Sep. 6, 2008
Neither fire nor flood
Posted in Noah Updates
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I'm glad so many of you were amused by the story of my little pyromaniacs. We are safe and sound from Hanna's wrath. We live in the western Piedmont area of SC, far away from the coast. It is hot and sunny today at our house! We had a wonderful picnic with some friends today. We couldn't stay very long because Noah started to get really hot in spite of his cooling vest. Noah has been distinctly "off" today and we don't know why. He is lethargic and withdrawn. I don't know if the anemia is kicked in enough to make him feel bad, or if something else is brewing . . . I just know I really, really don't like how he's looking. He's also got some odd, unexplained bruises all along one fore arm. That troubles me. His nurse is coming on Monday and I'll show her the bruises then. We are supposed to go to Jeff's parent's house to celebrate his dad's birthday this evening. They live just around the corner so if Noah gets hot or doesn't perk up, I'll just bring him home early. Now that Hands and Hearts is incorporated, we have to have regular board of directors meetings. Since Jeff and I are the only ones on the board :-), the meetings double as dates paid for by the business. We had a "meeting" at my favorite Indian restaurant the other night (yum, yum, yum). Mary Faith woke up just as my meal arrived. She didn't want toys and she didn't want to nurse - she wanted to grab my plate. She's been 100% nursed her whole life, but Thursday she decided she wanted Indian food! I finally tore off a chunk of naan bread (like a really thick tortilla, but 1,000 times yummier) and gave it to her. The little cutie sat on my lap cheerfully gumming her bread the rest of the evening. It was unbelievably cute. Last night she pulled the same "I must have your plate" stunt at dinner so we put her in her bumbo on the table and gave her some crackers which she very passionately devoured. Mary Faith is extremely tiny with a very petite build, and it looks so funny to see her eating like that. She had more crackers at the picnic. Sigh. It's the dawn of a whole new age. All of my babies have enjoyed organic biter biscuits that are very hard and not as messy as crackers. I ordered some online for her and hope they come before the wedding so I can take them to Florida. They are sweetened with a touch of pure maple syrup, and I LOVE the smell of my babies' breath after they gnaw a biscuit - they smell like buttermilk pancakes. :-) Of course, I love the way babies smell anyway! Keep dear Noah in your prayers. I promise to update ASAP if things go south. Blessings, Kate |
Sep. 4, 2008
welcome to my world
Posted in Noah Updates
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Overheard at my house recently: Wiliam: "Mom, if I tell you something, do you promise not to scream?" (Please note that I'm not a screamer, so this got my attention pretty fast!) Me (smiling): "Of course I won't scream, Sweetie. Why would you think I would scream?" Wiliam: "I can't really tell you unless I'm sure you won't scream. Are you REALLY sure you won't scream?" Me (still smiling, but not as much): "Yes, I'm really sure I won't scream. What do you need to tell me?"  Wiliam: "I mean, you're feeling OK, right? You aren't feeling like you need to scream, right?"Me (forcing a smile and fighting a snarl): "Yes, Dear, I'm fine. I. Don't. Need. To. Scream." Wiliam: "I mean, even if you DID want to scream, I didn't do anything wrong, so you wouldn't scream at ME, right?" Me (giving the evil eye to William): "William Lawrence Estes! What is wrong??!!" Wiliam: "You're starting to sound like you want to scream. If you need to scream, will you wait until I leave the room?" Me (voice taking on a distinctly shrill tone): "If you don't tell me what you need to tell me, I WILL scream and I will NOT wait until you leave the room, Buster, so get to the point NOW!" Wiliam (sighing): "Fine. I just thought you should know that ******(fill in small child's name) is playing with matches." Wiliam (muttering to himself as he left the room): "I KNEW she was gonna scream." |
Sep. 3, 2008
Remember me??
Posted in Noah Updates
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You know I've always said that if something serious happened to Noah, we would find a way to update the blog - so no news is good news. It never really occurred to me that something would happen to ME! I didn't blog for a while because had two bad stretches of computer problems. I was also crazy busy canning (final tally: 68 quarts of peach slices, 48 jars of peach jam, and 17 quarts of pear slices) which kept me away from the computer. Then I got sick. Really, really sick. I don't know that I've ever felt that bad in my whole life. I was absolutely flat out for 10 days with some sort of throat infection. I had a very high fever for a week (sometimes over 104) and my throat was so swollen that I could barely swallow sips of water. I don't care to ever, ever feel like that again!! The day before I got sick I was doing a lot of big reorganizing jobs in the basement so I didn't have much "face time" with the children. Once I got sick, the only child allowed near me was Mary Faith since she nurses exclusively. The separation before and during my sickness worked to keep anyone else from getting sick. I'm slowly getting back on my feet again, but I did have to indulge in a rare nap this afternoon and I'm trying to be smart and take it easy. Noah is doing beautifully and is talking up a storm. He says many new words every day and we are all enchanted! His typical dinnertime protocol is to act desperately hungry, get a plate with bits of everything we are eating, then feed it all to his faithful canine sidekick Buddy. The other night we put him in his highchair tray, and as he not-so-stealthily dropped his food on the floor he kept announcing, "Buddy eat corns!" How's that for a first 3-word sentence?! Our beloved family friend Shannon is getting married on the 13th in Tallahassee. Hannah is a bridesmaid and Sarah is the flower girl. We can't take a trip like that with Noah, so I am going to drive down with the three girls. We are all pretty excited about our little road trip. We'll leave a week from tomorrow (Thursday) and come home that Sunday. Best of all, the wedding takes place just three hours from my dad and stepmom's house, so they are going to join us Friday and Saturday. I haven't seen them in a year and a half - they've not even met Mary Faith! Mary Faith is already seven months old - can you believe it?? I know I'm wildly prejudiced, but honestly, if I sat down and tried to plan the perfect baby, she would be even better than that. She is happy, affectionate, beautiful, social, and brings immeasurable joy to our entire family. Every day I look at her and wonder how on earth we ever got by without our dear little girl. I wish everyone who thought my pregnancy was bad news could spend a day seeing just how richly we are blessed to have her. The first thing Timothy does every morning is come into our room where Mary Faith can be found snuggling/cooing/smiling in bed with me, and ask , "Where's my Smiley Girl??" He then scoops her up and goes off for some snuggles of his own. She adores him as much as he adores her and she starts wiggling and giggling as soon as she sees him. He is going to be a great dad someday! We are getting ready to start back with a full homeschool schedule. I might