Cameron’s Journal
Diagnosis 0-6 months
At the age of 1 month, I had a suspicion something was wrong with Cameron’s weight
gain. I breast fed him and he would pull away from me after just a short time eating.
We had several friends and family members with kids born around the same time and
they were gaining weight at an amazing pace. Cam was born at 37 weeks and was 6lbs
2oz. We were told he would make up for his low weight quickly. He never did.
The week before his 2 month check-up, I couldn’t take it anymore. I made an appointment
to have him weighed. That’s what started the every other week weigh-in. We have
weighed him almost every week since then. Our pediatrician decided to call it failure
to thrive and that started the process of getting a true diagnosis. At the age of
3 months, we checked Cameron into Bronson Memorial Hospital to try to get a diagnosis.
All of the usual issues were eliminated there and we were sent home with an N-G
tube and reflux medicine hoping that reflux was causing Cam to not want to eat.
Cam coughed the tube out the next day and we left it out.
Two weeks later we checked Cameron into Childrens Memorial in Chicago where we were
able to see a GI specialist, Geneticist and Neurologist. We left thinking we would
have a G-tube put in in a few weeks and were waiting for results of a few tests.
We bought an infant scale and began weighing him frequently and recorded every feeding.
After a couple of weeks, Cam began to gain weight at an alarming rate. Because of
the weight gain, we decided not to have the G-tube put in. Shortly after this decision,
Cam then contracted Bronchiolitus and lost 1-2 lbs in 2 weeks.
We decided to continue the search for a diagnosis and headed to Children’s Hospital
in Pittsburgh. The physician we saw there diagnosed him almost immediately with
some type of Progeria. With our preliminary diagnosis in hand, we spent the entire
night on the internet trying to determine which form of Progeria was the most likely
candidate. After reading the stories and seeing pictures of the children on the
PRF website, it was clear to us that Cam had the classic form, Hutchinson-Gilford
Progeria Syndrome. We had a blood test confirm it 3 weeks later. Cameron was almost
6 months old.
Cameron Journal 6-12 months
We engaged the Early On program and determined that we wanted to continue working
with the physicians at Childrens in Pittsburgh. Pittsburgh’s Diagnostic Referral
program was the best we found in coordinating Cameron’s care holistically. Cameron
began physical therapy and speech therapy at about 7 months. Cameron started sitting
up around 6 months. We noticed that his knees never fully straightened out. PRF
recommended he spend time in the pool to keep him moving. So we started swimming
lessons once a week. The biggest concern was the pool temperature was very cool.
Cameron swims in a wet suit, but he’s so small it doesn’t really hug his skin like
it should. We try to fill it with warm water before we get into the pool.
We went to Miles for Miracles and met Lindsay and Josiah in May. It was great to
meet them and their families. We also got a chance to learn more about organizing
a walk/run event.
At about 11 months, Cam got his 1st tooth. He had been drooling for 6 months, we
were so pleased to finally have a tooth. He also started crawling at this time.
The steroid cream that we had been applying to his trunk was helping his flexibility.
We think the skin treatment helped with his mobility and physical development more
than anything else we did.
Cameron Journal 12-18 months
Cameron began taking steps at 13 months and was taking several steps at a time at
14th months. He had 4 teeth at 14th months and more on the way. Cam was having problems
swallowing table foods. He would chew them and then spit them out. We considered
doing a swallow study, but decided he had enough exposure to radiation. Thankfully,
Cam began to slowly swallow all table foods.
Cam loved Halloween this year. We had a very hard time keeping him inside. He wanted
to be outside with the other kids. We decided to begin organizing a walk/run during
the fall of next year. We have a few coworkers and friends helping to organize the
event.
At 15 months, Cameron has 5 teeth. We stopped the steroid treatment on his skin
and have only been moisturizing. It has been doing very well. Cam has been swallowing
solid foods well. His favorite foods include pizza and grilled cheese.
At 17 months, Cam has been loosing hair for a few months. It has been falling out
in clumps recently. It appears to be falling out when the cradle cap flakes off.
Cam still has downy hair on the sides. Cam has 6 teeth and is continuing to get
more.
As the weather has gotten nice, we’ve learned that Cameron loves to be outside.
He has some favorite activities like riding in the toy car when we go on walks.
He also likes to get the paint brush out and carry it around. He’ll even get a brush
out for his sister. We started the South West Michigan Chapter of the PRF in April.
We’ve selected a date for the fundraising walk/run to be on 9/27 in St. Joseph,
MI. We’re calling it Kilometers for Cam.
Cameron Journal 18-24 months
Cameron had his annual trip to Childrens in Pittsburgh at 19 months. The trip went
well and we’re pleased with the care we received and the information we got. We
had 12 appointments in 3 days. Cam did very well, but was exhausted.
I have a new goal…I am going to try to put an update in once a month. I’m starting with the last month I remember
August 2009
We had a great time at the Lake Michigan Hills Golf Club outing. They held a fundraising event to support PRF and local high school golf programs. Cam received a set of golf clubs, got to see Santa and ride on a golf cart.
September 2009
What a wild month! We started with Cam’s 3rd birthday party with friends and family and finished with the 2nd Annual Kilometers for Cam and trip to Boston. The race went very well(a tribute to the organizers) with a record number of participants even with the poor weather. It was great to see such a good turn-out and spend time with our friends and family from out of town. We also had a good visit in Boston with Cam’s 6 month check-up for the drug trial. Cam’s best memories of Boston are flying on the airplane, seeing his friend with Progeria and seeing the great doctors and staff at Children’s Hospital. He also likes the pool at the hotel. With all of that going on…both Cam and Riley started in new schools this month. That transition went very well.
October 2009
We had a great opportunity to go to the St. Joe Bears vs Lakeshore Lancers football game. We toured the press box at the St. Joe stadium. It was quite impressive. A little later in the month, we also participated in Kaylee’s Course. We were in Toledo with 3 other families with kids with Progeria. Because TLC was filming at the race, Cam and Jason made the national TV debut.
November 2009
We had a wonderful time in Atlanta with Grandma, Grandad, Great Grandma, Uncle Derek, Aunt Dana, Keaton and Asher. We played a lot of Rock Band and “helped” Aunt Dana decorate the house. Cam learned how to take a pill this month! That was a huge help with the travel to Atlanta.
December 2009
We spent the month getting ready from Christmas. This includes the normal activities, but we also have a tradition started with our local friends of Christmas cookie baking. This event is an all day activity resulting in several hundred cookies and a lot of fun. Cam and Riley are usually responsible for decorating and unwrapping the candy. We had a great visit in Pittsburgh with our family for Christmas. Santa got Cam a battery powered motorcycle that he can ride. It is hilarious watching him ride with attitude.
January 2010
We spent a lot of time this month getting ready to visit friends in Brazil. We took the lead from Lindsay’s family and got Cam a wetsuit. Hopefully he’ll be able to swim much longer than 5 minutes with the wetsuit on. Cam is potty trained!!!! Now we can go to Brazil.
February 2010
A couple of days after the Super Bowl, we flew to Brazil to visit friends. We went to Manaus and Sao Paulo. It was definitely one of the best trips we’ve taken. It was wonderful to spend time with our friends and they gave us a great tour of their country. Both Riley and Cam did very well…of course there was a pool everywhere we went and we were with Riley’s best friends.