update on Mikisa

i thought it would be good to give an update on Mikisa’s health and ask for prayer for some specifics.

we have big news on our little miracle girl: she is moving her left wrist!!!  we are beyond excited about this recent development, as it would mean so much for our girl to have at least some movement in her left hand.  imagine how much more independent she could become!  so far, the movement is very slight…barely noticeable.  but her therapists are confident that with work, this will improve.

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this sudden change happened after a week-long intensive therapy “camp” at Arise and Shine Therapy.  three therapists worked with Mikisa for 3 hours a day throughout her spring break, focusing specifically on her left hand.  they did a type of targeted therapy called “constraint induced movement therapy” in which they temporarily casted her right hand so that she had to perform all activities using her left hand.  this forces her brain to at least attempt to make connections with the muscles in the left hand.  it was a long shot, because most kids in this type of camp already have some level of movement in their weak hand and Miki didn’t have any.  but they focused on her wrist and made the activities really fun for her so that she was motivated to participate.

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at then end of the week, when they told me she had moved her wrist, i couldn’t believe it.  it really is nothing short of a miracle!  in the 7 years since her stroke she has never moved her wrist…those muscles are completely unused and her brain (i thought) made no connection to that part of her body.  but i was wrong!  now, instead of ignoring her hand, she is trying to use it as an “assist” with things like zippers, picking up larger objects, opening containers, taking caps of markers, etc.

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so since then we have revamped our home therapy program to include at least 15 minutes a day of work on the left hand.  we are seeing improvement even in the weeks since her CIMT camp.  it is truly remarkable.

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please pray that Mikisa will learn to use her left hand and that her fingers will start moving too.  we have seen slight twitches in two of her fingers, which is a good sign…but we have a long way to go before the movement is purposeful and functional.  pray that her brain will make the necessary connections and that her muscles will cooperate so that this doesn’t become too frustrating for her.  she does not like working on her left hand, as it makes her more aware of her limitations.  but we are really hopeful that with consistency and time, she will start to realize her potential to use both hands.

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another not so great development: we have noticed that her left hip subluxation seems to be getting worse as she walks more.  we are being observed by an orthopedist and will be going in for xrays in the next few months.  the concern is that if the hip joint is more dislocated, she will need to have surgery sometime soon.  we want to avoid that if at all possible!  that would be so hard for our active little girl right now.  (she would have to be in a cast for 8 weeks and relearn to walk after that) so we are using a Standing, Walking, and Sitting Hip Orthosis or “SWASH” daily to try to correct her hip positioning.  it is hard for her to move in it, so we mostly use it when she is seated.  but we do some walking and squats, which she has gotten quite good at.  she hates this brace, “no SWASH mommy.  i don’t like it…that’s enough!”  but if it can save us from hip surgery, we will be grateful.

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in other news, we had an appointment with our neurologist last week.  it went really well and we are happy with how well her epilepsy seems to be controlled right now.  we will go in for another EEG in June to check her nighttime seizure activity, but during the day she has not had many seizures at all.  also, the behavioral side effects from both the epilepsy and the medications seem to be more under control, which is a relief.  our neurologist recommended starting Mikisa on a therapeutic level of fish oil, which will supposedly help restore some of the damaged area of her brain.  it is an expensive medication (not just the fish oil you can buy over the counter), but we are going to try it for a few months to see if we notice any improvement at all.  there have been some recent breakthroughs with fish oil treating people with strokes.  we are hopeful.

Mikisa continues to do well in school too.  we are so thankful that she has had a personal needs assistant this year.  she has made significant progress academically!  she can identify all of the letters of the alphabet, knows all her sounds, recognizes numbers 1-10 and can count to 40!  she is learning to keep her hands to herself and control her impulses in the classroom.  obviously she is still very delayed, but it is encouraging to see her retaining information and learning new things every day.  we are not putting limitations on this child!  there is no telling how far she will go:)

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she adores her baby sister and since we are working on very basic skills for Miki’s left hand, the baby can be involved in some of our activities.  they do tummy time together and we work on grasping things with both hands.  it is so much fun to see their relationship develop.

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Mikisa does not let her disabilities get in the way of having a good life.  she is strong and brave and we are so proud of her!  thank you all for keeping up with our journey and for your thoughts and prayers for Mikisa’s medical needs.  we are so grateful to be part of such a supportive, loving community.

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5 responses to “update on Mikisa

  1. Christina, this was a beautiful update and I am so thankful for all God is doing as I have watched you journey with Mikisa from a tiny girl who fit in a 6mo onesie to this amazing, smiling, talking bundle of energy. Our Dad knew when He brought her to you exactly the plans He has for her, and I am so moved by watching this journey.
    I love you!

  2. I am always so happy to read your post! It is amazing that you find time! I believe in all my heart that there is amazing growth ahead for your special girl. You are all in my prayers. One of these days we must do dinner, lunch, tea… Whatever! Big momma hugs to you! You are doing an amazing job!

  3. Thank you for sharing Mikisa’s victories and allowing us to intentionally pray for her next steps.

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