Welcome to my blog!

Thank you for taking the time to stop by and visit! We hope to share with you our journey of raising a child with Achondroplasia, the most common type of dwarfism. If this is your first time here, please start by reading Caitlyn's Story. It will share the beginning of her life with you. Enjoy!

Tuesday, April 15, 2008

Modifications around our house...

Several months back Caitlyn noticed that her "average height" friends could turn on the light switchs all by themselves. She tried moving one of her stools over but still couldn't reach. I did some research online trying to find one that would reach far enough down - there was nothing out there. So I posted a question to my LPA friends on MySpace and had a mother message me back. Here is what she sent me:

"If you're particularly handy, you can even cobble one up yourself using a wooden dowel and some electrical shrink tubing, both of which you can find at your nearest hardware store. You can also use one of those plastic rods that control the slats of any standard mini-blind unit. All you have to do is find shrink tubing that's just big enough to fit over both your rod and the light switch. Fit the two pieces together and then apply heat with a hair dryer until the tubing is tight and the rod secure. Easy as pie. A complete home improvement project, done and finished in under two minutes--doesn't get better than that."


Here is the link to the website she found it on:
http://www.shakhammer.com/2007/04/light_switch_ex.html


Our newest piece of furniture is a step stool for the bathroom so Caty can get up to the sink and wash her hands and brush her teeth all by herself. Well about 75% by herself - we still keep an eye on her as she likes to also use the cabinet door to boost herself up to reach the faucet. We found this step stool (it's actually called the Pup Step Plus) at Bed Bath and Beyond. It's made her a little more independent.












My dad, being the handyman that he is built Caty a step stool for getting onto the couch. She's had this particular one since she was maybe 1 and half. She just literally flies up the stool to the couch. She calls it "Papa's stool"

Sunday, April 13, 2008

Caitlyn is 100%...........

POTTY TRAINED!!! She's in her 3rd night without wearing a diaper. What a relief it is to have her out of them. Our only problem is now, how to teach her to pull her panties down. As a little person having arms that just don't reach is causing some issues. Any of your other parents of little people have any suggestions?

For the longest time we had her potty on the ground, which my dad built a step stool for her to get onto the potty. It just wasn't tall enough for her to be able to sit herself down and scoot back. So we were always helping her. We finally moved the top of the potty to the actual toilet, because she would literally pee 15 times a day. We were tired of the whole emptying out process. We'll since she's become potty trained we moved her potty seat back to the floor and tried the step stool out again - still couldn't do it. So we just used one of her plastic ones and there was success. She is now able to get up there, do her business and be done. We have 2 issues to overcome though - 1)pulling the panties down by herself - I think she's going to be wearing A LOT of dresses now that the weather is warm so we only have one layer to work on getting down - and 2) she won't go in by herself and go. So we've got a few things to work on and hopefully soon enough she'll be going completely on her own. But I can't complain - it's wonderful to tell people that "my 3 year old is potty trained."

(these pictures were taken in Dec 2006 - when we first started
"trying out" the potty)

Friday, April 11, 2008

Rascal Flatts put on an AMAZING show last night


(The California Marine Corp)

The concert was incredible last night. The seats ended up being GREAT, 10 rows up from the floor!!! The radio station 101.9 The WOLF really came through for their listeners with such great seats. We even sat next to one of the DJ's - Susan Brown. Taylor Swift took the stage as the opening act and I really enjoyed her. And to think she's only 18 years old. She's pretty talented - she's written all of her songs herself. I really liked her performance. She got the signature foot stomping from the fans of Sacramento and it seems to really touch her. She really got the crowd going with her songs - "Teardrops On My Guitar" "Tim McGraw" "Pictures To Burn" "Our Song" and a few more.



