Jun 19, 2011

Father's Day 2011

Credit goes to my dear friend Lisa for giving me the inspiration and push to do this for Steve this year even though I really didn't have time. He IS a great dad. It takes a special man to parent a special child (+2). Thanks for all you do honey!

Jun 14, 2011

Nothing But Time

You know you've been at this special needs/medical complex kiddo thing too long when you no longer are annoyed beyond belief when you wait for 2 hours to see the doctor. Really though what's the point of getting upset? It wouldn't change anything other than making us more miserable. After its happened dozens of times you learn. So now we take it in good stride as "par for the course" as we play our favorite hospital game....."watch the clock".  Our appointment time: 12:45. Actual appointment time? 2:35.

Ainsley can be a rascal when she's overly tired, as the following pictures show. 

 Yes, she is drinking her lunch (while doing tricks). More about that another time.

 Getting bored (reallllly?!) she decided she wanted to crawl around the room. At the hospital this is ill-advised so we said no. So she then decided to get herself out of her stroller. I think that look says "Oh yeah?! Watch me."

 It's no easy effort for her.

And when she does stand the stroller and the suction machine go falling. We can't get that wheelchair soon enough. It's back from the shop but we are waiting on funding approval after their mistake of not getting the tie downs. Ridiculous is what it is. She is 42 pounds and 43.5" tall and far too big to ride in a Maclaren Volo. But hurray, she was able to get herself out by herself, another first!

She's so pleased with herself. And we are too. She's getting to be very independently minded.

Somehow she managed to stayed awake so the surgeon could see her eyes for the first time since the eyelid surgery.

Here you can kind of see that the hair of the brow is a bit lower than the actual brow bone (okay brow prosthetic). When she is relaxed and you lift the brow up a few millimeters it lines up nicely and her eyes appear more open.  You just have to love that smile, I just wish we could see her eyes when she smiles.

He didn't get the letter from the occuloplastic surgeon (it may be in his inbox) but is going to follow up with him to find out exactly what he has in mind because some styles of brow lifts (depending on how it's done/at what level) can make it harder to use the brow to lift the eyelid (not what we want). He wants to wait until it's been a year since her eyelid surgery so she is fully healed, so we are looking at December 2011 at the soonest but in the mean time they will discuss the best plan of action for her. They may determine that some other course of action would be better, such as a frontalis sling. Hopefully their plan will not involve waiting until she is a teenager.

Once again he said what an incredibly complex case Ainsley's is.  Though primarily she had sagittal craniosynostosis things were very much complicated by the absence of her greater sphenoid wings.  The fact that she has a weakness of the lid muscle in addition to the surgery that reshaped her forehead and replaced the sphenoid wings (It changed the shape of her eye orbits, her forehead shape, the position of the skin over the forehead, the position of the levator, the frontalis, the slant of her eyes as well as the possibility that there could be damage to the muscles from swelling.) makes it all rather difficult to sort out what the problem is and how to fix it, even for a highly experienced craniofacial surgeon and occuloplastic surgeon.  Luckily I had my handy photos with me to show him the progression again and he was able to see (among other things) that the brow implants that I'd suggested did in fact help her which goes to illustrate that what he would typical expect to see is not necessarily the case with Ainsley. A picture being worth a thousand words and all that I think it's always better for them to rely on images rather than their memory of how she's looked along the way.

As for her head shape: He said that unless she develops vomiting, headaches and other signs of intracranial pressure they would not operate.  So that's good. It is typical that the shape changes over time and wants to return to it's original shape and since her head size is almost mature it will most likely be okay. I was a bit concerned about the sudden change. So this was reassuring.

All this means that we will likely get through the summer without a surgery and that would be nice. I don't know about you but I am looking forward to summer!!!! Ainsley's last day of school is Friday. Evie & Adrian's is next Wednesday.  If only we could get some sun.

Jun 9, 2011

Looking Different

*This is the post I was drafting when the news of my friend Karin's passing came.  She will be terribly missed.
Having a child with craniofacial differences is hard. People don't mean to but they judge. There is an assumption that people who look different are different. Even having a child who looks different, I have to fight against the human instinct to judge by appearance in the privacy of my own mind where no one else hears my thoughts. Such as......

Last week I went on a field trip with Ainsley's classmates, many of whom have special needs. I know and love my child in a way that others do not, simply because I am her mother. I know her life has worth, purpose and meaning. I also know that every mom out there feels the same way. And it's true. All life is precious and holds value.

I found it interesting to see reactions of these other special needs moms to my own child, who has a trach, feeding tube, is non-verbal and not walking. And from our conversations my impression was that some of them felt their own child was better off. In case you haven't met her, Ainsley is a happy child. She is a joy to be around. I can't tell you how many therapists, doctors, nurses, school workers and the like have told me how much they enjoy her. She has been through so much but she has such love for life in spite of it all. Other children may be more physically able but Ainsley's spirit shines. If I had to choose I would choose that. But as I thought about it I realize that too is a judgement. My child is no better or worse than another. More importantly there is no need to compare. We are each unique and valuable, with strengths and weaknesses. In case it's not clear I'm not just talking about those with "special needs".

