Sunday, October 3, 2010

Our Recent (Eventful) Visit to Johns Hopkins

We had our follow up visits at JHU a few weeks ago and the trip went very well, outside of a few "incidents"...  My mom went with me this trip and Eric stayed home with Aiden and Emmi. It is hard for both of us to make the trip now.  Aiden has so much going on with school and it is hard to have someone else come and watch the kids for 3 days.  Eric had already met all the doctors that we were scheduled to see and we were anticipating that Max would not have any medical issues at this time.  We left on Sunday morning and Max was a champ on the ride.  It took about 8 hours total, with 2 stops.  We stopped in the afternoon at a rest area outside of Breezewood and had a picnic lunch on the grass in the shade.  Max was happy to be able to move around on the blanket and stretch his little legs!  We made it to the hotel around 6:30.  We got checked in and went to P.F. Chang's for dinner.  (This is where one of the unfortunate "incidents" happened...if you are a FB friend,  you have already gotten the highlights of this doozy!).  We were sitting at our table next to a couple that was probably in their 50's.  They were all interactive with Max in his high chair.  He was smiling and talking and just being a social butterfly!  The man asked "what is he, about 8 or 9 months?" and I said no, he's 14 months.  I think his wife shot him a look for that (for the record, that did not bother me in the least!).  So, after a while, the wife went to the rest room and we got to chatting with the man, who was super nice.  He told us that they were in town from New Jersey because his 19 year old son has autism with severe rage issues and was being hospitalized at the Kennedy behavioral sciences hospital there (don't remember the name of it).  We were chatting about that and I mentioned that we were actually in town to take Max to JH because he has achondroplasia.  The man seemed genuinely interested and then, his wife returned...  He told her that we were in town to go to JH and I explained to her about Max.  I often tell people, "Like Little People Big World", Max has what the mom and Zach have."  Most people are somewhat familiar with the show.  Well, this women then said..."Oh, you know, those people on TV are, how shall I say, hard to look at..........."  Yes, mouths a gaping at our table, as well as her husbands I think.  What the heck do you follow that comment with?  I was shocked!  Now, I think do not think she was saying that about Max at all, but she certainly insulted an awful lot of great people I know!  What a MORON!  So, after a little more awkwardness, they left....  My mom and I agreed that we didn't say anything to her about her rudeness because her husband had been so lovely.  Poor guy!  She was truly a twit!

Anyways, we had our appointment with Dr. Hoover- Fong (genetics) on Monday and she said he is doing great!!  He is about 50th percentile for height and weight for achondroplasia (the physicians assistant said if he stays on that percentile, he will be around 4 ft 4 in.  That is taller than we were anticipating.  I know a lot can change but, 1 inch can change a lot with how easy it is to interact in your environment.)  His head circumference is still quite small for achondroplasia (although it is at the very top of the charts for average height 14 month olds).  He is hitting all his developmental milestones on target for average height kids.  He will hopefully be walking by Halloween!  He is getting so close!  They were wonderful.  I think they would have sat and chatted with us all day if we wanted them to!  I was very pleased with the appointment!

We left the appointment and hopped in the car to visit our friends Sarah, Brian and Tessa who live in Annapolis.  (Tessa is 3 1/2 months older than Max and also and achon).  Well, this is the second EVENT of the trip!  We were driving down the freeway just about to leave the City of Baltimore when my mom said (about people who were standing up on the overpass) "those kids are throwing (and the second she said the word ) rocks!", we were covered in shards of glass!  They had hit my windshield with 2 rocks and left 2 major areas of cracks and splintered glass.  It was amazing how much glass was on the dash and all over us and into the back seats.  Max was rear facing in his car seat and had glass on his head, his clothes and his feet!! Luckily, he was asleep so he didn't try to pick any of it up.  Well, we had to pull over and 2 other cars pulled over too.  All in all, they had gotten 6 vehicles.  We ended up on the side of the freeway for a little over an hour waiting for the police (the County Police showed up and turfed it to the State Trooper who then turfed it to the City Police who just didn't bother to show up at all!).  The real kicker though was that the last few cars that got hit, were hit about 20-25 minutes after us!!!!  I don't think the police ever went up to that overpass to check things out!  Thank goodness there were not tragic outcomes that day, but there could have been.



On Tuesday morning, we saw Dr. Ain (ortho).  (Tessa also had an appointment that morning, so we go to visit again :-)  Max had x-rays done and he stood up like a big boy for them!  Dr. Ain said everything looks great at this point.  His kyphosis is mild, very flexible and goes away with standing and bearing weight.  His lower legs are as bowed as he would expect in a 14 month old achon.  He still doesn't recommend Max sitting for too long if his back is hunching over but, Max is so active, he rarely sits in one spot for long at all.  He will see us back in 6 months.  After that, we saw Dr. Ahn (neurosurgery) and he had no concerns about Max.  His head circumference is fine and he has no concerning neurologic signs.  :-)

So, we headed back to the hotel to gather up our stuff and to GET A NEW WINDSHIELD (!!) and we were on our way back home.  I made it home by about 9:30pm and was so excited to see Aiden, Emmi and Eric.  We will head back up there in 6 months.  By then, Max will be running!

Wednesday, August 25, 2010

First time sitting up in shopping cart!!

Yesterday was the first day that Max sat up in the shopping cart.  He is still in his infant carrier and I usually just put that in the basket, but I figured I would try this out now that he is a pro at sitting up.  He loved it, but he was a little rascal!  He was eating banana skins, licking the cantaloupe and throwing things out of the cart...  Then, he figured out that he could STAND UP with the belt still on.  Because his legs are short and don't hang down, it is easy for him to just pull them up and stand up!  But, he was adorable as usual :-)



Tuesday, July 27, 2010

Thursday, July 22, 2010

WELCOME TO HOLLAND

WELCOME TO HOLLAND


by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved



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.

