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March 2, 2000 - Megan was born larger than most babies with OI (larger than most babies period) at just over 9 lbs. The birth was easy, but Megan's cry was very high pitched. LaNeil felt it was a different kind of cry (trust a mother's intuition). She was told by the hospital staff not to worry. Diaper changes seemed particularly painful for Megan during that first night. By the next morning, she had been checked out by the doctor, and was diagnosed with Osteogenesis. They moved Megan to the Children's Hospital in DC for further testing. She had 6 fractures at birth.
Megan stayed in ICU for a while. She was the largest baby there.Babies with OI are put in a harness instead of a cast. It allows for easier diaper changes and also the weight of a cast would be too much.
You also need to be very careful about padding with OI babies. Any casual tap on the side of a car seat or carrier could cause a break. Megan has had 7 additional breaks since birth.
May 15, 2000 - Megan began her first infusion of pamidronate at the Shriners Hospital in Montreal. Naturally she cried with the insertion of the needle. They put the needle into the temple and with babies it sometimes takes several tries to get a vein. After the needle was inserted, Megan did fine. The infusion takes three days to complete. During the first session the children stay in the hospital, but during subsequent sessions they are allowed to go to the hotel with their parents.
July 11, 2000 - Megan's second infusion of pamidronate. They took another bone mineral density score and Megan has already shown signs of increased density. Her original score was 0.114. A normal BMD for a newborn is 0.200 so as you can see Megan had half of what she was needing. When they scanned her this time to see if it had come up any she has gone to 0.159 !!!That is really great for just one treatment. Everyone was very encouraged. We were also able to meet with Dr.Glorieux who is the founder of the treatment. He was very encouraged by the results so far and told us that he is thinking that Megan will possibly walk one day. We are so thrilled. She is such a joy, and everyone loves her sweet smile. The picture above shows her smiling while having her infusion. You can see the tube going into her head. The Shriner's Hospital has given us so much hope for the future and she is such a little fighter that we know she will go far. Our next treatment date is scheduled for September 5,6, and 7th. We will update after each session.
September 8, 2000
We just returned from Megan's third trip to the hospital in Montreal. Megan had a good report and her BMD (bone mineral density) has come up to .184!! So it is still going up!! The normal bone density for a baby her age is about .340. She still has a long way to go but she is improving.
Megan is more active now because she feels so much better with the treatments. The more she moves the stronger her bones get! With the good, comes a little bad . The second day of her treatment she pulled the IV out of her head. I guess she was trying to tell us .. enough all ready!! They decided to try to put the infusion through her foot. She tolerated it much better. The second night of treatment she slept much better.
The nurses at the hospital are great. They were very encouraged by Megan's progress. We also picked up her new little chair that will help her learn to sit up on her own..It is her first little pink leather chair <awwww> Megan is now rolling over both ways and can even roll from her tummy to her back. This is a victory for OI babies . Yeah Megan !!!
We have had no fractures now since June 15th which is incredible if you stop and think that prior to this we had about 12.
October 29th
We just returned home from Megan's 4th treatment with Pamidronate. All I can say is thank goodness for doctor's and research scientists that did not give up on helping children with OI. Megan's new BMD is .210 !!!! That is the normal range for a new born.Megan's BMD is still low since she should be at about 300 now. But as you can see, she has strength that she never would have had without this treatment and prayer. She is did not listen very well to the doctors at birth who said she would most likely not crawl or sit or stand or walk. Megan is doing the classic rocking on her knees which is the first step towards crawling. She creeps backwards and it won't be long before she will be inching forward I'm sure. We are working on sitting up and she is trying very hard. She is so mobile now on the floor turning where she wants to reach the toys. Of course, we have instructed Ryan to start putting the small things out of reach. He loves Meggie, as he calls her, so much. She just cracks up when she sees him!!! The docs in Canada are so pleased with her progress. We got to meet the Orthopedic Surgeon and he has introduced a new rod that will hopefully be available to Megan if she will need the extra support. This new device leaves very small scarring and hopefully minimal complications.
All in all we feel Megan is REMARKABLE! She is definitely
not going to be content sitting on the sidelines she is a going to be in the
game....somehow. Thanks to everyone for all the toys. We shipped 4 huge boxes.
The staff at the hospital was so excited to receive them.
This trip was pretty hard for us. Megan got a microfracture
in her crib at the Shriner's Hospital. We actually heard the break and,
as you can image, it was an awful sound. They took her down immediately
for x-rays but as with many of her fractures it didn't show up yet. So,
they wrapped her up, and gave her some pain medication. She seemed to be fine,
so I made a decision that I now regret. I took her wrap off on the 23rd,
thinking that maybe it was not a fracture, and she was OK. On Christmas
night while we were visiting with Rich's parents in New Jersey, she fractured
the femur all the way through. This was a bad one, and we ended up in
Philadelphia Children's' Hospital all night. They were, thank goodness,
excellent with her and gave her the pain medications that she needed. They agreed
with me not to put her in a full spica, so we went with a splint in the
form of the spica. It went around the waist, but was soft on top. This worked
great, and she was out of it in 4 weeks.