wait until I get back from Florida or we might have a half week next week. We had to wait on the Lord a while to provide funds for a few final books, but the last box arrived this week and we are all set now. Hannah will be doing Notgrass American History. It counts as a credit each in history, literature, and Bible. She is such a voracious reader that I've added in about four times more books than the ones called for in the curriculum and I need to sit down and add them to her lesson plans. She is using Wordsmith for writing, Biology 101 with lots of extra reading for science, sign language for foreign language, and also doing a Latin roots program. Everyone from David up is working through Teach Your Children Math Well and will each be starting Teaching Textbooks as they finish. The boys are doing Swimming Creatures of the 5th Day for science (we started in in the spring and stopped for summer), Ancient History Portfolio/lots of reading/hands-on projects from our kits for history, Reading Pathways for those still working on phonics, Language Lessons for the Very Young/Language Lessons for the Elementary Child (depending on age), Spelling with Copywork, Latin roots, and a couple of other things I can't remember right now LOL.. Everyone is using Italic Handwriting. Sarah will start phonics with Headsprout and will start Italics. She'll also sit in on our science and history reading times. I think I'm going to do an Old Testament lapbook with the boys in addition to their own Bible reading time and our family devotions. This year I'm also going to schedule a time where everyone reads on their own for a while - I'm not sure if it will be 45 minutes or an hour. I'm hoping to pull each child during that time to read out loud to me for a few minutes. I'll also have them narrate what they are reading. They will each get an assigned reading list of five books at a time. Some will be very high interest while there will be other books that they may not have chosen on their own. They can read the books in any order they desire but can't get a new list of five until they have finished the old one. I'm hoping this will be a painless way to broaden their reading horizons. We'll see how it works! We are also trying something new in Bible. Each younger child is buying an inexpensive MP3 player. Jeff has much of the KJV on CD being very nicely read. We'll let them choose the book they want to read, then put the appropriate CD on their MP3 player so they can all sit at the table and have a voice to read along with. The earbuds will keep them from disturbing each other, and reading/following along with they listen the the Bible being read should help them get more out of their Bible reading. I need to go and fix dinner. I'm also going to tell Hannah to be sure to update if I'm ever incapacitated again so we don't go so long and worry so many people! Blessings, Kate |
Aug. 10, 2008
Happy Birthday, Dear Noah
Posted in Noah Updates
I'm too tired to post much tonight, but wanted to tell you all that Noah had a WONDERFUL birthday today. His party was amazing. We stopped counting at 200 guests, and there were 58 pints of blood given in his name!!! There was never a time that there wasn't a line outside the Bloodmobile because every bed was always full and all of the inside seating was always full. The Bloodmobile had to stay an extra hour just to get all of the donors in! There were also about a dozen people who gave blood earlier in the week and a couple dozen more who are giving in the weeks to come because it hasn't been long enough since last time they gave. Considering the fact that the Blood Connection said that 25 donors would be a great number, we are so blessed and amazed. Each donation saves 3 lives, so because of Noah 174 lives will be saved (not counting people who gave before/after the party) That's a pretty cool birthday present.  Noah had SO much fun at the party. He truly had the time of his life. People who love him came from all over the place and he didn't stop smiling the whole time (except when he fell asleep LOL). It was incredibly touching to us to see so many precious friends from our church, our community, and all over SC (and even our friends from Atlanta!) There were a number of people who we had never met before but who have been praying for Noah. He is really tired today and I know that being so busy yesterday took a toll on him, but I believe with all my heart that we did the right thing in letting him have such a great time at his party. I'll get pictures up as soon as I can. The paper sent a reporter and there was a nice article about the party on the second page of the paper. You can see it here:http://www.indexjournal.com/articles/2008/08/09/news/news04.txt If you missed the first article about Noah, you can see it here: http://www.indexjournal.com/articles/2008/08/06/news/news05.txt We had 13 dinner guests after the party, lunch guests after church, and both sets of grandparents for dinner, so I'm going to bed a tired but happy mommy now. :-) Thank you all for your prayers for the party. Blessings, Kate |
Aug. 7, 2008
Extra! Extra! Read All About It!
Posted in Noah Updates
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I got the link for the article wrong when I first posted. The correct link is there now. :-) Our local paper ran a great article about Noah and his blood drive/birthday party today. Here is the link to the online version of the article in case you would like to read it: http://www.indexjournal.com/articles/2008/08/06/news/news05.txt Remember, you are all invited and there is no need to RSVP - spur of the moment visitors are just fine. :-) We are busy here. We canned 62 quarts of peaches yesterday and today we are cleaning out our big school/game closet. Tomorrow I'll be baking 6 double-batch chocolate cakes for the party. This is Jeff and the children's favorite cake recipe. While it's a family tradition to have this at every birthday party, I've never done six before LOL. Keep praying for Noah. This week's labs weren't really any better and his hemoglobin is considerably lower. He is nearly at the point of needing another transfusion, so this blood drive is coming at a good time. Just please pray that nothing happens between now and Saturday and that we can ALL rejoice together and enjoy the day. I've got more to share and I'll try to post tomorrow (between cakes!). Blessings, Kate |
Aug. 6, 2008
A special offer from a friend of ours
Posted in Noah Updates
