----------------------------------------------------------------------------------------------------------------------------------------------------

Posted 1/5/09

Jake’s last check up in Baltimore in November went well overall. Dr. Paley evaluated Jake’s left leg and determined that his hip and ankle were doing great. Jake’s hip is stable and he has a functional hip for the first time in his life. His knee has NOT slipped back to a dislocated position (as with past surgeries) but was not as far along as he would like to see in terms of knee flexion. Despite intensive daily physical therapy and pool therapy every Friday, we still have a lot of work ahead of us.

To increase his knee flexion the PT team in Baltimore created a custom knee flexion brace. Jake wears the new brace 5-6 hours a day with his knee in a flexed position. We have the ability to dial the appropriate amount of flexion needed each day. At night Jake is put back into a different knee brace that puts his knee into full extension. The reason for the back and forth is so that Jake can achieve 90 degrees of knee flexion without losing full extension of his knee.

As you can imagine Jake is not a big fan of either brace and puts up a pretty good fight. We have employed many different diversion techniques to keep his mind off the discomfort. These include, but are not limited to; movies, candy, playing the Wii, candy, throwing the football (really hard), did I mention candy… and lots of loves! In addition to the leg braces Jake is also wearing a shoe lift on his right foot, it is about 2 ½ inches high. This enables him to put his right foot flat on the ground and gives him a solid base of support. Once his right leg is surgically repaired he won’t need the lift. Yes he is man enough to wear high heels!

THE REALLY BIG NEWS IS:

Jake walked for the first time on December 30th. He stood up, and with great caution, walked across the family room to me (about 7 feet). It took him a long time to get to me but it was worth the wait. Steve, Sidney and I were all cheering him on…it was a moment none of us will ever forget! We can’t wait to see what he can do once the other leg has been surgically repaired.

Originally the plan was to fix Jake’s right leg in January of ’09 that has been delayed. Dr. Paley would like to see more flexion in Jake’s knee before he does the other side. In addition, Dr. Paley is leaving Sinai Hospital in Baltimore and relocating to a new Children’s hospital. We do not know for sure where that is but rumor has it that it will be in Florida! We have one more check up with Dr. Paley in Maryland in February and then we can say good bye to the big B and sunny Florida here we come. Tentatively Jake will have surgery on his right leg in June of ’09.

Overall he is doing amazingly well and uses his walker/wheelchair to get around most of the time. He still loves for his mommy to carry him but “heavy D” (as I refer to him) is weighing in at 38lbs. so those days are numbered. At our last check up Dr. Paley asked if Jake was walking…I had to say no but at the next visit Jake can answer that for himself!

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy".

