College Bound

Chelsea received her acceptance letter to the college of her choice. She was a bit worried but extremely happy that she got accepted. She will be studying the vet tech program. It is a 2 year program. Every time we go to the vet, we ask the girls working there where they went to college. They always seem to answer the same - Chelsea's choice! Her first year consists of probably 2 days a week. The 2nd year will be full of trips to the zoo and a lot of lab work. The other amazing feature is that if she keeps her GPA at a 3.5 or higher - tuition is cut in half!! Congrats Chelsea - I know you will love it there!

Prom - 09

Chelsea had prom on Friday night. For those of you who live around here, you can remember that we had perfect weather! We had a friend from church do her hair. We had some issues with her dress because she is so short. I had to try to hem it up - I am not a sewer but I managed to get it to work somewhat. Her group of friends met at a park for pictures, then went out to supper at Main Street. The prom itself is held at the museum downtown. She got some great pictures on the carousel and in the museum itself but I didn't have those to show you. She made it back home a bit after 12:00 after having a great time.

It's not even Christmas Yet!

First, she got this 4 weeks ago......















Today she got this!

And another one's gone (to school that is)

Chelsea started school today. She is in her junior year. I think that is one of the more difficult years - class wise. She's got a lot of tougher classes including AP History. She does have friends in most classes so that helps. She said that it went fine today. It was a shorter day today with class getting done at 12:20. They do have off on Friday so that will be a nice, longer holiday weekend.

The End of Chelsea's Story

I've finally gotten around to posting about the last of Chelsea's story. She had this last surgery just before she turned 10. The purpose of this surgery was to pull her whole midface forward. Dr. Polley made an incision using the previous scar line but he cut through the bone. This was where the bone would start to heal every day and I would turn the screws to pull it forward more. We had to have this surgery at Rush Presbyterian Hospital in Chicago. She was the 8th person to have this specific surgery. Because this was such a new procedure, there was a lot of interest in it. At the end of this post, I have a copy of the article that was put in The New York Times. We met a wonderful reporter who followed us through with all of our dr. appts. and final surgery. She was also the one who wrote the entire article for The Chicago Tribune. We still meet with her when we go down for yearly visits.

This last surgery took about 6 hours, I believe. She had to stay in the hospital for one week, and got to come home on her 10th birthday. What a great birthday present. We had to go to Chicago on a weekly basis while I was turning the screws.

This is a picture of the halo and the two different screwdrivers that I used to turn the screws. They had specific instructions and markings on them so that I would know exactly how much to turn. This was made of titanium and was very light. Chelsea said it did not hurt when I turned these screws - she didn't even feel it, thankfully. If you enlarge it, you will be able to read more specifics on what I did.

















This was 1 week after the surgery She had just come home the day before. If you'll notice,there were wires above her eyebrows and lower that hooked into her teeth. On each end of these wires were little screws - 4 total - I had to turn these once a day. Also, there were 2 screws at the end of the halo. Those also had to be turned every day. This was how we pulled the midface forward slowly. It would open up the incision, very slightly and then it would start to heal over; the next day we would do it again. I quit turning the screws on day #30. Then the halo was just left on for 4 more weeks to let it all heal up.















This was day 17 after surgery. She wasn't feeling 100% yet. She tired quite easily and then she got some sort of bug where she wasn't hungry and didn't want to eat. This gives a better picture of the front of the halo.














This is day 25 after the surgery. The screw above her left eye popped out and so we had to go to Chicago the following Monday, so that they could reattach it in an outpatient surgery.














This is Chelsea and Dr. Polley after the surgery. He was a great surgeon and was so caring toward her.
















This is the article that appeared in The New York Times. It gives you a better idea of how she looked before and after the surgery. Enlarge this to read some of what the article said.
















There is a possibility of another surgery, if she would want it. That would be to work more on the orthodontics of the mouth. The dr.'s are happy with the outcome of it all, so this would be more of a cosmetic type of surgery. Chelsea is content with everything so I think we're set. We are just very grateful with what all the medical field can do now. I hope I've enlightened you all a little bit with information on Crouzon's and what Chelsea has had done!

Watch out World - Someone's turning 16!

Today is Chelsea's 16th birthday. Can you all believe it? I hardly can! These have
been years with some highs and lows. Here you are at 1 year old. You always did have a contagious smile. You were a happy, easy going and contented baby.









When you were 2 weeks old, I remember Grandpa saying, "I think she's going to be an easy kid". Well.....there have been a few difficult moments. Let me see, I recall you being just over 2 years old and I was trying to put your cute little dress on for church. For some reason, you did not want to get dressed. Dad and I were both working on getting that dress on you. As quick as we'd get one arm in and start working on the other, you'd pull that first arm out. Stubborn....

Here you are at 5 years old, gettting ready to start Kindergarten in the fall.



Chelsea means: a shipping port
Lynne: a cascading waterfall
I guess this somewhat fits you. You enjoy water. You like swimming and taking long showers?! Good thing we didn't put a lot of thought and meaning into the name we chose. We just picked it because:
a) Dad liked the name Chelsea
b) Lynne is Mom's middle name






Here is the picture we had taken last summer. Quite a change over
the last few years!


