Metabolics and Homeschool Philosophies

I've found two child-rearing "rules" so far.  They're complicated so pay attention. 

1. Follow Biblical guidelines. 

2. Let each child be their own person. 

Ok, maybe not so complicated. 

I don't expect my children to be the same as each other or the same as their friends. I don't expect them to like the same things or develop on the same schedule. And that's good. You know why? Because they aren't the same!  If you compared me with twenty five of my peers chosen solely by location we might not even be on the same page. I would look incompetent compared to some of them and I might be a genius compared with some others. Wouldn't comparing me with myself yesterday or last month be a more accurate way to discern what I'm learning? 

You see, in some things, Micah's "behind." Behind the average, I mean. (Although what exactly is an average child? I don't think I've ever met one.)  In a lot of things Micah is not "behind" at all. He has strengths and challenges and he will face them all his life. I will not teach him to give his challenges a name and dismiss them. We're going to work on them. We're going to take our time. 

How much of this is related to his IVA? I can only guess but probably a good amount of it. The official paperwork states that 50% of babies live through the crisis. And then that some of them make a full recovery. We're not at full recovery mode yet but if he continues as he has been we'll be there in a year or two (or four) I think. 

All of these factors force me to think about education. I find most modern (American) educational standards and philosophies to be a bit ridiculous. Ok, a lot ridiculous. My five or six or seven year old does not need to spend 7+ hours a day away from his family, sitting in a desk, surrounded by children his own age. How is that developmentally appropriate? And I don't really care if he tests the same as the next kid. Or reads when the neighbor's boy does. Or does math at the same level as his brother. I want him to be his best. 

I find I'm not alone in this outlook. 

Matt Walsh (in case I haven't told you, I love his blog) weighed in on this subject recently. Also just google "delayed academics" for starters. You can go from there.   

This is not an uncommon stance. Education can be tailored to the abilities and challenges of each child instead of to test questions. Quite a few homeschool advocates are also advocates of allowing children to develop at their own pace instead of pushing them to adapt to the timeline of "normal."  (And maybe even let them be children instead of pushing testing at such young ages.)

If an "expert" told me that my piano playing wasn't good enough because someone else was learning quicker or had a more natural inclination to playing I would want to quit. Why? Because I can't compete with them. I can only work with what I have. If I didn't quit, I would grow to hate it. Instead of enjoying what I was learning I would be consumed with what I wasn't doing yet. Is that any way to go through years and years of school?  

Micah and I have started preschool this year and he's doing great. And by preschool I mean that we're playing games, reading, and singing songs. Really, we aren't doing much new; I'm simply keeping track of it for my own benefit.  It's fun to learn what works for him and what his strengths and challenges are.

Now here's to letting him learn on his own schedule. No comparisons. No pushing. 

(Of course I'm not talking about not pushing him to do his best. I want my children to learn to do THEIR very best. I'm talking about not pushing him to be, or to do, like someone else.)

I know plenty of people, my husband and myself included, who went successfully through a public or private school system. What about you? What led  you to your educational choices? How are they working out for your family? 

Christmas Food Traditions (Or Why We Eat Carnitas at Christmas)

My husband read that title and said, "Because they're good." True, but not quite where I was going with this post. 

Traditional holiday food is turkey and ham, mashed potatoes, stuffing, rolls, deviled eggs, and desserts. Along with other items that vary by family and region. These dishes are all high in protein. (Seriously, count the protein in your food one day. It's a little shocking.) That means Micah can't eat them and there aren't many low-protein substitutes for turkey. 

So we have carnitas. Of course, the pork is high in protein as well. But the whole meal involves rice, refried beans, tortillas, pico de gallo, avocado, lettuce, cheese, etc.  Micah has a veggie mix in place of the pork and quite happily eats quite a few of the sides. 

