Thursday, October 17, 2013

Do You Want To See My Wonderful Day? Part 2

Smiling when walking outside of a doctor's office is always a good feeling. It turns out that Lydia has put on some weight lately! Last December Lydia weighed 24 pounds. That's the last time her medication was increased. She was seen over the summer, but her dosage was still in therapeutic range for her weight, so no changes were made. Today, she weighed 32 pounds. An eight pound difference is pretty significant when you only weigh 32 pounds! 

So needless to say, her medication was increased today. Hopefully it will be as simple a fix as that. There's a tiny chance though that it won't be that simple- the seizures she's having now are a little different than the seizures she had a year and a half ago. In 2011 and 2012, she had blank stares lasting several seconds, and no confusion afterwards. She bypassed a brain MRI because that type of seizure is classic for absence type, plus her EEG at the time pointed to generalized seizure activity. (Basically- there wasn't a worry for brain tumors because the entire brain was seizing at one time. The seizure itself didn't start out in one particular spot. So no brain scans were ordered.) Recently though, she has had a few seconds of confusion following the "longer" seizures, which is not consistent with absence type. If the increased dose doesn't stop the new seizures, she'll have an MRI just as a precaution. I highly doubt that will be the case, but I've been wrong before!

The neurologist is so great at reassuring me. Her attitude is, "Yeah- she has epilepsy. But she takes medication with very little side effects, and she can live a normal life." I know this in my head, but it feels good to have the specialist tell it to me straight like that. Lydia may have epilepsy well into her teen years, or even beyond- but our girl is one of the very fortunate kids living with epilepsy. And we are incredibly thankful.

Another thing the neurologist is awesome at: tough love. Lydia wasn't cooperating during the exam- she refused to walk on her tiptoes, hold out her arms, etc. The neurologist kept warning her that there would be no prize from the treasure box if she didn't cooperate. Lydia called her bluff. Only- it wasn't a bluff. Lydia walked out to the car with no prize, per doctor's orders. Yay for someone brave enough to not reward bad behavior inside her office! Isaac did get a prize, but he was sad for his little sister. He told me in the car that he wished Lydia had listened to the doctor so she could have had a prize too. (Best big brother ever, that boy!) Lydia has already said twice she wants to listen to the doctor and get stickers. I heart tough love!

So once again, thank you all so much for the prayers! God is so faithful!!! 

Wednesday, October 16, 2013

Do You Want To See My Wonderful Day?

We were sitting in the car yesterday, and Lydia's favorite Disney Junior show came on the satellite tv. She always sings the theme song and it's the most adorable thing you've ever heard. When she didn't start to sing, I looked back at her and asked what show was coming on. Then I realized why she wasn't singing. She was blankly staring to the side, and I felt my heart sink. It was several more seconds talking to her, waiting for the seizure to end before she finally came out of it and heard my voice. She paused and looked up at me, then heard the tv and started smiling and singing.

It had been a year and a half since I had to watch her go through these seizures. Her medication has worked so well, and if it weren't for the strict morning and night pill regimen, it would be easy to forget her epilepsy. We were only six months out from her two year mark when the neurologist could start titrating  her off the meds. I was so hopeful that God would heal her by then. We could put this whole nightmare behind us, and make epilepsy a distant memory. I told God how loud and how high I would praise His name and testify of His healing in her life.

After a recent growth spurt, Lydia started to seem less focused, and I wondered. I prayed it not to be true, and held on to hope. Last week at the dinner table, we opened our eyes from prayer, and Lydia had that old familiar stare. I had to say her name four times over before she came out of it and looked at me. I knew then I couldn't question it anymore. And it was so sad.

I have no doubt that He can heal her. But setbacks sometimes make me wonder if hope hurts more than it helps. That if I just accept that this is the way things are, the disappointment will hurt less. We've prayed over allergy tests that still come back positive, EEGs that show abnormal brain waves, asthma symptoms that still cause scary attacks at 3am.

