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Geplaatst: vr sep 09, 2005 9:41 am
door agamarcel

Unfortunately I can't speak Dutch, but I hope someone can reply in english.
My name is Aga, I'm 29 and I'm a mom to a 3 weeks old Sebastian who was born with achondroplasia.
My husband is Dutch and we live in Sweden.
The news about Sebastian's condition was a real shock to me although they suspected that this might be the diagnose already after the ultrasound when I was 34 weeks pregnant.
I slowly have accepted the fact that our baby will always be "different" than the other children but it is still difficult sometimes when I think about his future - will he have health problems?? And how is he going to manage when he goes to school?
I know that the intelligence of achondroplastic children is no worse than "normal" kids, but what about their physical development? How old were your children when the could sit/go for the first time? What are the most common practical problems they face every day?

Geplaatst: vr sep 09, 2005 9:56 pm
door wendy
Dear Aga,

First of all, i'd like to congratulate you and Marcel with the birth of Sebastian. :D

I understand your worries so very well, they're the same as mine, about 2 years ago...
It might be comforting to know that the children who have achondroplasia and have complications, are exceptions. Most of the kids I know are doïng very well, and even if they have a compication, it's nothing the doktors can't help them with.
There's so much information on the Internet, and if you read the list of complications that your achondroplastic child could get, you won't get any happier. Somebody once said there's also a list of complications that you could get from the flu, if you know what I mean. The most commen problem for "AP" kids is the earinfections, and a mother here on the forum (Astrid) told us that it's very good to use a nasal spray (salt solution) to prevent an earinfection, as soon as you notice Sebastian has a cold.

As far as I know, AP kids manage very well at a normal school, again here, the kids that have to go to a special school are exceptional.

The average age to sit alone is 1 year old, and to walk is 2 years old. Myrthe could sit alone at 1 y old, and walk at 20 months.
This is a very usefull link, it's a Health Supervision for Children With Achondroplasia.

That's it for now...I'm going to bed.
I hope you've had some answers, and hope to see you back at this forum. I think there are other parents who write English also.

Geplaatst: ma sep 12, 2005 2:56 pm
door agamarcel
First of all, thank you Wendy for your reply. Marcel translated the emails you sent, so I already knew a little bit about your situation. It'sjust a pity I don't understand Dutch so well so that I can read this Forum and get to know other parents and their problems better.
But well, I hope I can get some support here anyway. It feels good to be able to talk to people who do understand my situation.

May I ask, how you found out that Myrthe had AP? How did you feel then? I cried many tears before I could look at my little son without thinking only about his condition.
And the only thought I had, was "why is it us??" I think now, after a few weeks I can be more brave and face the problem without thinking about the down side only.
I have found a beautiful story on the Internet - it is exactly how I felt too.
It's here if you want to read it.
Apart from that your daughter could sit and walk later than other children her age, did you notice other differences in her development?
How do other children react when they see Myrthe?
I have many more questions, I hope you and other parents here can help me get the answers.
Btw, I noticed that your daughter was born on the 19th of August - Sebastian's birthday is on the 18.08..2 years later :)

hugs to you and your family.

Geplaatst: di sep 13, 2005 7:54 am
door vera
Hai Aga and Marcel...en Sebastian ofcourse....

Pff, my English isn't that good as Wendy's, but hey...I can try!

First, congratulations with your beautiful babyboy. He looks adorable!

The feelings you describe are just like mine a year ago. At first every time I looked at Anouk, my heart broke. I felt so sad for her; why did this perfect, sweet, amazing little girl had to have achondroplasia? After a while, those feelings changed. I enjoyed my daughter but still once a day there was this sting, that painfull moment of realisation. And now a year hass passed, and most of the time I'm just totally filled with pride when I look at that wonderfull girl. But still, sometimes, there is that fear. The fear of the future, a future that might bring some hard times for my daughter. But I think every parent has those feelings.

To my knowledge children with achondroplasia develope in there own speed, but just a little slower than "average size"children. Anouk learned to sit when she was one year old (just a few weeks ago), but a few moths ago she learned to stand and walk with support. Only walking alone, that's not going to happen sometime soon, I think! But I don't really care, I let her take her time, don't speed her up. She will develope in her own way en time, and so will Sebastian.

