1.25.2011

Update on the homefront

Simon has been sleeping in his toddler bed ever since I redid his room this past weekend. His afternoon naps take forever for him to settle down. Doesn't help that Isabella is home from school and tires to be the mom and put him to bed herself. Nights are pretty good. Last night he only woke up once and just babbled while sitting up in bed. I told him to lay back down and he was back asleep right away.

I went with Pablo to his appointment at the chronic pain clinic this morning and I'm glad I went. The doctor we saw was just awesome. Irish and funny and down to earth and didn't use big medical terms that I wouldn't remember. He told us that there was no abnormalities in the EEG that Pablo had done recently. YAY! We're very happy about this because Pablo had some 'strange' things happen to him a few times lately that we thought might have been seizures. The EEG showed no seizure activity. This doctor wants Pablo to do exercises everyday for about 20 minutes to start to build up his energy levels. Fatigue is a big thing that drives Pablo crazy and the doctor said that after the 2 months of radiation treatments that Pablo had on his brain, it could take up to 12 months to 'get back to normal' and get over all the fatigue. The doctor was very willing to help Pablo get long term disability. He believes that Pablo just needs to work on being able to function day to day - expecting to get well enough to work full-time is an unrealistic goal for the near future. He was shocked that we've managed so well over the last 9 months while raising a two and four year old. This made us feel really good.

(I might have written about this before but I can't remember) I've noticed a big change in Pablo the last couple of weeks. He seems to have had more good days than bad and it used to be 1 good day for every 5 or 6 bad days. This change had happened since he started taking the Vitamin B6. This vitamin helps to fight against fatigue. AND IT SEEMS TO BE WORKING. AMEN. 

Ongoing issues with Pablo that require more medical appointments:
  1. Pablo has really bad vision in his left eye. He has an appointment with an opthamologist in February.
  2. Pablo has issues with his left ear (he feels like there is water in it all the time). Waiting for an appointment with an ear/nose and throat specialist.
  3. Pablo's sleeping patterns/habits are the pits. He is going to be seen by a sleep psychologist or by a sleep clinic. Again. (He already spent the night at a sleep clinic in July and heard nothing back from them)
  4. Pablo has an appointment with his urologist in February regarding his peeing issues.
  5. Pablo has a follow-up appointment with the chronic pain clinic in February.
  6. Pablo's short term memory is pretty bad. Not sure what can be done to help that...
  7. February is going to be a busy month and my parents are gone the whole month to Mexico (SO jealous).

12 comments:

  1. I dunno if it helps, but all the things Pablo is experiencing are the same things Vince experienced after radiation on his brain.
    I just don't think brains like being cooked.

    Things get better but they are a little different afterwards.
    Vince still has weird sight out of one eyes but his other eye compensates - he bumps into a lot of things coz his peripheral vision isn't the best.
    He's half-deaf in one ear but the other one is good and his memory improved but it's not quite the same as it was.
    The fatigue got better but it does take a really long time. I'm not sure if I've said it before but Vince had 9 months of chemo and a stem cell transplant but the radiation was the thing that knocked him around the most.
    After he stopped fighting against it all, and accepted it and adjusted his lifestyle and rested A LOT, he improved (mind you, we didn't have 2 little ones to look after).
    But there were LOTS of days lying on the couch.

    Oh yeah - and just in case - if the tumour was near his pituitary gland (and I remember Pablo had his noggin cracked in the same spot as Vince did, so it's a possibility)- it might have effected its function and that can effect testosterone which is important for combating fatigue (and it can effect the thyroid too - which also effects energy levels).

    Vince's head pain lasted a looooong time.
    Morphine was his friend for quite some time.
    Hot and cold effected him very badly.
    But once they corrected his thyroid function and
    he had many acupuncture sessions for pain, he improved ENORMOUSLY.

    Good luck to both of you.
    It's pretty sucky.
    Pablo, learn to love your couch (just for a while).

