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What's New In Jacob's World? 
Welcome to Jacob Irish's Web Page. Jacob was diagnosed with MPS1 - Hurler Syndrome in December 2001 and underwent an unrelated umbilical cord blood transplant at Duke University Hospital in May 2002 as treatment for his disease. He has had several other surgeries due to his disease including VP shunt, tonsil & adnoid removal, multiple PE tubes, hernia repair, carpal tunnel release, posterior spinal fusion, and bilateral knee stapling. There will more than likely be more surgeries to come, particularly in the orthopedic area. Jacob is a remarkably happy 7 year old who doesn't allow any of his medical issues to cause him any problems. Please feel free to sign Jacob's guestbook...we'd love to hear from you!
'Every blade of grass has its Angel that bends over it and whispers, "Grow, grow."'
~The Talmud
Journal
Friday, June 6, 2008 9:13 PM PDT OK, I realize I have given Jake’s website out a few times lately and it doesn’t look very good that there isn’t a current journal entry!
Jake is doing great. He had surgery number 18 on Tuesday...crazy he’s actually had that many surgeries and he’s only 7 1/2, isn’t it!?! He had 2 of the 4 ortho-fix eight plates removed from his legs. His orthopedic surgeon removed the femoral staples but left the tibial staples. At this point, Jake’s hips to knees are straight although he needs a bit more time on the tibia (knees to ankles). He came through the surgery with flying colors...our only problem is keeping him down so that he can recover. He was literally up and running as soon as we got home from the hospital! In fact he had the surgery on Tuesday and was back to school on Thursday...wow!
Jake has seen several doctors in the Seattle area and we have consulted with both Duke and Minnesota doctors in regards to Jake’s c-spine. There is a slight difference of opinion but at this point we are going with the ‘watch things very closely’ recommendation. We will be seeing Dr. Goldberg at Seattle Children’s every 3 months with MRI of the problem area every 6 months. We are just not ready to put Jake through c-spine stabilization and fusion. It is likely the most major surgery Jake will have had to date and until we are 100 ure he needs it we are going to wait. Of course, it’s always a balancing act when we do this because we don’t want to wait so long that too much damage has been done. Ugh! If only these things were a little more black and white...
School for Jake this year has been really great. His development is still pretty much in the age 2 – 3 year old range but he has learned so much this year and when he is willing he shows/tells us. Socially he is doing even better...sometimes we even see glimpses of a more age appropriate Jake. He literally has the best classmates in Mrs. Strittmatter’s First Grade Class at Lakewood Elementary School (little shout-out to his classmates!). This is a general ed classroom (as opposed to special ed) and although Jake may be different than his classmates they have been nothing but kind and accepting of him. This class is a “looping” class so we anticipate he will spend next year with many of these same kids for Second Grade which is just wonderful. We are gearing up for the big zoo field trip next week and of course the anxiously anticipated Field Day. I am dreading school being out for Jake in a week and a half because that routine is so important for him. I guess it will be up to me...’Mommy Routine’ for the Summer...
Thankfully, we have the International MPS Symposium at the end of June in Vancouver, BC which we are really looking forward to, not to mention our wonderful friends the Wigglesworth’s will actually get a chance to stay with us for a few days during this time. :-) The boys will attend the Camp Canada program while we are taking part in the conference. We also have a couple of camping trips planned for Summer and of course all THREE boys will be attending Camp Prov this year. In addition, Matt will be going to Golf Camp and then he starts PeeWee Football at the end of July. Matt is our little athlete. He just finished his 3RD baseball season. He has a really great swing and is both good at and enjoys both baseball and golf. This will be his first year playing football so we shall see how that goes. Mommy is a bit nervous but Matt is completely nonchalant about the whole thing. At the end of August we are supposed to head back to Duke for Jake’s 6-year post-transplant studies. This is still in the planning phase and if the price of gas keeps going up who knows if we will even be able to afford the airfare. It’s getting ridiculous!
The other big Summer news is that after Jake’s Make-a-Wish we were contacted by the Marysville Strawberry Festival Committee which is a very big local event. They asked Jake to be the President’s Marshall of the Grand Parade so on June 21ST all 5 of us will be riding in a vehicle in the parade. We really think Jake will think it’s cool and it is quite an honor to be asked to be in the parade and be a part of this event. We have been interviewed by all the local papers and the boys and just Jake have had their pictures taken for the program and other articles. Our Jake is quite famous around here!
I think it’s time to end this for now. We really appreciate all of you who still check-in on us. It’s really great to hear from all of you in Jake’s guestbook!
Love ~ Melanie, Steve, Jacob, Matthew, & Noah
Read Journal History
Hospital Information: Home
Links: http://cota.org Donations for Jacob's on-going medical care can be made to Cota for Jacob I.
http://www.mpssociety.org This is the official site to learn more about Jacob's syndrome and other MPS disorders.
http://www.cancer.duke.edu/PBMT Information on Duke's Transplant program.
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