When other children see Anouk, they don't see anything strange. They just say "hey look, a baby!" and in a way she still is. She's just a one-year-old, a small one-year-old. Besides that, she doesn't look strange or weird or so. Not at all, she's just a little smaller (but that makes her even more cute.... :D ).

Well, thats enough Englisch for one day. Hug your son from us! He's something special, in more than one way!

Geplaatst: do sep 15, 2005 10:27 pm
door wendy
Dear Aga,

Just a quick note; you can read our story about Myrthe (and how we found out about AP) here
I'm sorry about this short message, i''l try to make it up to you soon! :oops:

Geplaatst: vr sep 16, 2005 10:16 am
door agamarcel
wendy schreef:Dear Aga,

Just a quick note; you can read our story about Myrthe (and how we found out about AP) here
I'm sorry about this short message, i''l try to make it up to you soon! :oops:

Thank you Wendy, I've read the story. I'm not sure whether it helped us to know before he was born that Sebastian might have AP. The shock was still there when the doctor told us the final diagnose. But slowly I'm forgetting about AP and just see a cute little boy.
How are you doing? Has the autumn reached Maastricht yet? I hope your kids are healthy - the season for colds will start soon :(

Geplaatst: ma sep 19, 2005 9:27 pm
door wendy

I always said I'm happy I did not know about Myrthe's achondroplasia when I was pregnant. I would've worried so much! I'm glad we already had her.

It's getting colder here now, brrrr, I like summer a lot better!

Myrthe is doing very well! She is going to get an adapted bike, and I'm really looking forward to it!! She loves bikes, and when she sees one, she wants to sit on it, but it's always too high for her, and she can't reach the grips nor the peddals.
The bike is subsidised (is that how you say it...?), and we don't have to pay anything.
I'll send you a picture of it, when it gets here :)

So how are things over there? Do you get a lot of support from your friends and family (altough they're living in other country's)?

Geplaatst: di sep 20, 2005 7:04 pm
door agamarcel
It's great news about the bike - Myrthe will be thrilled to be able to cycle finally :) I'm happy for her.
Yesterday I contacted another mother who lives nearby and who has a baby of 8 months who has AP. It's also her first child (a son) and both parents, like Marcel and myself, are tall. We're going to meet next week at my place. It feels good to be able to talk with someone who goes through a similar thing (I should work more on my Dutch to be able to read what you and other parents on that Forum write)
Today we had an appointment with a pediatrician. She said she would contact the specialist in AP (whom we have met before) and book a meeting with him for us. We would like them to check whether Sebastian's spine (in the top part) looks normal or, like with some children with Ap has the last "tag" shorter. Have you heard about that? How is it with Myrthe?
Also, the doctor said that Sebastian's head looks ok - yesterday the nurse at the nurse station said that his head grows too fast, so it was good to hear the oppposite from a doctor.
I feel preety tired today beacause Sebastian was awake a lot at night. Now he's sleeping and I have a headache. I think I should go to bed earlier tonight but it's a bit difficult as I would like to spend some time with Marcel when I don't have to breastfeed or change dipers.
time to go.
hope you have a good night!

Geplaatst: wo sep 28, 2005 9:16 pm
door wendy
Hi Aga,

I'm sorry I haven't answerd your message yet...I'll do that tommorow :oops:

Geplaatst: do sep 29, 2005 1:50 pm
door agamarcel
a question: do children with AP get their first teeth around 4-5 month, like the rest of kids?

Geplaatst: do sep 29, 2005 3:04 pm
door wendy
I think getting their first teeth is just the same as any other child...
A first tooth at 4 months is very early! Mostly it's around 6 months.

How are you guys doïng?
The weather here stinks :cry: it's raining all the time...bye bye summer...

Oops, have to go, the kids are fighting!!

Geplaatst: do sep 29, 2005 3:32 pm
door agamarcel
we're doing well, thank you for asking :) yesterday I met another mom who has a baby son of 8 months who has AP. It was so good to talk to someone who knows exactly how it feels and who has the same experiences.
The weather here is like autumn but we don't have rain. HAve to go now - Bas is awake :)
hugs to you !

