Wednesday, October 22, 2008

Club Feet

Today we took Ben to get casted for his feet. I thought it would just be a consultation appointment but they went ahead and did the casts right then. We went to Shriners hospital. First of all, let me just say how amazing that place is. It is a children’s hospital in the avenues that is run by the Shriners (a tier of the masons). There are other Shriner’s hospital similar to this one throughout the US but this one serves all different parts of the west- Colorado, Wyoming, Utah etc. They deal mostly with orthopedics- joints, bones and muscles. And they are 100% free. We do not pay a DIME, nor does anyone who goes there. Haylee (my youngest sister who was born without an arm) actually went there when she was little. I remember my mom used to take her up to SL once a week to go to Shriner’s. She was fitted with prosthetic limbs and she got a new one every time she grew out of the old (and those things are PRICEY), She received physical and occupational therapy and one-on-one care. And now being a beneficiary of Shriners hospital myself I am even more amazed at what they do there. The doctors were INCREDIBLE. They were so caring and walked us through the whole process. It was so touching. While we were there we saw children with many other different disabilities, some were in wheelchairs, some had club feet like Ben. I guess every Tues morning they have “club feet clinic” and that’s when they work with children like Ben with club feet. They said right now they are seeing 12 children. Some are from Utah but most are from other states. If we were living in another state Shriners helps with transportation and accomodations, they are seriously amazing. But we live 10 minutes away- what a blessing. What an absolute blessing. I was sort of overwhelmed with emotion as I was there- overwhelmed with the needs of some very sweet children, including my own, and then just amazed at the generosity and kindness of others- the Shriners who contribute and make it possible to run this entire hospital- it is overwhelming to me and so completely touching.

We sat with a doctor who answered all of our questions. No one knows what causes club feet. This renowned doctor, Doctor Ponseti, who the doctors at Shriners have trained under thinks it’s something with myosin- a part of the muscle-that has sort of malfunctioned in the leg and foot. Some people have said positioning in the womb but this doctor really thinks it’s something more genetic with mysoin. Anyway, they really aren’t sure. But it’s about 1/1000 kids who are born with club feet and most all of the cases are totally correctable

So the process- First: casting for 5-20 weeks- which means that every Tuesday we will go in and they will take off Ben’s casts and we will be able to bathe him and then they will put new ones on. Each cast moves his feet just a little bit more (sort of like braces) until they are in a good position. Step #2. Possible cut of the Achilles tendon. This happens in about 90% of the cases in club feet. That tendon is too tight which is part of what pulls the feet inward so they cut the tendon which grows back lengthened (like a salamanders tail). Finally step #3- braces. After the casting and cut of the tendon, Ben will most likely wear braces on his feet 24 hours a day for about 2 or 3 months. Then he will cut back to wearing the brace only during naps and at night. Ideally this is done until age 4 but the doctor said most kids make it to about 2 or 2 ½ . There is chance of recurrence in which kids go back to wearing the braces or casting if necessary but after age 7 the chance of recurrance is very very small. So it’s treatable completely and Ben will probably be totally fine in the long run. But getting those casts on today was so sad to me. I held him as they put the casts on and he cried. They go up his entire leg and he’s so uncomfortable. I imagine it hurts too to have them put his foot in a position he’s not used to being in. Plus he loved having his legs curled up by his body and now they are stuck in two heavy casts that he can not move at all. He has cried and cried today, this cry of pain and it has broken my heart.

It’s interesting what life teaches you though. This experience is so minor in comparison to what so many children and parents experience. And I am only getting a taste of the feelings these parents experience as they watch their children in pain or as they see other people stare at their children- a reminder that indeed their child is different. But my heart has been softened today and I have felt compelled to count my blessings, the way God helps us in our lives, and the goodness of other people. We hear so much in the world today of what is going wrong- especially right now with all our politics, economics, foreign policies…but today I was the benefactor of some incredibly generous people I do not even know who will help my son heal his feet. Today I saw children who suffer and parents whose hearts break to watch them suffer but who keep going cheerfully. Today I watched my son cry in pain because his legs hurt but I could only be grateful that we have the medicine and technology to fix what his body did not give him and that he will be able to run someday. Today I was touched by my two year old's look of concern when he saw his week old little brother in casts “Ben have an owie mommy?” Today I felt the sweet spirit of an infant as he cried and then fell peacefully asleep on my chest. Today amidst pain and need I saw the hand of God.

