Monday, October 24, 2011

post neurologist appointment

i know so many people have been waiting to hear what is going on with jacob. in a lot of ways i want to share the details because that means that people will be more understanding of how much all of these tests have consumed our thoughts and people can be praying for him and us. on the flip side if i actually write this then i know it is going to feel more real....more permanent....

i am an open person. i share stuff. i don't like to bottle stuff up and i like to talk it out with people. i like to know what is going on with the people in my life (like REALLY going on, not just the surfacey stuff) and i like to be open and honest with people about what is going on with me. sometimes it's not so pretty. this is one of those times. this is tough stuff. this is when i feel vulnerable. this is SO difficult because it's our son, it's our helpless son.

jacob has been arching his back and stiffening up for a long time. it got really bad around the 6 week mark. around 12 weeks our doctor noticed that jacob's arms shake (jitter, have a tremor....however you want to say it) and asked us if we had noticed that before. yup, we had. we thought nothing of it because his chin had done a similiar thing and we were told that he would grow out of it and that it was just having to do with his nervous system not being completely developed. his chin stopped quivering and we thought his arms would too. the doctor asked us to come back a month later. we came back. jacob was still doing the shaking, hadn't grown out of it yet. our doc sent us to a pediatrician to have it evaluated. we saw her 3 weeks ago today. she was concerned about it but was more concerned with how stiff he can be. when you hold his hands when he is lying on his back and try and get him to sit up he stands. he gets stiff as a board and stands up. she sent us for blood work and arranged for him to have an EEG. 4 days after his appointment he had the EEG! we saw the pediatrician again and she told us that the EEG showed no seizure activity. great news! next she referred him to a neurologist. today we saw the neurologist at children's hospital.

if i am honest i went into the appointment today kind of expecting him to say that there is nothing wrong with jacob and that he will grow out of this, it's just him temperment....etc etc. that is not what he said. he told us that jacob's high muscle tone indictates 1 of 2 things. option 1 is that he has some kind of brain injury (most likely this occured during labour and delivery. he had a low baseline heart rate during my labour and the neurologist is guessing that the amount of oxygen going to jacob's brain decreased and caused cells to die, and brain cells do not grow back). option 2 is that he has a metabolic disease.

brain injury is a better option and the option that the doctor thinks is more likely. what would this mean for jacob? it would mean that he has cerebral palsy or something like that. because jacob is developing "normally" otherwise the doctor thinks that if it is cerebral palsy it is a mild case. he may have some trouble learning to walk or run or have some issues with fine motor skills but with physiotherapy and occupational therapy he should be able to do "ok". he apparently won't be "completely normal" (man, those words stung). we were told that any skills jacob learns he will not lose.....this is different if it is a metabolic disease.

a metabolic disease (from my understanding) is degenerative. he could learn a new skill and lose it later. the fact that he is developing "normally" now could mean nothing because he could get worse over time.

how do we find out which one it is? an MRI will conclude whether or not he has a brain injury. if he doesn't then he will most likely need a spinal tap so the doctor can find out which metabolic disease he has.....or at least i think that is what the spinal tap is for.

when the doctor said "i don't have any good news for you today" i felt like i couldn't concentrate on anything he was saying. i was doing everything i could not to bawl my eyes out. i tried so hard to listen but i only caught some of it. between steve and i we have attempted to piece together the little we know and now have a TON of questions.

the next step: blood and urine tests and we wait for a call from radiology at children's so jacob can have an MRI. the wait is 2 years. the neurologist is going to push for jacob to get in within 6 months because he is so young and because the doctor needs to know if it is a metabolic disease so he can treat jacob as soon as possible. we are also working with a fabulous consultant from langley child and infant development and we are learning news ways to help jacob.

we were told that he HAS one of these 2 things.....but we trust that there is a THIRD option. we are praying that he will not have a brain injury OR a metabolic disease and that he will just grow out of this! we know that God is bigger than it all. we know that so many people are praying for him and us already. we appreciate it SO much!!! thanks for your prayers, thanks for your notes on facebook, thanks for thinking about us and wishing us well. we feel surrounded with love and we are seeking peace of mind big time! the last thing we want is to stick jacob in a box and expect him to struggle. we don't want to think about the worst case scenario. we are praying for the best case scenario (whether it is medically possible or not)!

jacob has THE BEST personality EVER!! he is goofy, he smiles at pretty much everyone. he is super social and has the best smile and laugh EVER! he thinks it's hilarious if you yell "boo" at him or if you whisper to him. he is ticklish and can not get enough of his sophie giraffe. we are blessed to have him in our lives and love him more than we ever imagined was possible. thanks for being there to support us through this and for loving our son too (we know that so many of you do)!!

