Posted 9/9/08
We had a follow up appointment with Dr. Paley 2 weeks ago and Jake is still on target with his progress. He is doing very well and tearing it up in his new wheelchair. Nothing gets in his way, including OUR feet. We are working very hard with physical therapy twice a day… it is challenging for both of us J . He is in a full leg brace with his leg extended straight out. He will have to wear the brace until he has surgery on the other leg in January. Now that his scars have healed he has been able to go in the pool and request the pool he does! We are scheduled to see Dr. Paley again in November.
We received word today that Jake is a “Sparrow”. He will be a part of the Sparrow Clubs organization, the only kids helping kid’s charity of its kind. www.sparrowclubs.org We are very excited for this opportunity and to be a part of this program. A special thank you to Paula & Dave Harkin of Portland Running Co. and Kerr Industries for their sponsorship.
Jake has his first day of preschool tomorrow!
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Posted 7/22/08
Back in Baltimore
Sidney, Jake and I arrived in Baltimore this past Sunday. The kids did great on the plane despite an hour 1/2 delay in Salt Lake due to bad weather in DC. Monday was a long hard day of clinic, cast removal and brace fitting. Dr. Paley said things look great and his hip, knee and ankle are in a good located position. Jake's incision on his hip and ankle look great...his knee will look better in time :). They cut the cast in half (like a clam shell) and he still wears it at all times except for therapy and or a bath. He was fitted for a full leg brace that he will get on Thursday, once we have that we can say goodbye to the cast.
Today was the first day of therapy, they are taking it slow we did measurements and a little stretching. Jake was very anxious but he did well, Sidney and I were very proud of him. We will continue with daily therapy and 2 follow up appointments on Thursday. He had his first bath today since June 11th, he loved it and did not want to get out. The highlight of our day was watching Jake rock out to Guitar hero with several other kids. It is so wonderful to have Sidney here with us! She is experiencing so much about life at 5 years old. Both of them continue to inspire me.
We have met some incredible kids and I will never forget these families.
We are scheduled to return in 6 weeks and then again in 12 weeks.
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Posted 7/1/08
The Big B and back again
Jake and I returned home from our second trip to the Big B Thursday evening. As you can see from the photos on the home page, Jake is in a new Dinosaur cast with his leg extended straight and a bar in-between. This cast change made traveling even more difficult, luckily we were upgraded (thanks to Todd & Molly). They removed his staples and took x-rays...hip,knee, and ankle look to be progressing well. Jake is doing extraordinarily well and has not had pain medicine for the past two days. He is so happy to be home although... he won't let anyone help him but mommy. I guess I can sleep when he is 10! We are scheduled to return to Baltimore in 4 weeks to remove his cast and begin physical therapy. We are scheduled for 3 sessions of therapy so we will be there for about a week.
Thank you everyone for your support, help with Sidney, Food, phone calls, emails and sharing Jake's story of strength. Mostly, thank you for seeing Jake the way Steve, Sid and I do, that means more to us than anything!
XOXO
Chellie, Steve, Sidney and Jake
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Posted 6/13/08
Baltimore....and more....and more
We are still in ICU and probably will be for another few days. Jake has a pain pump that he controls himself, when the green light goes on he pushes the button. He learned how to use it very quickly and says “mommy is it ready?” They split the cast open on each side yesterday; they do this to relieve pressure from swelling. It was not painful for Jake just very scary as the saw is so loud. It did help to alleviate some pain. We took new x-rays and Dr. Paley said everything was looking good.
The plan is to take his drains and epidural out tomorrow (Saturday). We were able to get Jake up today, for the first time. We put him in a wagon and took him to the play room. His spirits are very good today and he is getting his spicy personality back. Days are busy with arranging for equipment delivery, physical therapy future appointments, etc. We received his wheelchair today…looking forward to popping a few wheelies later.
Jake has been asking to see his Daddy and he will get to tonight. Steve arrives today and will stay through Sunday!
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Posted 6/11/08
More of Jake's Baltimore Adventure
Jake went into the O.R. today this morning at 8am. They let me go into the room while they were putting him under and I got to give him a kiss. They started the actual surgery @ 9:30AM. We have received several updates...just to say that he is stable and surgery is progressing. He is scheduled to be in surgery for 6-8 hours so we are hoping to know more by 5:30-6pm (3pmPST). My sister Kim is here by my side and I am so thankful for that. I spoke to Steve this morning and he told me how proud he is of me and that Jake could not have a better mom. Sidney is doing great and making pictures for Jake's room to send with Steve.
Thank you everyone for all of your prayers, emails, text messages, and LOVE. Please keep the emails coming as they are a great source of strength for me. Thank you and Jake is going to Rock this surgery!
XOXO
Chellie & Jake
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Posted 6/7/08
Jake's Baltimore Adventure
Jake and I eventually made it to Baltimore! It took us all day, 2 plane rides, delayed flights and a crazy shuttle ride…we put our heads on the pillow at 3AM. We met with the surgeon on Thursday and he has recommended that Jake have his hip, knee and ankle all reconstructed at the same time. This is a major surgical change from what we thought initially.
