Friday, July 29, 2011

Why Me?

After Peter’s birth, I began writing daily updates about his progress, the staff, our concerns, and his many visitors. It was started as a way to get information out to friends and family who wanted to stay informed. Basically it was a “blog” before blogs were even created. I kept up with “Pete’s Diary” during his entire 3 ½ month stay in NICU and also periodically after his discharge.

Fast forward ten years, and Peter is now reading the diary himself. He has been getting it out almost every day this summer and asks questions about things that I wrote. I love that he has it to read and that he is especially interested in understanding more about his complicated first months of life. For me, however, it’s difficult to revisit that time. I literally closed that book a long time ago, but how can I possibly explain that to him?

In an effort to help Peter (and myself), I have decided to read through the journal with him so that we can discuss it. Although he remains a happy and typical ten-year old boy on the surface, I see that he is not as lighthearted anymore. He possesses a deep sadness that I can’t possibly understand. Earlier this week Peter was crying, and he told me that he wished he could talk to God and ask why he was born with a craniofacial condition. My reply to him was that I wished he could too because I would also like the answer to that question. I told him how proud his Dad and I are of him and that we love him deeply and would trade places with him if we could. I also told him that although he has been given a lot to deal with in life, there are always people who have more. In our many visits to the hospital, we have seen kids with cancer, kids in wheelchairs, kids who are badly burned, and kids who are mentally impaired. I don’t fault Peter for the way he is feeling, and I will always be supportive and comforting when he needs a shoulder to cry on. I don’t, however, want him to drown in a puddle of self pity.

I’ve heard the many sayings that are repeated over and over to parents like me… “Everything happens for a reason,” “God doesn’t give you more than you can handle,” and “God gives special children to special parents.” I abandoned those beliefs long ago. If that is what gives you strength, I am not one to argue about it. As for me, the following has stuck with me through the years and helped me cope…

“Can you accept the idea that some things happen for no reason?

That there is randomness in the universe?”

This was written by Harold S. Kushner who is a Rabbi and was a parent of a child who died from a complicated disease. He is also the author of many books, including one entitled “When Bad Things Happen to Good People.” I’m sure Kushner’s quote is one that I will someday share and discuss with Peter. I know that eventually though, Peter will have to form his own opinion of why life dealt him such a difficult hand. As his Mom, I really look forward to the day he enlightens me with it.

Monday, July 25, 2011

Product GIVEAWAY: See Kai Run

The wonderful folks at See Kai Run have agreed to donate a pair of their awesome shoes to one lucky CCA Kids Blog reader.

These shoes are great for a variety of reasons. My little guy Aiden (now 3) has Apert Syndrome and this particular brand fits his foot quite well. It has a very flexible sole, opens up enough to fit his uniquely shaped foot and accommodates the wider toe-base without any problem. Not to mention that they are super cute!

They have shoes that fit infants (the "Smaller" line), toddlers (the "See Kai Run" line) and coming this fall they will have shoes for older kids (the "Kai" line).

Interested in scoring a free pair? Here's how:

1. Head over to Facebook and "Like" the CCA Kids Blog. The winner will be announced there so you don't want to miss out!

2. Visit the See Kai Run website or Facebook page.

3. Leave a comment on the CCA Kids Blog telling which style you would choose if you won. (You can always change your mind later.) 

It's that simple!

We are so excited to be able to give away a pair of these shoes! Good luck!

** The giveaway will be open until Tuesday, July 26th at 11:59pm EST. A random winner will be chosen based on the number of comments received. The winner will be announced Wednesday, July 27th on the CCA Kids Blog Facebook page. I will ask for your contact information at that time so that I may send instructions for placing your order. If I do not receive the information within 24 hours, a new winner will be chosen.

Friday, July 22, 2011

What's for Dinner?

I have to confess that Peter's eating disability is a source of constant struggle in our house. He has had a feeding tube since birth, and we have suffered through countless hours of therapy in an attempt to get him eating by mouth. Personally, I have thrown in the towel, and stopped trying to get him to eat "normally." My husband, however, still has enough spark left to keep pushing Peter to try new foods and consume something that might resemble a meal. I'm grateful for that because I just don't have the energy to try anymore. The fact is, neither one of us really knows how capable he is of chewing and swallowing.

When Peter was a baby we endured the feeding pump on continuous feeds both throughout the day and all night long. We changed sheets at 2:00 in the morning whenever the bags leaked formula all over his bed. We woke up to alarms going off due to kinked tubing. And, we mourned the fact that we never got to give our baby a bottle. If you think about it, feeding is a tremendous bonding time between parent and child. It requires you to take a time out, sit down, and enjoy each other's company. That special time is not supposed to include technical hardware and syringes!

