Dr. B called right before dinner and told me that Noah's labs looked beautiful - beautiful for Noah, that is! (tired gray-haired mama doing the happy dance) We will probably re-draw labs tomorrow because sometimes it takes his labs a little while to catch up with him, but I really think that we are in the clear. One happy bonus of drawing these unscheduled labs is that we were able to see another nice jump up in his hemoglobin even since yesterday! The venofer really seems to be doing the trick for Noah. How refreshing is that?? While we were on the phone I asked Dr. B again about Noah's other issues. He reminded me that Noah was really, really, really sick and was getting massive doses of really, really, really strong drugs, and that we need to give Noah more time. (hmmmmm . . . I'm seeing a pattern here . . . everyone keeps telling me the same thing but I keep asking because I'm hoping for a different answer. Sigh.) We are going to take a "wait and see" approach and give Noah the time he needs to show us what he can do. In the meantime I can cuddle him when he is confused or scared or dizzy, and carry him when it's too hard to walk. I consider it a privilege to be able to do so. (Speaking of cuddling, Noah loves to have me sleep with him when he is in the hospital. He wants to curl right up around me like a koala bear and have his head on my shoulder. Lately he wants me to lie down with him at all sort of odd times of the day when he is weary. He doesn't want to nap but he does want that favorite snuggle position, so he will lie down on my bed, put out his arms, gaze oh-so-deeply into my eyes and say, "Sleep me?" Talk about an offer I can't refuse!)
Noah (and everyone else) thoroughly enjoyed Up. Jeff and I are going to see it tonight. Yeah, that is totally backwards for us as I can't remember the last time the children saw a movie without our screening it first or at least watching with them, but we were given the "all clear" by some very trusted friends and felt that this was a safe movie. We're watching just because we spent the afternoon cracking up at the sound of all of our children laughing so hard and we want to get in on the fun! :-)
Thank you so much for the encouraging comments. Sometimes it seems like there will never be a light at the end of the tunnel. Sometimes I read blogs about kids who are facing serious issues, but they are FIXABLE issues - there may be surgery or treatment or scary things, but there is the real possibility that at the end of the day these children will be utterly whole and healthy and well. I want that chance for Noah and Eithene and Samuel and Gavin and Claire and Rafi and Mathew and Alex and Lauren and Brianna and all of the thousands of beautiful children fighting mito or other severe chronic issues. It is an amazing thing to be able to turn and bury my face under the shadow of God's wing when it all just seems to be too much. Faith is indeed the substance of things hoped for and the evidence of things not seen, and I have faith in a God who is so much bigger than me and so much bigger than mito. I've had to remind myself over and over lately that God has not given us a spirit of fear but of power and of love and of a strong mind. When those sudden icy darts of fear come over me, all I need to do is to remember that they didn't come from the Lord. He isn't afraid for Noah. His plans for Noah are for good. Please pray that we can keep resting in those truths.
I need to kiss Superman goodnight now, and smile and not cry, then get into bed with my super man and laugh at Up. :-) There might even be some peanut butter chocolate ice cream in Jeff's and my future - shhhhhhh . . . .
Blessings,
Kate
ps I listen to Your Hands as suggested. Yep, I shed a few tears too. I'll have to post the video here soon.
Took Noah in to see Dr. B today, and lo and behold Noah decided to pop a fever while he was there. Ugh. It was pretty low-grade, so we came home and Noah's nurse drew labs here at the house. We'll know how they look in a couple of hours and Dr. B will call us with a plan at that point. We discussed Noah's other issues while we were together but didn't really dig in since the focus was on getting these labs and figuring out whether Noah is truly sick.
In the meantime, Noah's temp has gone down and he doesn't look terrible. Doesn't look good either, though. Thanks to the DVD Fairy, a brand-new copy of Up arrived today for the older children. None of them have seen it and Noah is chilling out with them and enjoying it.
I'm not even going to venture a "Mommy Radar" guess on this one. As Jessica pointed out yesterday, there is a sort of post-traumatic stress thing that happens after close calls like the one Noah had so recently. It throws my instincts off completely. All I can say is that he really doesn't look awful and his temp is down.
