Wednesday, November 16, 2011

progress.


we have two awesome kids. they’re both so creative. love to draw, play with stickers, do crafts, make forts. and they’re oh so loving. miles likes to tell me, “i love you mom!” out of the blue at least 10 times a day. i never get tired of hearing it. and ozzie? if you tell him you love him, his response is, “i wov you mo-ar!” who taught him that? whoever it was, thank you because some days it’s the best thing to hear. they both love to snuggle and read books. they’re headstrong and independent. and rowdy. the wrestling. never. stops. even if we’re visiting friends, i’ll look over and there’s ozzie tackling a 21 month old little girl! whoops, sorry sandra. also: thanks daddy?


these boys are our everything and one has right sided hemiplegia. this is what our pediatric orthopedic surgeon has now told us. phew! we’re still not sure what happened for him to have it. he has a mild case at that. his prognosis is amazing and if he wants to play sports he will. we have yet to meet with a neurologist or a developmental pediatrician, but we are on waiting lists to see these people.

so you may be wondering, what is hemiplegia?
HEMIPLEGIA in infants and children is a type of CEREBRAL PALSY that results from damage to the parts (hemispheres) of the brain that control muscle movements. This damage may occur before, during or shortly after birth.  

for more info, if you’re interested can be found here: http://www.chasa.org/hemiplegia.htm?gclid=CJ-1i-OBvKwCFcLAKgod6SuYpA

i’ve recently joined their online discussion group, hemi-kids & now have access to an archive list of questions, concerns, etc.it’s a specialized online mailing list for parents of children who have mild to moderate hemiplegia, hemiplegic cerebral palsy, or hemiparesis. holy resource batman! it’s like a long lost family member. it’s just what we need right now.

therapy!!
so his physiotherapist and occupational therapist love ozzie - how could you not? he charms everyone he meets and i know i’m biased, but he’s super cute too. he’s developing into a boy who’s a little shy at first but will soon be giving you hugs and kisses and will cry when you leave. below is an update of our latest appointments.

ozzie's getting an AFO!  Ankle foot orthotic. this will help keep his foot at 90 degrees and help with his gait. for the outside of his brace he picked cars and trucks and helicoptors, tractors! so it is pretty fun, and as he gets older they have more conservative type prints. camo, plain colours, etc. the brace they chose for ozzie was one for athletic type kids, he'll have a bit of a spring in his step, much better for running too. he'll have to wear one til he's done growing. how long is that? til he's 20 or something?  the physiatrist couldn't believe how much range he has in his foot (which is a good thing). usually kids with hemiplegia are very tight. his is a very mild case, so to the therapists - he's a dream. he can do a lot, he's their superstar. and yes he is our superstar too, but for us this is hard, big, frustrating news. we’re still working through all the emotions here..

with our occupational therapist we also discussed constraint therapy. constraint therapy is for people who have had a stroke: by constraining their unaffected limb, they are forced to use the affected limb.  the purpose is to create new pathways in the brain and thereby increase said limb’s functionality.

first method of constraint therapy: putting a mitt on his good, dominant hand (left hand), with splint material on the palm so he can't grip. it's just what it sounds like, a mitt, velcroed at the wrist so it doesn't slide off, so he can't take it off, then sitting and doing activities so he can use his weak hand more. ie. putting blocks into bucket, picking up things one by one (cheerios, small toys, etc). repetitive motion to get his hand moving, gripping and working. this therapy is only as good as his temperment but also the parent. we will set aside time to sit with him with a list of therapeutic activities - fun stuff to him. if he throws a shit fit, we stop for a bit but try again. ozzie did well with it on at o/t, however it was only for a short period of time. the o/t gave us a piece of splint material so I could make one myself. she wants to take a video of ozzie doing certain activities to really see how he's using his hands and that's at our next appt. on Dec. 6th - once that's over we'll go ahead with the constraint mitt therapy at home.

the second constraint method would be to cast his good arm (left arm). a full on plaster cast from the tip of his fingers to his armpit. They do this type of therapy for the same reason as above. he would have no choice but to use his weaker hand at that point. this would last for 3 weeks or so. our concern at this time is with him falling. he's still not steady on his feet 100% of the time and he uses his hands to catch himself when he falls. plus now with the addition of his afo, right? so we'll reassess this if the mitt isn't for us and doesn't work, but at a later date, as he gets older.

so there you have it.



obviously, ozzie is still our beautiful child and always will be. it’s just recently with meeting our pediatric orthopedic surgeon, the official diagnosis of hemiplegia, the casting for the afo, and up next getting the afo and ozzie actually wearing the brace that this is all too real, and at times a LOT overwhelming. the fact that this journey ozzie is on, is not just a temporary one but one for the rest of his life - i think this is what is hitting me in a way i never thought it would. it’s hard.

this year has been a rollercoaster. one that you can’t really stop. i’ve said this a million times this year. but it’s true. and i’m sure i’ve aged at least 5 years and need a makeover. ha. but seriously, thank you for all your support, your notes of encouragement, emails. everything. because that’s what we really need on those days that are full of too many tears.

thank you thank you thank you!!
xo

11 comments:

  1. you are one incredible mamma to one incredible family! i appreciate the update, since i think of you guys often and wonder how everything is going...big hugs!

    ReplyDelete
  2. Ozzie will do just fine with a Mom like you Erin.....Truly a heartfelt update which I think if beautiful. All the best to you and your family.
    Susan Asquith

    ReplyDelete
  3. I love your boys! And Ozzie can tackle Izzo anytime!

    ReplyDelete
  4. I wish were were closer...i love you and your 3 boys. We will always be here for you. NO.MATTER.WHAT. <3<3xox (h-ro)

    ReplyDelete
  5. Hugs to you all and thank you for the update.


    Jacqui

    ReplyDelete
  6. OHHHHH, goodness. It must be such a mix of emotions, finally having a diagnosis but knowing that it's something he'll deal with for a good long while. WHEW. You're an amazing mama and my thoughts are with you, my dear!! xoxoxo

    ReplyDelete
  7. What a lot to handle and sort through and figure out on a day-to-day basis.

    Hearing the advice from physicians and therapists would always make my brain feel clouded and heavy and sad. And then I would look at Iris and, for me, it would become quite clear simple. We love her. We will just figure it out.

    ReplyDelete
  8. Good luck with everything Erin. I'll say a pray for your family. Your boys are the luckiest kids out there, you're a great mom! xo Doris

    ReplyDelete
  9. Ozzie is very lucky to have such wonderful parents. Keep positive and push on.
    Go Ozzie Go!

    Reelis

    ReplyDelete
  10. You have loads of patience and a wonderful heart. I wish you and your family the best.

    ReplyDelete