Deciding to work with animals in the future fits you well. I think you will do a great job doing something in the veterinarian field. You have a great heart for animals - well most of them. (poor spiders)
You've been through quite a lot in these past 16 years and we are proud of the way you've handled it all. Love you.










HAPPY SWEET 16th BIRTHDAY!
(and no - you're not going to find one of these in the driveway for you, we're keeping those roads safe a little while longer!)

Chelsea 's story - Part 2

Today, I'll try to go a little more in depth of some of Chelsea's surgeries. I don't have a lot of pictures of them because I really didn't take a lot of pictures before I started to scrapbook. On a later post of her surgery, 6 years ago, I'll have a lot more to show.


Chelsea had her 1st surgery when she was 9 months. Then 2 more when she was 15 months and again at 26 months. Basically, they were all the same type of surgery - to rebuild her forehead. Crouzon patients heads tend to grow upward and not develop outward when they are younger. So they need to reopen up the soft spot to give brain growth and then build the forehead which gives more protection for the eyes. The eye sockets do not develop correctly either, which tends to make the eyes bulge outward.
Sometimes, people will mistake Crouzon patients as Down Syndrome because of the look of the eyes. Her surgeries were done in Grand Rapids by a wonderful doctor - Dr. Mann. He is a excellent doctor who really cares for his patients - of whom are mostly children. I believe this 1st surgery took about 8 hours to complete. He made an incision which went from 1 ear over the top of her head to the other ear. Using various bone segments, he rebuilt the forehead out. This picture is of the 2nd surgery but gives you an idea of how she looked about 3 days following. Because of all the work done on the head, the eyes swelled up a lot. I have a picture somewhere of her swollen eyes but cannot find it now. It's incredible how much they could swell. The poor little girl couldn't see for days or understand what was happening. That was one of the worst parts. If you can notice, there was a drainage tube on top to catch the fluids. Once her eyes opened, what a difference in her personality! She always stayed in the hospital for 1 week.


















Enjoying a stroller ride and heading down to the playroom.
















Getting an appetite back and trying out a grilled cheese sandwich.


Her 2nd surgery lasted 9 hours and her 3rd one was for 12 hours. The doctor had to stitch bone pieces the size of a thumbnail to form the forehead, so you can understand why it took so long. He told me that they had to have some donated pieces shipped from Detroit during this last surgery because she needed so many. I have to laugh a little to myself when I hear people talk about having a long surgery and then they say it was 4 hours or so. (ha ha - Dave's last surgery was 15 hours. We were first in the waiting room and the last to leave; around 12:30 am) We also had people donate blood for her because neither Dave nor I had the right type - I have a negative factor in my blood which causes trouble.


After she would come home, she had to wear a protective helmet. Just in case of falling or something, we didn't want any damage to the larger opened soft spot. Here she is with the helmet that she wore after her first 2 surgeries.
















This is a different type of helmet that I found in a medical magazine. She used this after her 3rd surgery. It was quite as bulky and didn't have so much of a "medical" look. Sometimes people would think that it was a bike helmet so we didn't always draw so much attention to ourselves.


Thanks for bearing with me in this somewhat long and detailed story. I hope it gives you more understanding of what life was like. These weeks were always long and hard but it seemed that we would always meet people with more troubles than we were having. We also had great families who would help us through it too.
The next time I give an update on this, I will cover her major surgery that happened in Chicago and more of how she got her picture in The Chicago Tribune.

Here's the Answer

Here's the answer to the picture I posted Wednesday. For all you people who answered, Chelsea - you are correct. This picture was taken in October - 2002 and was published on the cover of the The Chicago Tribune Magazine(in the insert of the Sunday edition)
Chelsea had a major surgery done in Chicago, in January of 2002. She has a syndrome called Crouzons. The New York Times wanted to do a story on this surgery, so we met a reporter who followed us through this whole surgery and follow-up. There was a 1/2 page story on Chelsea in The New York Times but the reporter (Brenda) knew the editor of The Chicago Tribune
and told here she wanted to do a bigger story on her for The Tribune.

Throughout these next few weeks or so, I plan on posting about my children. I'm starting with Chelsea and this is a major part of her life.
Let me just explain a bit about Crouzons Syndrome. This is a craniofacial syndrome which affects the development of the face. This can be passed down from a parent of just because of a gene mutation. My husband has this syndrome also and his was because of some mutation.
Part of what happens is that the bones in the head close early. You know the soft spot that baby's have - it's important. It allows for the growth of the brain and when it closes early, there has to be a surgery to open it up again. The head tends to grow upward; therefore they have to build the forehead out. When kids are around 10 - the midface does not grow properly, so they have to pull that out through surgery. Chelsea had surgeries when she was 9 months, 15 months and 28 months. These were all for the forehead area. Then when she turned 10 - they did this midface surgery. I'll go into more details in future posts but hopefully this will give you an idea of what this all is about. I'll try to find some pictures to show also. Thankfully, they've come a long way since Dave was a child. If you have any questions you'd like me to cover, feel free to ask and I'll do my best to answer.