Right now my focus is on refusing to listen to the voice of fear that says he didn't look awful in the beginning last time either . . . .nope, just not going to listen.
The Lord was gracious and I was able to get about 50 lbs each of ground beef and boneless chicken breasts at half price today so I can restock my freezer with casseroles. I'm not sure I want to dig in and start cooking before I hear back on Noah's labs (that would be a bad project to leave half-finished!!) but I may go mix up some meatloaf to keep myself busy. It's only maybe a 30 minute project so I can finish before I hear from Dr. B.
(Free homemaking tip of the day - freezing meatloaf in bulk is the easiest thing ever. Just make your regular recipe and put into freezer bags without cooking it. Smoosh the bags as flat as possible - it will thaw faster that way - and freeze. When you want to cook meatloaf, thaw a bag, dump the meatloaf in your pan, shape, and bake. It doesn't really take any longer to mix a huge batch of meatloaf than a small one but the payoffs are big when you want an easy dinner!)
Off to cook and pray and believe that Noah is fine this time.
Posted By Gena Suarez, The Old Schoolhouse Magazine
At a homeschool convention last year, another vendor and I struck up a conversation. He had a lot of energy but seemed a bit uptight; however, he readily admitted that he felt totally out of place because he didn't homeschool and this was definitely not his "typical convention." Not really interested in finding out what his "typical convention" was like, I smiled and assured him that we all knew he was out of place the minute he walked in the vendor hall, but we're a polite group and so we didn't point or stare as we talked about him to each other. He grinned and relaxed a bit.
"Obviously, you're a pretty direct person," He said. "So I was wondering, how does a guy who knows nothing about homeschooling sell his product to homeschoolers?"
Ignoring the fact that this out of place "greedy capitalist" was there just to make a profit, I chuckled and asked him, "Why do you think homeschoolers would even want to buy your product if you know absolutely nothing about us?"
He didn't seem to want to answer that, so I continued, "Get to know us a bit and you'll figure out it's not that hard to sell to us. We're pretty frugal but can be gullible in the right circumstance with a promising product, especially at a homeschool convention."
"Fair enough." He replied. "Then I'd like to show you my stuff and see what you think. But first there's one thing I've been wondering about homeschoolers for quite a while now."
"Oh, and what is that?"
"Why do you homeschoolers have so many kids?"
"Umm, gee, maybe it's because we have more exciting things to do than watch Jay Leno after the kiddos go to bed?!?" (Okay, I didn't really say that but I did think it.)
Instead, I politely tried to explain that for some of us homeschooling isn't just an educational choice but a life decision based on a belief that children are as a blessing from God. He wasn't getting it and I was getting hungry so the conversation quickly died of natural causes.
If I ever run into him again, however, I'm sending him over to Ethan Demme (of Math-U-See fame) who gives a much more thoughtful and complete answer to the question, How do I reach the homeschool community? His post is directed at politicians but he starts from the same premise that you have to know something about us, past and present, in order to reach us.
As a homeschool grad and marketing guru, Demme provides an excellent round-up of information and resources to understand this growing but changing movement of homeschool radicals who actually believe they can teach their children at home and live to blog about it. Check it out and keep in handy if you ever run into my vendor friend at your state homeschool convention.
(Note to Demme: Please add a paragraph on fecundity and homeschoolers, thanks in advance.)
Noah's hem/onc clinic went well today. His hemoglobin is up over a point since he was discharged almost a week ago - that is great news. He has quite a ways to go still, but it looks like we are moving in the right direction with the venofer. He had a venofer infusion today in the day hospital (in the clinic) and will be returning weekly for infusions for a while. The goal is to work him to the point of only one infusion per month.
We are doing this in an effort to get Noah's hemoglobin up and keep it up while reducing the number of transfusions he needs. Noah's anemia is just one small part of the issues he faces, but I have to tell you that it feels GREAT to feel like we are making headway even in one small area!
