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!

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.  

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.

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.

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!

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!