Life goes on

We've had our first winter virus this past week. Considering we are well into winter I'm feeling pretty blessed it held off this long. It started with Mike and slowly took us down one by one, then Shiloh, Hosea, Aggie and finished with me. It was a cold/flu mix. No vomiting, thank God for that! Head congestion, coughing, skin aches, head ache. I'm still in the throws of it I think. I thought i was getting better yesterday, but was up coughing much of the night. Thankfully I have been able to do some chores today, so i'm not completely wiped out.

On another note. We've really been enjoying watching Hosea be a big brother. He loves showing Aggie all her toys and talking to her about life. This particular picture was going on at the kitchen table while i was cooking dinner one evening. They were both occupied for quite some time

Da Girls

Shiloh picked red, so we all did red. Poor Hosea felt very left out, you can see the bottom of his feet at the top of the picture, he thought he was in the shot. No red for him:(

It came out!

The neighbor is on it's way out. Whole apples and pears are a current past time for Shiloh.

The Brain

God has answered some prayers, but probably not in the way one might think. I've been praying for the Lord to draw me to Himself. To keep me from wandering... and from temptation. To fill me with desire for Himself.

Though I am weary....... I am very aware that He is near. Being acquainted with the life of a mother to a "special needs" child, I am confident that He will be staying close for the duration of my life here on earth. It will require grace from me that I can not produce on my own, which will force me to call out to Him, lean on Him and rest in Him. I am so thankful that He has chosen to keep me at His bosom in this way. It truly is the desire of my heart.

We did see the Neurologist today. He confirmed what we knew. Aggie has PVL. He would not make a prognosis for Aggie based upon the MRI, as they are often inaccurate. We did see the picture of her brain, and it was quite obvious where the damage is, it was a very sobering picture for me, as I understand words much better when there is a picture explaining them. The left side has more damage than the right, so the right side of her body will more likely need more encouragement. We left with little to no expectation of what Aggie will or will not be able to do. We do know that the area of her brain that is effected controls gross motor skill and communication. Do to scaring from the damage, growth of "white matter" which is what transports information from the brain to the body may not be able to grow properly or at a "normal" rate. All this to say, that we are trusting God for His perfect plan for Aggie.

I would be blessed if you would continue to pray for us in this, as it will be a life long journey that holds much uncertainty. I will be praying for God to bring healing to Aggies brain, to re-route information in places where it can not pass through, and that we will know how to best care for Aggie. Also that God would bring the right people into our lives to be used as resources for her therapy, and for the opportunity to share the gospel with those people that they too may know the love of our savior.

Aggies next appointment with neurology will not be until May, there are still labs pending that were drawn a few weeks ago. Now the main goal of the neurologist is to figure out the cause of the PVL. They are feeling certain that is was something in utero, given her small size at that time. The only reason we would want to know the cause is if it is something that could affect subsequent children (genetic), if it is something that is progressive, or if it is metabolic and may possibly require some sort of treatment.

Weigh In

12 lb. 11oz. She is still trending upward.

We are waiting for tricare to approve referrals for hearing aids and to have her eyes checked, since people with PVL often have trouble with their sight.

I've been a bit weary this week and feeling a little overwhelmed. I've been actively fighting the battles in my mind with Gods word and prayer. Today has been a more peaceful day. I painted all the girls toes red, just for fun. I'll post pics soon.

My mom has decided to come for a visit. She will arrive Monday, I am anticipating her helping hands and companionship with eagerness.

Neurology

Our Appointment for Monday was cancelled, the Dr. was needed in the hospital. It is re-scheduled for Friday.

What's in a name?

Yesterday the endocrinologist told us that are sweet little girl’s MRI on her brain came back abnormal, though that is all she said and would not disclose any further info. Appollo called the neurologist and despite the nurse’s determination to not reveal the results, Appollo was able to pry out the gist of the results. Basically what we know is that our girl had a brain hemorrhage during or shortly after birth (not uncommon for premature or small babies). This led to a condition known as Periventricular leukomalacia (aka... PVL if you can’t pronounce the long medical words). From all that we read she has a decent chance of developing cerebral palsy or epilepsy. We of course wept together at this news, but it was not what you might think. There was a touch of remorse, but it was not all or even mainly remorse. You see, we have a hunch that Aggie is going to teach us more about life than we are going to teach her. Appollo told me a story about a young lady she saw at the hospital after Aggie had failed another hearing test. This young lady, probably in her 20's, appeared to have a disability and was wearing a hearing aid. She was also a volunteer at the hospital and had a cheerful pleasant spirit. Appollo had the thought "Is this what Aggie is going to be like when she gets older?" It wasn't a disappointing thought to her. The Bible says “God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong”. We live in a culture that values the powerful, intellectual, beautiful, and popular. We idolize celebrities and athletes. In fact, I read that 30 years ago a doctor would recommend a child with cerebral palsy be put in an asylum and forgotten. But who reflects more of our Father’s glory... the rich athlete or the 20-year-old girl whose life has been full of trials who joyfully serves in a hospital? I’m not trying to spiritualize disabilities as if they are sanctifying in and of themselves. They are not. Everyone needs Christ. We’ve already started to see some of Aggie’s feistiness to assure us of her need of a Savior. But there does seem to be a naivety and childlikeness in some of the folks I’ve met with disabilities. And I think God can use them to shame the rest of us “normal” people. Time will tell if and how much Aggie is disabled. But our hope and prayer, whether her body and mind is strong or weak in the world’s eyes, is that she would glorify God. What’s in a name? I’m not sure but I think it’s fitting that Aggie means “kind, good, pure, and chaste”. May God make her a reflection of those attributes!