~ Martin Luther King Jr.~

Thank you so much for your love and support.
XOXO
Dering Family

---------------------------------------------------------------------------------------------------------------------------------------------------
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!
---------------------------------------------------------------------------------------------------------------------------------------------------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.
---------------------------------------------------------------------------------------------------------------------------------------------------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!
---------------------------------------------------------------------------------------------------------------------------------------------------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!
----------------------------------------------------------------------------------------------------------------------------------------------------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!  
----------------------------------------------------------------------------------------------------------------------------------------------------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.
----------------------------------------------------------------------------------------------------------------------------------------------------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...
---------------------------------------------------------------------------------------------------------------------------------------------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.
--------------------------------------------------------------------------------------------------------------------------------------------
Posted December ‘06
We want to recognize the North Eugene High School Girls Soccer Team and my best friend Brandy. This is an extraordinary group of girls who have taken a special interest in Jake. (link to article) They held a dessert auction in honor of Jake and raised over 9,000 dollars. Of that money they decided to donate 6,000 dollars to Jake’s foundation. We are so thankful for everyone who came to the auction and generously and loving raised their paddles to support Jake and our family. Brandy is not only their coach but more importantly their mentor. She is taking the time to teach these girls about what is truly important in life. It was an incredible night and one we will never forget! THANK YOU. Two days after the auction Jake was admitted to the hospital with a nasty case of RSV and pneumonia. That week our daily routine consisted of getting up, throwing up, controlling his fever and then heading to the Dr. He was working so hard to breath and struggled at home for days before we were admitted to the hospital. He had one of his favorite nurses Amy and as always most favorite Pediatric Doc, Dr. Julie. Thankfully we were released a few days before Christmas. We spent Christmas at home with Grammy and Grampy love and Aunt Kimmy, Uncle Greg and new baby Max. Jake had a great day…he really loved ripping into his MANY gifts. It was a wonderful day and we were so grateful to be home together as a family. My family is the greatest gift of all!
--------------------------------------------------------------------------------------------------------------------------------------------
Posted October ‘06
Jake turned 2! It was a gorgeous fall day, the sun was shining and our son was 2. We want to give a big shout out the Tualatin Valley Fire Department Engine # 34. They made a special appearance on Jake’s birthday. We painted pumpkins and ate Grammy Love’s home made lasagna. Then we heard the rumble of the Fire Truck. The men of Engine #34 rolled up and let all of Jake and Sidney’s friends climb aboard the truck. They brought gift bags for each of the children and stayed for lunch and presents. One of the firefighters there that day was present on Jake’s previous 911 call. He commented on how great Jake looked; healthy, thriving and strong! He in part saved Jake’s life that day. Our closest family and friends were present on Jake’s Birthday. They are constantly giving to our family emotionally, spiritually and financially and we are so honored to have family and friends like you. The Rocking Rabbit is ours! The insurance company finally determined that the “Rabbit” was deemed medically necessary. (link to article) We went through 5 appeals and the next step was to have a teleconference with them. I received a phone call 2 days prior to the scheduled teleconference stating that the “Rabbit” was approved. I would have gone through 50 appeals to get the Rabbit! I can’t express the emotions I feel when I see Jake move independently in his Rabbit. There is so much that I wish for him and this was definitely one wish come true. Jake enjoys his Rabbit but like all 2 year olds, he does it on his own terms. Sidney and I have taken him to the grocery store and Costco and he rolls on his own time. He does a great job and is definitely the center of attention. Sidney is amazing with him. She wears her heart on her sleeve when it comes to her little brother. We stopped in for a hot dog at Costco and those of you who know me, know that was a big deal.  