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A friend of ours, Jim Hodges, has offered to do something really special for our family, and he asked me to post and let you all know about it. Jim is a home schooling dad and Navy retiree who turned his love for history into a business, producing unabridged recordings of the outstanding historical fiction novels written by George Alfred Henty in the 1800's. Henty novels are full of adventure, valor, bravery, high morals, accurate history, and advanced use of the English language. We enjoy listening to these in the car - they really make the time fly. I love Jim's voice and his great expression helps younger ones really "get" the story. You and your children will love listening to stories from Ancient Egypt, the Crusades, the Age of Exploration, American history, and more. The kids will love them because the stories are awesome, you will love them because of the outstanding role models contained in the stories, the accurate history, and the advanced vocabulary. Everybody wins! Jim has also recorded some books for younger children: Stories of the Pilgrims, Our Young Folk's Josephus, and American History Stories, as well as 4 books published by Lamplighter Publishing: all 3 Boys of Grit titles, and True Stories of Great Americans for Young Americans. And finally, Jim has reissued some outstanding Old Time Radio shows that teach history in a really entertaining way: You Are There - World History Stories; You Are There - U. S. History Stories; and Horizon's West - A Tale of the Lewis and Clark Expedition. Each of Jim's recordings are contained on a single CD in the MP3 file format. These CDs will play on a computer CD drive or DVD player, or can be copied onto an I-pod or other MP3 device. They will not, however, play on a standard CD player. It would take too many CDs! These recordings are up to 15 hours long! How many CDs would that take? And in this particular promotion, our family will win as well. Jim has agreed to donate 50% of the profit from EVERY SALE to the Estes family to use as we see fit. This should help with Noah's medical bills, food, medicines and supplies. Jim wrote: "This wonderful family has endured much, and continues to shine forth the love of Jesus in all that they say and do. I have never read a self-pitying complaint from them, or heard them ask for anything but prayer." If you would like some really great prices on quality home school supplies AND make a donation to our family, please check out the specials at this link. And thank you! We appreciate you! http://www.jimhodgesaudiobooks.com/helpinghandssale.html Please feel free to pass this link/info to anyone who might be interested, and please pray that God would bless Jim for his kindness and generosity. We were amazed that he would offer to do something like this and we hope that he is blessed for it. Blessings, Kate |
Aug. 3, 2008
Long time, no blog
Posted in Noah Updates
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I can't believe how long it has been since I've updated. No news hasn't quite been good news, though. Noah is doing OK, but I haven't felt well enough to blog. Back in December when Noah was in the hospital I broke a molar. It didn't hurt and I couldn't do anything about it since I wasn't about to leave Noah and come back to Greenwood to see our dentist. He was in the hospital pretty much non-stop then until Mary Faith was born, then she had to be a few months old before I would leave her at home for a dental visit (we don't do bottles) - so it was May before I got the tooth looked at. Long story short, the tooth ended up with an infection just a couple of days after I saw the dentist. I had an appt. for a root canal that I missed because of Noah being in Atlanta. I finally got the root canal and it was a doozy - involved drilling into my jawbone, cutting gums, etc because of the way the tooth broke. I've been in significant, non-stop pain with this goofy tooth since May and have gone through 4 rounds of antibiotics. Last week the dentist came to the conclusion that part of a nerve was missed, so he REDID the root canal Thursday. I've been on prescription pain meds and haven't trusted myself to blog while under the influence LOL. There is just NO telling what I might say if I had enough pain medicine in me! I sure would appreciate prayers for this tooth. I've honestly never experienced anything like this before and am ready for it to end. ***whining session over**** Tooth or no tooth things have been clipping along here. Jeff's parents took us both out to eat at a nice restaurant as an anniversary gift a few days after our anniversary. After dinner Jeff and I went to Walmart and pretended to shop for each other. I know it's silly, but silly is one of our specialties. We split up with plans to meet after 30 minutes, during which time we selected gifts for each other as if money were no object. We also picked out cards. Once we met up, we took turns taking each other through the store to show off our gifts, then we went to the card aisle and handed each other cards to read. :-) I "got" an espresso maker, a coffee grinder, a 6 slice under cabinet toaster oven ( I LOVE to get appliances as gifts - I really do), a lovely digital photo frame, a big flat panel TV for watching DVD's on family movie night or date night, lots of roses, and a pint of my favorite Hagen Daas chocolate peanut butter ice cream. My guy sure knows what I like! I "got" Jeff an ultimate office/retreat with all the best computer stuff, comfy furniture, storage solutions, etc. We were both pretty pleased with our gifts and had a really fun evening. Noah had a great visit wit the cardiologist on Wednesday. He had his best echo ever and the doctor was thrilled with his heart function. The IVIG and the medicine he's taking seem to be doing the trick. On the downside, his labs haven't been looking great and last week they looked even a bit worse. It will be instructive to see what tomorrow's labs look like. It appears as if he just isn't absorbing/holding on to a lot of the good stuff in his TPN. His pre-albumin is low and getter lower, which is generally considered a sign of malnutrition and is associated with poor patient outcomes. His triglycerides are very low even though he gets a great deal of fat (lipids) in his TPN. Toddlers need fat and super-low triglycerides aren't really good. His liver enzymes are up a bit more but not terrible, and a number of other things are lower than they should be. I'm convinced that this all ties in with the astounding amount of urine he passes while he is hooked up to the TPN - it seems that it is passing through him without being absorbed. The cardiologist agreed and wants us to talk to GI about it. Some of these poor labs could be cardiac complications but shouldn't be in light of Noah's current cardiac status. I am very thankful that we had the cardiology visit before Noah's next GI appt. on the 13th so we can go to the GI appt. knowing that his heart isn't causing these problems. I don't know what they will or can do about this all . . . . . Noah is also anemic again. His hemoglobin isn't low enough for a transfusion yet but is heading that way. I had hoped that this last transfusion would last longer. Jeff still hasn't found a job, but we are at peace with that. We've prayed that he wouldn't be offered a job unless it was the job he was meant to have, so all this means that either the right job hasn't come around OR he is meant to stay home full-time. We continue to have our needs met in some of the most unexpected ways. The boys needed to spend some money they'd earned to buy some clothes and shoes, and they found the most amazing sales. A blog reader sent Mary Faith a big box of clothes and some baby toys. Another sent Jeff and I some lovely gifts for our anniversary and some things for Hannah's hope chest. A blog reader who specifically asked that we not mention his name sent a $1,000 check and it came right as the mortgage was due and we needed groceries but had almost nothing left in our checking account! The letter that came with the check was a beautiful reminder of God's love and desire to care for His children. I've even been blessed with Starbucks cards so that I can be ridiculously and extravagantly spoiled. :-) I'll be honest in saying that Jeff and I have always loved to be able to give to others and bless others, and it feels funny (sometimes uncomfortable) to "need" to be on the receiving end. I've battled both pride and