Let's go to Holland!

My sister in law sent this to me and it really hit home. I needed to read this especially today. I've been so down, sad and scared but I'm ready to go 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.

 

Hope and Faith

Yesterday Aiden had his 6 month follow up with his neurologist. We didn't get the best news but it could be worse. Six months ago they did some genetic testing and when we got there yesterday they told us they had come back abnormal. They explained to us that he had an extra 7 chromosome which in medical terms is duplication 7Q36.3. You know that one! 

At this point they couldn't really tell us much about it but said they will be referring is to weiskopf genetic for further testing and follow up. (This will make 8 doctors Aiden sees) Hopefully there  they will give us more answers we are looking for or at least better explanation. They did say most treatment is just a lot of therapy which we are already doing and would like to start PT again soon since he still shows signs of very low tone  and low upper body strength. The doctor was very pleased with how well Aiden has progressed over the last year. She explained that some children with genetic disorders can regress and to keep a close eye on this. Hopefully with the amount of therapy he gets this won't happen. 

They also want Ava tested since she is already showing signs and encouraged Ryan and I to get tested if we wanted more children. Since we don't, we decided not to be tested. 

It's difficult as a parent to hear your child has a genetic disorder and to think both kids could poosbily have this. I've been blaming myself which I know I shouldn't. I've found comfort in knowing other parents are going through the same thing we are. There is one particular person who has really helped me through all of this and I couldn't thank her enough. She is also a parent of a child with a genetic disorder. We weren't friends before all of this but she has helped answer so many questions and has really been a great support. I can't imagine what her and her family face everyday but she is such an inspiration to me. It's so hard to get services started and she really seems to know the system! 

For now we put our faith in Gods hands. Ryan told me last night God has great plans for us and I truley believe that. 

Go baby go!

Happy Derby Day!! 

We spent our day at keeneland with wonderful friends. Aiden spent the day at his Mimi's. 

Ava slept while the band played. She did so well and didn't cry (or choke for that matter) once!! 

Lucky number 70

Aiden is now up to 70 words. It actually could be more, this is just how many we can come up with. We are so proud and amazed at his progress. It's like this light clicked and he started talking more. It's amazing what a little (or a lot) of speech therapy can do. I'm such a fan of early intervention and so glad he is getting the services he needs. 

He can actually carry on a conversation with you. It's so fantastic! Keep on Aiden we know you can do it!!! 

Why?

Tonight I have no pictures.  It's just me and the computer. This is a space for me to document my kids life and where family that lives out of town can keep up with our happenings. It's also a space for me to vent and sometimes I just need to do that. 

Ava went to her 6 month check up on Tuesday. After voicing my concern about Ava's choking episodes to our pediatrician she referred us to a speech pathologist. I had no idea speech paths delt with feeding, gagging and reflux issues. I would have never in a million years have guessed that. Any way that's where we went today, for her eval.  I'm very used to evals and have sat through many with aiden so I kind of had an idea how this was going to go. I explained her situation and why we were there (which I'll have to do a thousand more times when she is referred to someone else or another agency). They watched her eat and swallow and as she was eating  she had a choking episode. Now I'm never happy that these happen but I was glad it happened there so she could see what I was talking about. She immediately said she needed to be refered to kosiars to have a swallow study done ASAP and would get a hold of our pediatrician to get those orders in. She said she didn't want to scare me (ok everything scares me these days) but she thinks she may have silent aspiration and if it goes untreated could get into her lungs and cause all sorts of other problems. Not really what I wanted to hear but glad we were going to hopefully get some answers. So next week we will be making our way to kosiars to have this study done. 

She also thinks it would be a good idea to go on and get her referred to first steps for additional therapy. She will need therapy for help with feeding and also a PT eval for possible low tone (like Aiden has) in her legs. She still isn't putting weight down and this has her concerned since aiden has the same issues. So first steps here we come again!! 

I feel like my (and my kids) life revolves around therapy. I have pretty much cried all night. I'm scared. I'm scared as to what is to come. Will we get answers? Will she need surgery or can it be controlled with therapy? Are we going to go down the same path we have with Aiden?

Then I cry because I wonder why me? Why my kids? Did I do something wrong. Is God punishing me for something I did? I really don't know what God has in store for us but I'm hoping we find answers soon. Not only for Ava but for Aiden also. It's hard when your children are sick and they don't know what's wrong. But we will get through this like we have everything else. We will just take one day at a time and pray. I guess that's all we can do right now. So tonight please say a little prayer for Ava and Aiden. 

Goodnight. 

One year ago

One year ago this week Aiden was admitted to the hospital. Although we still don't have all the answers we are thankful he is now walking and starting to talk. We continue therapy three times a week and still have a long road a head of us but Aiden is doing great!

 

 

28 months

I feel like I'm always writing about Ava's monthly milestones so today I thought I would write about Aiden! 

You are 28 months. Wow time flies when your having fun!!

You are so much fun these days. Well let's say most days! Ha! Some days you do like to test your limits. 

1. You love to be outside. In fact you cry at night when we make you come inside. 

2. You adore all animals. 

3.  In fact I think you need to live on a farm. Too bad mommy hates the country.

 

4. You are a dare devil and nothing scares you. This scares mommy! 

5.  You are starting to talk more. You are probably up to around 50-60 words. I haven't been keeping track as often now that your talking more. 

6. You are in a swim class on Tuesdays. You love the water especially the slide. 

7.  You are obsessed with tractors. You wake up talking about tractors and you go to bed talking about tractors. 

8. You love your riding tractor. To my surprise you share it well with your friends. 

9.  Last Tuesday you put yourself in time out. It was hilarious. 

10. You are a daddy's boy. If daddy is around everyone else is chopped liver. 

11. Daddy has to give you a bath every night. If I come in the room you tell me to leave. 

12. The only other person who tops daddy is poppy. You love your poppy. 

13.  You have been in therapy for one year next month. In that year you have accomplished so much and we are so proud of you. 

14. You don't mind going to the doctor. In fact last time we went you put your arm on the table expecting them to draw blood. Looks like you are used to testing.

 

15.  You hate to brush your teeth. What do I do about this? 

16. You love to FaceTime. We like to face time aunt GiGi (Angie) and Aunt boo boo (Sarah) at least three times a week. That way they can still see you grow up even if it is over the phone. 

17. You love the beach and can't wait to take you back in august. 

18. You love all your friends especially Bryleigh. You say her name all day long. And you two really get along well. 

19. You are starting to watch a little tv. Not much and in fact I wish you would so I could get some things done. Ha!

20. Your favorite right now is Mickey Mouse clubhouse and polar express. 

21.  You also love trains. It's so cute. You can spot a train, tractor and lawn mower from far away. 

22.  When you see a train you yell "choo choo" I love it! 

23.  You love all fruits 

24. You aren't big on veggies. It's very hard to get you to eat them. 

25. You also aren't a big meat eater. But you def love carbs! 

26. You adore Ava and it's so cute. 

27. You have to kiss her good night every single night. 

28. You have such and big heart 

Aiden mommy and daddy love you so much. 

 

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