As Peter got older, I began to worry about how he would eat at school. The summer before kindergarten, I totally gave up on therapy and went to my own approach. I was sick of playing with food and clapping over the fact that he finally touched a spoonful of applesauce to his lips. I also hope to never again finger paint with pudding!!! I did make some progress after about a week of dragging Peter to the table kicking and screaming and making him take a few bites of whatever pureed recipe I mixed up. Honestly though, we were all miserable.

When Peter went to school all day for the first time, he drank a high-calorie Carnation Instant Breakfast shake for lunch (made with whole milk and cream). Fast forward 3-4 years and his diet is virtually the same. He drinks 3-4 of those shakes every day and has a few other special dishes. He will take bites of other foods but usually not enough for what I would count as daily calories. We also tube feed him a can of Pediasure at bedtime. Yes, I've heard of "food jags," but they obviously don't apply to Peter. I keep asking him if he is tired of drinking the same thing every day. Maybe try a new flavor? A different texture? Anything??????? The answer is always, "No thank you."

It's obvious that Peter takes no pleasure in eating. I sometimes wonder if his sense of taste and smell maybe never developed properly. I know he has those senses based on his reactions, but I just don't see how they can be very refined. I continue to be surprised at how little help the medical community is when it comes to an eating disorder of this nature. None of his 8-10 specialists really seem to care much about how he eats so long as he gains weight and shows up respectably on the growth chart. Whenever I bring up the issue, I receive a prescription for occupational therapy. I'm aware of a few facilities that specialize in treatment for transitioning from a feeding tube, but they usually require intense daily therapy and a great deal of time away from home. A commitment I'm not willing to make right now.

Here is what I believe. I believe that if Peter ever decides that he wants to eat like a typical kid, then he will. If he needs help at that time and shows me that he will work at it, I promise to be right there beside him finger painting with pudding on a paper plate!

P.S. I have to quickly share another ear story. They just never seem to end! Peter lead some new students in his karate class this week and, as expected, they were all very curious about his missing ear. One of the kids finally asked, "Did you fall out of your crib when you were a baby?" Peter, who couldn't stop laughing, simply said, "No. I was born this way."

Monday, July 18, 2011

The search for the perfect shoe

Aiden, now 3, has Apert Syndrome and was born with type III hands and the characteristic webbed feet. I remember rocking him as an infant and stroking his smooth connected toes. I loved his feet from day one. For some reason I was more focused on and worried about "fixing" his fingers than ever changing his toes. On the night before his first separation, I cried thinking about how my baby would forever be changed. We had gotten used to his tightly fisted hands and his toes - his soft, smooth, connected toes. The last picture I took before he was whisked away into surgery was of his feet. I was going to miss them as they were.

Two and half years later, Aiden has had both of his syndactyly releases and we are finally able to say the words that every parent ticks off their checklist on the day their child is born - "Ten fingers, ten toes!" I'm happy with the transformation. I'm at peace with losing his soft stuck together toes. And I know Aiden will be happy we made the choice to change his feet while he was too young to remember the pain.

But with the good also comes the bad. More frustrating than anything else is finding shoes that fit Aiden's special feet. It's an experience that can most easily be compared to a woman's search of that illusive "perfect" pair of jeans. We will spend hours upon hours and much hard-earned money searching for something we know is out of our reach. Just like during my search for jeans, I've left stores in tears when "the perfect pair" doesn't fit the way I wanted it to. And there are even ones tucked away in my closet that I was certain enough about in the store to buy and bring home, but simply didn't make the cut once they'd been worn once or twice.

Through the years, we have had some success with certain brands, styles and types of shoes that I'm going to share with you all here. I know that everyone's feet are different shapes - with or without having toe separations - so these are only suggestions of what has worked well for Aiden. Hopefully, you will have some luck with these (or at least save some money looking for that perfect pair by narrowing down to these)! Good luck!

Robeez (or similar generic brands)

These were our go-to shoes when Aiden was an infant. They were easy to get on and off, cuter than just wearing socks, and helped keep his feet/socks clean when he was cruising and learning to walk.

I didn't discover these until Aiden was almost too big for them, but they were great play shoes for around the house. The traction is awesome for new walkers, and they were more like socks so he wore them around the house or at indoor play-places where "shoes" were not permitted.