--------------------------------------------------------------------------------------------------------------------------------------------
Posted September ‘06
Jake’s physical therapist suggested that we cast his feet again to gain more flexion in his Achilles tendons. His orthopedic surgeon agreed and Jake had casts put on for 6 weeks. We had them changed every 2 weeks and Sidney got to choose the color. The casts went from blue to purple to red. The red color coordinated with his Superman themed birthday party and lobster costume for Halloween. Jake’s only frustration was not being able to take his baths with his sister. He truly handles things with ease and a sense of calmness. I continue to learn this lesson from him.
--------------------------------------------------------------------------------------------------------------------------------------------
Posted August '06
We had a through evaluation of Jake’s hips at Shriner’s Hospital in May. This was our third evaluation of his hips and discussion on how we should move forward. The question being, should he have surgery to relocate his hips? All three evaluations are leaning toward no. The reason being is that Jake’s hips are the most severe dislocations any of these three surgeons have ever seen. In addition, he has very high riding dislocations. This means that his hip joint would have to be totally reconstructed, more bone would need to be cut off his femurs, and there is no guarantee that his hips would stay located. Steve being the optimist thought it was good news. He said he won’t have to suffer through two grueling surgeries, spika casts, recovery and painful therapy. I was not so encouraged. The surgeons say “kids with dislocated hips can walk.” My fear is that there is no comparison to Jake’s case…but the bottom line is we believe he will walk and I know he does too. The next surgery for Jake will be to separate his fingers on both hands. This surgery will be in the spring of ’07. They will do one hand at a time and he will be in a cast for 6-8 weeks. They will take a graft from his groin to give him enough skin to use between his fingers. At present Jake does great with his hands and fingers. Most people don’t even notice that two of his fingers are together and neither does he. Jake will probably need another surgery on his knees to gain more flexion. That surgery will most likely take place in ’07 as well.
--------------------------------------------------------------------------------------------------------------------------------------------
Posted July '06
JAKE STARTED CRAWLING! He is “army” crawling all over the place. We knew he could do it but we thought it would take a lot longer. We work on it at therapy and at home but he does not like to be on his tummy at all. Sidney and I are always crawling around to encourage Jake. I guess what he needed was someone his own age and size to show him how. We want to give a big thank you to Avery Wormdahl (my best friend’s daughter) for showing him how it’s done. They played together on July 15 th and July 17 th Jake started crawling. I cannot tell you how amazing it is to see Jake move for himself…it is something I have wished for everyday since he was born. Here is an update on the Rockin Rabbit (mobile stander, see home page). I have done 5 appeals with our insurance company and been denied each time. The next level of appeal was for me to do a teleconference and present Jake’s case. They mentioned to me that they had not done a teleconference in quite some time; they said “people don’t usually do them.” I scheduled mine for July 13 th @3:30pm. The Insurance Co. called me on July 10 th and said that they have overturned Jake’s appeal and they are now approving the Rabbit. So Jake is getting the Rockin Rabbit, it should be here in about 3-4 weeks. YEAH! Jake is also doing a lot of sign language with us. He signs for “grampy”, “grammy”, “more”, “changing table”, and “all done”. We are so thankful for an amazing summer of good health and accomplishments. Thank you again for all of your thoughts, prayers, and love…we definitely feel them. We used to say Jake is doing great today…we now say he is doing great everyday!
--------------------------------------------------------------------------------------------------------------------------------------------
Posted June '06
This has been a great summer! We have not been in the hospital since our scheduled surgery in May. Jake has been able to sit on his own for some time. His challenge has been getting up to sit from a lying down position. Well challenge no more, Jake can sit up all on his own. On June 27th, I walked in his room and there he was sitting up in his crib with a big smile on his face. He has to work hard to get up but does not want any help. Jake is talking a lot, much more than we can understand. New words are; knock knock, row, row, uh oh and drake no bark. He blows kisses like you can’t believe and once he starts we like to say he has his automatic kisser on. June has been great but we have had an even better July.