She did suffer a lot of muscle spasms with this last fracture. We ended
up giving her Tylenol 3 and Valium which worked great together on the spasms.
Physical update: Megan is doing really remarkable for her age with OI.
She is on all fours' now, and is trying to crawl. She is back to sitting up
all by herself ,and is trying to pull up on Mommy and Daddy. She is in
the 40th percentile for her weight, and in the 20th for
height. She is 271/2 inches long, and weighs
19.7 lbs. We have been putting her in a walker some; just to let
her get some feel for pressure on her legs. We will meet with the orthopedic
surgeon this time in Canada to see what they recommend on the rodding surgery.
We will update more after the next visit. She is also saying a few
words.. Night Night, car, Mama, Dada, Quack Quack, and will hold one finger
up when you ask her how old she is . Smart little thing.....
September, 2001
Megan was fracture free for a few months after the December fracture. She started pulling up in her crib so we knew it was just a matter of time before she fractured again. Sure enough in April, right around my birthday, Megan was napping and when she woke up she stood up in her crib and fractured her right femur pretty bad. We ended up being air-lifted on Life Flight to Childrens' Hospital in DC. We ended up there overnight and returned home in a Spica Cast (Megan's first). The Shriner's Hospital worked Megan in for emergency surgery. We flew up two days later and had her right leg rodded. The surgery went quite well. She was on morphine for three days, and we were home by day 5. Amazing how quickly these children recover. I was very scared to put her under the anesthesia but she tolerated it just fine. The surgeon, Dr. Fassier, was wonderful and her scars are very small and healing wonderfully. Two weeks later, we returned to Canada and had her left leg rodded. This time Dr. Fassier used the new rod that he had developed called the Fassier/ Duval rod. This rod uses telescoping and screws into the knee, so she had no incision at the knee on this leg. She stayed in her splint for a couple of weeks, and then she came out of both the splints - right into physical therapy. They started her standing at a table with an incline and each day raised the table for more of a straight line. By the time we left she was almost straight up and she looked so big to me seeing her for the first time all the way up on her legs. Since the surgery it has been a whirlwind. MEGAN IS WALKING WITH HER WALKER !!!! This to me is one of the greatest gifts I have ever received. It is a true miracle to us and we know that without the Shriner's Hospital this could not have been possible. Her Bone Mineral Density has really improved. The added strength of the rodding surgery has helped her to walk. She looks so cute with her little walker, and she tries to be so independent. She doesn't want us to help her when she is walking . . . she wants to do it by herself. We are expecting a baby girl in December. They tested the baby at 12 weeks in utero and could not find the OI gene. So, Megan will be a big sister. We pray for a healthy baby girl whom we have named Kelli Noel Price...Our Christmas Surprise. !!!!! Megan has a golf tournament on October 12th that we hope to raise money for the Shriner's and the OI Foundation. We will update on how it goes.
At last an update on Megan. Last year was a busy
year for Megan and the Price family. Megan spent the whole summer of 2002 in
and out of casts. She had a fracture on the right tibia that would not heal.
Every time she was in a cast she would be out of it for two weeks, and then
rebreak it. We decided along with Dr. Fassier in Montreal to rod her lower legs
at that time. We are really glad that we did it. Since then she has been much
better. She is walking without a walke,r and we find her running at times. She
really is a happy little girl. We feel so blessed to have her in our lives.
She also welcomed a new baby sisiter December 17, 2001. Kelli Noel was born
with healthy bones and tight blonde curls. Megan loves to boss her baby sister
around !!
So our house is crazy at times. The girls are 21 months apart, and it is lively!
Ryan is now 8 and is a great big brother. He has grown so much since Megan has
been born. He really has compassion for people that are differnt than he is.
Megan has changed all our lives for the better. We now go to Kennedy Krieger
Institute in Baltimore every 8 weeks for treatment, but still use Shriner's
in Montreal for surgery. We have met many wonderful people throughout this experience
and we have grown closer as a family. We feel so grateful to the many doctors
an nurses that have made our jounery better. Dr. Fassier, Dr. Plotkin, Dr. Shapiro,
Dr. Guckes, and Dr. Leet have been wonderful to know and work with. God has
truly gifted these people with knowledge and skilled hands.We thank them for
their time and devotion to Megan.
We also want to thank all of you that stop by this site from time to time and check on Megan. Thanks for the support, prayers, and love that you have shown on this unbelievable journey in Megan's Voice....