Crocs (or similar generic brands)

I know these shoes have had their fair share of negative feedback, but I have to admit, from a wear and tear and convenience standpoint, Crocs have been one of my favorite brands for Aiden now that he is bigger. The shape of the shoe itself, with it's wide and roomy toe base, is almost as if it were made specifically for the Apert foot. They are super light and the little holes allow his feet to "breathe" so they don't get as sweaty - although they still do sweat so oftentimes he will wear socks with his Crocs (is that a fashion faux-paux?) They have withheld sand piles, mud puddles, bike riding and playing at parks and still look good enough to wear with nicer outfits. But the kicker here is - no shoestrings, velcro straps, etc. allows Aiden to get them on and off by himself. (Good for his independence, not so good for his fine motor skill development).

Hands down the cutest, most comfortable shoe for Aiden as a new walker. The width of the toe area and the easily stretchable materials used to make the shoe make this one of my top picks. The styles are adorable - if we were looking for a nicer dress shoe this is where we would start. I'm sure they are durable, however I only let Aiden where them with his nicer clothes (which for a very active little boy was not frequently) so they were never quite put to the test. Biggest down side: they are quite pricey so we only had a pair or two. We tried to buy a size bigger so they lasted longer.

Looking for tennis shoes? Try these first. Flexible material and durability make these very easy to get on and off. Also, the length of the velcro straps is longer than most so they can be adjusted for the increased width of the front portion of the foot where the Apert foot is usually broadest. Some brands with velcro either don't reach at all or barely secure, making it almost impossible to keep them closed throughout the day.

The best thing about this brand is that it comes in XXW - or extra extra wide. This is an obvious bonus for our kiddos feet. Rather than having to go up a size or two to accommodate for the increased spread of the toe area, we could finally find shoes that were true to his size AND feet his foot without shoving his toes into a too-narrow shoe. Only downside is that not all styles come in XXW, and it is mostly tennis shoes, although there are also some dress shoes or casual play shoes as well. And while these are rather pricey for basic everyday shoes, the outlets usually have great sales and other retail/discount stores carry Stride Ride as well. So if you do a little digging, you can find them cheaper.

If you have some other favorite brands or tips on finding good shoes for our kids with Apert Syndrome, please share them by leaving a comment on this post!

Happy shoe-hunting everyone :)

P.S. - The brands mentioned above and the reviews given are my own opinions. I was not compensated in any way or asked by these companies to promote their products. With that said, I plan to send this post to the above-mentioned companies to see if we might be able to score a discount of some kind for craniofacial families :) I'll keep you posted!

Friday, July 15, 2011

My Lesson from a Ten-Year Old

Both of my boys always love signing up for the summer reading program at our local library. Peter’s nickname has been “bookworm” for many years. He’s an avid reader, especially of the super hero and fantasy genres. Jacob, who just finished kindergarten, is doing his best to log as many minutes as Peter. Of course it’s nearly impossible for him to keep up since he isn’t quite a fluent reader yet, and he doesn’t stay up nearly as late sneaking in more reading time at night. Jacob tends to crash at bedtime after going at 150% effort all day long whereas Peter lives for summer vacation and no strict bedtime so that he can stay up later reading a good book.

On one of our recent visits to the library I came across a section of books about science and body parts. Peter enjoys those types of books a lot, so I suggested that he pick out a few to take home. As I was looking through one of the books, I saw a page entitled “Why we have Two Ears.” I told Peter he might find that interesting to read since he only has one ear. My point being, “you might gain some insight as to what you miss out on with only unilateral hearing.” Peter, in his typical fashion, looks at me and says, “Mom, I know what I’m missing… AN EAR!” Like, duh!!!!!! I guess he told me didn’t he?! In all honesty, his reaction totally cracked me up.

I am always glad when Peter is matter of fact and sometimes even funny about his differences. I think it provides an easy and comfortable way for people to get to know him better and to also see very quickly that there really is no difference at all.

Monday, July 11, 2011

Reaching Out

It's not everyday you meet someone with Apert Syndrome. In fact, it'll typically only be a once-a-year occurrence, that being the annual CCA Kids Family Retreat where scores of craniofacial families come together to hang out, share stories and enjoy a different city with new friends and old.

Recently, however, I stumbled across a family blog of a child with Aperts in our area. Every now and then I google "apert syndrome" to see what new information comes up - research, new medical information, families. When I found this family's blog, I realized that not only were they in my area, they were actually staying at the local Children's hospital recovering from a recent surgery. I immediately wanted to reach out to them.

I found the mother's email address on the blog and shot her a quick note. Realizing it might seem like spam to get a random email from an unfamiliar email address, I was sure to put "mom of boy with Apert Syndrome" in the subject like to catch  her attention. We exchanged a few emails, then phone calls, then made plans to meet at the hospital. I couldn't wait!

When we arrived at the hospital, we met this sweet little boy who was full of life. Even after undergoing a critical head surgery, and while dragging an antibiotic IV bag, he shuffled around his room from toy to toy as if nothing was wrong. Once again a testament to the resilience of children.

