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Schoolhouse Widgets

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Schoolhouse Widgets

Wednesday, November 25, 2009 - Richly Blessed

Recorded By Home

We are celebrating this Thanksgiving with grateful hearts for God's gift of salvation, matchless grace, and provision to us way beyond our needs.

Thanking our Lord
for
Family,
Friends,
Faith,
Forgiveness,
and
Freedom.

Truly, we are richly blessed.

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Nov. 19, 2009 - anticipating blessings

Recorded By Hands and Hearts in Noah Updates

Noah is still home, still stable, and doing well. We're still having to spend every Monday at the hem/onc clinic, but hope to start spacing those visits out soon. We can't do the venofer infusions at home, but are hoping to start having our home nurse draw the hem/onc labs at home then fax them to the clinic so that we don't have to go to clinic if Noah doesn't need an infusion that week.

Since there isn't much going on in the Noah arena (YAY), I thought I would share a little about what our family will be doing this Christmas season. I shared a little of this last year, but it was later in December and a number of readers wished they had heard these ideas early enough to incorporate them. I can't wait for the joy and blessings that we enjoy together every Advent, and hope that some of these ideas bless you!

ADVENT TRADITIONS

We love traditions. Doing some of the same things every year at the same time builds memories and gives children a strong sense of family. It also reduces stress since we aren't having to try to come up with something new - we just know that our family does so-and-so at certain times most years. We especially enjoy our Christmas traditions. They help us slow down and focus on Advent for an entire month instead of rushing around with "gift time" as the focus. Here are some of our favorite traditions.
1. Watching the Advent Calendar DVD. This is a fun DVD with a short segment for each day of Advent. Each segment teaches about the history of one Christmas tradition. Some are secular (the story behind Rudolph) and others are religious, but none are offensive. The children scamper to get ready for bed and get the dishes done so that we can watch this each night. (Here is the link to the DVD we watch. I just noticed that there is now a "volume 2," which we have not seen.)
2. Advent calendars. After watching our DVD, we open the appropriate section of one or more advent calendars. Some years we have one candy-filled calendar per child, other years they share and take turns. I try to buy a non-candy calendar such as a lego calendar during after-Christmas sales. My mom bought them a very cute Playmobil advent calendar this year.
3. Carol singing/prayer time. After the DVD and the calendars, we make sure everyone is totally ready for bed, then we gather at the table. We turn off most of the lights in the house and light candles at the table. We sing one or two Christmas carols/hymns, and some years Jeff reads some sort of devotional or reads from a Christmas book. When we are through, Jeff goes around the table and prays for each child, then they quietly go off to bed. I LOVE this tradition. There is something very peaceful about the candlelight and the singing, and the children seem to settle in bed so much better because of the quietness. Some years we do a traditional Advent wreath and other years we've just lit an assortment of candles. This year Jeff is going to be reading from The Jesse Tree (link here) each night. We got it last year and accidentally packed it away in our ornament boxes after we decorated the tree LOL. We looked high and low for it and didn't find it until after Christmas!
4. Secret Santas. Every year on Thanksgiving, the children each draw the name of one sibling. These "secret santa" assignments are kept very hush-hush and provide a lot of happy plotting. Each child buys a Christmas gift for their chosen sibling, and also tries to get away with other little surprises without giving away their identity. (Surprises might include a little note, a little treat left on the bed, doing one of the sibling's chores, etc.) They also pray especially for their chosen sibling through the month.
5. Looking at lights. Last year when Noah was sick a lot leading up to December, we asked the children which traditions were most important to them. I wanted to be sure to focus on the things that they treasured most. I was surprised that most of them listed this as one of their top favorite activities! It's as simple as can be - I make a big pot of hot chocolate, pour it into disposable coffee cups, and we all pile into the car. We crank up some Christmas music and drive around looking at Christmas lights. That's it! Nothing fancy and no real expense, but they love it. :-) I put the littles in their pj's so that the rest of our evening goes smoothly when we get home.