fear that I never knew I had, and have been so humbled and awed to see how God has provided. Jeff is working SO incredibly hard with our business and is making amazing changes and improvements, but it isn't ready to support us yet. On paper it doesn't seem possible for us to be getting by, and yet we are getting by just fine day by day. Our children are seeing the very real hand of the Living God and we are thankful for that! Preparations for Noah's blood drive/birthday party are coming along so well and we are very excited. Starbucks has donated gift cards for everyone that gives blood and is also sending a bunch of yummy treats for the party. We've put posters up all over town and are praying for a great turnout. I just can't believe he is going to be 2 next Sunday!!!! (If you missed the announcement/invitation for his party, you can see it here: http://www.homeschoolblogger.com/ourquiverfull/558803/ You are ALL INVITED!!) I want to remind all of you that if you participate in ministries like Operation Christmas Child or other shoe box type ministries, this is a GREAT time to pick up inexpensive school supplies. Our Walmart has had wire-bound notebooks for a nickel apiece and we and the children have been able to buy over 100 of them for Ukraine. At 20 notebooks for a dollar we didn't think we had any possible excuse NOT to buy them! Our Office Max has been selling crayons for a penny a box. It's limit three per person per visit, so every time we go out we all bring pennies and we each get three boxes. We now have dozens of boxes of crayons. :-) I'm not saying this to boast AT ALL, but to say that right now there are ways for anyone to afford to be a blessing and we have been immeasurably blessed to be able to find ways to buy things for the Ukraine mission that we hold dear. There are a lot of different school supplies available at a fraction of their regular prices even if your stores don't have these particular deals. We want to take the dc to the nursing home this afternoon just to visit . Jeff preaches there sometimes but we have to leave right afterwards to get to our own church, so we thought it would be fun to this afternoon when we won't be as rushed. I will be blogging again right away - probably tomorrow. I need to tell you all about something precious that a friend is doing for us, but this post is long enough! :-) Blessings, Kate |
Jul. 20, 2008
17 years
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Today is my 17th wedding anniversary. I met Jeff when I was 17 years old, so there is a pleasing symmetry here somehow. I didn't think we did anything special today. Jeff took the healthy dc to church while I stayed home with the sick ones and Noah. When he came home, we made about four bazillion homemade buttermilk donuts together -I made the dough, rolled, and cut while he cooked and rolled in cinnamon sugar. We then served an utterly irresponsible lunch of homemade donuts, home canned applesauce, and ice cold milk. Sometimes we really like utterly irresponsible lunches around here! There were lots of leftover donuts which we all nibbled at all afternoon, so we didn't have the big pot roast dinner I had planned. Instead, we had some BBQ sandwiches from leftover smoked pulled pork that we had for dinner last night. We've been needing a new laptop for the business and Walmart had some for under $400, so we went to Walmart together and picked up a laptop and some scissors. When we came home, we just sort of hung out together while Jeff worked on the new laptop and I sat nearby and chatted with him. No big dinner out, no romantic date, no roses. We didn't even buy cards. I told Jeff that I was afraid this wasn't much of an anniversary . . . then we looked at each other and grinned and both said that we wouldn't have changed a thing. :-) This morning we lazed around in bed playing with the little guys until Jeff absolutely had to leave for church. We had a lot of fun laughing and talking making those donuts. We were blessed to get a laptop for WAY less than we thought, and blessed that the business could buy it. We spent time with 7 of the 8 most wonderful kids in the world. Because Mary Faith is needing lots of snuggles right now, I didn't feel like I had to run around and "do" stuff. I just sat and talked with Jeff while he worked on the computer. We got to laugh (a LOT) at Noah's new dance moves. As soon as I finish this we'll probably get into bed and snuggle with Mary Faith (who still feels really yucky) and watch a couple of old episodes of Get Smart. Life is good. :-) Blessings, Kate PS I recently wrote the story of how Jeff and I met and posted it on a group I'm on. (We were comparing notes!) I thought you might like to hear it so I'm pasting it here. . . . . . Jeff and I met our freshman year of college (PCS). I was 17 and he was 18. I was actually a cheerleader for his soccer team. One day I hurt my arm cheering and ended up on some pain medicine. There was a party for the team and cheerleaders that night and I went even though I was in a sling and couldn't play pingpong or anything. Jeff saw me and felt bad for me, so he sat and talked to me the whole time to keep me company . . . but because of the pain medicine, I wasn't able to remember this! (I'm relying on HIS account LOL). We ran into each other a few days later outside of a class, and I thought he was a friend of my friend's fiancee. Remember, I had forgotten ever meeting him. I walked up and greeting him (thinking he was someone else) and he thought that I was impressed by his kind and gentlemanly behavior from the party. He asked me to go to church with him that night and I agreed. A few minutes later I ran into my friend and her fiancee and mentioned that her fiancee's friend had asked me out. I was horrified when they said that the friend had been off campus all day!!! I didn't know what to do. For all I knew, Jack the Ripper had asked me out LOL, but I decided to go ahead and meet up with him. All the same, meeting at church was surely safe, right? (Not to mention that attendance was mandatory so it would have taken some doing to avoid him, and I couldn't call and cancel since I didn't know who he was!) I sat next to him that night having NO IDEA what his name was, how old he was, or anything. I didn't even realize that he was on the soccer team for which I cheered. As we spoke, he asked me how to spell my last name, which was Till at that time. He told me I was lucky because there was no way that people could mispronounce that name, but that people were forever calling him Jeff Estes (2 short e's) instead of Jeff Estes (1st e short, second e long.) I was SO relieved to learn his name so that I could ask around and get the "scoop" on him. :-) We went to church together the next Sunday, then Wednesday, and so forth. Neither one of us had ever dated before. By October he knew that I was the girl for him, but it took me quite a bit longer to figure out that he was the guy for me. (Poor fella.) Within a year we both knew we would be getting married, and 2 /12 years after we met I got the ring officially. We married in July of '91 right after graduation. I was 21 and he was 22. Here is the funny thing - all of Jeff's life he said he was never going to get married. In kindergarten his written answer to "When I will grow up, I want to be ____" was "not married." No joke. In his senior year of high school he refused to write a paper about the qualities he wanted in a future wife, because he said he was never getting married. He finally had to write it or get an F, but the only criteria that I match is that I am female LOL. He did say he was going to find a cheerleader to date when he went to college, though! When he told his mom midway through his freshman year that he had found his future wife, the poor lady almost had a cardiac event. He now fondly and happily tells people that I ruined all of his plans for his life, and that he is glad I did! (I never did tell him about the whole mistaken identity thing until a couple of weeks before our wedding. He just LOVED to tell people about how I was so moved by his kindness at that party. I hated to burst his bubble, but couldn't stand it any more.) :0) Blessings again, Kate |