Then God reminds me again of His faithfulness. I'm closer to Him now than ever before. Our family was thrust into a torrent of fear and helplessness three years ago, and it was more than we could handle on our own. Jesus was there to hold us up, and it was in the darkest of days that I have felt Him the closest. Jesus doesn't ask us to sit safely on the beach, building our pretty sand castles. He wants us to walk out to Him in the deepest of waters, to believe with unwavering trust. It's where our feet can't reach the bottom that faith is made stronger.

Lydia crawled into our bed early this morning, snuggling up close to me. While I held her, praying through tears in the dark for her healing, Hillsong's Oceans (Where Feet May Fail) came over the radio. He reminded me again that He's with us in these deep waters. The future may be unknown, but He's proven that He won't fail. He keeps us above the waves, even when faith wavers.

And when Peter had come out of the boat, he walked on the water to go to Jesus. But when he saw that the wind was boisterous, he was afraid;

and beginning to sink, he cried out, saying, "Lord, save me!"

And immediately

immediately!

Jesus stretched out His hand and caught him.  ~Matthew 14:29-31

This morning's sunrise. 

Lydia asked me over breakfast this morning, "Do you want to see my wonderful day?" My three year old's sweet words remind me again. He has given us this gift of a wonderful day, full of available joy.


Wednesday, October 2, 2013

Speech is a Gift from God

Our new unit for the next two weeks is Speech and Language. I'm remembering again why I love Weaver, which is good timing. The last few days of unit one involved some burnout and second guessing of whether we chose the right material. I'm learning that this homeschooling thing- it's hard work. It's one thing to anticipate and talk about it for months on end, and a whole other thing to dig in and do it. So I guess it's safe to say that the honeymoon stage of homeschooling is over. There are problems that need worked out and frustrations being aired out. But, just like a good marriage, I'm realizing it's most definitely one of the best parenting decisions we've ever made. For one thing, there's no "one size fits all" education model I must follow. I can teach each child according to their own needs-  needs that I am figuring out more and more each school day. Brooke is awesome at science, a natural artist with perfect penmanship and beautiful cursive writing, and is working on reading comprehension. Madeline is a whiz at math and reading, moving along at lightening speed, but is easily frustrated when I challenge her because she's not used to making mistakes. Isaac is crazy good at math, and is becoming a reader before my eyes (so fun!), but he doesn't like buckling down and doing his worksheets, because "school is boring, playing is fun." Some of it is just part of life that he'll get used to soon enough.We do enough fun projects and experiments that half the time he doesn't even realize that he's learning. 

This Monday we learned that speech is a gift of God. The curriculum called for study of a foreign language in another country, and I chose Ghana. Our Compassion child is from Ghana, and I want them to learn more about his home. I had to laugh when I started researching and realized that English is their official language. There are several tribal languages though, so it all worked out for the curriculum correlation. We studied Ghana's political history, geography, economy, and wildlife. We talked about the day in the life of a Ghanian child, and practiced speaking a tribal language. They painted pictures of the Ghana flag, explaining what each color represented, and designed their own Kente cloth on cardstock. They then wrote letters and drew pictures for Japhate, our Compassion child

 Lydia coloring her African lion.

 Pretty girl. 

 Painting their flags.

 Red for the blood shed for their independence, yellow for their minerals including gold, green for their forests, and black star for freedom.

 Puppy begging for playtime.

 He's jealous of the kids and the attention I give them. It's kinda crazy.

 Designing Kente cloth.



 The princess playing on the computer before naptime.

 Isaac's lion.

 He's learning patterns in math this week.

On Tuesday we covered the anatomy and physiology of the ear, as well as sound waves. (They made a tin can phone but I forgot to take pictures.) We learned what absorbs and reflects sound, so of course they had to test it out in the foyer.


Today we looked at how immigration affects languages spoken in different regions of the US. We then learned about the deaf community and sign language. They wrote biographies on Helen Keller and practiced some sign language. By chance (or divine timing) this past Saturday, Brooke was able to meet and sign with an elderly couple who happened to be deaf. She hasn't stopped talking about meeting them, and how much fun it was to sign with them.
 Afternoon reading today.

 Have I mentioned homeschooling rocks?