Geplaatst: do sep 29, 2005 8:42 pm
door Astrid
Hi Aga,
Well, sometimes I am a little slow in noticing new messages on this forum, but now I read your story and I want to congratulate you as well with your very cute son. :D
I'll tell you about how I found out about Ianthe having AP. It was 5 days before she was born that an ultrasound was made and the doctor told us. Those 5 days we were day and night on the internet, especially to find pictures of babies, because I really was expecting a monster instead of a baby. Ofcourse this feeling went away after Ianthe had been born, but that is a horrable feeling. The first year of Ianthe's life I was actually angry with her, that she would choose me to be her mother and give me all those extra worries, but after I acknowledged that, that went away as well. And now I think she the most beautiful, sweetest etc.!
I could not help noticing that you found that story on a website that involves the word 'disability'. One important thing I noticed about adults with achondroplasia that I met are not seeing themselves as disabled. Only when they have to use a wheelchair or something, but as long as they can walk themselves and live by themselves without help, the do not feel that way. This thought helped me a lot.
And another thing is that here in the Netherlands doctors do not think that a child is slower in starting to walk until the second year or something. Actually Ianthe started walking with 17 months and her mother at 19 months :D .
Well, I think this is enough for now.
Hugs from Ianthe!

Geplaatst: zo okt 02, 2005 7:44 pm
door agamarcel
Hoi Astrid :)

You are right about the word "disability". I thought about it myself one time - it's weird to call my son "disabled" and the same reffers to most of the AP people. That was justa story, anyway.
One thing I'm most worried about- it's the difficulties with breathing. Honestly, I think sometimes not to know is better. During his sleep, Sebastian "snores" - it sounds as if he had a cold but he doesn't have a running nose...Sometimes he wakes up because of that. We go to see a doctor on Wednesday, I'm going to tell him/her about that. How was it with your children?

No matter how easy I try to be with this it is still scary, foreign and unknown..I wish he was bigger - maybe some of the worries would be gone. On the other hand, of those worries don't let me really enjoy this time now, I think. I'm scared, simply.

Sometimes I still ask - "why". When did you stop thinking like that?? :(
I think I'm just having a bad day today.

Geplaatst: zo okt 02, 2005 9:37 pm
door wendy
Dear Aga,

Myrthe also always snores, but it has never been a problem. Are you sure he wakes up because of the snoring? Because baby's do wake up often at night, my son Guy and Myrthe both did, untill they were about 4 months old or so.

I still wonder why often, don't think it will ever go away. It's so hard sometimes to see Myrthe with other children younger then her, and they're so much bigger. I have a lot of friends with young children, so I get confonted with this a lot. Maybe that's a good thing tough.
I remebember so well, how you feel right now... The older Myrthe gets, the more I'm in love with her, it really feels that way. And the older she gets, the more I cannot image her, not having "AP". She's so special, in more than one way. On some level I think her having AP has enrichend our lives, although if I had the choice, ofcourse, I would choose for her to be "normal".
I have met some really nice and interesting people, one of them is a young woman (24) who has AP. I met her (well, I haven't met her in person yet, but we email often) trough my website; she left a message in our guestbook, i'll copy it into this message for you, please ask Marcel to translate it for you:
Hoi Myrthe, Je kent me niet, daarom zal ik me eerst maar even voorstellen: Ik heet Desi en ben 23 jaar en heb ook achondroplasie. Ik ben 1.34m! Meisje, het enigste wat ik je wil zeggen is dat je moet genieten van het leven, van alle leuke dingen om je heen, alles positief inzien. Positief kijken naar de wereld om je heen heeft heel veel invloed op je verdere leven. Wanneer je met reacties van mensen in de toekomst niet goed om kunt gaan, want reacties krijg je altijd, probeer je je dan in te beelden dat je in haar/zijn huid zit..en ga dan na hoe jezelf zou reageren als je geconfronteerd wordt met een persoon als ons. En heb begrip voor hun reacties wordt er niet vel op! (echte rotte appels blijf je altijd houden, maar ook daar leer je mee om gaan!)Jij bent nu in een goede tijd mensen zijn veel opener, in vergelijking met een 10-tal jaar geleden. Meid, ik kijk met een heel goed gevoel op mijn jeugd terug en weet zeker dat jou ouders er ook voor zullen zorgen dat jij dat zal doen! Hebben je ouders ooit vragen aan mij dan sta ik daar uiteraard voor open! Meid geniet van je leven! En als je het er ooit moeilijk mee hebt, denk dan dat er altijd nog mensen zijn die het erger hebben als ons! Dikke kus Desi

I hope this message will help you out a bit, as it did for me.

You'll get trough this, you'll have your bad days. The first year is the hardest, then it'll get better!!!!

Lots of love, Wendy :D