10 Fingers

Well Jake fans, it was only a year ago that I had to use every ounce of self control in the NICU to not attack the plastic surgeon who upon my meeting with him, said oh he'll have four fingers but so did Mickey Mouse. Oh and he also said it would take 10 surgeries. Instead we re-channeled our outrage and found a better dr. I guess I should be thankful to that insensitive surgeon who led us to Dr. Upton. Today 1 year later, Jake now has 10 fingers and we couldn't be happier. A visit to Children's hospital allowed for Jake to get his casts off and some splints made and we were pleasantly surprised his fingers looked much better than at this same point last time around. Little Jake went back to his favorite thing, giving us five. We also me with his craniofacial surgeon to make sure that these bumps on jake's forehead were normal and nothing we should be concerned about. He indicated that they are screws holding some pieces together that will dissolve over the course of a year. So a great day for Jake and he can go back to what he should have been doing all along just being a kid and playing. Thank you all who have helped us get through this challenging year, we look forward to some normalcy and smile knowing surgeries and hospital stays are on the shelf for a few years.
Love,
L & S

A Bday Photo

Happy Birthday

Yep today marks a year for Jake and Luke. It's a big week. They had their first haircuts over the weekend, their bdays today. Then Thursday Jake gets his casts off. We can't wait and neither can Jake.

Jake wanted to let everyone know he's ok

Jake Update

Overall, Jake has been doing really well since coming home. He still has bouts of pain and we have to use his pain medicine to help regulate that but much of the day he is filled with smiles. He hasn't let the casts slow him down and wants to go back to crawling and standing. Interesting enough today he figured out a way to use the elbow of his cast to spin his favorite toy. We can't wait till he gets his casts off and see his five fingers and then puts them to use. Hopefully the pain will subside and Jake will soon be back in action on all fronts. He makes us laugh on an every day basis and inspires us with his toughness. Luke better be careful down the road as I think Jake will take him out if he's not nice.

Upcoming Events
Jake and Luke's 1st BDAY May 27th
Cast Removal May 29th

Jake Hospital Photos

Home Sweet Home

Jake was discharged from the hospital on Monday morning in Boston and he was all smiles really itching to get out of the hospital. Few routine examinations and paperwork and off we went. With time to spare before our flight we decided to hit Sam's favorite place in Boston, Newbury Street. A long row of shops and restaurants. It was nice out and Jake seemed to like being in the fresh air in his stroller. Funny thing happened at lunch...We were eating lunch and all of sudden clank and I couldn't tell what was happening as the people sitting next to us looked scared and Sam couldn't stop laughing. Yes he did it again. lil Jakey kicked off his other cast. I told you the doctors underestimated him and I am sure he grew tired of having heavy casts on all his extremities. The people next to us must have thought it was a blooper show as its not every day you sit in a restaurant and watch a cast go flying across the room. Just glad Jake didn't hit anyone with it. We bandaged him up to the best of our ability and now he at least has his feet covered without heavy casts. Before long it was off to the airport to end this leg of the journey and head home. Upon entering the plane we were thrilled to see our favorite stewardess Penny who has been on three of our Boston flights and knows Jake and likes to take special care of us. We saw her on the way in and now she was on our flight on the way home. She brings us cookies and is very attentive to Jake which is always nice on a long flight. The first 40 minutes of the flight had us really worried. Jake was really irritable and wouldn't stop crying and we thought uh oh what do we do and this flight is going to be a long one. But Jake settled in and decided to put his best behavior on by crashing for the remainder of the flight. We welcomed the peace and quiet and were glad Jake got some rest. Gparents Dan and Carol brought our car to us at the airport so we could drive home and it was an unbelievable feeling to walk back in our front door. Jake immediately woke up and was thrilled to see Rosa. He was all smiles and giggles truly happy to be home. This morning was even better as we got to see Luke after 6 days and he shrieked when he saw Sam and was all smiles playing with us and his brother. It is nice to be home with both boys. The next few weeks will bring some discomfort and irritation to Jake but in the end we have made it. We have survived this tough first year facing three surgeries on our young son. He has fought through all of the procedures with the tenacity of a bulldog and his resiliency is something I wish I could bottle and sell. We are comforted knowing that all year long we said let's just get to their first bday when all the surgeries will be done for a few years. We have arrived at this point and let me tell you its a nice place to be. I will update the blog with some photos of Jake soon and look for more updates and in a few weeks the unveiling of Jake's five fingers.
Love,
L&S