6. Cookie party. Each year we spend one single day decorating Christmas cookies, and we usually invite others to share the fun. I make the dough the night before, then get right up to roll, cut, and bake the cookies. I put frosting in ziplock bags and either just snip the corners off or put decorating tips on the bags, and I put out bowls of various candies and decorations. Each child has a large sheet of waxed paper as a work surface (cuts down on mess) and they have a blast decorating, laughing, listening to Christmas music, and (of course) sampling! We often have a fun, simple dinner like pizza that night and do something special like watching a Christmas movie or playing games while eating some of the cookies. While I truly love to bake treats from scratch, the important thing here is the time spent together and the memories made, so don't feel guilty if your cookies come from a package and your frosting from a tub!! (SECRET MOM TIP: You might be wondering why on earth we invite more people - aren't eight children enough? Here's my secret . . . if I invite others to come, I'm committed to the project. If I don't invite others, it's easy to get tired or behind on housework or whatever and just not get around to doing this. Since this is something our children treasure, I build in a fail-safe to be sure it happens. Remember -accountability is your friend LOL)
7. Decorating. We usually get our tree the Saturday after Thanksgiving, and we've built in lots of rituals and traditions there. We have a local tree farm down the road that offers free hayrides, a petting zoo, and all sorts of other festivities. We head there, enjoy the fun stuff, and buy an ornament or wreath or something. Since we don't buy our tree there, we feel like we should buy something to express our thanks for the fun they provided our family. We then head to a local tree lot that donates all of their proceeds to charity, and we get our tree there. This involves a great deal of debate and voting (and lots of playing hide-and-seek among the trees LOL) with each child hoping that his or her pick will end up being the "perfect tree." Each child receives a Christmas ornament each year, so decorating the tree brings back lots of memories and laughter as we talk about why a child got a certain ornament when he or she was younger. We also do some simple decorating around the house. (SECRET MOM TIP: Putting out some simple decorations is the best "clean up" strategy I know. Our house stays nicer looking during Advent because the children know they have to clean up really well before we decorate, and they aren't going to dump "stuff' on surfaces that hold decorations.) We often invite the grandparents to join us for our tree decorating time.
8. Reading by the fire. Over the years we've collected a box of books that we only pull out at Christmas. We try to take some quiet time in the afternoon to light a fire and sit and aloud. Other years we just pick a really good book (like The Lion, the Witch, and the Wardrobe) that is a great read but not Christmas-y.
9. Family room picnic dinner. One night each December, Jeff and I will pick up a bunch of fun, snacky things for dinner and will serve dinner in the family room - usually with a movie. Favorites include clementine sections, meat/cheese/crackers, popcorn (maybe with special seasoning), sparkling grape juice, nuts, etc. Dessert that night is always s'mores with marshmallows we roasted in the fireplace. This is another one of those simple, inexpensive things that we all just love!
10. Crafts or hands-on projects as time, money, and busyness allow. I wanted to make a Jesse tree with the children last year, but it would have meant a level of stress that I wasn't willing to accept. Maybe we'll do it this year. Some years we make lots of homemade gifts for family and friends, and some years we just make cards. Oriental Trading is a good source for inexpensive craft kits that are generally packaged by the dozen - if you don't have a big family, go in on a couple of packages with a couple of other families and divide everything up. We've used these for homemade gifts or just for a fun afternoon activity. Lots of prayer is the key here to know what is right for your family this year.
11. Sharing with others. Again, this varies by year to year, but we always try to put an emphasis on serving those who are less fortunate than ourselves. We've found that if we pray and are sensitive to the Spirit, the Lord will impress the right opportunity on our hearts. We've done things like Angel Tree (waaay more meaningful if you can sign up to help deliver the gifts, btw), Operation Christmas child, making blankets for needy children, we decorating placemats for Meals on Wheels or making and taking gifts to a nursing home - it all just depends on our season of life that year.