Traditions are great- until they don't work for your family. We don't like having meals that aren't adaptable for Micah, especially the ones that contain so many memories. I don't know how Micah will react to his metabolic disorder at any of the stages of his life besides this one. But I don't want to unnecessarily draw attention to the fact that he can't eat all the same things we do. I want our meals and traditions to be happy memories for him as well as everyone else. 

That's what you do for your children, for your family. You change. You grow to serve them. Having children changes your life. You don't have them to be happy or fulfill your own emotional needs. If God blesses you with children, you are to assist in raising God's children. Is there any greater honor? Is that not worth any sacrifice? (Not that carnitas are a sacrifice.)

Yea, that's the kid I'm talking about :) 

So we changed our tradition. We changed it to something we felt would better serve our family. And we are quite happy with it. We love carnitas and I hope it's a fun tradition we can continue for many years to come. Perhaps even when grandchildren are gathered around our table. 

What about you? Have you changed any traditions for your family? 

Cincinnati, Presents, and Christmas Cards

Today was Micah's genetics appointment in Cincinnati. He goes on a four month rotation now (far different from the every other week rotation we did when he was a baby!)

Obviously he was having a great time in the car this morning. They were more than pleased with him and did the normal bloodwork. 

But let's talk about the Christmas present we made for Micah's metabolic doctor. Yes, because he's awesome. I have mentioned that he called us from vacation- in HAWAII- to check on Micah when he was sick once? Oh, and there was that Christmas when Micah was sick and we talked to him on the phone or by text approximately 9,000 times a day while he was visiting his family in another state. He gets a present. 

We made this adorable thumbprint ornament! Tell me that's not cute? It was super easy too, just some craft paint and a cheap ornament. 

I wrote his name and the year on the back. This is a horrible picture but the bulb reflected the light wherever I stood. And I used a gold paint pen. It's amazing. My new best art friend, I think. I'll collect several. 

Then we made chocolate chip cookies. I used a wide mouth mason jar and stacked cookies in the bottom of it. (You have no idea how hard it was for me to make cookies that were sure to fit in this jar!) Then I set the ornament in some muffin liners that I had fluffed so they would hold the ornament safely.  Then I put a green and red curling ribbon around the top and tied it in a bow. 

I cut some kraft paper out in the shape of the lid of the jar and wrote on the top with my gold paint pen. It turned out remarkably hard to see on the brown paper so I outlined the left side of the letters with a red colored pencil. Then I hot glued the paper to the lid.  Cute, right? I hope it wasn't too cheesy :/

And there's a Christmas card saga. We had the family pictures made. We ordered the cards the day after Thanksgiving so we would have plenty of time to mail then. They shipped the next day. The postal service lost them in Memphis for two weeks. They refunded our money over the weekend. What? I was so sad because we had actually done everything to order the cards this year! But Justin whipped up this beautiful card for us and we saved our money! 

And really....if that's my biggest Christmas problem I am one blessed lady! 

(I promise I'm working on my photography skills. I know they're terrible!)

Random

Love, love, love this picture of me and Micah! I think pictures like this are so much better than posed studio pictures. 

In other news, there's a reason we keep an extra g-tube in the car. It's so that when Micah's g-tube comes out when we're practicing music after church we can just put a new one in. No big deal, right? Thankfully it really wasn't. Much simpler than a trip to the hospital. Kudos to my husband who could have been a medical professional. And kudos to our budget because ER visits went up with insurance changes. Again, we budget- so it's not a big deal.  Budget, oh how I love thee. Most of the time anyway. 

We're still revamping our "schedule" around here. Really rhythm is a better word. Affix tasks to certain times or other activities and then you don't have to remember them. They just get done!  (You do still actually have to do them though. You just don't have to worry about when.)

• We're still cleaning on Mondays now. So far I like it. We'll finish out the month and decide from there.
• Micah no longer naps so we are transitioning to quiet time. We're both doing well with it so far although it's a big change. 

Overall I think both of these changes will really help once we start official school with Micah. Right now we are only doing unofficial work. Don't ask me what the difference is.