And yet. Ainsley's life is not made easier by the fact that she looks different. I know that people assume things about her because of what they see.

Did you know this is what my baby looked like when she was 9 months old?

When people notice Ainsley's eyes they do not consider that her eyes look the way they do because of surgical results. Sometimes I feel like I have a hard time even getting the surgeons to acknowledge that fact and have come to appointments armed with photographic evidence. So it was with dread that I set out to her appointment on 6/1 with the occuloplastic surgeon to discuss the 6 months post surgery results. Even though it's been that long I still feel a stab in the gut when I look at her eyes and see how much of her lids were unexpectedly cut away, about 4-5mm of her upper and lower lashes. Although the surgeon didn't forewarn us that he would being doing that (beyond the scope of what we consented to) I understood the logic of his reasons why he felt it had to be done in the moment. I hate it, but understand it. And if I can find a positive it is that Ainsley has such thick beautiful lashes that I suppose only I will notice all those that are now forever gone. Somehow I was able to put on a semi-friendly face and voice my opinions and what I wanted done in a quiet factual manner and most surprisingly the surgeon agreed with me. I was shocked. Steve and I left looking at each other in disbelief that it could have gone that easily.

For several years I have said that I believe her brows are too low as a result of her 2nd craniofacial surgery because of how much bone was moved around. That is one of the reasons why they did brow implants in 2010. It helped a little, but the implants don't extend far enough toward the ears to lift the area that needed it most. The surgeon agreed that the eyebrow (hair) is in fact below the brow(bone). He is going to write a letter to the craniofacial surgeon recommending a brow lift. In addition one of Ainsley's eyes was stitched together tighter than the other and it has created a little pinching at the corner causing the eyelashes to turn in on each other and that eye looks a little smaller than the other. Though the surgeon offered electrolysis I really don't want her to loose another s-i-n-g-l-e lash, so he good-naturedly agreed to slit the corner during the brow lift (if we do it) to release those lashes.

In a stroke of extremely good fortune I was able to snag a canceled appointment for June 13th (Monday) which means not waiting months. The real reason for the appointment was that I've noticed Ainsley's head shape changing, and there is a risk that the bone that was previously fused, though operated on, will not allow proper long term growth.  Also, I think they would want to see the eyelid surgery results. Now we have the brow lift to discuss as well. Monday we could be discussing surgical plans for this summer. After what we've been through I am nervous. Plastic surgery carries risk and results are not guaranteed. You certainly don't get to pre-view the results. I'm so afraid another surgery could "make things worse" but at the same time I am not satisfied with the current results so if the craniofacial surgeon wants to do the brow lift we probably will.  I hope she doesn't need another reconstruction on top of that. Having your child's skull removed and cut into pieces and rearranged like a jigsaw puzzle is not fun.

We have a busy weekend coming up, a new speaking valve and ortho surgery follow-up tomorrow, a poker game, a baseball game, a family graduation, a ballet recital. I'm tired just thinking about it but will try update early next week to let you know what happened. I hope you all have a more relaxing weekend than I will.

Jun 2, 2011

True Friends

I was taking a sick day, writing a blog post from bed when I got the bad news, so that post will have to wait. A friend called with bad news about another friend.

In the years since Ainsley's birth I could not get by without the support of my friends on the Tracheostomy.com  support forum. The support it provides is a lifeline. Literally. Those who don't need that kind of support may not be able to understand it. These people are there through surgeries, medical testing, the hard times as well as to share the silly passings of everyday.  Some of these people are truly my friends even though I've never met them face to face. They are the ones who I know really care about me and my family.

At times during this journey I have questioned who my true friends are. There are a lot of things we think that a friend should do or be. A friend may not always deliver. Does this mean they are not a true friend? The subject of what makes a friend also came up this week as Evie is missing her old friends and trying to make new friends since our recent move. Can a friend be a friend if you don't see them as often, what if you never met them, what if you had a fight and miss them but haven't talked to them? There are so many ways that friendships vary. After giving it a lot of thought and today's events I think a friend is someone who knows our faults but loves us anyway. It's as simple as that.

Yesterday I was congratulating my friend Karin, from the trach forum, on the birth of her second son. After years of having a child with medical issues she deserved for things to be easy. Unfortunately she suffered an amniotic fluid embolism in the night and is not expected to live. Even though I never met her face to face I consider her a true friend and am devastated. Life can deal the unexpected. Tell your friends what they mean to you.

*Updated to say that Karin passed peacefully later that day. Here is the link to her obituary. If you feel inclinded please donate funds to her boys college fund at any Bank of America with the names Alex and Bryce Kincaid (father Mark Kincaid). On top of the cold virus I already had Ainsley picked up a super nasty stomach virus at the zoo and it's making it's way through our family. If I haven't yet contacted you to tell you that I love you, please know that I do.