What we DON'T do during Advent is run around to parties and activities. We almost always turn down invitations to outside activities during December. Our focus is on lots of shared activities WITHOUT stress. This is a season of joy and blessing for us, and if any activity is going to rob us of our joy, then we don't do it. It's that simple. We put a really high priority on being together as a family and having peaceful days. This is especially important during Advent and we hope it's sending our children the message that this season is about so much more than gifts, materialism, and the rushed madness that seems to be the norm this time of year. Children really truly don't need expensive, elaborate, busy Decembers. It's surprising how much they cherish little things like the treat of some eggnog after dinner, a special dessert, the surprise of hot chocolate, cookies, and a read-aloud in the middle of the afternoon "just because," and so forth - and a calm, unstressed mama who has time to snuggle is far more
precious to children than anything money can buy!!

It's also important to take extra time with your husband during Advent. Consider his needs and be sure to incorporate any traditions that he finds important. Jeff and I have a weekly date night, but during Advent we try to find time for more mini-dates too - even just sitting in front of the fire with some cocoa for a little while after the children are in bed. Take extra time to pray for him during this season. It's easy to feel like we mamas can get overworked during Advent, but don't forget that your husband may be feeling extra pressure due to extended family dynamics, finances, etc.

GIFTS

When it comes to finances during Christmas, we learned have learned how to abound and now we are learning how to be abased. Whether we had lots of money to spend or not, we realized long ago that it was easy to get overwhelmed with STUFF during December. Three of our children have birthdays in December - add that to Christmas gifts for 8 children and you are talking about a boatload of toys and games and so forth. Several years ago we decided to give just one really nice gift to each child, plus a really nicely loaded stocking. They also each get a gift from their Secret Santa Sibling, and we also often give several multi-child gifts, such as a game or DVD - things that multiple children can enjoy together and that don't belong to any one person. Since our children have very generous grandparents, we've encouraged the grandparents to focus on things like swim lessons rather than tons of toys. (Other non-stuff ideas are zoo memberships and museum memberships, or a joint family item like swing set.)

Now I'll be honest here. I'm not sure that we'll be buying much of anything for the children this year, including a tree. The money just simply isn't there . . . but that is OK. It is really and truly fine. I'm sharing this because I want to encourage others out there who are experiencing serious financial issues this year, but I am NOT sharing it to garner sympathy. Like I said, Jeff and I don't see this as a problem. Instead, we've seen it as a challenge. We've tried to live in such a way that our children could see Christmas for more than the gifts. There was a time when I thought that children HAD to have piles of gifts or it "wouldn't be Christmas." I've learned better, and our children have too. Even though historically we've bought them some very nice things, gifts are never mentioned when we ask what they enjoy most about Advent. This season is so rich, and that time of gift opening (while admittedly loads of fun) isn't the point of the season. Our children won't be "deprived" this year. If nothing else, they will certainly be getting gifts from their grandparents.

I'll say it one more time, because it bears saying, and because I don't want to get a bunch of critical emails from people who missed it the first time I said it . . . this is all OK. I'm not looking for sympathy. I truly don't need it. Jeff and I really are at peace with this. I wouldn't be honest if I didn't admit to a twinge of "oooh, I wish I could by such and such for so and so," but it's really only been a twinge. Our children know they are loved by both their earthly parents and their heavenly Father, and they are right with us anticipating the blessings of Advent - blessings that don't come wrapped in shiny paper with big bows on top. They also know that in every moment of their days they are so incredibly, abundantly blessed FAR beyond so many other children in the world!!

So if I'm not looking for sympathy, or complaining about money, then why get so transparent and honest and real here? It's because I would imagine that some of you are in similar situations, and maybe you could use the encouragement of knowing you aren't alone in this. Maybe some of you aren't in this situation and are realizing that maybe you've put too much focus on the stuff, and maybe you could use the encouragement that comes from hearing another perspective on this.