Jul. 19, 2008
Matthew and Mary Faith
Posted in Noah Updates
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(Hannah Update Below This Post) Matthew has been complaining just a little bit about a sore throat for a couple of days. When he woke up this morning, he was feverish and his throat hurt so much he could barely talk, so Jeff took him to the express care place around the corner from our house. (side note - WHY does this stuff always happen on the weekends??) Anyway, it turns out the poor guy has a nasty case of strep throat. Mary Faith has been acting odd for about as long as Matthew has had a sore throat. She wants to nurse but doesn't want to swallow, and a couple of times I've found her drenched in sweat. When I dressed her this morning her tummy was covered in a rough red rash. By the time Matthew and Jeff got home, her whole torso was covered and the rash had spread to her arms and thighs, so I took her to express care. I was concerned that it could be a scarlatina rash - and it turns out I was right. My little sweetie actually has scarlet fever! Thanks to modern antibiotics, this isn't the scary disease of old novels, but she does feel really yucky. (Of course, when the heroines of these old novels would get scarlet fever, it seems like they always required a long convalescence at the sea side . . . . . SURELY it would be irresponsible of me to put too much stock in these new-fangled antibiotics . . . . SURELY the only safe course of action would be to go to some balmy tropical paradise and hang out in a hammock . . . .  ) Ahhh well, I don't see a beach trip anywhere in our future, so we'll just have to settle for amoxicillin and lots of mama-snuggles! All silliness aside, I'm so thankful that these things which used to be so devastating and grave can now easily be treated with some oral antibiotics. We are so blessed to be living in this time and in this place.Of course, the big concern here is keeping Noah safe. Matthew "graciously" informed me that he would be "willing" to just spend the next few days alone in my room so Noah won't be exposed further. He said that if had a laptop, lots of cold sodas, and a stack of old b&w Superman DVD's then he could probably handle the isolation. < Noah has been doing really well. He has discovered that apparently money CAN buy happiness, because he has found it for sale in Walmart. :-) He hasn't been to Walmart much at all. He spent so much time in the hospital, then was on "house arrest" for the influenza season, and now I try to leave a few little ones at home with an older one so I can use the minivan to save gas. The other day Jeff and I went to Walmart and brought Noah along. He went NUTS when he saw the lobsters, and I was reminded of the fish aisle. Noah LOVES fish. We spent literally hundreds of hours in front of the huge fish tank at the hospital in Greenville last year, and the fish seldom failed to soothe and amuse him. We took him to the fish aisle and let him get out of the cart. He rushed to the first tank and gasped, then yelled "feeeesssshhh!" at the top of his lungs. He stared for a minute or two then moved to the next tank, gasped in astonishment, and yelled "feeeeesssshhh!!!" again. He kept this up for more than 15 minutes. We were laughing sooo hard because every time he stepped in front of a tank he would gasp in shock like he was SO surprised each time. We went back to Walmart a few days later and as sooas w got in the door he put his hands on my face and said, "Feesh, Mommy???" You all have seen his pictures and are aware of the Big Bottomless Blue Eyes thing . . . . . . .I was obviously powerless at this point and was compelled to take him back to the fish aisle. We've created a monster LOL, but at least the fish aisle doesn't charge admission. :-) Fish aren't the only aquatic joys in Noah's life right now. A number of VERY sweet and creative blog readers have sent Noah a lovely supply of Aqua-Guards! I'm working on individual thank-you notes, but most of the shipments don't indicate who sent them, so if I don't email or write with a thank-you, that is why. Please just know that Noah is unbelievably happy with these. He has started taking my hand, leading me to the bathroom, pulling back the shower curtain, and saying "Peeeese, (please) Mommy??" while kicking in the pleading eyes. You guys already know I'm a pushover for those eyes, so Noah is taking a lot of very happy baths right now. One reader even sent him a little bath boat that sprays water and spins around. It is so cute and Noah doesn't want to let go of it when he gets out of the bath. One of us dries him while the other one distracts him and gets the boat so we can put it away. :-) Because Noah's TPN starts at bedtime, he has a lot of fluids running in all night. We've tried all sorts of diapers including the nighttime diapers, but he is almost always soaked when he wakes up in the morning. By soaked, I mean drenched from toes to upper chest. It is so sad that he wakes up cold and wet most mornings, and it was incredibly sad that I had to give this cold wet shivering toddler a sponge bath to freshen him up while he cried and cried. That is just NOT a nice way to start the day at all. Now instead of a shivery sponge bath, he can get in a nice warm shower with Mommy or Daddy then play in the tub. It makes me so happy to be able to do this for my sweetie pie. Mary Faith's antibiotics are supposed to be ready for pickup now, so I'm gonna run to the drugstore. We appreciate your prayers so much. (Oh, and Hannah appreciates them too! She read your comments and is planning on an update sometime after she gets home Monday. I miss her SO MUCH! Don't forget to pray for a safe flight late Sunday night for her, please.) Blessings, Kate p.s. I THINK you can give blood elsewhere and credit it to Noah. I'm working on that and will post details when I know that I've got it right. |
Jul. 18, 2008
update. (from Hannah)
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Hi everyone! Well, we finished VBS today, and there is something really sad I need to share. There was this little girl who came everyday to VBS. She is about 3 years old, and so cute. When it was almost time to go, she came up to me and told me that she wanted to come home with me(!) When I told her that she could not come, and that she had to go to her own house, she shook her head no and said that if I left her she would be all alone and scared. : ( I have no idea what her family is like, apart from the fact that her grandma brings her to VBS every day. Please pray for her, Nessa. On the other hand, we are leaving Sunday around 7ish PM. (Is that even a real word??? 7ish?!?) Anywaayyy.... got to run. In Christ Alone, Hannah Grace Estes. |
Jul. 14, 2008
Greetings from Minnesota!