But now onto the main guys - RASCAL FLATTS!! They put on an incredibly entertaining show. It was a sold out arena and so loud in there. They played so many great songs but skipped a few that I would like to have heard. I love their song Skin, however they didn't play it, bummer! I think my two favorite songs that they played were "My Wish" (which I video taped, but the quality wasn't very good) and "Bless The Broken Road." Gary, Jay and Joe Don played for about 2 hours and it was pure enjoyment! Because we were so close I got some AWESOME pictures and even a video. I had a wonderful time (THANK YOU Christine for bringing me and I thank your husband Ken for being in Paris). Enjoy the pics!
















Thursday, April 10, 2008

RASCAL FLATTS TONIGHT!!!

Scott plays on a Thursday night and Saturday morning tennis league and one of the ladies that plays, Christine, won ticket to go see Rascal Flatts tonight at Arco Arena. She called me yesterday to see if I would like to join her. I'm so excited as I have never seen them in concert before but have heard that they put on an AMAZING show. Taylor Swift is opening for them and I enjoy listening to her. Since these are radio tickets, they are either going to be REALLY GOOD seat or way up in the nosebleed section, but hey they are free! I'll let you know tomorrow how the show was.

Wednesday, April 9, 2008

Welcome To Holland


WELCOME TO HOLLAND

by Emily Perl Kingsley

 



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




Many people can relate to this story, not just me. There are so many things in life that we just cannot plan. Having a child who is different than their peers is life altering but none-the-less a beautiful life.

But being in Holland with Caitlyn is even more beautiful then I could have ever imagined. Life cannot get any better than this. And as long as we are together as a family we are willing to travel down every road Holland has to offer.

We still have a long journey ahead of us in Holland - one full of fear, anxiety and stress but the beauty of Holland is still there. The roads here will be bumpy and full of forks but we will manage to work our way through those obstacles. We will experience happy times and times we will forget we are in Holland; but reality always brings us back to the same place; the realization that we will always be in Holland.

Holland isn't bad...it's just different. On occasion Holland becomes even more beautiful when family and friends are there to share in our experience. Will we ever leave Holland? I don't know, I am not sure I want too.


The Hokey Pokey

Caitlyn discovered the Hokey Pokey at playgroup yesterday (thanks Crazy Tamie). We luckily have it on a cd and she insisted on doing it over and over and over again. So enjoy the silliness of and join along if you feel the need!

video

Monday, April 7, 2008

Why...Why...Why...

So yesterday Caitlyn started in with the why questions. For example - she and I went to Subway for dinner. We were sitting near the door which was open and the ceiling fans were running (we had really nice weather today). I was wearing shorts and my legs got cold so I started rubbing them. She asked "Mommy, why are your rubbing your legs?" And I answered "because they are cold." "Why are they cold?" "Because the door is open and the fans are blowing air." "Why is the door open?" "Because it's so nice out today." "Oh." And that was the end of it. I couldn't help but laugh. Sometimes she would ask me just one "why" question and then say "oh" other times we would go through 5 or 6 questions before the "oh" answer came. Another example, and this one is pretty funny - tonight she asked me to video tape her climbing up her step stool to turn the bathroom sink on. So I grabbed the camera and I got ready to tape her, then she asked me "why are you taping me?" I answered "because you asked me to." "Oh."

Here is a parenting link that talks about ASKING WHY

So it says that kids start in on this new adventure when they are around 3, and Caitlyn just turned 3 three weeks ago. Now when will it stop? Probably never with as inquisitive Caitlyn is.

Sunday, April 6, 2008

Caitlyn Singing

Lately Caitlyn has been doing a lot of singing. She'll sing just about anywhere - around the house, while we're driving or in her room when she's SUPPOSED to be going to sleep. I was able to get her to perform for the camera, ENJOY!

Here's Caty singing Baa Baa Black Sheep

video

Here's Caty singing the Itsy Bitsy Spider and the ABC's

video

Saturday, April 5, 2008

Caitlyn visits a Skeletal Dyplasia Clinic at the Kaiser Hospital in Oakland, Ca. This is an article that I recently wrote for our LPA Chapter's Newsletter....