I've got some practical encouragement here too. The Lord has led us to various opportunities to obtain some of their birthday gifts (for the December kids) for free or for very little money, and we KNOW that He will lead us to similar opportunities for Christmas gifts if the children are meant to have them. We've already found a number of free or almost free goodies for their stockings. One focus in being this transparent is to share how we have gotten some of these items. Listing all of my tips and tricks is really a blog post of its own, and I'll try to write it and get it up in the next day or two. There are some amazing bargains to be had if you look to the Lord and get creative!!! In the meantime, can I humbly encourage you (regardless of your financial situation) to take some time to pray about how the Lord would have you celebrate this Advent? If you have an open and obedient heart, I promise you'll be blessed!

Blessings,
Kate

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Nov. 14, 2009 - Whew!

Recorded By Hands and Hearts in Noah Updates

Looks like Noah's false alarm is now a really truly official false alarm. It's Saturday night and all of the cultures are still negative. Both Dr. B. and our wonderful home health nurse have spoken to the lab supervisor and we are setting some additional safeguards in place to prevent this sort of issue again.

I'm not really angry anymore, but I am still really sad - sad AND thankful. I'm sorry if my reaction led some of you to think that I wasn't thankful for an infection-free child, and I am fully aware that there are many moms who would love to hear that their child wasn't sick after all. Believe me - there have been so many times that I would have loved to have been told that Noah was fine and I could go home. I loved the "he's not sick and you can go home" part of this deal - absolutely loved it. It just really and truly broke my heart that he had to suffer so very much because of a preventable mistake. He still has bruises and it all makes me very sad. (Oh,and yes, I do see this one as a mistake rather than an answer to prayer. To the best of my understanding, the test was done correctly and recorded correctly but the person who called Dr. B simply literally read the results wrong. When Dr. L from ID called the lab, the tech read the results correctly. I am using the word "read" in the literal sense here, not in the clinical sense of interpreting results. It is certainly an answer to prayer that Noah was not sick, but I'm not getting the sense that God reached in and changed the lab report.) Anyway, I blogged in the heat of emotion and apologize if my words were too heated or if I appeared ungrateful.

Noah's big joy right now is that he received the coveted Thomas toy that caused such a ruckus at the hospital. I had mentioned it in passing to his home nurse and she very stealthily :-) asked me for information about the DVD (which contained the ad for the toy) under the pretext of wanting a good new Thomas DVD for her adorable little boy who is a little younger than Noah. She then ran out, bought the DVD, opened it to find the ad, bought the toy and showed up at our house with it less than five minutes after we arrived home Wednesday night. This is a BIG DEAL toy with a motorized Thomas and everything, and Noah has hardly stopped playing with it. (It's called the Spin & Fix Thomas and would be a big hit if you are looking for a Christmas gift for a Thomas fan.)

God has been good and I've been able to have several VERY productive days. I got almost of my chicken and beef cooked, assembled into various recipes, and frozen. I managed to do multiple batches of meatloaf, tater tot casserole, cheesy mexican casserole, crockpot cheeseburgers, individual beef/bean/cheese burritos, white chicken enchildadas, and chicken divan. I ended up getting a few more pounds of chicken yesterday so that I can do some peanut chicken, and I have several dozen eggs that I want to use to make breakfast burritos. If I can add some baked goods (thinking of cinnamon rolls, muffins, and maybe some danishes) to the freezer next week I will feel very satisfied. It brings me such an enormous sense of relief to know that my pantry and freezer are well-stocked so that neither Jeff nor Hannah have to be burdened with food preparation when Noah is sick. We really ran down our stocks when Noah was sick so often this summer and Jeff had to cook every night when Noah was sick last month. It's not that he isn't capable of cooking (and Hannah is a truly superb cook) - it's just that somehow it makes me feel better knowing that I was able to share the comfort of a "mommy-made" meal even if I am far away in the hospital.