I LOVE THIS POEM.  IT IS SO TRUE.  'HOLLAND' IS A WONDERFUL PLACE TO BE AND I AM SO BLESSED TO BE HERE!

Pictures from Max's Birthday




PRESENTS!!!
Look at me!  It's my Birthday!!
Mmmmmmmmm!  CAKE!!
Celebrating with Max

Wednesday, July 21, 2010

Max's First Birthday

Well, today is the day that, one year ago, my life was changed forever.  Max came into our lives and, for the first 10 hours of his life, things were wonderful and I think our lives would have gone on as it had before, with the addition of one more bundle of joy to love.  But things abruptly changed at 2pm on his birthday when the doctor said she suspected Max to have a form of dwarfism.  I look back today on all the emotions I had at that moment and for the weeks that followed.

My first emotion was disbelief.  Dwarfism???  Dwarfism???  What does this mean?  I couldn't even wrap my mind around the word Dwarf...  I had given birth to a "dwarf baby."  In my whole life, I had never even met a dwarf/little person and I had just given birth to one?  Then I felt fear.  The doctor told me that he would have a higher risk of SIDS because of the risk of spinal cord compression.  He had an MRI and a sleep study before he was even 6 weeks old.  There were appointments with genetics and neurologists and lost of scary "what if's" before we had the final diagnosis of achondroplasia.  I even felt sad.  How would the world react to my dwarf son?   Would he be made fun of and ridiculed?  I even thought out as far as high school dances and dating.  I cried for things that could happen and things that had never happened and that wouldn't happen for years to come.  It was a very difficult time for me, the most difficult time in my life.  I prayed for the strength to make it through those difficult days and I truly believe I was not alone.  I often think of the poem "Footprints" and I am certain that, after Max was born, there was only one set of footprints in the sand.  There were complete strangers that, looking back, had undoubtedly crossed my path by the grace of God.  Like the poem, "Welcome to Holland," I truly grieved the loss of what I had expected life to be like when Max was born.

But the biggest emotion I felt was LOVE!  I LOVED this little baby of mine SO MUCH, no matter how long his arms and legs were.  He was PERFECT in my eyes and he was truly just exactly the way God intended him to be and HE WAS MINE!!!

My life has changed so much since the birth of my little Max.  I have met so many wonderful people and have become part of a wonderful community of people through the LPA.  I have made friendships that I know will last a lifetime and have been introduced to some amazing people who just happen to be short statured.  I have watched Max grow month after month and do things that just amaze me!  He is so determined and nothing holds him down.  If he wants to get to something, he just figures out how to get it.  He does some things very differently from the way Aiden and Emmi did it and it makes me so proud!  He is angelic and delightful and he makes me smile every day.  Aiden and Emmi love Max so much!!  Aiden is so proud that his brother is so unique and tells everyone his brother is a little person.  I think of Max and my heart swells with love and pride!  I embrace his uniqueness and look forward to watching him grow up and do all the things that he wants to do.  I have had such a great support group of other parents who have assured me that, for the most part, everything will be great!

So, here is the update on what Max is doing now.  He is pulling up on EVERYTHING and wants to check everything out.  His favorite spots are standing at the sliding glass doors and looking outside and standing holding on to the bottom step.  He crawls all over the house and he is FAST!  He is saying "hi," "mama," "dada," and "Aiden" (we are pretty sure!!  It sounds just like it!).  He is sitting up while holding onto his toys.  He smiles ALL DAY LONG!!  He has never been much of a giggler, but has been giggling a lot yesterday and today!  He loves grilled cheese, cheerios, toast, pancakes and, as of tonight. CAKE!  He still does not sleep through the night and gets up 1-3x every night to nurse...  I love the snuggle time and will miss it when he starts sleeping all night (but I am EXHAUSTED!!).  He still has no teeth!!!  I think the top 2 are getting close to popping through though!  He is growing and changing each and every day and I am loving watching him.

It has been a very busy year and my baby is growing up to quickly (as they all do!).  I look back on all the emotions that I had after he was born and feel almost silly that I worried so much about things.   I know that it was normal to feel all those things, but I had no idea that life would be as great as it is now.  I take the opportunity often to educate people, even complete strangers, about dwarfism.  (TLC and Discovery Health have really  helped a lot too!! :-)  ).

Today, as on the day Max was born, I shed some tears.  But today they were only tears of pure happiness and joy.  I love this little boy more than words can say!!
Max- July 21, 2009

HAPPY BIRTHDAY MAX!!!

All smiles!
"What you talkin' about?"
Looking very mischievous 
My Birthday Boy!!
Max's favorite pastime-Standing and looking outside.
I see you Max!!
Love those brown eyes!

Yummy!!

HAPPY BIRTHDAY TO MY AMAZING LITTLE BOY!!!!

We love you soooooo much Max!!!

Sunday, July 18, 2010

Emmi's new coat

Here is a cute picture of Emmi modeling her new winter coat. Hopefully, we will be able to take Emmi skiing this year. Aiden started a few years ago and absolutely loves snowboarding. I need lots more warm summer days though before I can even think about snow!!

Sitting up!

Max is just starting to sit up now. He sits while holding on to things and playing. He is so mobile now and just crawls from room to room stopping to play with things along the way. He loves to stand up at the sliding glass door and watch outside. I will try to catch a picture of him tomorrow doing it. He is so cute!!