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.