Posted in Noah Updates
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Hi, this is Hannah updating the blog. The Danielsons (the family I am staying with) are awsome folks, and since they went to our church when they lived in SC, it has been fun catching up. : ) We did our first VBS session today. It was fun playing with the kids. I am going to do my own Blessings List, then I have to go. 1. We arrived safely. Plus, our plane landed EARLIER than we expected. (And, no I am not kidding.) 2. When I called mom this morning, she said Noah is doing pretty good. 3. I have NOT been eaten alive by the "state bird". : ) My bug spray works! I am so sorry this is so short. In Christ alone, Hannah Grace Estes. |
Jul. 11, 2008
Hannah heading out!
Posted in Noah Updates
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Hannah is leaving tonight for her missions trip. The girls are going to the church to sleep for a few hours tonight, then heading for Atlanta at about 1 AM tomorrow. (yuck). They are flying to Minneapolis and it is an 8 hour car ride from there to Warroad MN (on the Canadian border). They will be working on both sides of the border doing VBS's in the AM and service projects in the PM on the Native American reservation there. She'll be gone for 10 days. I'm so proud of her, but I'm also starting to get really, really, really sad at the thought of missing her. We do SO MUCH together and it kills me to think of her leaving like this. She's never gone away like this before without either Jeff or I with her. (sniff, sniff) Please keep her and the rest of the team in your prayers for safety, for blessing, for them to be a blessing, etc. Pray for me too! She is a huge help here, and folks are quick to assume that it's her help I'll be missing. I'm sure I will, but most of the boys are capable of doing the things that she does to one extent or another. It's her company that I will really miss. She is always the last child to go to bed and I love that extra time with her each night. I love taking her on errands, talking to her at the table, etc. Sigh. Anyway, she'll be checking the blog when she can and I'm sure she would be tickled pink to see any messages or prayers from you all! My mom bought her a prepaid cellphone and she's under orders to call when she lands and each night before bed, so I'm sure I'll have updates through the week. She might even blog herself if she has time! Blessings, Kate |
Jul. 9, 2008
Celebrate with us! :-)
Posted in Noah Updates
OUR PHONE NUMBER HAD A TYPO WHEN I FIRST POSTED - PLEASE NOTE THE CORRECTED NUMBER NOW.  It's party time!!! Noah will be turning two years old (!!!) on August 10, and we think that is cause for a celebration. There were plenty of times over the last year and half that we though we might never see this milestone, so we are pulling out all of the stops to celebrate. We are inviting everyone who loves Noah (that means all of our church members and ALL of you!) to celebrate with us on Saturday, August 9. The celebration will be from 1 - 5 PM at our church, Calvary Chapel of Greenwood. (2024 Woodlawn Rd Greenwood, SC 29649). (Note to all of Noah's GMH girlfriends - he would really, really, really love to see you - and we know you would love to see how great he looks!!) We will be having a blood drive in Noah's honor, so the Bloodmobile will be on hand. We've been so thankful to all of the donors whose gifts of blood have done so much for Noah, so we wanted to "give back" as part of his celebration. As we were making arrangements for the Bloodmobile, we discovered an added bonus - since this blood drive is being done in honor of Noah, he will get a credit toward his transfusions for every pint donated! This means that while your actual blood will go to some other recipient, it will also help defray the costs of Noah's transfusions. We'll also have cake and some light refreshments inside, so that before and/or after you donate you can join us for fellowship, visit with Noah, sign his guest book, and wish him a happy birthday. If you're lucky, you might even get a World Famous Noah Hug! We'll have an indoor play area set up for the little ones so that Noah can have fun with his friends and guests, and there is also a great outdoor playground on site. You are welcome to stay as long as you like, but please don't feel like you need to be there for the entire time. We based this time on the recommendations of the blood bank and don't want the length of the event to deter anyone from coming. We're serious when we say that ALL of you are invited. We know you can't all come, but if you can get here, we would love to have you. We hope to finally get to meet some of you in person for the first time! If you want to give blood, just call us at 864-229-5436 or email us to sign up for a slot. The blood bank is looking for as many people as possible to sign up for specific times, and while last minute walk-ins are welcome, it's important so sign up if you can so they can cover their staffing needs. You need to 17 years old or older, weigh at least 110 lbs, and not have given blood since June 14, 2008. We will have a sign up sheet at church starting this Sunday, so if you are part of our Calvary Family you can plan on signing up then. If you want to come and not give blood, that is JUST FINE - the blood drive is just part of the celebration, and we would love the chance to fellowship with you. Even if you aren't giving blood, please call or drop us a line and let us know you're coming so I know how much cake to bake. :-) We'll send out a couple more reminders and more details as it gets closer, but for now please pray about joining us and mark your calendar if you plan to come! Blessings, Kate |
Jul. 6, 2008
The blessing post
Posted in Noah Updates
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I keep promising to post about some of the blessings we've received lately, but I also keep being too busy to sit at the computer (or I get time to sit and someone else is using it!) We used to literally count our blessings on this blog, but lately I've sort of worked some expression of thankfulness into my posts more often than I've officially counted them. Today there are so many blessings that I'm gonna count 'em! In no particular order, I'm thankful for: 1. Noah's amazing dance moves. I'm listing this first because he is just dancing away to a Casting Crowns CD right now as I type and it's hard to ignore. :-) Jeff said Noah is going to get "Shaken Hiney Syndrome" LOL. He responded beautifully to those IV antibiotics and is feeling much, much better. We took him for a recheck at the doctor last Thursday. It was the first time in over a year that our family doctor has seen Noah awake and alert and walking and laughing. When he first gets sick he generally hovers between sleep and unconscious until he starts to feel better, so this was a big improvement. Our doctor just couldn't stop smiling. 2. Worley Arts Photography. These photographers read this blog and met us in Atlanta to do a photo shoot of Noah just as a gift to us. You can see some of their amazing photos at http://proofs.worleyarts.com . You will need to select "Noah's gallery." You will also need to hold onto your hats (and hearts) because these are really seriously adorable photos. Those of you who know Noah in person may especially enjoy a couple of the pouty pictures. I'm glad they shot him pouting because this is Noah's classic "I'm embarrassed and feeling self-conscious so please quit expecting me to perform" face, and if you know him well you've seen this face. 3. My online friend Beth, who I had never met in person until we met up in Atlanta. We discovered that we are kindred spirits and her cheerful kindness did so much to ease the pain I was feeling while we were there. 