Walking in the Valley

I want to take the time to record some of the thoughts I've had as we've walked through this last month of trying to discern what is going on with Kate and how to best help her. It has definitely been one of the most challenging months of our lives. It was kind of like Kate was a simmering pot that we were watching and in a flash it boiled over. We quickly went from thinking that Kate was a pretty normal child with mild epilepsy to realizing that she has significant health and developmental issues. It is going to take work and patience to help her. That is hard to accept.

By far the hardest point in all of this came on March 23rd. That night David told me that he had been doing some research online and come across a condition called Rett Syndrome. It's a condition that primarily affects girls and it can cause complete loss of language, use of the hands, and the ability to walk. In short, it utterly handicaps the girls that have it. Kate seemed to have many of the symptoms. Now, in hindsight we can see that we got a bit ahead of ourselves, but for 4 days it seemed extremely likely that this is what Kate was experiencing. Those were the worst 4 days we have ever had. We genuinely believed our little girl could be handicapped for the rest of her life. The tears and grief were intense. We are exceedingly relieved that this has been ruled out.

But this is what I want to remember. We faced one of the hardest things imaginable as a parent and found this: God was there. Even while everything in David and I was rebelling at the sorrow in the prospect of Rett Syndrome the Holy Spirit was so near. And do you know what happened in my heart? The spell of this life was broken in a way I have never experienced before. My life has always been so easy and so happy. I didn't even realize how much I loved earth. I didn't realize how un-glorious heaven seemed in my eyes. But suddenly the life I had been experiencing and planned for myself was vanishing. I was faced with the possibility of watching my little girl deteriorate to the point of needing a wheelchair, and having me feed her, and never hearing her voice again. It was agony and it made earth seem useless. It made me realize that we are all, really and truly, it's not just words, we are all made for heaven. We are made to be with Jesus. The end of all life on earth is death. Death was screaming at me during those four days. It hurt, oh how it hurt. I had been trying to find life here and hadn't even realized it.

The cross of our Savior became huge to me. He could have left us here in sin and death. That would be just. But he didn't. He came, he died, he ROSE, and now we can have real life. Life here on earth can be sweetened by his presence and help. But best of all, we can know that our real life is going to begin after death. We are going to go be with him. There will be no children in wheelchairs, trapped inside dying bodies. We will all be perfect, beholding out precious, PRECIOUS savior! I saw this like never before in those four days.

Now, God had mercy on us. Kate does not have Rett Syndrome. I realize all of this might seem rather dramatic in light of that, but I know God took us through those days because he wanted us to see him more clearly. He wanted us to grow in many ways. He wanted us to praise him. My faith is stronger now because of facing that awful possibility. My compassion is more acute for families who do have children who will not walk, or speak, or be well this side of heaven. I want to hold on to these things. I don't want earth's insidious whisper to find rest here to deceive me again.

The words to the song "The Valley of Vision" from the book by the same name were flowing over my heart through this season and I'll leave you with them. Read them all if you will, they are so very good.

When You lead me to the valley of vision
I can see You in the heights
And though my humbling wouldn’t be my decision
It’s here Your glory shines so bright
So let me learn that the cross precedes the crown
To be low is to be high
That the valley’s where You make me more like Christ

Let me find Your grace in the valley
Let me find Your life in my death
Let me find Your joy in my sorrow
Your wealth in my need
That You’re near with every breath
In the valley

In the daytime there are stars in the heavens
But they only shine at night
And the deeper that I go into darkness
The more I see their radiant light
So let me learn that my losses are my gain
To be broken is to heal
That the valley’s where Your power is revealed

(taken from sovreigngracestore.com)

Pajamas and Ice Cream

Here is Sam getting in a little morning reading while strengthening his neck and back:)

Last Thursday Aunt Liz and Uncle Mike invited us to Sonic for an after dinner treat. Of course we said yes! I gave Kate her bath before dinner so she could be in her jammies and all ready to go get ice cream after dinner. I snapped a few pictures of her in the bath, but she wasn't into it, as you can see below:)

Sam hung out with us. They aren't ready to take a bath at the same time yet. I am looking forward to when they can though! This poor boy hardly ever gets bathed I'm ashamed to say.

Kate wore her ice cream jammies to get ice cream. I was trying to get a picture of her and Aunt Liz but she had spotted the merry-go-round and was totally distracted.

All smiles once she got on the horses!

This is how Sam spent our time at Sonic! This is highly unusual. Usually if he is in his car seat but the car is not moving he cries his head off!

Watching TV with big sister

He is strong enough to sit in the Bumbo seat for a few minutes now! Kate makes me laugh so hard in this picture. Sorry to catch you at such a bad moment baby girl!

SUCH a smiley boy!!!

Adorable feet!

Kate's Health

It's been awhile since I've updated on where Kate is health wise. When she first got diagnosed with the Epilepsy and put on medicine (which worked immediately) it was easy to forget anything had ever been wrong. The whole process was so quick and seemed resolved so easily. However, about 6 weeks ago we began seeing seizures again. These were different then the initial seizures because she was waking from naps and nighttime sleep. She would be going through a series of little all over twitches when we would go to check on her. She would have 4-5 twitches and return to normal. I called the doctor and she increased her medicine dose and told us to call back in 2 weeks with an update. We saw decreased seizures but not total disappearance. So, I called again but the neuro didn't want to do anything else just then and said to call if things continued.