May '06

Our last hospital visit was a scheduled one. On May 18 th, Jake had a minor surgery to remove his central line. The procedure was scheduled to take an hour but there were complications. The line was stuck, the surgeon told me this happens in 1 in 1000 cases. They discussed a more invasive procedure of removing his collar bone to get at the line. In the end they did not have to resort to that procedure and successfully removed his line. Two hours later he was put into recovery and very happy to see his mommy. He was very sore but recovered quickly and we were able to take him home the same day. After three days he was able to take that long awaited bath in the bathtub instead of the kitchen counter…needless to say he loved it. We are now done with weekly home nurse visits to change his dressing, pushing saline and heparin through his line daily, kitchen counter baths, and the huge fear of infection.

January ‘06

Our fabulous 9 week stretch out the hospital has ended.  We have had to rush to the Emergency Room twice in January.  On both visits
Jake was very sick, vomiting, high fever and not breathing well.  The great part about those visits is that we were not admitted to the hospital.  He was treated and we were able to come home.  Thankfully he still has his central line; it makes things much easier on everyone.  Jake is feeding himself with a spoon and doing a great job, he rarely misses.  

December ‘05

Jake spent the remainder of November and all of December at home, he was healthy and he was thriving.  We feel like he has been on hold for the past year.  Well let me be the first to tell you he has shifted gears and is letting himself be heard (which is not easy in our house).  He is quick to blow raspberries, stick out his tongue and laugh hysterically.  We experienced an amazing Christmas!  Jake slept in on the big day, then he opened presents, took a nap, opened some more presents and then he slept some more…a perfect day!  We had a check up with the orthopedic surgeon to monitor the progress of Jake’s knee surgery.  They are happy with his progress to date but still very concerned about his knees.  The goal is to continue to get Jake weight bearing and strengthen his legs.  We have a new stander for him (see home page) he enjoys being in it.  Sidney and I and a couple of other 3 year olds were dancing so we put Jake in his stander.  He was rocking out so much he almost knocked himself over (now a 10lb. weight is in the bottom of the stander, music… vintage Kool & the Gang)!    

November '05

We returned home from the hospital on November 2 nd, not really how we wanted to start the month. Since returning home we have stayed home and Jake is looking and feeling great. We are being as preventive as possible; with flu shots, synergist shots, lots of vitamin C, probiotics, saline flushes up the nose, and all the fresh fruit and veggies he can pack away in those cheeks.

WE HAVE SO MUCH TO BE THANKFUL FOR THIS THANKSGIVING !

Last year at Thanksgiving we almost lost Jake. You look at him today and sure you see the scares on his legs, feel his central line when you hold him, hear his loud breathing and notice his arms don’t extend all the way. But what we see is the most amazing, determined, beautiful and happy baby who will not give up on life! What a ride it has been and if you are not living life on the edge you are taking up too much space… that is what we say anyway.

Jake’s physical therapy is going excellent. We are really pushing him to bear weight on his knees and legs. He is able to tolerate assisted standing and extensive range of motion stretching. He actively does therapy for 50 minutes a session twice a week. Then we do additional therapy at home daily, Sid is my PT Aide. There is not a set timeline when Jake will walk, but we are making progress everyday. He will eventually progress to a gait trainer (similar to a walker). His little legs are getting stronger and Sidney can’t wait to be chased by her brother. Jake is now putting his hands over his eyes and playing a lighting fast version of Peek a Boo…it is adorable. He is saying Ma ma Ma ma Ma ma and Baba, Baba, baba (bottle) a lot of other beautiful baby babble.

Thank you so much for checking in on Jake’s progress. We receive so much strength from your connection to Jake. Continue to send us e-mails and please share his inspirational story with other people.

Thank you to everyone who has purchased a bracelet. We are glad that you can have a little piece of Jake with you.

October '05

JAKE’S BIRTHDAY WAS AN AMAZING DAY! We were released from the hospital the night before (with a bit of persuasion). It was with great relief and excitement to be able to celebrate Jake’s first year of life. We were honored to share his birthday with our support system of family and close friends. Some Doctor’s said Jake would probably not live beyond 5 or 6 months, well he is living strong today! He absolutely loved eating his cake and putting his face and fingers in it. Our special friends Tom & Mary Lewis graciously hosted the party and what a party it was. It was the best day we have had since Jake was born.

In the last update we said Jake’s central line was removed well…we got a little ahead of ourselves. The central line has not been removed; the Doctor’s want to keep it in to get us past this flu and cold season. I must say, it has been very helpful to have on our recent trips to the ER. The alternative would be trying to get an IV in his head and that is not fun for anyone. So Jake is still being bathed on the counter in the kitchen. Sidney refers to his baths as Sponge Bobs.

Sunday the 30 th of October, Jake was not feeling well and his Doc called to check in (what service). He heard his fast respirations over the phone and said go straight to the ER.  We were there for about 4 hours and the ER doc, (who I now know well) said I want to watch him a little longer.  To my reluctance I said ok...I am always working her to let us go home instead of admitting us.  He woke up from a short nap on the gurney and looked as if he was starving for air.  I asked the nurse to turn the light on to check his color and knew something was terribly wrong, and then he turned blue and stopped breathing.  I grabbed the oxygen, turned it on and put it on Jake. He resumed breathing but obviously was not doing well. The Doc came in and said you are going to the P ICU.  Then she said, oh my gosh what if I sent you home and this would of happened in the car.  Don't always work me to go home! After she finished yelling at me, we took a ride up to the Intensive Care Unit. Jake spent the night there and then two additional days on the regular pediatric floor. Three days later we came home. I did put him in his adorable Halloween costume, the happy caterpillar! Grammy Love made the costume and it was going to get it’s time. The caterpillar took a ride in the wagon attached to his oxygen and all.

