Sunday, May 4, 2008

Clinic appointment

On Wednesday Madeleine has a clinic appointment at Children's Hospital. Clinic days are very special and make Childrens great. This is where families with children who have similar issues (in this case a 'limb difference') all have appointments on the same day. The whole team does rounds and the families have the chance to ask questions, meet the surgeon, physical therapist, occupational therapist, prosthetist etc. It is nice to have all bodies present at the same time.


But, the really best thing about clinic is meeting other families. Seriously, when you feel like your kid is the only one inflicted with this 'terrible' issue it is nice to see some other families and giving the problems some normalcy.

Our first clinic was when Madeleine was 5 months old. This is where we met Ava, a four or five year old beautiful little girl with blonde pig-tails. Ava also has fibular hemimelia and Ava walked into our room holding a purse and wearing a tutu-like skirt with her Nikes. I had a hard time talking to her because I had been crying so hard earlier and was still feeling very sad. It was on this day that Michael and I made our choice to amputate. Ava's mother explained to her that this little baby named Madeleine is going to have the same surgery as she did and would have a helper leg too. She explained to her that her leg and foot looked just like Madeleine's when she was a baby. Ava rubbed Madeleine's leg and whispered the sweetest "wow" I had ever heard.

Michael and I will always remember Ava and her mother. She has no idea how much she helped us during such a low time in our life.

We also met a little boy named Michael. He had lovely blonde curls and was interested in doing everything very very fast. We didn't talk with him too much but watched this child run, jump, toss the ball with Dr. Mosca, everything a five year old boy does.

We met my good friend Jenna at a function similar. Although Logan has a different situation than Madeleine they are more alike than different. Jenna and I have formed a lasting friendship she is the only other mother I know who deals with a child with an amputation. Logan is Madeleine's only friend who has a leggie like her. Special indeed. Check out our recent playdate here.

So now it is our turn. We are going to a clinic appointment. We will meet Dr. Mosca again for an exam. He will look at Madeleine's leg and tell us she is fine. He will assess the 'valgusness' of her knee and estimate our next surgery. We will see Greg and he will watch her walk. I will say hi to Cathy (the physical therapist) and Sharon (the occupational therapist). This is all important in Madeleine's care. But what I am most anticipating is meeting other families who have children in this situation. Maybe we can show them some normalcy. Maybe they will feel better when they see our beautiful and capable little girl. Boy, Children's is sure smart is creating 'clinic'. Let families help families since we are the experts, are we not?

3 comments:

Jenna said...

Very beautiful post Niki! I love clinic too and feel so thankful we met and have each other, a friendship where there isn't any mis-understanding, one where we totally "get" what eachother are saying and how we are so amazed at all our children can do. And yes, a friendship where we can be sad from time to time and thats ok!
Thanks for being my friend and always listening and validating what I am(or should I say we are)going through

Katie said...

I have to say I am jealous of your clinic days. I have never met another kid with a prosthetic leg. I have a friend my age who has fibular hemimelia and wears a prosthesis, but no kids. I love asking an adult what it's like, but I'd love even more for Reid to have a friend to relate to. Not to mention, being the mother of a kid with a prosthetic leg brings a different kind of struggle. I can't relate to my friend on this...I'd relate better to her mother. Clinics are brilliant!

My husband worked in the animal science field for several years before going back for a PhD in something completely unrelated. He was involved in several horse amputations. It gave him an entirely different perspective when we had a kid who needed an amputation. He knew so much about the medical side of it. I've never seen anything like that prosthetic leg for a horse though. Very cool.

Chef Jef said...

I've told that story over and over to my friends and family about you guys meeting Ava and her family. That was the story that Mikey told me that really helped me feel some understanding about how you both have so much on your plate with Madeleine that it had to be amazing to see children happy and playing. love to all!
Jef