Well, they have continued and seem to be worsened. David and I both feel like she is having seizures at times during the day that don't show any symptoms. There are moments when Kate will be totally fine and playing or eating and then will suddenly begin to cry and become very upset. She is also continuing to have the seizures that wake her up at night. After I called the neuro again she ordered a 24 hour EEG. It's scheduled for the 24th of March. This means Kate will go in in the morning to have the electrodes placed on her scalp then we'll go home and she has to wear them for the next 24 hours. If there is any seizure activity the neurologist will be made aware of it promptly incase we need to make any medicine changes. It's obvious to me that a medicine change is needed but I think the doctor needs more info to go on then our rather vague reports.

I am relieved that Kate is going to have the 24 hour EEG because I really feel like we need a better picture of what is going on with her. I am really hoping some seizure activity shows up because I know she is having seizures and I want her to get the treatment she needs. I am also really nervous! How we are going to keep her from ripping the electrodes off over a 24 hour period I don't know. Hopefully she will forget they are there after a time. David is going to take the day off from work to be home and help. I don't think there's anyway I could care for Sam and keep Kate happy and distracted enough otherwise. I'll update once we have the results of that.

On the developmental front, David and I finally took the plunge to have Kate evaluated by Mecklenburg county's child development service. We have a number of friends who used this service for their children and were/are very happy with it. Our experience thus far has been very good. I had the initial interview with the case worker yesterday morning and I really like her. Kate has a hearing and eye exam on Monday and then on the 31st of this month the case worker, a speech therapist, and a psychologist will come to our house and do the actual eval. They test Kate in 5 different areas of development (language, gross and fine motor skills, social, and cognitive) and we will get the results that same day. If she is 30% delayed in one area or 25% delayed in 2 or more then she qualifies for therapy through the county's program. If she doesn't qualify but does have delays they will help us get set up with some other venue.

To be honest I'm kind of hoping she does qualify! Her slow progress in talking as well as in understanding what we say to her has been frustrating to both David and I. She is able to communicate her wants/needs pretty well using just one word at a time but we really want to see her grow in knowing how to put words together to express her thoughts out loud! It's truly hard for me to imagine her ever talking. I can't even picture what it would be like to have a conversation with her, however rudimentary it might be.

If you took the time to read all of this, thanks! I certainly wish that we weren't facing all these things with our little girl. I wish she didn't wake up crying from seizures. I wish she would sit and let us read a book to her, or pretend to care for her dolls, or know what to do when I ask her to get a diaper for Sam. I know all these things will come in time even if I can't imagine them actually happening. And I know God has made Kate. He made her the way she is for a reason. Probably many reasons. He will give us the grace and wisdom to care for her as we ask him for it. He can heal her of her seizures so that she doesn't have to be affected by them. She is a precious girl and I love her so very dearly. I want to help her in every way we can!

Just Pictures

My Look-A-Likes

Don't they look a lot alike!?

Just Throwing This Out

I love to research baby items. Cribs, car seats, strollers, cloth diapers, baby carriers, pacifiers, bottles. You name it, I've probably researched it to death sometime in the past 2 years. I google, read reviews, look at pictures, and YouTube videos. Yes, I'm crazy, but it's kind of my hobby:)

So here is what I'm throwing out: If you need to make a baby item decision and don't have the time or desire to do research, and would trust me to do it, let me know and I'll get to work! I'll gather information and send it your way (I'm not gonna lie, I'll probably throw in a bit of my own opinion too;)

Checking In

I don't have time to write much as Kate is waiting for me to get her up from her nap, but here are some pictures from the past month or so. Sam was 2 months old on Valentine's Day! I took him to the doctor this past Tuesday for his well check and he is our little pork chop! He weighs 13 lbs. 9 oz. (90%) is 24 in. long (75%) and his head is only in the 40% (ha! He got Dave's small head:) He has a little flat spot on the right side of his head so we need to encourage him to turn his head to the left as much as we can. Other then that, he is healthy as can be!

Here are a few recent-ish pictures of Kate. She's so active these days I can't really get a good photo of her with my point and shoot!

Really needing her bangs cut!

Watching "Einstein" on our bed

More Einstein on the iphone:)

This little series of pictures is from quite a few weeks ago and the quality is poor, but I loved them!

Getting bigger!

The majority of pictures I take of Sam are of him sleeping because he just looks SO cute whenever he's asleep on his tummy (which he is only allowed to do for naps. Swaddle blanket and back sleeping for nighttime:)

Look at those little lips!!!

Precious skinny legs and pudgy feet

Big cloth diaper bum!

I just took these next pictures two days ago so they really show what he looks like now. He is ALL smiles when awake and being talked to! He also really gurgles and coos in response to us talking to him!

Most of my cloth diapering paraphenalia! But I'll update on that another day:)