"Caitlyn was born in March of 2005 and was diagnosed with Achondroplasia within an hour or so of being born. We met with a Geneticist while still in the hospital and two weeks later we had the pleasure of meeting Ericka Okenfuss, who then set us up with an appointment at the Clinic. So when Caitlyn was 3 months old we made our first visit. When we learned that we would be meeting with 8 different doctors we had all kinds of questions running through our minds... the main one being “what will this day bring?”

We arrived at the Clinic and when Caitlyn name was called we walked through the doors of uncertainty. She was weighed and measured (which she screamed through), then we were brought to our room. Outside the door there was a list of the different doctors coming to visit us on this day: Genetics, Orthopedics, Physical Therapist, Occupational Therapist, Neurologist, Head and Neck Surgeon, Nutritionist and finally a Social Worker. We wondered how long we were going to be there. We quickly learned the Clinic is run so incredibly well that one doctor would enter the room and as soon as they were done, another would follow. We were seen by the different specialists in about a 2 hour time span, however she cried the entire time. Once we were done with our visit we went back into the lobby where a small reception was set up. There is a Representative of LPA waiting to talk with parents if they are not yet involved in LPA. With Caitlyn only being 3 months old, we didn’t stick around long as she was LONG overdue for a nap. As our first experience, it was a little overwhelming; however we have become veterans of visiting the Clinic. Caitlyn has been seen several different times – this initial visit and again when she was 10 months, 18 months and lastly when she was 2 and a half. Or last visit to the Clinic was a totally different experience than any others. It was the first time she didn’t cry the entire time, which made the visit so much more enjoyable. She showed the doctors her vocabulary skills as well as her gross motor skills in which she decided that it was a fun game to throw a ball through the doorway into the hall, which my mom reluctantly went and got every time. I’m glad that the doctors thought it was “cute” – hey - whatever keeps her happy!

We’ll visit the Clinic in or around September/October 2008 as the doctors want to see her once a year. We always look forward to our visit as it is a reassurance that Caitlyn is progressing as she should be. We feel that the doctors have given Caitlyn the specialized care that she needs and we thank them graciously."

Caitlyn's Story



We found out during the summer of 2004 that we would be expecting our first child in March. The pregnancy followed the text book to the T. We learned at our 20 week ultrasound that we would be having a girl. We were so excited, as were my parents - my mom practically jumped on me while I was still laying on the table. All went well through the rest of the pregnancy.

My official due date was March 21st, which happened to be the Monday of Spring Break for my hubby, Scott. I woke up the morning of the 19th (which was Saturday) around 3:45 needing to use the bathroom. For those of you that have been pregnant, you know how often you have to go. So there was sitting on the toilet and all of a sudden my water broke. I swear I must have sat there for what seems like 5 minutes before I could actually get up without the fluid continuously flowing out. I woke Scott up and said "it's time" and he practically flew out of bed. We got dressed and grabbed out packed bag and made the drive to the hospital. Unfortunately the Kaiser nearest our house didn't have a Delivery Ward, so we had to drive to South Sacramento. Thankfully we were driving during the very early hours of the morning as it could have been a REALLY LONG drive with traffic. We called the hospital on the way so they would be ready for us. I also called my parents and asked if they felt like making an early morning drive. I'm sure that they were in the car within 30 minutes. We arrived, got brought into our room and things progressed from there. I got my epidural, which I had asked for as we walked in the door. The contractions started to slow a little so they gave me some pitocin to get them going again. I had been in labor for about 15 hours when I was told that I was dilated enough to start pushing. Well....I pushed and pushed and pushed!!! We were told that Caitlyn was face up instead of being face down as she should have been. The doctor mentioned doing the vacuum seal to help get her out, but after examining things, he said that that just wouldn't work. So after 3 hours of pushing, the doctor said that they needed to do a c-section. I was all for it, as I was totally wiped out. I don't know how some mom's can pull off 30+ hours of labor; they are amazing!

