update on Mikisa’s health

as i type, mikisa is hooked up to a slew of electrodes and her brain activity is being monitored.  we’ll be here for 24 hours in the hopes that they can give a more clear diagnosis of her seizure disorder.

i am trying to stay calm and breathe, although looking at all the spikes on the EEG is very frightening.  i’ve promised myself not to look for at least another hour.  after our short EEG, the neurologist told me that it looks like mikisa may have a rare and severe seizure disorder that can get worse with age.  she couldn’t confirm the diagnosis, but it looks like mikisa’s little brain was “spiking” all throughout her sleep, meaning she could well be having seizures we can’t see.  she said the EEG looked “horrific” and she wanted further confirmation of her suspicions.  needless to say, this news had me reeling with fear and worry.  i’m still trying to wrap my head around it all.  but today’s testing should bring more clarity and should help us determine the best treatement options for our little girl.

in other news, it turns out mikisa has moderate hearing loss and will need hearing aids.  while this is definitely not something i had suspected, it may be one of the reasons for her speech delay, and we are hopeful that the hearing aids will improve her understanding and communication.  she has high frequency hearing loss, meaning that she can’t hear certain sounds.  this diagnosis also explains a lot of the other challenges she is having: her inability to focus, her short attention span, her aggression, her defiance, and her inability to follow directions.  now i’m not saying all these problems will instantly dissappear with the introduction of hearing aids.  but…there is more potential.

other than that, mikisa is still improving with her physical capabilities.  she just got fitted with a new AFO (ankle brace) that has a hinge at the ankle.  this allows more movement in her left leg and will help her muscles develop more normally.  her left leg is 1/2 an inch shorter than her right, so they will put a lift on her shoe, which should also help with her walking.  she still struggles with balance and is not yet able to walk independently, but she is very determined and we think she’s close:)  we do her PT exercises and walking every day for at least 30 minutes.  her left hand still hasn’t moved and could very well be paralyzed.  we will only know with time.  but we are continuing to stretch her muscles and encouraging her to try to use that hand as much as she is able.

her vocabulary has increased to around 50 words.  we are so proud of her and how she is trying to communicate!!  it is wonderful to see her stringing two or three words together in short sentences.  again, with the hearing aids, her speech should improve significantly.

we recently went to the dentist and they did “restorative surgery” on her mouth…a grant total of 8 fillings and crowns on her baby teeth.  it was traumatic for all involved.

please keep us in your prayers.  while we are absolutely in love with our little girl, it is very challenging dealing with all of her medical needs at one time.  it feels like we’re in the middle of a snowball fight and i am ready for things to slow down.

mikisa’s list of diagnoses just keeps getting longer.  she has hemiplegic cerebral palsy, epilepsy, global developmental delay, sensory processing disorder, cognitive impairment caused by a stroke, and moderate hearing loss in both ears.  not to mention all the emotional and behavioral challenges.  it is easy to become bogged down and overwhelmed by what doctors say is “wrong” with her.  her little body is broken and everyone is trying their best to fix the abnormalities.  i find myself getting sucked in to this clinical world of labling, treating, assessing and predicting.  it’s hard not to when i spend most of my days shuttling her between specialists and therapists.

but perhaps this brokenness is just another reminder from God.  that she can be made whole only through His grace.  no amount of medicine or therapy is going to “fix” her.  only He can do that.  and one day she will be free of all of this.  she will run and dance and sing.  she will be made new.

Advertisements

13 responses to “update on Mikisa’s health

  1. Oh Christina. Mikisa is so much more than a list of medical problems. She is so beautiful, full of joy, treasured by God and by her parents. I don’t know what the future holds, but I know who holds the future. And he is good. His grace is enough. Love to your family. I hope we get to see and Mikisa again sometime!!

  2. We are praying for your whole family..She is such a precious gift from God and He loved her so much to put her right in your and Troys hands to love and to hold. One day at a time. Thanks for keeping us so well informed. We are so in awe of Gods plan for you guys.
    Much love
    Mom/ Marilyn/ grandma

  3. good work on the “year of tellin it like it is” :). i love you and meems and troy. and now for you, a verse…

    Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

    have you read ez. 16 yet? if not, i will read it to you and meems. tonight, if you like. praying for your renewed hope and persevering spirit. He is faithful. He is just. He is love.

  4. Christina and Troy, just remember that it is not up to you to “fix” Mikisa. Only God can do that. You are responsible to love her and to provide the opportunities to those who may be able to help. Sometimes we take on too much repsonsibility to make everything right. We will be praying for you and Troy and Mikisa- that God will strengthen you, encourage you, give you wisdom and peace in the midst of this storm. Many love you and pray for you! Thank you for sharing your needs so we can pray more clearly! God loves Mikisa more than we do and knows her needs better than we do. We will trust Him.

  5. Hi Christine. I can hear your “teacher” vocabulary come through in your writing. I can also hear your “mom” vocabulary and love for your daughter. God does have a plan for all of us. I am praying for you and your family. Please stay strong and know that you have many friends that are here for you if and when you need us.

  6. Jack and I do not know you personally, we are long time friends of Phil, Marilyn, Lana and Lisa…..We were very excited when we heard the news of Miska and we will continue to pray for your strength and her healing in this trying time
    Jack and Gail Smith

  7. Greg and I are also long time friends of Marilyn and Phil. I have been so blessed watching your story unfold around this precious little girl, and how God has brought her into your life. I too teach children, and am presently teaching at an inner city school with under privileged children. What a joy to minister to them each day; to work to improve their lives through God’s message of love and grace. I am definately praying for you all! And I am so thrilled that you have met and married Troy, he has always been such a wonderful young man. Blessings to all, Debi

  8. Christina, Tamara has shared with me about your little daughter. What a beautiful child. I pray that you are given strength and joy for each day, and hat she continues to blossom and heal form all the trauma she has been through emotionally and physically. With God ,all things are possible. I loved seeing such wonderful photos of her.
    Love, Beth Kleinsasser

  9. I have followed your story from Mandie’s blog, and I just wanted you to know that your sweet daughter has been on my heart these last few days. I have been praying for her. And for you guys. Every time I hear the Gungor song Beautiful Things I think of Mikisa and I pray for her. 🙂 I love seeing what beautiful things God is doing in your lives.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s