He is going to perform the surgery this Wednesday, June 11 th. The surgery is scheduled to take approximately 8 hours. Dr. Paley said that Jake’s specific surgery is a 10.5 on a scale from 1-10. He will have to stay in the hospital for 3-4 nights and see Dr. Paley on Monday the 16 th for clearance to come home. He will be in a spika cast for 6-8 weeks. The spika cast is a body cast from his waist down through his foot on the left side. After 8 weeks we would return to Baltimore to remove the cast and start therapy. The plan is to do the left side first and then do the right side 6 months later. My sister is coming out on Tuesday so she will be here for his surgery and Steve is flying out on Friday.
I have meet 5-8 other families who have already had the Super hip, knee and ankle reconstructions. I met a little girl today who was born without a femur bone and she is walking and doing great. Every family said they would do it all over again. They all say that Dr. Paley is a genius and the best in the country and one of the best in the world. HE BETTER BE!
As you can all imagine this was an overwhelming decision but one that Steve and I feel like is the right one for Jake. As I wrote to Steve in an email…
Hopefully we are paving a road for Jake that he can literally walk down! It has been tremendously hard for me but I feel very strong in my heart as I write this email to all of you. What breaks my heart is to look at Jake and see how happy he is and have to put him through this. He knows he is having surgery and is not happy about it…he cried. I know we will get through this together!
Jake and I had about 6 hours yesterday without Dr.’s apts. We went to the National Aquarium and saw a dolphin show and then took a “Ride the Duck” tour. ..Baltimore by land and sea. We had a great time! Jake is so happy and loves having all this time with mommy. I do too….
The Big B as I call it…is definitely not Portland but I am trying to stay positive and meet people (not from Baltimore J ). I miss Sidney so much it hurts…but I talk to her about 3x’s a day.
I know how many of you are thinking of us and it really helps to keep me strong! Thank you everyone for your support. Please feel free to email me as I am checking it daily. Please forward this…sorry if I missed you.
Chellie and Jake
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Posted 5/30/08
Post Surgical Update:
Thank you everyone for your thoughts and prayers for Jake and our family! As most of you know he had hand surgery on Wednesday April 23rd to separate the fingers on his left hand. The surgery was scheduled to be an hour 1/2 to 2 hours...he was actually in surgery for 4.5 hours. The surgeon told us that it took some time to get an IV and the grafting of the skin between his fingers was extremely tedious. We stayed overnight at Emanuel to ensure that his pain was under control and came home Thursday afternoon.
At the second post-op appointment Jake had his cast changed and we were able to see his fingers separated for the first time! It was hard to see his fingers as they were very raw and swollen. They have a long way to go in the healing the process but it was so great to see them separated. After the cast change he had to have his stitches taken out from the graft site in his groin. It was less than pleasurable for both of us...well…all 3 of us who had to hold him down and of course Jake. The skin grafts are quite extensive but he is a good healer! The Dr. took a Polaroid of his fingers so I could show Steve, Sidney and anyone else who does not have a week stomach!
Steve and Sidney had donuts waiting for Jake when he got home... I tried to give him "Arnica", a natural remedy for pain control; needless to say he chose the more traditional medicine of a chocolate sprinkled donut! His mood improved considerably ;)
Overall he is doing great and continues to show his amazing spirit and strength! He was scheduled to be in a cast for approximately 6 weeks and then soft bandages. He is healing way ahead of schedule he was able to get out of the cast in 2 weeks and then just wear soft bandages for 2 weeks. At his 4 week post-op he was able to take off all bandages and his fingers look great! He loves having them separated and will count all 5 fingers for you!
Sidney could not love her brother more!
Thank you all for loving Jake for who he is. We are so grateful for all of our family and friendships...
XOXO
Chellie, Steve, Sidney and Jake
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Posted Spring ‘08
Surgery update:
The time has come to separate Jake’s fingers. He is scheduled for surgery on his left hand on Wednesday, April 23rd at Emanuel Children’s Hospital.The surgery is a “simple complete syndactyle release”, translation…his surgeon will separate his middle and 4 th fingers. They will have to do a skin graft in order to have enough skin to cover the fingers once they are released. They will either take the graft from the inside of his elbow or his groin. Jake should only be in the hospital one night and then be able to come home. He will be in a cast that extends above his elbow for 6-8 weeks. Hopefully he will recovery with Godspeed and be ready for round 2 on his right hand.
We have been talking to Jake about the upcoming surgery and telling him that his fingers are going to be opened by a Doctor. I say Dr. because at one point Sidney, his loving sister, tried to open Jake’s fingers with scissors. She did not get very far but there was some blood involved. To date, he is not in favor of the idea…he says “no fingers shut”! Our hope is that he will come to realize that Sid is not the one performing the surgery. We are excited (well not Jake) to have this done. We really like his hand surgeon and know Jake will like the end result of being able to move all 5 fingers independently.
