Friday, May 18, 2012

3 Months Home and EEG results

Rebecca is doing fantastic! We no longer have to recline her in order for her solid foods to stay in her mouth. She is figuring out this whole eating solids and is able to keep all of her food in her mouth while sitting up. She has even chewed on a soft noodle or two. Since having her cleft palate repaired she is opening up to cold foods as well. Before, she would not even think about allowing anything cold in her mouth and now she LOVES yogurt. Rebecca also started weaning herself off the bottle. She now gets a bottle first thing in the morning and again at night. But I am pretty certain the one right before bed may be leaving soon too because she doesn't finish the full 6 oz. I may still try to hold on to these last two bottle times for as long as I can just for the closeness and bonding.

As most of you all know, we visited a Pediatric Neurologist a few weeks ago. A few months before we traveled to get Becca, the orphanage informed us that they thought she might have Cerebral Palsy, but there was nothing in her referral information that would point to CP. So, Bucky and I still had hope that her delays were just that, delays, and that with some early intervention therapy she would be fine. What the orphanage did not disclose was that she had suffered a traumatic brain injury. Therefore, although the Neurologist's diagnosis for CP was not a shock to us, the diagnosis of blindness and mental retardation was. Please allow me to interject this here: We are not sad or unhappy that we adopted Rebecca. If we knew all that we know now, we would still adopt her. We love her dearly and are resting in a Sovereign God who has orchestrated all of this. Rebecca was certainly "the least of these" and we are delighted that we get the privilege of being her Mama and Papa.

One positive thing that came out of the Neurologist appointment is that all Becca's vital organs are strong and healthy! Praise God for that! 

Becca is at a high risk for seizures, therefore, her Neurologist ordered an EEG test to be performed. In order to get an accurate EEG, the patient has to be sleep deprived so that they will sleep during the test. Boy was that fun...NOT! On Wednesday night we were supposed to keep Becca awake until midnight then wake her up at 5 am Thursday morning and not allow her to sleep until her appointment at 1pm. Well, by 11pm Wednesday, she was mad as a hornet, to the point where I thought she was going to make herself sick, so I put her on to bed. I did get her up at 5am and she did pretty well throughout the morning, only having a couple of crying spells. She fell asleep quickly after they hooked all the things up to her head and slept through the whole test (about an hour). Today the Neurologist called with the results. They were not what we had hoped, but not as bad as they could have been. Some seizure activity was detected on the test. She will not have to be on daily seizure meds, but we will have to keep an emergency supply of seizure meds on hand to administer to her rectally if she does have a seizure. Please pray that she NEVER has a seizure!!

Please continue to pray for us! Right now we are brainstorming as to what to do housing wise. If Rebecca does not learn to walk we will either have to move or add a bedroom and bath onto the downstairs of our existing home. I don't want to move, I love our home, but we will also need to renovate our backyard to make it a safe place for Becca. Our yard is unlevel and sloped and just not safe for a child in a wheelchair nor would it be safe for her if she does learn to walk because she will never see well and I don't want her tripping and falling. Of course renovations, both to our home and our yard, are costly. Again, we are trusting God to work out all the details.

Friday, May 4, 2012

A Mighty Fortress Is Our God

  1. I don't even know how to write this post, but here goes...

  2. We went to see the neurologist yesterday. He went through and explained all the MRI images. One thing we learned is that the body absorbs damaged brain tissue and replaces it with spinal fluid-like liquid. Becca has large and multiple areas of this fluid. Her optic nerves are damaged (which we knew) but so is the part of the brain that receives the information from the optic nerves. So, except for some peripheral vision, she is blind. He also gave her a diagnosis of Cerebral Palsy and Mental Retardation as well as Autistic-like characteristics.

We still do not know if she will speak or walk. Time (and lots of therapy) will tell. We are still processing all this information and trying to focus on today and not get overwhelmed with the future. We covet your prayers as always. Martin Luther penned this hymm hundreds of years ago, but is it ever true for me today:

  1. "A Mighty Fortress Is Our God" by Martin Luther

  2. A mighty fortress is our God, a bulwark never failing;
    Our helper He, amid the flood of mortal ills prevailing
    For still our ancient foe doth seek to work us woe;
    His craft and pow’r are great, and, armed with cruel hate,
    On earth is not his equal.
  3. Did we in our own strength confide, our striving would be losing,
    Were not the right Man on our side, the Man of God’s own choosing:
    Dost ask who that may be? Christ Jesus, it is He
    Lord Sabaoth, His Name, from age to age the same,
    And He must win the battle.
  4. And though this world, with devils filled, should threaten to undo us,
    We will not fear, for God hath willed His truth to triumph through us;
    The Prince of Darkness grim, we tremble not for him;
    His rage we can endure, for lo, his doom is sure,
    One little word shall fell him.
  5. That word above all earthly pow’rs, no thanks to them, abideth;
    The Spirit and the gifts are ours through Him Who with us sideth;
    Let goods and kindred go, this mortal life also;
    The body they may kill: God’s truth abideth still,
    His kingdom is forever.