Saturday, October 15, 2011

my grandpa's eulogy

my grandpa passed away on oct. 4. the memorial service was today and here is what I wrote and read:

"Grandfathers are pillars of wisdom and strength within a family..." that is a quote that I recently read and my grandpa is no exception.

He and I spent a lot of time together since he moved into Langley in 2004. I would go over to his apartment at Magnolia Gardens for frequent visits where he and I would sit and work on a puzzle, reminisce about our memories as a family or he would tell me stories from his 91 years of life. We often talked about the people we knew from Central Park Gospel Hall and 10th Avenue Bible Chapel. He would tell me about how much he had loved all of his duties at 10th Avenue, whether it was being the treasurer, working on the gardens, cleaning the Chapel, preparing the table for the communion service or leading the hymns. He loved the church and he loved God. I always knew and never doubted his devotion to serving God and serving others. That is something that I will always strive to emulate.

Not only was grandpa devoted to the church and God, he was also devoted to his work. When he was 16 he left school and was hired to work in the lab at BC Sugar. He devoted 49 years to his work in the lab and as plant supervisor. During WW2 he joined the navy as a medic and he often told me about how he always sent his paycheque home to his mom to help pay the mortgage on the family home. After his mom passed away he and my grandma continued to care for his dad. They lived next door to one another and every morning grandpa would take breakfast over to his dad and they would make him dinner each night. Family has always been SO important to him.

Growing up my siblings and I spent a lot of time with grandma and grandpa. They lived only a 10 minute walk from our home which gave them easy access to their 4 grandchildren. Grandpa helped Trisha with her paper route a couple times a week, he never missed any of Brad and Robbie's soccer games, we often had family dinners together, went to their place and played dress up or "perry mappy", did crafts in their kids craft corner or "helped" grandpa in his garden with his tomatoe, cucumber and potato plants.

Grandpa was a man of routine. Whether it was picking up my dad's company's mail each morning and delivering it to him, cutting his lawn with only ever a push mower, eating fish and chips with MALT vinegar, making sure he always had HP sauce with his dinner, spending his summers in Penticton, giving his neighbour haircuts or unlocking and locking the Chapel every Sunday...he would never waver from his routine. When grandma passed away in 1993, he started a new routine of having us 4 kids over for lunch every wednesday. We would walk to his place from school and he would serve us grilled cheese sandwiches dipped in egg with salt and vinegar potato chips and chocolate milk. For dessert he always had fresh glazed doughnuts from middlegate mall. We would sit in the same seats at the table with the same cups, no matter what. We loved it and will never forget it.

Many of you may remember my grandpa as a bit of a worrier....maybe even A LOT of a worrier. He worried about his family the most. In order to counteract that worry he would call us almost every day just to check in. When my son was born in May I was unable to visit him as often and therefore the number of phone calls i received increased. He always wanted to know how his great-grandson was doing each day. Another thing he worried about was eating. "what are we having for lunch today? What are we having for dinner?" He had some of the care aides wrapped around his finger and they would supply him with monthly menus. If he knew there was a meal that he wasn't going to enjoy, most likely meals which contained onions, he would check and see what was being served on the other side of the building and arrange to have that instead. I doubt that he sat down to very many meals where he didn't know what would be showing up on his plate. I know that worrying is a trait I inherited from my grandpa, a trait I used to hate but now I think I can look at it differently, look at it as a little daily reminder of my grandpa.

He has always been, and will continue to be a pillar of what it means to be a faithful servant, loving friend and devoted follower of Jesus Christ.