I think I'll do a review of our weekly schedule rhythm in a few weeks because quite a bit of it has changed since we had Kevin. 

Enjoy your Thursday! Our pastor and his family will be joining us for dinner tonight. Doesn't that sound better than saying  that "we'll be having them for dinner"? Proofreading really is a wonderful thing!  

Micah's 3rd Birthday

"Somewhere safe."  It was the basis of my most distinct and most impossible feeling of intensive care. I wanted to yank out all the wires and tubes, snatch my baby up, and run far far away. Somewhere he was safe and healthy. Where all I needed to do was rock him and whisper sing to him during the night.  Where all he needed was food and snuggling, not Iv's, dialysis, or blood transfusions. 

Instead all I could do was wait. And pray. And wait and pray some more. Time there functions differently than in real life. It was startling to realize that life for everyone we knew was continuing as normal because life had paused inside that hospital. Things I had never considered consumed my world.  Would the ammonia counts stay down? Would he come out of his coma? 

 Every beautiful spring day still reminds me of those weeks in the hospital.  The sun shone. The birds sang. The window in Micah's room in the B-Pod overlooked the Ronald McDonald house where we had a room. We didn't stay there much. We spent nights in Micah's room listening to machines beep and tube-feeding formula, talking to nurses and watching Micah sleep. The night pace is much slower. I learned to read all the machines Micah was hooked up to; it almost caused me to have a heart attack when he started having arrythmias and we were the only ones in his room. 

The pace of the nicu may not be soothing to a mama's heart but somehow God uses it to heal small bodies. I used to sit in the rocker beside his bed and cuddle him, determined to figure out how to do whatever was necessary to help him stay healthy. Place NG tubes, mix formula, count leucine. I didn't care what we had to do as long as we got to do it.  

And we have gotten to do it. Today he turns three. That piece of my heart in little boy form. My miracle that I almost didn't have.  He grins as I kiss his face and runs up behind me for a hug. He rests his head on my shoulder before I tuck him into bed and my heart skips a beat capturing the moment. Thankfully, he's had few complications from IVA. Yes, there have been plenty of doctor's appointments, trips to the ER, visits to Cincinnati, and clock-driven gtube feeds.  But God has blessed him with amazing health. And I wouldn't give back anything I've learned for a smoother experience.  Instead I thank God every day that he's still here. 

Happy Birthday, Micah! 

Metabolics and Elections

Micah had a metabolics appointment in Cincinnati today. We hadn't been back up since a month or two before we had Kevin so this was a first as a family of four. We, as usual, had a great time! Kevin slept almost the whole time we were in the car and Micah didn't sleep at all! He got really tired part of the way back and then picked up his second wind!

Micah's appointment went great! I am so thankful for his doctor and the great staff at CCHMC.  They are amazing and God has really blessed us with them! There are not many doctors who do what Dr. Burrow does and even fewer do it with the skill and genuine care for his patients that he has. They are pleased with Micah's health and drew blood for some labwork. Assuming it looks fine and Micah doesn't get sick he doesn't go back until May. (He'll be three then! What??)  They were excited to meet Kevin as well. Dr. Burrow asked us when we were having Number Three and we told him to hold his horses for a while :) 

We ate at Chili's and Micah sat in the booth with me. He's always sat in the high chair before. He had a great time eating chips and salsa with me. Although he's not learned about not double-dipping :) 

We did vote early this morning before we left! As I was walking in I was thanking God that we lived in a country where we get to vote for our leader! Maybe my choice won't win but I am glad that we have a voice. Many people around the world never get that chance! 

And now for your viewing pleasure (and because I love pictures of my boys!)

 Playing with pumpkins! 

And playing with pumpkin seeds. (It made me feel like a fun mom but made a huge mess and we haven't done it since! haha) 

 Cutie pie! 

Seeing some true personality here!

Playing with his kitchen equipment.

Playing the piano! 

Um...he actually moved him! 