After chatting a bit about his surgery, I asked the mom how many other families she had met that had kids with craniofacial conditions. Her son had recently turned 2, so I assumed she had probably had contact with many others, just as we had at that point in Aiden's life. I was completely stunned when she told me I was the first and only.

She seemed to have a very good handle on all things related to her son's medical care, and having met her mom and best friend while at the hospital, I knew she had a lot of support nearby, but I was still surprised that 2 years into her son's journey she had never had the support of someone who knew exactly what she was going through. Maybe she didn't want it. Maybe she had never even thought to look. But it was a great feeling to be there for her at such a crucial time. I felt like the timing was just right and quite possibly "meant to be".

I shared with her information about CCA and talked to her about the recent retreat in Louisville. And although she didn't seem too interested in learning more, I figured she had much more important things on her mind as her son recovered. Hopefully this meeting will spark a friendship at the very least, and perhaps open her up to seeking out support from other craniofacial families in the future.

Friday, July 8, 2011

The Importance of Unconditional Love

One of the best memories I have of Peter’s early years is the sight of our dog’s eager face greeting us at the door every time we came home from a surgery or extended stay at the hospital. It is always a relief to get home and finally be able to relax, but to have such an excited friend waiting for your return makes it that much more endearing. I think our oldest dog, Divot, is in every homecoming picture we’ve taken over the years. Divot is one-year older than Peter, so he has been there with us from the beginning. Having a dog in the house when Peter was a baby helped me as well. We were nearly homebound for Peter’s first couple of years due to the fragility of his health. With Darin travelling for work, Divot was my constant and sometimes only companion.

Peter always says that Divot was his very first friend, and I would have to agree. When at home, those two were inseparable! Our dogs, we have two now, have always been part of our family traditions, celebrations, and milestones. They have witnessed our boys’ first steps, first days of school, birthday parties, and family holidays. They have also shared in our grief during family tragedies and our stress and worry over surgeries and hospital stays. Our dogs have given us endless entertainment and comfort over the years. They are always faithful and eager to please.

Peter is especially fond of dogs. One of the first signs he learned as a toddler was for “doggie”, and he used to do the sign for it when he was in the hospital. We have at least two white stuffed dogs that were gifts because people heard he was missing Divot. Peter studies books upon books about dogs, and he has a collection of nearly every breed of Webkinz! There is even one named “Children’s” that he received when the tooth fairy visited the hospital after a surgery.

I want my boys to always enjoy the friendship of a pet as they grow up and face the many challenges of adolescence. Having a pet is giving your child a friend who loves them unconditionally, a friend who silently listens to all of their troubles, a friend who cuddles next to them when they are sick, and a friend that does not care in the least what they look like.

Friday, July 1, 2011

What's in a Name?

I know we've mentioned it to Peter before, but he either didn't completely understand or maybe he just didn't care. Recently, however, he seems to have had some sort of epiphany about himself. It’s like he finally realized that there is actually a name for his differences. We have never made a point of defining his birth defects in a very formal way. I mean, really, whatever it’s called is not going to change the treatment and care he requires. It’s funny how all of our family and friends have now heard of Goldenhar Syndrome, but that Peter himself has never actually identified with the name. Well, not until recently.

Last week we were able to attend the one-day symposium at the CCA Retreat in Louisville. Peter and Jacob both participated in some workshops about communicating and handling public situations. They were specifically designed for their ages, which was really great. I’m so glad that they were able to talk with other children that have to overcome the same social obstacles they do. It had to be both comforting and empowering.

At ten, I know this increased since of self is just beginning for Peter. More than anything, I think that our medically-challenged kids as well as their sibs possess an enormous amount of compassion and acceptance for others. By attending events like the CCA Retreat and seeing other children in the hospital frequently, our kids have a completely different definition of what “normal” really is. I can personally attest that Peter is extremely sensitive when hearing of anyone else’s misfortune, almost to the point where we can’t share as much information with him as we would like for fear of upsetting him too much.

Attending the CCA Retreat last week with Peter at the age of ten was very different from the last retreat we attended when he was seven. I think learning that he is not so unique after all, that he is not the only one dealing with surgeries and clinic appointments, and that he is not the only one handling stares and questions in public was somewhat humbling. It’s really the perfect venue for him to “check in” with himself and figure out where he fits within a community and family like CCA where different is normal and really no big deal.

I was happy to hear what Peter said when introducing himself at one of the workshops. He said, “My name is Peter Dankelson. I have Goldenhar Syndrome, and it sucks.” It’s simple, true, and, I think, perfectly healthy feelings for a ten-year old boy.