I was brought into the room and prepped for the c-section. Scott was allowed to come in and the doctors started. Caitlyn was born at 8:34 PM weighing in at 8 lbs 3 oz and measuring 18.5 inches. Scott went with the nurse to get Caitlyn cleaned up and the doctors went to work on stitching me up. Thinking back on the whole experience, I now remember the doctors asking me how tall I was. I thought to myself "what a funny question to be asking me" but didn't think anything of it. I was then brought to a recovery room, and joined by my mom. I have absolutely no idea how long I was in there, as I was pretty doped up from the c-section. My mom asked if I had seen Caitlyn yet and I said no. So she went to find out where she was. Scott came in with one of the nurses and she just came right out and said that they believed that Caitlyn was a dwarf. I didn't completely understand what she was telling me and especially in the state that I was in. She left the room and it started slowly sinking in. Of course I was crying as I had just been dealt this news and I hadn't even been able to hold my daughter yet. Caitlyn was finally brought in to me and I finally was able to hold her. Her beautiful face just looked back at me.

During our stay in the hospital (we were able to go home on Tuesday the 22nd) we went through an array of feeling as most parents do when they are dealt a different hand of cards than expected. We met with a Geneticist that confirmed the diagnosis through blood work and an xray, Achondroplasia. We set up another appointment with him which would be in 2 or so weeks. We learned that we would be meeting a Genetics Counselor named Ericka, who is a little person herself. We were discharged from the hospital and headed home. Once we were home our parenting skills just started falling into place. However the thought of Caitlyn being different crossed my mind more times a day than I could count. I kept asking "why us" and seemed to be crying most of the time. However the days went by and she just brought more and more joy to our lives. We passed the news along to family and friends and go such encouraging messages back from them - "Well, I can't think of a better mom. She will undoubtedly be loved." - "She's beautiful, Jaime, Achondroplasia or not." - "I know that it may be hard at some times but I also believe that God does not give you more than you can handle. I have found myself praying for you guys a lot, because I can only imaginge how heart wrenching it would be to find out that your child will have difficulty in some areas and aspects of life. But at the same time, she will bring so much joy to your lives." We've just taken one day at a time.

We met with Ericka when Caitlyn was about 2 weeks old . To be honest, Ericka was the first little person (LP) that we had ever met. Dwarfism does not run in our families . 80 % of LP's are born to average height parents, you can read more about Dwarfism here. Ericka set us up with a Skeletal Dysplasia Clinic that is run at Kaiser Hospital in Oakland, CA. We first visited the clinic when Caitlyn was 3 months old. Please click here to read about our Clinic experiences. We also joined Little People of America (LPA) around this same time. However we didn't attend our first even until she was about 6 months old. More to come on LPA events. Through Ericka I was able to meet a few other local LPA families. They have become people I feel that I can call if I have a question. Sometime during the first couple of months after Caitlyn was born I was searching around on Yahoo and came across a group called Parents of Little People (POLP). It has been such a great group to belong to - it's a place to post questions, read other parents stories, etc. One day while searching through the newest members I found a mom, Melisa, that lives about 20 minutes from us. Her son was also diagnosed with Achondroplasia. The greatest thing is that her son is only 6 weeks younger than Caitlyn. They will be friends for a long time!

This pretty much sums up the first few months of Caitlyn's life. There is so much more to tell, I hope that you will return to follow along with my blog.

Friday, April 4, 2008

Introducing us to you

My name is Jaime and I want to tell you a little bit about my family. My hubby (Scott) and I met while attending Chico State. We started dating in May of 1998. Scott graduated that same month with his BA in Liberal Studies and then started the credential program in August. He completed his year of student teaching in May of 1999 and there I was still going to school. I FINALLY graduated with my BA in Child Development in May of 2000. We both got hired by the same school district in Sacramento and made the move down from Chico to Rocklin in July of 2000. Scott started teaching 5th grade and I was teaching preschool. In August of 2002 we got married and honeymooned in Maui.

We bought our home on April of 2003 in Antelope, which is about 20 minutes from Sacramento. Work went on as usual and we became pregnant during the summer of 2004. Caitlyn arrived on March 19th of 2005. She just turned 3 years old. Where does the time go? So this tells you only a very small portion of our lives, much more to come.