Of course, we are hoping and praying that Noah stays home for a LONG time and that I will get to eat every one of those meals with my family!!

Noah will be going to Hem/Onc clinic again Monday and will probably get another Venofer infusion. I'll try to update when we get back.

In a non-Noah related prayer request, (actually it's also an answer to prayer!), we are finally ready to start selling our Hands and Hearts History kits again! Many of you know that our home business was severely affected by the CPSIA and we had to discontinue our flagship products. Due to a temporary stay of enforcement of the CPSIA, we can now offer the kits at least for now. The stay of enforcement will end February 10th, 2010 and we are praying for a more permanent solution between now and then. In the meantime, we will be taking pre-orders next week and will start shipping the following week. We are offering an incredible sale during the pre-order week with tons of free gifts donated by other homeschool business friends of ours, so if you are interested in getting one of our kits, please be sure that you are subscribed to our newsletter so that you are notified when the sale starts next week. You can sign up on any page of our website ( www.handsandhearts.com). We would appreciate your prayers that this sale will go well, and would also appreciate it if any of you homeschooling moms would help us pass the word along.

Blessings,
Kate
Oh - and please pray for Rafael (http://www.caringbridge.org/visit/rafael) who has been very, very sick with a (real) gram negative infection.

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Nov. 14, 2009 - Funny Comic!

Recorded By Arianna Joy, Christian Kings, MC in Random Pictures

^^^^ I drew that myself, I hope you guys liked it! :-D

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Nov. 14, 2009 - I've been learning something cool.....

Recorded By Arianna Joy, Christian Kings, MC in Random Pictures

^^^^^^ That is a picture of the Triple-A Sibs..... I drew it just for fun! I think it's too cute! >:-D ^^^^^^^^

^^^^^^ That is my character, Kenji as a kid! He was a very sad kid so I thought the text fit him :-P ^^^^^

^^^^^^ That is another character of mine, Aina. She is a kid also. Notice her fingers?? She's twiddling them..... I thought that this fit her perfectly as well.....^^^^^^^^

^^^^^^^^^^^^ This is another charater of mine, Mokoto, as a kid...... I thought this text fit him, cuz he has the power of fire and he does look kinda cute....^^^^^^^^

Well, that's all I have for today, I did draw my alter-egos, Patience, Christy, and Naoki...... But I haven't scanned them yet..... I'll have to get to them soon...... But I'll try and post them tomorrow! :-D Have a wonderful evening..... G'night, World of HSB! :-D

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Nov. 11, 2009 - Mad as a hornet

Recorded By Hands and Hearts in Noah Updates

You all are not even going to believe this one.

We got to the hospital and got settled in, then headed off for a BUNCH of procedures in the treatment room. Noah had to get cathed instead of getting a bag urine specimen because he has had gram negative bugs grow in his urine in the past and we had to be sure we had a sterile specimin in case the gram negatives in his blood had come from a UTI. It is unbelievably hard to cath him, and he is usually sedated in the ER for this. Up on the floor they can't do sedation, but he did get some ativan to help a little.

Noah has a very tight foreskin which means that they are just working blind when trying to cath him. After almost 30 minutes of true agony the ID doctor came in and told us that she had called the lab in Greenwood to ask some more questions about his culture. Turns out that, "oh, oops" Noah is NOT growing gram negative anything. Oops. His culture is growing a gram positive bacteria that is almost always the result of a contaminated specimen - in other words, the bacteria almost certainly isn't in his blood stream at all but is due to a speck of dust.

ID said that we could go home. Like I keep saying, Noah doesn't really look bad. They stopped trying to cath him but did have to go ahead and get peripheral cultures (blood out of his arm), broviac cultures, and a bunch of other labs - but since he's looking OK we were given the go-ahead to go home and watch him with the understanding that if gets worse OR the new cultures grow something, then we come right back.

