Wednesday, July 23, 2014


Not long ago, the church I was attending put something in the bulletin that just struck me as odd. Here's a little background:

One of the members of the church has a grandson who suffers from seizures. He was currently in the process of doctors trying to figure out what to do. Was medication going to help? Was he going to need surgery? What kind of surgery? Well, in the bulletin, a little about his story had been posted along with a picture and the phrase "Pray for a miracle."

I found this to be a very strange request.

It's not that I don't believe in miracles. I do. I've seen God perform them. But is it my prayers that determine if God is going to work a miracle? No. Ultimately it's God's Will as to whether He chooses to work a miracle. And what if that miracle isn't what I was expecting? Is it any less a miracle?

So what do I pray for? I pray for God's Will to be done. I know that is kind of difficult to understand, especially when I've seen God work so much in my daughter's life. But, to be honest, even when we were in the middle of the NICU and later the PICU, I never once prayed for a miracle. Don't get me wrong. It is miraculous that Princess doesn't have any lasting effects from her prematurity and didn't have any of the scary things like brain bleeds or lung issues or anything else happen. But that wasn't because I was praying for a miracle. I was simply praying that God take care of her. He told me He would. It's also a miracle that we got the diagnosis we did when we did. If there is a rare disease that is better to have than another, PHA2 falls in that category. There's a treatment for it. So many rare diseases don't have treatments.

So when someone asks me to pray for a miracle, I just find that to be rather strange. Having a special child and having followed several special children online, praying for a miracle just doesn't seem right. What exactly are you praying for when you pray for a miracle? Chances are, people are praying for a spontaneous, miraculous healing. But what if that's not what God wants? What if God wants to use this illness, injury, or other trial or tribulation to strengthen someone? What if God wants to show how He works through surgeons and doctors and technology and other advances? What if God needs to call this person Home because their work on Earth is finished?

I find the last question especially poignant when I think about sick children. But at the same time it's still a miracle. God has decided that yes, they do need a miraculous healing, but it won't be here on Earth. Instead, they will get their perfect body in Heaven.

Another thing I prayed for while we were in the NICU and PICU was the other children. When Princess was in the critical room, I didn't see many parents in there. I don't know if they just couldn't bring themselves to walk into the hospital knowing their child was so ill or if they were afraid to grow attached only to lose them. But what I did was I prayed for all those little ones in there. I prayed for the doctors to have the wisdom to know what was wrong with them so they could help them. I prayed for the nurses to notice when something wasn't right so it could be taken care of promptly.

I don't know. Maybe having spent time with Princess in the NICU and PICU, two places I NEVER thought I would be as an adult, has changed me in more ways than just what other parents who've been there say. Yes, I treasure every milestone Princess has. I pray for yet another day with both my kids. But having been through the most scary thing as a parent you can go through and coming out the other side with my faith in tact has allowed me to grow. Not just as a person, but as a Christian. When you finally realize that prayer isn't a laundry list of wishes, but that it is a conversation with God, the Creator, then things happen in your life. You can really let God handle all those things He has told you He would handle if you would just let go of them. Even though God has given us Free Will, ultimately it's His Will that will act in your life, if you let it.

Thursday, July 17, 2014

Daily Calendar Notebook

I loved the idea of calendar notebooks for the classroom when I found out about them last year on Pinterest. Well, I'm not looking to keep 30 students on task during calendar time, I'm working with just one, so I did a little researching. On Confessions of a Homeschooler's Calendar Printables, I found a preschool version! I printed out what I wanted (her version has lots of pages to it!) and put parts of it in sheet protectors. As long as you get the glossy sheet protectors, the kids can use a dry erase marker on them and reuse the pages in them frequently.

I took these photos back in November! I just haven't written this up until now!

We have the following pages:

The daily pages where Little Man traces the day of the week, colors in the number of the date, writes that number and then, if the number is below 20, he writes the word too. I'm looking at using the Elementary ones of these pages as he gets a little better at his writing. So as a result, right now we don't do these pages. We've actually have an Elementary page in there and sometimes he'll write the days up at the top. (He gets about 3-4 letters) and he'll do a few other things on it too. And come fall, he will be doing the Elementary page instead of the preschool page.

There has also been a days of the week page and months of the year page. But this is something Little Man already knows and therefore we don't do this anymore. It will be coming out of the binder this fall. I also created a "Number of the Day" page, but now that I think he understands most of the concepts on there, we may or may not do it any more. I may keep it in there for review though.

Behind that is the blank 100 chart:

He colors in a box and then he goes and adds a craft stick to our place value cups.