The only "downside" to the visit is that we now have no explanation for how utterly pitiful Noah looks and feels. He is startlingly pale and often has very little color even in his lips, but has dark circles under his eyes. He has very little energy and even a short time of active play leaves him completely drained. He is also having episodes where it seems hard for him to walk. It's hard to explain what it looks like - almost like he has a major muscle disorder or is walking on a very painful surface. The first time he did it I thought his shoes must be on the wrong feet (we have checked his shoes for fit, comfort, etc.) When he does this, he very quickly asks to be carried. I asked him today if walking made his legs hurt. He said no, that walking makes his legs cold. Any ideas on this?? Another really odd issue is that Noah has become VERY photophobic since this illness. He has always been a little sensitive to light (probably because his pupils often fail to constrict properly), but he wants most of the lights out all of the time. He was very upset the other day because I wouldn't "turn off the sun." He had several episodes of utter hysteria in response to light in the hospital, and while things are easier here (easier to control light levels), it is still clearly an issue.
Noah's current state is such a mixed bag. One one hand, he doesn't look very good at all, but on the other hand he is the picture of radiant health compared to where he was 2 1/2 weeks ago. I KNOW that I need to be patient and remember that Noah was very gravely ill and that he has come a long way in a short time, but it is hard to wait. He needs to get strong so he can stay strong and stay home and healthy for a long time.
I know this probably sounds whiny. I'm incredibly thankful that Noah is doing so well - I really truly am. Just seeing him makes my eyes tear up several times a day. Things could have gone very differently and I don't want to come across as anything other than profoundly thankful that Noah is home . . . yet it's painfully hard to see things like him struggling to walk even though I am immensely grateful that he is walking at all.
We'll be seeing the wonderful Dr. B (Noah's new pediatrician) tomorrow for a hospital follow up. I'm hoping he can offer some guidance on how to get our "old Noah" back. The hematologist feels that this is just the price Noah is paying from being so very, very sick. While that makes sense, I also want to do anything I can to help him feel better.
Thank you to all who visited Eithene and prayed for her yesterday. They were able to get her a functioning broviac (YAY) but she still has a very long way to go, so please keep praying. As some commenters mentioned, Gavin's family needs your prayers. Little Gavin went home to be with the Lord late last night. He was only a few weeks older than Noah and had been fighting mito very hard. His fight is over and he is at peace now. No more mito, no more infections or lines or pain. I hate this disease so much. I can't imagine the pain his parents must be feeling. Praise God that they have the sure hope of spending eternity with their beautiful little boy.
I'll try to blog after our appt. with Dr. B. tomorrow.
• Nov. 9, 2009 - Apollo Eight Astronauts Read From Genesis 1968
Posted By jaminacema
The other night my daughter came to me with her Awana book and said "It says in here that in the 60's the Astronauts read from the book of Genesis on Christmas Eve from the Moon. Is that true or something Awana just made up?" I happened to be sitting at the computer so I played this for her...
I am assuming I don't remember this from the original airing since I was only 3 in 1968! But I do remember hearing it before. It is quite touching to listen to and somewhat sad to think about how much our world has changed in the last 40 years. I can't imagine something like this happening today and obviously neither could my daughter since she thought they had made it up for Awana.
I am praying for a revival for America! How awesome it would be to NOT be surprised to hear prayer in this country! How wonderful it would be for my children and grandchildren to live in an America that honored the one true God! Please join me in praying for our country.
Please all take a moment to visit our precious little friend Eithene - http://www.caringbridge.org/visit/eithenerosehilliard . She is Noah's age and is desperately in need of our prayers right now. She had several MAJOR surgeries last week and has had a very rocky road recovering. Her broviac broke and is not working, and this is her LAST available broviac site. Her j-tube (like Noah's g-tube in his tummy) is clogged and can't be replaced for at least 6 weeks due to all of the major abdominal surgeries she just had, AND she is losing an IV that took an hour to place. She is greatly in need of healing, peace, and access - and I know her mom Jessica could use some rest! They are in Children's Hospital in Boston. I don't know if any of you are local and/or if there is anything tangible that this family needs right now, but if you are local it wouldn't hurt to email and offer a hand.
