How I long for these things to be as simple and carefree as they sound, for my Ahnya.
Unfortunately, as her mother, I am fighting the urge to keep her inside the house, attached to my hip. If it were up to Ahnya, she would ride her bike, three blocks down to the park (by herself) and NOT mind stopping along the way every time a dog happens upon her path. While I don't want to squander her independent and fiesty personality, the last six months have been a series of crisis data points, proving she is not to be left unmonitored. The prior postings in this blog have, hopefully, described a little bit of what has brought us to this point thus far. It does not, however, describe why the sudden change in seizure activity.
Despite our liberal attempt at controling seizure activity with epileptic medication since her encyphalitis, Ahnya started having partial seizures in December 2009. From January 2010 through June 2010, the seizures became more intense and more frequent. A major seizure in July presented us with several new avenues. We changed medicine and were referred to an Epileptologist. After an MRI, Epileptic Monitoring Unit (EMU) hospital stay, a PET Scan, NeuroPsych testing, and a Wada Test, it has now been determined (by a team of Pediatric Neurologists, Epileptologists, and Neuro surgeons) that Ahnya is a candidate for Epileptic surgery.
We meet with the Neuro surgeon, from the Children's Hospital, tomorrow and will have a better understanding of what kind of surgery, how long it will take, what the recovery will be like, etc. after our meeting.
In addition to setting up the surgery for mid-March, we have also requested (and been granted) a second opinion at the Mayo Clinic in Rochester, Minnesota. Even Ahnya's specialists at the Children's Hospital recommend a fresh set of eyes taking a look at Ahnya's very unique medical case. It has been a very daunting task to get everything ready to go at Mayo and remain in our time frame for surgery. As a matter of fact, I was told yesterday afternoon they want us in Rochester by Tuesday, February 15, at 7:30 am! Yikes! The weather being as it is between here and Rochester makes it extremely unreliable and really not a practical option. Many friends and family have stepped up to help (and continue to do so) in order to get Ahnya and I to The Mayo Clinic before Tuesday morning! We currently have flight arrangements, and we are now working on transportation and lodging.
Nothing in our life seems easy, let alone 'normal'...oh what I would give for a boring life.
Thank you for your continued prayer, support, and unconditional love. Between the challenges that Ahnya's day to day needs bring, medical bills piling up, and the desire we have to just love on all three of our beautiful children, it is often easy to forget that I have a God who loves me, who is the source of ALL my strength. All He desires of me is a relationship with Him. I believe that if I remain close to Him, I need not worry about the details. He's a BIG God that enjoys taking care of me and what is important to me.
My job is not complete, but I have nothing left...I am exhausted. I cannot rely on my own strength. I hold onto the promise that I don't have to...
Matthew 11:28-30
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. 29 Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. 30 For my yoke is easy to bear, and the burden I give you is light.”
Please feel free to pass this blog address on to anyone that expresses an interest in being updated on Ahnya's story. I hope this will not only be a tool that faciliates my healing and processing, but also an avenue of communication to our family and friends that we love dearly.
Blessings,
Melissa
Oh Melissa.... I wish I could take some of this for you,, but know that many (MANY) are supporting you - people known and unknown. I know that you all are in God's hands.
ReplyDeleteLove to you
Holly