4. Jeff's lack of a job. I know it's a funny thing to list, but we are supposed to "give thanks in all things." I LOVE having him around all of the time. I love being able to jump in the car and go to Starbucks to sit and talk any time I want (thanks to the generosity of some people who blessed me with some Starbucks cards), or get a hug anytime I want. I don't know what on earth we would have done in Atlanta if he were employed at the time. He loves spending so much time with Noah and the other children. It hasn't been a bowl of cherries, of course. It's hard not knowing where the next dollar will come from, or what the future holds, but we haven't gone hungry by any means and have even been blessed with some extravagances like meals out and movie tickets. He is SUCH a hard worker and is doing all that he can to build our little homeschool business in the hopes that it will support us soon so he can stay home. 5. Financial gifts from our blog readers. We received a number of checks (and a 5 dollar bill from a little girl) shortly before leaving for Atlanta. This always humbles and amazes us so much. 6. Financial surprises from other sources. We overpaid my OB by $2,000 dollars (!!) due to an insurance mistake, and got that check out of the blue in May. We overpaid another bill as well in May. (We've never overpaid a bill, ever, until now!) An anonymous donor gave Hannah $100 towards her missions trip and she now has enough. A church member handed us a $150 Walmart card Sunday at the same time I was sinfully fretting about needing groceries. The dairy where we buy our milk has been giving it to us wholesale until Jeff gets a job. Jeff got a free movie pass for giving blood a couple of months ago and got another one the other week for giving blood, so we were able to have a free date. (OK, to be honest, we split a small popcorn so it was ALMOST free!) 7. Noah is C.Diff. FREE! He had three negative cultures while he was in Scottish Rite! I was worried that this newest round of IV antibiotics would mess things up, and while he does have a very upset tummy, it doesn't seem like C. Diff. at all. 8. My sweet daughter turned 15 on the 4th of July! I can't believe Hannah is that old! She is such a lovely, sweet, innocent, bright girl and it is an honor to be her mom. My teenagers are such a joy and delight. 9. The way I was blessed to be able to bless Hannah. Jeff and all of the boys have been collaborating on a surprise party for Hannah, and I couldn't post about it here because she reads the blog! It's been killing be to keep it quiet. In January Jeff bought cedar to make a hope chest for her (Praise the Lord for that timing, as we couldn't afford that now) and he and the boys all worked together to make her a hope chest. She had no idea. At the same time, I've been planning this surprise party. A friend offered the use of her lovely home for the party, and helped greatly with the food. She owns lovely serving pieces and glass plates and cups, so there was no expense for paper goods. I wanted something special with which to decorate, and prayed for something affordable. The weekend before we went to Atlanta Jeff and I noticed an estate sale in our neighborhood. Even though we didn't think we could buy anything, we decided to walk over just as a fun way to spend time together. The lady of the house was incredibly skilled with a needle, and there were massive piles of all sorts of linens with embroidery, hand-made lace, etc. The pieces were gorgeous but were selling for $5 - $50+ each, so all I could do was look. On the way out the door, Jeff asked what they did with the stuff that didn't sell. The cashier said that as the sale wound down, they would start slashing prices to ensure that nothing was left. We went back the next day right before the sale ended and got an entire bag stuffed full for $2!!!! There were hankies, doilies, a lovely tablecloth and matching napkins, table runners, and more. We arranged and overlapped the hankies on a white tablecloth where the food was to be served, and found places for most of the other pieces. Two of my friends brought huge vases of garden flowers which we placed around the area of the party, and one also brought many tiny vases with little sprigs of flowers which we tucked around the table. We also scattered dried rosebuds. The effect was lovely and very old-fashioned, but only cost $2!. Like I said, my friend helped with the food. She made tiny quiches and wonderful tiny chocolate cheesecake squares, as well as coffee and tea. Another friend brought fresh OJ. I sneaked to my mom's house the day before the party and made three kinds of mini-scones - - cherry/dark chocolate, blueberry/white chocolate, and orange/cranberry. My mom provided use of her kitchen and almost all of the ingredients. The scones were wonderful and we had so much fun baking them all. The morning of the party (June 28) my mom picked up Hannah under the pretense of getting her a hair cut (which she did, so her hair would be extra-pretty for the party) and to go volunteer at the election commission (which she didn't). Hannah has volunteered at the election commission many times so this wasn't an odd outing. We all scrambled to get the hope chest to the party and to get everyone settled. We invited a number of ladies and young ladies who have been a special influence on Hannah. I think there were about 30 there. Each brought a letter of encouragement or edification for Hannah as well as something for here to put in her hope chest. The boys all watched at the window for Hannah's arrival (under the pretense that my mom wanted to drop off a knitting book at our friend's home), and when Matthew yelled "Fire in the hole!" we figured that she was approaching the door LOL. When she came in we all yelled surprise and she was so shocked and surprised! Keep in mind that she had told us to please not worry about a party for her given our financial situation, but instead to put the money towards a party for Noah's birthday in August. She's that kind of girl. :-) The hope chest was covered with one of the antique tablecloths in such a way that it appeared to be a coffee table. Hannah closed her eyes while the boys removed the cover, and she was surprised again when she opened her eyes! Jeff and all of the boys worked so hard to make it for her, and it is truly a work of art. It is solid cedar with a clear finish. Inside the lid is a brass plaque which reads, "To Hannah Grace Estes on her 15th birthday. (scrolly thingy) Made with love by Dad, William, Matthew, Timothy, David, and Noah. (scrolly thingy) Being confident of this very thing, that He which hath begun a good work in you will perform it until the day of Jesus Christ. Philippians 1:6" Jeff led everyone in a prayer of blessing for Hannah, then he and the boys left. We all enjoyed eating and visiting until it was time for the gifts. Each lady in turn took a seat next to Hannah, read her letter, and presented her gift. There were LOTS of tears and LOTS of laughter. I made up some pretty little cards on the computer and each lady wrote what she had given and why. I'm taking close-up photos of each gift and will put them all in a 4X6 photo album with each card facing the photo of that gift, so that even her grandchildren can look back and read the meaning and precious sentiment behind each heirloom. Due to our family's convictions at first, and her own convictions as she grew older, Hannah has chosen to walk a path in life that is different from most of her peers. Over