    ReplyDelete
  2. Hey Letitia! Thanks so much for commenting! Pablo was overjoyed to hear that he isn't alone in what he's experiencing - especially this late in the game. He couldn't believe how similar he is to Vince when it comes to all the issues. Pablo is definitely getting used to the fact that he does need to rest often (and not push it) but it has definitely been hard cause of the rugrats. In case you read this comment, Pablo wants to know how long it took Vince to get over the fatigue stage.

    Thanks again for sharing Vince's experience! And sucky is just the word I would have used...

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  3. hi julia+family
    i wanted to finally comment because you are my favourite blogger+i have read every single entry right back to the beginning!your kids rooms make my heart happy,i have cried for pablo+i have laughed at isabella's priceless words.i hope you don't mind but i wanted to share a link+some info you might find interesting+maybe worthwhile for pablo to try?it is natural so won't clash with any medications he is taking.you are all wonderful+i pray for pablo to get better+better.
    love from one of your biggest fans
    sam burnett(western australia)
    http://hippocrates.com.au/magchlor.htm

    ReplyDelete
  4. Hi Sam! I am honoured to be your favourite blogger and thank you so much for your kind words. Pablo and I will check out that link as soon as the kids are in bed tonight - that was thoughtful of you.

    ReplyDelete
  5. I have had rheumatoid arthritis for 20 + years and it isn't the pain that gets me, it's the fatigue. Some wise person once told me to listen to my body! Massages seem to help (increase blood flow, help with stress?). Have you tried Vitamin B12 shots? Those have been life savers for me at various times. Good Luck!

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  6. Unfortunately, I think those things are all normal after what is basically a brain injury PLUS. (Plus all sorts of other stuff!) Fortunately, things do get better with time.

    My BFF Maribeth fell and hit her head on a sidewalk about 4 years ago. She basically doesn't remember the 3 months afterwards. Her demeanor changed and her whole life had to change--she couldn't work, either at work or at home for a long time. She started back at work a year later at 10 hours a week and now she's doing much better, working 30 hours a week. She has to be careful with getting too tired because her symptoms (blurred vision, forgetfulness, word finding problems) reoccur.

    And, 3 and a half years ago, Joe was on his bike when a car pulled into the crosswalk. Hit his head, broke his shoulder, tore up his elbows (cause $4k worth of damage to the van!). He's had problems with forgetfulness and word finding since then but it's gotten a lot better.

    What a long, rambling, hopefully not too depressing way to say that time really does help and it really does get better. :-)

    ReplyDelete
  7. I always have time for your rambling Collette! LOL! The doctors have all said that it is going to take months and months. It's hard not to see progress from week to week. Month to month progress is more reasonable...

    Poor Joe - and to do that much damage to the van - YIKES! After going through this head stuff with Pablo, I'm not surprised that it took Maribeth that long to be able to work - poor girl!

    ReplyDelete
  8. Sorry Kathy - I missed your comment because of Collette's ramblings! LOL! Kidding! Love you Collette!

    Pablo hasn't tried Vitamin B12 shots. He is taking Vitamin B6 pills and those are awesome for fighting fatigue. I'll get Pablo to ask the doc at the pain clinic next time he goes. Thanks for the suggestion!!!

    ReplyDelete
  9. Julia - it took Vince about 18 months to get over the worst of the fatigue.
    He found it incredibly frustrating.
    And he felt really guilty that he wasn't doing more to help around the house.
    When he went back to work he did so part-time til he felt better, which was great.
    It's all a very good enforced lesson in patience!

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  10. 18 months - WOW!!!! I'll bet Vince found it frustrating cause that is a freaking long time. Pablo was always a go, go ,go kind of guy before the tumour and only being able to do one tenth of what he used to is very frustrating for him. Thankfully, since having the kids, we've had to work on our patience but this has made us work on it that much more.

    ReplyDelete
  11. Oh, did I mention that the dicks in the van tried to sue our insurance company? They said it was his fault and he can't remember the incident at all. But don't worry, we have their address and you and I can take care of it when you come down to finish my house. ;-D

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  12. HAAAAAAAAAAAAAAAAAAAA (about finishing your house).

    What a bunch of assholes! And might I add that karma's a bitch (or payback...whatever you want to call it).

    ReplyDelete

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