In the meantime, my baby was truly and literally tortured for 30 minutes because somebody wasn't paying attention to his or her work in a lab somewhere. Even the really seasoned and always calm nurses were traumatized by watching Noah go through this. It was horrible.

So, yeah, I'm feeling a little conflicted right now. I'm truly thrilled and stunned that we are going home, and I am heartsick and furious that Noah had to suffer like that for nothing. He was in that room in pain for just short of an hour total. He is covered in petechial hemorraging (little burst blood vessels all over from the screaming) and looks like he'll have bruises all over his thighs from being held while he fought so hard. His little boy parts are raw and hurting. Even when we were trying to do "no ouchie" procedures, he was so traumatized and terrified that he was screaming and shaking.

All because of a mistake. This would have been agony enough if we had truly needed to do this, but it is unbearable to know that he didn't need to go through this. Anybody need an object lesson for your children on why it is important to always do our best and always pay attention????

To top it all off, Noah just got a new Thomas DVD. He was holding it in the car on the way here and had a meltdown because the package contained an ad for some new Thomas that you put in a tunnel and fix or something. He decided he had to have that toy right now (sound like a three year old?). Jeff and I were trying to calm him down and making a mental note to try and find this toy for Christmas or something. Well, the Child Life worker brought that new Thomas DVD into the treatment room for Noah to watch. It had a commercial for the toy, of course. When we were done and ready to leave the room, I told Noah it was time to go to the prize box - and in the next breath said "Oh, and let's get your new Thomas too." I MEANT let's grab the new DVD so we don't forget it, but Noah thought that the new TOY was going to be in the prize box. Let's just say I am no longer a contender for the Mother of the Year award. Talk about adding insult to injury - and I was so shocked by the news of the lab error that it took me a few minutes to figure out why he was sobbing instead of picking out a prize.

Fortunately Noah is very resilient and forgiving. Child Life loaded him up with goodies which he is enjoying, and he is happy that he is going home. So am I. I just want to go home and hold him and rock him and pray that he will forget this all.

We'll be leaving as soon as we get the paperwork.

Blessings,
Kate

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Nov. 11, 2009 - Noah is going to the hospital.

Recorded By Hands and Hearts

Hey, this is Hannah Grace (Kate's oldest daughter). I am posting for Mom because she is packing...she and Noah are heading to Greenville hospital. Dr. B got a call at 5am this morning from the labs saying that Noah's blood Gram Negative bacteria. He waited a little bit and then called us this morning. Nothing is growing from his line yet, so this bug may have come from his gut.

Noah doesn't look really bad, and we are glad that we caught this fast. In fact, that's probaly why his labs looked so good last night - because we caught this so fast. Noah has had a hard time with Gram Negative bugs in the past, and he really needs your prayers.

Mom will update when she knows more and has a chance.

~Hannah Grace

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Nov. 10, 2009 - He . . . . . . ISN'T!

Recorded By Hands and Hearts

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.

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Nov. 10, 2009 - Is he, or isn't he?

Recorded By Hands and Hearts in Noah Updates

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.

Kate

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Nov. 9, 2009 - Back from clinic

Recorded By Hands and Hearts in Noah Updates

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.

Blessings,
Kate

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About the Entmoot

Our family loves the books of J.R.R. Tolkien, especially "The Lord of the Rings" Trilogy. An Entmoot is a gathering of Ents (Shepherds of the Trees) to discuss issues. We thought this was a wonderful word picture to describe our zany family.

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Wednesday, November 25, 2009 - Richly Blessed

Nov. 19, 2009 - anticipating blessings

Nov. 14, 2009 - Whew!

Nov. 14, 2009 - Funny Comic!

Nov. 14, 2009 - I've been learning something cool.....

Nov. 11, 2009 - Mad as a hornet

Nov. 11, 2009 - Noah is going to the hospital.

Nov. 10, 2009 - He . . . . . . ISN'T!

Nov. 10, 2009 - Is he, or isn't he?

Nov. 9, 2009 - Back from clinic

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