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)!!


  1. wow - thanks for sharing this with us, lael. this is a beautifully written account of these events and your feelings and i totally appreciate your honesty. you're right - God is bigger than this - make it your mantra. jacob is so sweet and God has great plans for him in his life. lots of love and prayers to you, steve, and jacob.

  2. Thank you for being so open about this. It can't have been easy for you. I will be praying for Jacob and for you and Steve.

    Is getting a private clinic to do the MRI an option? They can usually see you within a day or two. I looked one up on line in Vancouver and it costs $895. I have sent them an email asking how much for a baby. Maybe you could get family and friends to contribute? I will put up the first $100. xo

  3. What on earth is "completely normal"? Jacob was never going to be "normal" - with parents like you and Steve he was always going to be spectacular, and this news doesn't change that, not one little bit.

  4. Amen to angelwithaponytail's comment about "normal"! Praise Jesus that he isn't going to be "normal", whatever that means!!! Praying that God's kingdom comes and that when you get to the MRI all the medical staff will wonder what all the fuss was about because there is absolutely nothing wrong!! Love to your family!

  5. It must have been very difficult to share this with people, but it shows strength and trust in God and community...enough to share, enough to be vulnerable. I am praying for you, Stephen and Jacob. Being born into your arms is no mistake, God does not make mistakes and He equips those who delight to do His Will.
    I will provide another $100. if you go the route of private MRI.
    Praying for miracles, answers, hope and courage.
    aunty M

  6. Thanks everyone!

    fostermom (i am guessing that you are Maryanne??), i looked into the private MRI thing and they will not take infants because they need to be put under. Thanks so much for your offer though. and thanks Sandy for your offer and info as well....we are looking into another option once we know his appointment date.

  7. A metabolic disease, degenerative. He can learn new skills, later lost it. He is developing the fact that "normal" may now means nothing, because he can deteriorate over time.

    appointment setting