Wednesday, May 29, 2013
In some ways Megan had a harder time with Emily's sickness than some of the others. One suggestion from Lil and Alvin Bender was to find someone who was willing to spend some one on one time with Megan. Someone for whom she could be the focus of attention instead of Emily.
We are so grateful to Brianna for taking time to be with Megan and give her some focused attention.
Recently I asked Megan who her best friends are. Brianna was one person she named. Beads, baking, and listening to music may not sound like a lot to some, but for one struggling kiddo they meant a lot.
Emily is on Day 38!
Milk Dud Report: The corn is all planted. Unless he has to replant a field.
Monday, May 27, 2013
Friday, May 24, 2013
Tuesday, May 21, 2013
For the second time we have gone past Day 21.
Actually, it looks like we are going to beat our previous record of 29 days.
Emily is on Day #30!!!
This is the first round that Emily has been on the medicine the whole time. She is up to the full dose of amitriptyline, had an EKG yesterday, and the cardiologist says she is good to go. We were warned that it might take up to four months for us to see whether or not the meds will be effective...but at least we know for now that they are helping. We are SO THANKFUL!
To recap: Emily has Sato cyclic vomiting syndrome. There is a possibility that she also has Long QT. If I understand correctly, in Sato CVS the ACTH hormone is 600% of normal when an episode begins. Once an episode starts there is nothing anyone can do to help; we just need to get her through it. The goal is to prevent an episode from beginning. She is on amitriptyline, CoQ10, levocarnitine, and propranolol to help. Long QT is an electrical problem in the heart. The doctor is not convinced she has this but is treating her for it. The propranolol also helps this problem.
Earlier in the year we were hearing the phrase "failure to thrive" a lot with Emily. No longer! In the last two months she's gone from a size 4 shoe to a size 5 and moved up to 3T....except her legs-they are still around 18 months. I suspect she will not qualify for physical therapy in early intervention which is great! She's doing a stiff-legged jump and trying to gallop. She's still about six months behind in speech. We may hate ourselves for pursuing that once she is totally verbal. She's starting to fuss at being left behind with mom. She defines the opposite of chronically depressed.
Good health is not feeling routine. I cringe a little every time I see Emily rub her belly or rest on the floor or leave something on her plate.
We finished school last Friday. We had a marathon couple of weeks since we doubled up to finish. IT WAS ROUGH! We expected to be in China in September so last summer we did school on Mondays to get ahead a little. It worked out pretty well. We all agreed we wanted to do it again this year. We took yesterday off but books are ordered and we plan to begin next week. Kaitlyn will be starting kindergarten so I'll have four in school this year. I've been accused of being a homeschool "lifer". Perhaps I am...but I don't own a denim jumper or goats and my babies were all on formula - so I guess I don't totally conform to the image.
The kids are counting down the days until their cousins come from Mexico. Dennis and Machelle and co. will be here June 4. There's a bunch of things I'd like to get done before then.
Milk Dud Report: We hired a new employee. He's a cousin of Domingo's. At 1:00 p.m. we're switching to three times a day milking. I think Kenton said he has 225 acres of corn planted. He switched to no-till planting. We hope it is a good call. A couple of years ago, the last corn went in the ground in July so this is a bit of a switch. I think Carl started planting the soy beans.
There's a little girl named Audra who just came home from China four weeks ago. She's been sick most of that time with mysterious fevers. She is having a bone marrow biopsy today. Her family has been through a lot of upheaval. If you think of her please pray.
Thursday, May 9, 2013
I've been watching this Doug and Melissa lock puzzle for years.
But I thought it was pretty expensive for a puzzle.
Yesterday I found it at the library with three other puzzles.
For FIFTY CENTS!
I smiled all the way to the counter.
Everyone except dad has tried it out.
Wednesday, May 8, 2013
Monday, May 6, 2013
Someone had a birthday.
I'm glad I strolled down Memory Lane.
I forgot how beautiful and smiley she was...
Until she turned about 18 months.
She didn't stop crying, unless she was sleeping, for the next two years.
Drama, drama, drama.
When I knew baby #2 was on the way, I desperately wanted another boy.
Jamison was so wonderful I couldn't imagine that a little girl would be as wonderful.
I wanted to be happy regardless and prepared my heart for a girl...by the third trimester it had worked a little too well, I was sure I HAD TO HAVE A GIRL!
She has her daddy wrapped pretty tight around her little finger.