He was almost asleep until I pulled out the iPad :) 

Yup, that's 48 pounds of boy! 

Valentine's Day Travel

Yesterday my lovely family journeyed to Cincinnati. Micah's bloodwork was a little off our last visit and we tweaked his diet for a few weeks before taking him to be retested. He weighed 31 pounds and is 35.5 inches tall. He was also very amusing while we were there! Par for the course.

Looking at a book in the car

Justin and I also had our blood drawn. They are doing some testing on it to be sure they know exactly what they are looking for when they test the baby. That way we will know prior to birth if the baby has IVA.

Micah sat on my lap to get his blood drawn. He always does well with this; he cries until she's done and then he stops. But yesterday when she poked him with that needle he looked at her like he could not believe she had done that to him on purpose! It was really quite funny although I didn't laugh because he was crying.

I know I've mentioned it before but I am so thankful for Micah's doctor and the other people we work with at CCHMC. They are amazing!!

We stopped at Cheddar's on our way home to eat! I finally got those cheese fries I had been wanting for days! They were delicious! Cheddar's has the best cheese fries.

We put Mary Poppins on the iPad! Best thing we ever did. We didn't turn it on until we were almost halfway home but it made the trip so much nicer for Micah!

So I got to spend Valentine's Day with my two wonderful valentines! And we always enjoy our trips and have a ridiculously good time! I love my family!

Metabolics Appointment

Micah had a metabolic appointment in Cincinnati today so off we went this morning. It was a gorgeous day and we stopped at a rest area to let Micah get out and run around for a while. He loves getting out; the car gets old for anybody. And he no longer sleeps while traveling.

Studying his toy

Micah weighs right over 29 pounds and I forgot to get his height. I'll find out this week. His doctor thought he looked really good and was pleased with his progress and his eating habits, specifically that we hadn't used his g-tube for quite a while. It takes some persuasion to get all the formula in him but it happens! His nutritionist was on vacation so we didn't get to see her but I'll talk to her sometime this week about formula changes.

The only concern was that Micah isn't talking yet. I'm not too worried about it at this point but we are going to start thinking about some options if he continues to just jabber.

His doctor also suggested that we start a blog that focused on low-protein cooking. He said he had several patients that could use the resource. So guess what we're throwing around ideas for? Yup, another blog is in the making. Right now I'm stuck on a name though. Any ideas?

We ate at Olive Garden on the way home! Yummy, my favorite! And we actually got home at 4:30, early enough to put Micah down for a nap and take one myself.

Justin and I were at King's Island on Saturday and we were discussing our first trip there several years ago. We were on our way home when we mentioned how far away Cincinnati was from home and how long the trip seemed! We've done it so much now that it seems like a drive down the road. Thankfully God has blessed us with fantastic people to help with Micah's care!

Organic Acidemia Association

The Organic Acidemia Association updated their website! The main page has a slide-show and Micah's cute face is in there! Go check it out!

Metabolics

Justin, Micah, and I went to Columbus, OH, this past weekend to attend a "Cooking Low-Protein" workshop. We made it into a mini-vacation and had a great time! Some college friends of ours live in Columbus and graciously opened their home to our family. We had a great time catching up with them!

The workshop was sponsored by Vitaflo, a company that specializes in metabolic formulas, and conducted by Malathy Ramanujam. Malathy's son has homocystinuria. She has actually developed her own line of products that are low-protein and sold at www.tasteconnections.com . The workshop was mostly focused on making low-protein breads and other carbs.

Justin was able to spend some time talking the Vitaflo reps that attended the event. Vitaflo is actually based out of the UK and they are working on developing some new products but had not found many people in the U.S. with IVA. These two reps cover 8-12 states and do not know any other families with IVA in those areas! (The rest of the families there were all dealing with PKU.)

It was interesting to talk to the other parents that attended the workshop. I learned a lot about PKU and got several good recommendations for low-protein foods.

There is a similar workshop in Mason, OH, in December that we are hoping to attend.