Noah needs some prayers too. Tomorrow we will be heading out EARLY in the morning for Greenville to go to the Hematology/Oncology clinic. Even after 3 IV Venofer infusions, Noah's hemoglobin was extremely low at discharge last week. He was making baby red blood cells, so the docs held off on transfusing him so we could see what he was going to do. He doesn't look like his hemoglobin is up by much. He is very pale and tired and even his lips have lost most of their color. I would LOVE to be guessing wrong on this, but we will find out one way or another tomorrow. If he is responding OK and his hemoglobin is coming up, then he will probably get another Venofer infusion. If these are working, then apparently we'll do this a couple of times a week for a while, then once a week, then eventually once a month.
If he isn't responding, I'm not sure what they will do. They can transfuse in clinic, but I don't know if they can transfuse Noah or would want him in the hospital itself. I keep thinking that surely he must be responding since he was making those baby cells, and that maybe he is just still wiped out from being so sick.
I'll try to update when we get home tomorrow. Please don't forget to visit Eithene and leave a message in her guestbook - and to pray, pray, pray for this precious little one.
On Oct. 1st the kids and I were in the car headed to the pumpkin patch! They were all dressed in fall t-shirts and I was ready to take some great pictures! Then it started raining...I pulled over and made a few quick calls to the homeschool friends we were suppose to meet. We all decided to go another day. Little did we know it was going to rain for 30 days straight! (I am exaggerating a little here, but honestly this is the wettest Oct. I have seen in my life!) Meanwhile we were in the middle of moving. The rain meant we were moving in the mud and the last thing I wanted to do was trek out into a pumpkin patch and collect even more mud. As the month headed to a close I started to realize a trip to the pumpkin patch was not going to happen. So I did the next logical thing...I decided to have a Pumpkin Party! LOL
What is a Pumpkin Party??? Honestly it's something I made up. But, we had our first one on Nov. 2nd with 97 people in attendance! Thankfully the rain finally stopped and we found a park with lots of concrete to keep us out of the mud. The party was a huge success and a LOT of fun! Here are the highlights....
We started out with the kids each decorating a pumpkin cookie.
Then they ate their cookies while waiting for the pumpkin story to start.
Next we listened to the Pumpkin Gospel You can read all about the story at the link below http://ginaconroy.com/ginablog/wordpress/2007/10/30/the-pumpkin-gospel/
Then we played pumpkin games!
Pumpkin Parachute Game. I got a package of Fun Foam Pumpkin and made a smiley face on one with a marker. Then they would put all the pumpkins in the parachute, throw them up in the air and the person who found the smiley face got a piece of candy. Repeat until everyone wins!
We also had Pumpkin Hot Potato.
And we had Pumpkin Relay Races!
We finished off the party with lots and lots of pumpkin food! Everyone brought a pumpkin dish to share. We had pies, breads, cakes, cookies, pumpkin dip. The food was amazing!
It was a great day and I am sure we will have many more pumpkin parties in the future.
It just so happens that all five of the people in our family have birthdays in a six-month period. So from mid-August to mid-February it feels we are constantly in birthday mode. Tomorrow is my husband's birthday, so that got me thinking about what birthday freebies are out there. I found some great ones, including a list of restaurants that give free food on your birthday! There are also free printable cards, cake ideas, and much more!
I hope you enjoy this week's birthday freebies!
Family Fun has a wonderful selection of birthday cake ideas you can easily make at home. I have made many of these for my family, and they are always a big hit!
This is a neat website. You can see a time capsule of the day you were born. Find out what bread cost, or how much you would have paid for a car. Learn what the minimum wage was and lots of other fun information!
A journal of our home educating endeavors and our walk through life.
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You can read all about the story at the link below
I got a package of Fun Foam Pumpkin and made a smiley face on one with a marker. Then they would put all the pumpkins in the parachute, throw them up in the air and the person who found the smiley face got a piece of candy. Repeat until everyone wins!
The kids loved this! I got the idea here: 