I got our cards and labels hereRoyal Baloo has a ton of great stuff in the whole pack as well! We have added the States and therefore also have a blank US map that he colors in the state of the day.  Here's how we do our place value cups. When we get to 10 sticks in the ones, I rubber band them together and put the whole bundle in the tens cup. As we get more tens, Little Man counts by tens and then ones as we add more ones. This is a great addition to it and prepares them for kindergarten! This also goes along with our "Days in School" chart on our Calendar Board.

After we do the place value, Little Man would almost always counts the boxes on his hundred chart to make sure they match what we just did. 

Then there are 2 pages of where he can write his name every month. We do this at the end of the month as he has to write his name at least once every day.

After that are the calendar pages. He has to trace the date and any days we miss every day. I believe come fall these will get more difficult as he will have to write the number in himself instead of trace it.

Behind that is our weather graph. Every month we do a different pattern.

I also added numbers of 1 to 20 for him to trace. I'm not so worried about number recognition as I am about his writing the numbers and the number words. He doesn't do this anymore. These will come out come fall.

I'll be sure to post an updated version of our Calendar Notebook when I get it together this fall!

Happy 100th Day of Playschool!

Okay, we hit 100 days! YAY! For us this is kind of like a BIG deal anyway. We've had so many things happen this past year! Let's see: Princess was born in March and Little Man came out of his playschool at the end of May. Princess came home in June only to go back to the hospital for another week. So by July, we thought we had everything figured out, except Princess had appointment after appointment for months! So there were some weeks we got one or two days of schooling done. Then the Big Chaotic Mess happened and we moved. That put a damper on things again! Between my battling depression over the Big Chaotic Mess and battling with my son and appointments that can sometimes take MOST of the day because they are so far away now, we have just NOW hit 100 days! Eh, I'm not too worried about it. It was like he went 2-3 days a week and had Christmas and Easter and Thanksgiving off.

This is from our Calendar Notebook. Little Man has had to color in one square every day we've done school.

We are one day away from finishing our Alphabet Journal. We also finished learning all the letters today. And this weekend, the playroom/schoolroom becomes JUST a playroom and the schoolroom stuff gets moved inside. I don't know how I feel about that, being Princess can climb up on the picnic bench we use for schooling. And in the following photos, she climbed up there and sat down next to her brother. So, I gave her a crayon and some paper. She actually scribbled and dotted a little. She also tried to eat the crayon!

Friday, July 4, 2014

Happy 4th of July!

What a difference in a year! This is Princess. Last year, Independence Day was her first holiday out of the hospital. She was wearing a newborn onesie. This year, she is wearing a 12m dress! She has gotten so big!

Thinking about things, she has not been to the hospital in a whole year now! It is absolutely amazing to me that even though she has had TWO stomach bugs in that time, neither one has warranted hospitalization and electrolyte replacement. We truly are blessed in that regard!

It also means that the only beads she has received have been "holiday" beads put out by the Beads of Courage Facebook page! She hasn't had a Bead update in a whole year! As great as this program is, we hope to keep it that way for a while. Being in the hospital is no fun, even if you do get beads for it.

Also last week, we had our quarterly check in with the nephrologist. Princess is doing well. There was about a MOMENT that I thought she MIGHT be coming off her low potassium diet. But when I got her labs back, I don't think the doc is going to let that happen. While her potassium level was in the normal range, it was a high normal. I can't see stopping the diet being a high normal. But we'll find out in September. Dr. H also was concerned when I told her that Princess sometimes would get puffy behind the eyes. I guess it could be a heart issue (but Dr. K has said her heart is fine) or a protein issue. Well, her labs came back fine and she didn't have any protein in her urine either so that's all great news! So I guess Princess is just one to be puffy behind the eyes when she retains water. (I kind of figured, as I remember the nurses in the NICU saying she would get puffy behind the eyes.)

So, as it stands, all is well, which is good. We have a renal ultrasound scheduled (I think, it's at least planned, I have to call and double check that it's scheduled!) for September as well. So that ought to be interesting! We are continuing with the low potassium diet with Princess, which is fine. We have had two weeks off of therapy, as her therapist had some vacation time to take! She's doing well developmentally. She's starting to do finger plays (she likes Patty-Cake, Twinkle Twinkle Little Star, and Little Bunny Foo Foo). And she's even blowing kisses! I can't wait to see what her therapist says! She's got LOTS of words: "ba" (ball), "coo" (either Kool-Aid or cookie), "Bu Ba" (either Little Man's name or bubble), "cla" (clock), "Ma Ma," "MeMe," "bay be" (baby), "Da" (dog), "Gee" (her glow worm). She's doing so well! It's hard to believe all that she has accomplished in a year!
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