She's a lot of fun.
Her dad will be pretty happy if this is her attitude toward Prince Charming for a long time.
Happy Birthday, Megan!
Sunday, May 5, 2013
I am SO READY FOR SUMMER!
We've been busy trying to get ahead with school. We are behind for some reason. So we are doubling up and going to finish soon. If we survive the experience.
If you're wondering how school has been happening, here's our method. If Emily and I are gone the kids do math, reading, writing, and sometimes grammar. They are subjects they do largely independently. When I get home, we do a massive catch up day or two of social studies and science. It is not fun but we're making it work. Music: choral camp for the big three and Jamison and Megan are taking piano lessons. Gym: My boys think that it's scriptural to replace the word pray with wrestle. You know, pray without ceasing. The big three are playing soccer. I will admit art has been more of a pipe dream this year... which I will work to rectify. Soon. Spelling happens when I'm home. Personally, I wouldn't bother but it's required.
My parents were here during Emily's last round. They actually got to see her well for several days which hasn't really happened before. Dad gave Emily coffee. She and Kaitlyn like it. Go figure.
Mom tried to teach her "Singing in the Rain" since Emily had her own umbrella. Naturally Kaitlyn had to get in on the act. Mom also did a thorough cleaning of my house, organized everything within reach, talked me into putting away the unnecessary dust collectors for awhile, and washed a ton of laundry. I had it all caught up when I left for the hospital, but it doesn't take long to grow.
I love this picture. Emily CAN CLIMB up on the table. She's still about six months behind developmentally when it comes to the physical but she has learned to run and jump and she's moving chairs to get where she wants to climb. She loves to help me in the kitchen. Putting away the silverware is HER job. She squeals, "Mama, help!" over and over as she pulls her chair over to the drawer.
She has learned to match colors, although she really only recognizes purple right now. She loves to do motion songs. She moves her mouth and does the action but only says a word here or there. She LOVES to dance, music or not. I wouldn't say she's graceful but she's in motion.
Language development is coming along. She's just learning to put two words together like my ball or purple coat. In the last few weeks she's just started to say the kids' names. We have: May-May, Dadih, Kay-Kay, and I think Jamison is now Jay-Jay but, to the delight of the other kids, for one week he was "baby". He's done a lot of verbal coaching lately.
Her Early Education people are excited that she's doing so well. Considering how much time she has been sick, she's amazing!
Emily doubled her dose of amitriptyline on Tuesday. Tonight she ASKED to go to bed at 7:30, an hour early. She was very insistent that she wanted to go. It was a little unnerving. I had three kids asking me if she's getting sick again. It could be but I suspect we're seeing one of the side effects of the medicine. Another can be feeling dizzy. I suspect she's experiencing some of this. The paperwork mentions having your child get up slowly over a few minutes when sitting or lying down. She's not been her normally exuberant self when she wakes up lately. She's groggy and cranky which is unusual for her. I kind of miss her yelling, "MOM!" and using the crib for a trampoline first thing in the morning.
She is (mostly) her happy, exuberant self during the rest of the day.
The big kids started soccer season yesterday. Everyone won at least one game yesterday so we had lots of smiles on the way home.
Jamison and Megan have a coach who doesn't have his kids at practice. He added a practice this week that wasn't part of the schedule and I'm annoyed. Really annoyed. Personally I'd to tell him what he can do with his extra practice. I suspect the right example is to just take the kids to practice and shut up. I can do it....but I won't be happy about it.
Life feels pretty good right now. I'm so glad we'll soon be done with school, we have a busy and fun summer planned (Ah, yes, "the best laid plans of mice and men...."), Emily's source of ill-health has been identified and is being treated (whether it works or not is another story), we have SUNSHINE, and I've worked through some bitterness.
It sounds ridiculous, even to me, but sometimes I'm angry and when I don't know the source, I can't seem to get rid of it. I have realized that a huge source of bitterness has been not realizing that adding a fifth child to our family could cause us to be separated so much. I've also struggled that my dreams of enjoying the first holidays with her were not as expected. Being able to identify and express that has seemed to get rid of the bitterness. Emotionally it feels like I am in a place of peace. It may end soon, but I'm going to enjoy it while it lasts.
Milk dud report: Kenton is busy, busy, busy in the fields. He's planting corn and loving his new system. If you like technology and farming, you might like it, too. Someday I'll have to explain.