Saturday, October 18, 2008

My Big Boy

Parker is doing well. He reacts very well to the baby, is SO sweet to him and always wants to help. I’m sure it helps a lot to have Spencer and I home so that we can give him the attention that he needs. Yesterday we went to the zoo- just he and I. It was so good to be with Parker. I missed him so much when I was in the hospital and the feelings I have right now with him are surprising to me, very very emotional. Yesterday I put him down for his nap. I read him a story and then we sang a song just like we always do. He let me hold him as we sang “Pearly shells”- his favorite these days. I finished one verse and then got so choked up I couldnt sing despite Parkers urgings-"sing mommy!" Here I was holding my little boy- who suddenly was not my little boy anymore. He was my big boy. And SO big. Next to Ben he is MASSIVE. It's a realization that time is past, that he is growing. We will never have moments alone up at the garden or playing trucks on the floor. Not like before. He is the big brother and there is this part of being a mom that you have to let go of him as your little boy and let this other little baby replace him. Not that he is being replaced, but in a way he really is- he is no longer my baby. How I will look back with so much love and fondness on all our days together, just me and him- playing in the sandbox and running around doing stuff for foothill, going to the zoo, visiting grandma and going to the park. Doing projects at home, having him tug on my leg and ask me to play, sitting on my lap at the computer and watching him grow from a tiny little infant to this big boy who talks and sings and has his own definite personality and is no longer the baby. Gone so fast. All those cliché things you hear about and now I am experiencing them and just like they said it would- it makes me cry. How thankful I am for the time we had to be together. And our little family of four will do well. I’m excited.

Benjamin Mark Clegg

Ben came as a definite surprise. I was not due for almost 3 more weeks and Spencer and I went up to Lava Hot Springs, Idaho on a little anniversary get away. Parker was with Spencer's parents. WE had a great time Monday night up there and then I woke up at 2am with contractions. Thinking there was no way it could be real labor I waited them out for awhile but knew I couldn't wait TOO long because we were over 3 hours from our hospital! So we called our doctor at 5am and she said leave NOW! I was still in denial but Spencer got us in the car and we drove to the hospital- his high school driving skills came in handy :) This first picture is the only picture we took of our time in Idaho. It was at 5am right before leaving to go to the car and the camera died right after this picture which obviously I was not ready for. So we drove to Salt Lake and I was having contractions the whole way but it really wasn't that bad. When we got to the hospital I was at a 6. We were there 3 more hours and then little Ben was born.

He's beautiful. A small 6lbs 6 oz and 17 inches at birth with TONS of dark hair. He seriously needs a haircut. He didn't have a name for a few days and Ben wasn't one we were even considering but Spencer thought he looked so much like a Ben. So he's named after his Grandpa Hull (Spencer's mom's dad) and a Great grandpa Clegg and Spencer and my good friend Ben Jenson had something to do with it too. He's super sweet and it's so beautiful having a new baby in the home. Parker is incredibly cute with him so far and keeps saying "mommy, he's so cute, he's so cute." The only thing we worry about is him being TOO helpful (feeding him toast and wanting him to play cars with him by tucking them under the sheets). And it's Spencer's fall break this whole week which couldn't have been more perfect. It's been such a beautiful time to spend time together as a family getting used to our new foursome!

Ben has special feet. He was born clubfooted and you can see that in this picture. They turn in. If they were to remain that way he would be walking on his heels but fortunately we live in an age where they can correct it with no problem. He will probably have to wear casts on his feet for a few months (we have an apointment next week) but after a few months he'll be totally fine and be able to do everything anyone else could do. It makes me so thankful for our doctors and the day in age we live in. He will be able to play sports just like his mommy! We sure love this little guy.

Please go to to watch our video announcement.

Final Days Before Ben

This is how Spencer puts Parker to bed- not regularly I guess but it's no wonder Parker loves his daddy so much. And no, the crib didn't break.

I know I already posted about Parker's birthday but I had to include these pictures of the awesome mom cake I made and Parker eating it- his tractor (it did look better than this at one point- though not much).

My family went to a Lagwagon /MXPX show a few weeks ago- courtesy of my dad who is so funny. He now has Linkin Park and Lagwagon to add to his list of concerts and November will bring Coldplay. I'm not complaining though- I love the shows! But boy did I feel OLD. There were like 50 people there (Lagwagon used to get tons of people) and most of my brothers and their girlfriends didn't even know them. I realized suddenly how uncool I am. But it was still fun and if the little guy comes out deaf we know why (but I already know he's not deaf because he's already born and he passed his hearing test :) )