Haylee Seefeld, to visit her fifth grade class at Ann Arbor Christian School. They have been learning about different disabilities and would like us to come in to talk about Kaela and her form of dwarfism. Haylee is the daughter of my wonderful friend, Alisha, who also happens to live two doors down. They have been wonderful friends to us through a lot of our ups and downs with Kaela's health and we are so thankful to have such amazing people in our lives, so we are really excited to do this for Haylee and her class. Haylee and her class (including some of her friends we were lucky enough to meet this past summer) have prayed a lot for Kaela and we are so thankful for them. We know their prayers and well wishes have helped so much in her recovery from surgery and we are so excited to say thank you to all of them in person. I tell Alisha that I think our kids (hers and mine) are so lucky to be able to grow up around someone like Kaela who will teach us that the difference is only on the outside and I've seen it already. Haylee, being the awesome kid that she is, has sat and sketched out a plan for Kaela's future home where cupboards are lowered, microwaves pull out from a low spot, smaller vacuums, and so much more. She's ten and already has compassion and understanding for my three year old daughter that many adults do not have and for her, I'm forever grateful. Thanks Haylee for always including Kaela, for walking slowly so she can keep up with you and for helping her when she ask. We can't wait to show the rest of your class that although Kaela has some different needs both physically and medically and will be smaller than the rest of your classmates, she's just like any other kid. She has feelings, she has needs and she has dreams just like the rest of us. She's a person and deserves to be treated with respect and love just like any other person.

End of 2010

The last month of 2010 was a busy one for us, as I'm sure it was for many of you. I went to a conference for work at the end of November-beginning of December which happened to be in Florida right around the corner from Disneyworld! I went to my conference and Matt and the kids flew down later in the week to enjoy the the parks! It was a blast. The kids had a lot of fun and so did Matt and I. It was the kids and Matt's first time, so for me it was fun watching the excitment on all of their faces :)
William also turned five in December. I can not believe my baby boy is, well, not a baby anymore. Not even close. I can't believe that not only does five years go by THIS fast, but how much he has changed in those five years. I remember this fuzzy haired little boy sitting on the floor not even able to walk and now he is running, walking, skipping and thinks he is smarter than us sometimes. I am more than proud to be his mother. Although he is very much BOY, he still has his moments where he likes to cuddle and he has such a fun sense of humor. So happy he is growing into such a good little man. I'm going to take full advantage while I still can, because I'm sure there will be a point in my not too far future where cuddeling with mom is not what he wants to do.
Our Christmas was much more enjoyable than it was the year before for a couple of reasons. Last year, just a few days before Christmas, we found out that Kaela had spinal cord damage and would need surgery within weeks. We had to take her in immediatley to get a neck brace, so all of her Christmas pictures were of her in a neck brace. I'm okay with that, because it's part of our life, but we were no doubt so sad for her and scared. This year, being just a few weeks from the one year anniversary of her surgery, I am so thankful it was done and she's doing so well. It has been a long year of recovery in some ways with delays in walking, pain after surgery, and still not going on the potty, but she is one amazing little girl. Having gone through the surgery made all of us stronger and made us all appreciate what we have and even made us find good things within the surgery. The kids were also another year older and SO into Christmas. They were excted for weeks asking on a daily basis if Christmas was tomorrow. It was so much fun watching them.
We also met more MD families in 2010 and we are so thankful for all of our new and old friends. We are so thankful for all of our friends and family, both near and far, those we've met and haven't met. You have all added something to our lives and we look forward to our continued friendships in 2011! It's going to be a good year.