September '05

We finally made it home and Jake was up every 2 hours at night for approximately 2 weeks. We tried everything to make him comfortable, and you could see he was trying his best to be happy. At the end of those 2 long weeks and many phone calls to the Dr. we went in for a cast change appointment. What was scheduled for a routine cast change ended up being a 5 day hospital stay. Jake had a massive staff infection in his right leg and they drained 30cc’s of fluid from the infected area. We did not know there was an infection because it was under the cast. Jake did not have a fever and was eating and drinking yet he was miserable most of the time. We went home with a central line and IV antibiotics for a month. Once the infection was under control we like to say that Jake got his “MOJO” back! He smiled at everything and if we could all laugh as easy as Jake, the world would be a better place. Unfortunately the happiness did not last long; Jake got his first cold of the season. It ended up being a quick trip to the ER for some IV steroids and then about a week of not a lot of sleep for Jake or Mom.

In the meantime, we have been back in for x-rays and cast changes and the surgery looks to be a success.

August '05

The “open reduction” was performed and the Dr’s felt good about the outcome of surgery. We went into the recovery room to see Jake and were very excited to see his legs cast into flexion, (his knees were bent the right way) this was a first! Unfortunately, Jake was in unimaginable pain and discomfort! We struggled to get his pain under control in the hospital. We were scheduled to stay 3-4 days post surgery, and we ended up spending 10 days in the hospital! The second night Jake was placed in the ICU to try and manage his pain. The following day he returned to the floor on a pain pump and at best, it took the edge off. Many days later Jake was put on a schedule of oral pain medication and taken off the pain pump. After 10 long days and nights we returned home. Jake was in casts on both legs up to his hips.

July '05

Jake is doing great! He had the first of two knee surgeries on Wednesday July 27 th. Due to both of his knees being severely dislocated, we had to make a difficult decision on the best medical approach to relocate his knees. We have been discussing this procedure for months with many pediatric orthopedic surgeons. The decision was made to go with external fixators preceding an open reduction. The surgeon put external fixators on both of Jake’s knees. These devices are to act as traction to stretch his knees into place for the next surgery. He will wear these for 2 ½ weeks until the open reduction surgery. He has tolerated them great so far. There are screws on the fixators that need to be turned ¾ of a turn daily to provide a stretch. Steve offered to do that… and Jake just smiles at his daddy. The pin incision sites need to be cleaned daily as well. Chellie is handling that task and Jake is miserable for those 10 minutes. That is why she is the Mommy! Believe it or not he has turned over on to his tummy with the fixes on and it doesn’t seem to phase him…what a strong little man!

June '05

We have been hospitalized 30 times in Jake's 17 months. Most of these admissions were due to respiratory distress and at times respiratory failure. Jake has been intubated and in the pediatric ICU for 4 of those visits. He has had 3 planned surgeries; bilateral heel cord lengthening for his club feet, external fixators on his knees and bilateral open knee reductions.

Jake’s first admission was by far the scariest… it was November and he was just 4 weeks old. We were driving in the car to see Aunt Kim for Thanksgiving and Jake stopped breathing. I pulled him out of the car seat and he was completely blue. I started to give him mouth to mouth and we raced to Meridian Park Hospital. They immediately started CPR and then intubated Jake and called Emanuel transport team. Jake was admitted to the ICU where he spent a week recovering. We were very lucky!