recovery 2

Well we found out Valium works as jake slept from 1130 to 4 and slept soundly enough to scare Sam into poking him to make sure all was good. That led to him being up till around 7 and I took over for Sam. Of course only after giving her mothers day cards. Jake slept in my arms most of the morning and he soon had his central line taken out and he was removed from all wires. Jake switched to all oral pain relievers. He started smiling this am and a stroll put him in good spirits. He visited with his new friend joyelle who saw dr upton as well. Its been nice to meet this other family and get a glimpse of what to expect in the future surgeries. Jake is back to his normal self and has played with us today and is being discharged tomorrow am. Dr upton came this afternoon and we discussed jakes progress. Good news being he has family in california and will see jake in la for progress checkups over the next few years. Today has been an interesting day for Sam spending mothers day in the hospital with one child and away from our other but I know seeing jake feel better is the best gift and trumps the massage I got her. All good news with prob just limited pain for jake more discomfort from the casts than anything. We head home tomorrow happy to put a close on this tough year of three surgeries for jake. We smile as we gear up for an end to this after a few weeks and we welcome their 1st bday on the 27th. Here's to an easy plane ride tom night.
Happy mothers day and special thanks to their godmother amy and gparents dan and carol who have watched luke for us.
And stacey thanks for leaving your family to lend support here to us in Boston.

love
l&s

Recovery-The Day After

Jake had a rough night leaving mom sleepless for most. His discomfort continued in the morning when I took over the shift. Jake had some pretty violent pain episodes leaving him to cry and kick and wave his arms hard to do when they are all casted. The morphine is administered by a machine that locks the dosage and time intervals so once it hits a certain point its hard to catch up with the pain control. One outburst was so forceful that Jake actually kicked his cast off his foot. Yes He kicked his leg up and bam there flew the cast. The Dr.'s could not believe he was able to do that. They obviously underestimated our Jake. Anyway, I began working on them to not replace the cast and hoped we could settle for just bandaging it. This worked so his right foot is now wrapped in a bandage with the left still in the cast. I am working on the staff to have them take off the left cast as the bandage approach looks much lighter and easier on Jake. They have relented yet but they may underestimate my persistence.

After a little while the dr.'s and nurses agreed to let jake combine Valium doses with his morphine. This helped get the pain under wraps and for a little while and it appeared that Jake forgot where he was. He looked over for the first time and we saw life in his eyes versus the drugged stupor and he looked up and smiled and was happy. This usually takes till Sunday to happen so I was very excited that Jake was back. But then he realized where he was and he started to cry and grow restless again. Instinct dictated that he wanted to be held and thats what happened for the next few hours. Jake never slept better and it calmed him greatly. By 12ish, they informed us that he could move out of the ICU and down to the regular floor. A great sign for Jake and it was nice to leave the ICU. Once in the regular room we hung out with Jake in our arms for most of the day as he really responded well and has taken less medicine over the last 12 hours than expected. He likes the comfort of his parents arms and we're happy to give our lil boy what he needs. We ran into Joyelle the girl we mentioned running into a few days ago who also has apert. We chatted with her family throughout the day and Jake even visited his new friend as we took him for a stroll around the floor. Overall, Jake is doing well considering his pain level and seems most happy in our arms. Hopefully tonight will be ok back in his bed and Sam can sleep some.
For those parents out there, we can't tell you how hard it is to watch your child go through this ordeal and of course with us its been multiple times already. Each time he amazes us as we see him battle through it all and persevere. Jake is a hero of ours and we are in awe of him as we watch his courage and strength.
Kiss your loved ones.
More tomorrow
L&S

Hand Surgery #2 Day 1

Bilateral syndactyly release and bilateral toenail bed surgery. That's what awaited Team Jake today.

We started bright and early today arriving at the surgery waiting area at 6am. After a few quick vitals we settled into the waiting room before they led us upstairs. Once there we sat in a temporary bed/surgery waiting area. Soon the Dr.'s arrived and we discussed the strategy. Dr. Upton thought Jake looked great and was very pleased with how his hands looked from the last surgery. We discussed the plan and soon we realized that the correction to his toenails was more complex than we thought but worth doing while in the OR. After this surgery the Dr. let us know we would just have to take photos of his hands and xrays once a year to keep him updated but Jake probably won't have to come back to boston till he's around 4 or 5. Jake was in great spirits smiling at the Dr. and giggling. We felt awful knowing what he was about to face. Aunt Stacey made it up to kiss Jake goodbye and I brought him into the OR. I held him as they adminstered the anesthesia and then left my sweet boy in the good hands of Boston's most qualified.

Long day of waiting and finally around 2pm we met with the Dr. They released his fingers to give him 5 fingers while also increasing the webspacing between his hands. That was more than we thought they were doing but helpful for longer term hand function. They used skin from the previous donor site in his groin to finish the fingers. The toenail procedure was also done to alleviate ingrown toenail pain that many had informed us is a major issue with the Apert childrens' feet. The surgery went great but the Dr. had to put Jake in 4 casts yes both his hands and feet are in camoflauge color casts (Jake's choice) This is going to lead to a great deal of discomfort for him even as the pain subsides. Jake was pretty sad and cried hard so a decent amount of morphine has been administered to handle the pain. I just left Sam to stay with him tonight and he was resting peacefully. I am sure a tough night awaits Jake and Mom and I will be at the hospital early to relieve her. It is so sad to see our boy in so much pain and hear him whimper but the only thing that gets us through is knowing this is it for awhile. The last of 3 first year surgeries and then a break will await us. We hope tomorrow brings the healing process for Jake and we can alleviate his discomfort the best we can.
Think soothing thoughts for our lil guy, he once again is fighting and needs our collective strength.

Love,
L&S

Boston Day One

Well it all started today. Seemed deja vu as we repeated our steps from November. We had the pre-op today at the hospital and everything went great. Jake is all set for a 7:30 am surgery tomorrow with us needing to be there at 6am. In the waiting room we ran into another family with a girl who had apert who was 5. She was seeing Dr. Upton as well and was having her thumbs straightened. her hands looked good and it was nice to talk to her family about what they have been through and I think nice for her to see little Jake. Stacey came in and after the pre-op we walked around Cambridge and the Harvard campus. We wanted Jake to feel at home at his future college! jk but the campus was nice and walking around was fun.

We were starting to get anxious about tomorrow and we received a very important phone call tonight. Sam is 13 weeks pregnant and we haven't told anyone as we were awaiting the results of the CVS test. The baby was tested for Apert and all of the usual things and everything came back with flying colors. Better News Jake and Luke will be big brothers to a little GIRL. Very positive news right before Jake's surgery. #3 will be joining us in early Nov.

Off to bed as we have to be up early. Think of Jake tomorrow, he needs all of your strength.
Love,
L&S

Off to Boston

4:30 am PST and we're off to Boston for Jake's hand surgery. Pre-op Thursday and Surgery Friday am. We'll be updating the blog daily.
Here's to what we hope is an easy plane ride.

Here We Go Again

Well its time to finish up this tough first year and take Jake to Boston to have his second hand surgery. Although anxious and nervous, it is exciting to reach this surgery that will give Jake his five fingers. This surgery will also separate his toenail beds to avoid them growing into each other and causing problems. This will mark the third of three tough surgeries Jake has faced in his first year. The good news being that Jake won't have as major of a surgery for five years or so. We will be updating the blog daily from here on out so please check for updates on Jake's condition. Keep Jake in your thoughts.
L & S