the years there have been times of tears and heartbreak, and times when she has felt very lonely and longed for a like-minded friend (of which she now has a couple!). It was an unspeakable joy for me to be able to watch as godly woman after godly woman sat beside my daughter and blessed her and affirmed her choices. The gifts she received were varied and lovely and each reflected the God-given creativity of the giver. Hannah loves aprons and is quite accomplished in the kitchen, so I wanted so much to sew her some aprons. Since I have to sew at the dining room table, I couldn't find a way to do this in secret. Instead I took a purchased plain white apron and embroidered the yoke with a motif of a watering can filled with a floral bouquet. I am so glad that she like it. It was hard to hide even that project as we are all together almost all of the time! :-) At the end of the party we gathered up all of the lovely linens and I allowed Hannah to choose as many as she wished to add to her hope chest. I shared the story of the provision of the linens with all of the ladies, and Hannah was blessed that the God of the universe cared enough to even provide those little treasures for her. It really is amazing when you think about it. 10. I'm thankful for my marriage. We'll have been married 17 years this month. I was 17 years old when I met Jeff, so he has been in my heart for more than half my life. Some ladies at the Ronald McDonald House were watching Divorce Court one day (as I hustled my dc out of the room LOL). As Hannah walked by she mentioned our upcoming 17th anniversary and was saddened when each lady expressed surprise and admiration for such a rare accomplishment. Jeff isn't perfect, and I'm no walk in the park, but we love each other and our children and our Creator, and look forward to many more years together. 11. (Weird number, but I thought of one more BIG blessing). I'm thankful that I met another mom of a mito child with a broviac and a g-tube while in Atlanta. Her home infusion company supplies these patches called Aqua-Guard that she can use to cover her daughter's dressing so the little girl can take a bath. They are expensive to buy online and our infusion company doesn't stock them, but she gave me two of them. Because his broviac dressing has to stay dry, since August Noah has only had sponge baths (which he HATES). He couldn't even sit up then, so he has never played in water, sat in a bath, run through a sprinkler, or gone in our wading pool. This has been a big cause of heartache for me. When my children are tired or sick or weary, I love to give them a warm bath, a lotion rub, clean jammies, then lots of snuggles. When they are tiny like Noah, I usually take them in the bath with me, but I've not been able to do this with Noah. It was my great delight to give him TWO baths in the last couple of weeks. He was a little scared at first and I was glad that I was with him, but soon he was having so much fun. I'd stopped buying any sort of tub toys because it made me sad, but I gathered a couple of plastic cups and some plastic balls and even found an old squirt bath toy. He splashed and scooped and dumped and squirted while signing "water" about a zillion times. He was just so happy. When he got tired, we got out and he got his lotion and jammies and snuggles; and I got my heart filled. It was an unspeakable delight to provide him with this simple joy and comfort, and even though the Aqua-Guards are gone, I'll never forget those baths. Maybe I can order him some more online for his birthday. (How is that for an odd gift LOL). Blessings, Kate |
Jun. 25, 2008
Noah is sick again
Posted in Noah Updates
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Noah apparently picked up an upper respiratory bug while in the hospital in Atlanta. No surprise there, because hospitals are full of sick people! It didn't seem to be any more than a bit of a cold when we left, but by Sunday he was feeling very bad and running a fever. I wasn't worried about the fever because he had a good "excuse" for it and it never hit the magic 101 number, but I was worried about his behavior. I made an appt. with our family doctor for Monday, but had to cancel it. I had to run to Greenville to get milk and some groceries from Sam's, and I took Jeff's minivan to save on gas. I had only four of the children with me, and we were half way to Greenville when the transmission on the van just went. The car died right in the middle of the highway. I was able to coast to the shoulder and call Jeff (I had almost forgotten my cell phone!!). We bought the Sedona used but it still had part of the warranty left, so we had roadside assistance for a tow and the new transmission is covered, but by the time Jeff came and got me and we worked everything out, it was too late for the doctor's appt. By yesterday (Tuesday) Noah was looking really rough and we were able to get him right in to see the doctor. He has a bad ear infection (his first one!!!) and pharyngitis (ulcers and blisters in his throat). He looked bad enough that the doctor said he would support admitting Noah if I wanted, or we could do antibiotics at home. We finally decided to go with IV antibiotic therapy at home while keeping a really close eye on him. Keep in mind that with a child with mito, it isn't the ear infection or throat infection per say that is so dangerous, but even a relatively mild infection like that can wreak havoc with other body systems. We all know that when Noah crashes, he goes down very hard and terrifyingly fast, and this is the big concern right now. I had to run errands this morning, and when I came back his cough was much worse. He was just going down for his nap so I didn't get a good look at him. We'll need to see what he looks like when he wakes up. We are praying that the IV antibiotics will do the trick and we won't have to have him admitted. Please join us in that prayer! Some of you have asked about Jeff's job. He is sending out lots of resumes, and in many cases the jobs look like they were custom-designed for him, but so far no one has called him in for an interview. It is actually such a blessing as I don't know what we would have done in Atlanta if Jeff had just started a new job!! I'll admit to being truly frightened sometimes by the financial aspect of it, but those flashes of fear are lightning fast and over almost as soon as they start. I just have to keep " Casting down imaginations, and every high thing that exalteth itself against the knowledge of God, and bringing into captivity every thought to the obedience of Christ." (2 Corinthians 10:5) When I do, He is faithful to bring to mind all of His goodness and I find the fear replaced with peace! We have had a number of incredibly generous gifts from many of you, and every time I plan to blog and list them, I run out of time. I'm afraid this blog is no exception, but I look VERY forward to snatching a few more minutes as soon as I can to encourage you all with stories of God's provision for us in so many different ways. Noah is cranky and miserable, so if I don't post tomorrow it's because I'm rocking babies. If we have to head to the hospital, I promise to update even briefly. Blessings, Kate |
Jun. 21, 2008
We are home
Posted in Noah Updates
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Believe it or not, we are ALL home! Noah had his first test, which was an upper GI with small bowel follow-through. He's had this test before, and it consists of putting barium in his tummy via his g-tube, then watching it as it works its way through his entire digestive system. Every time he has had this test, it has taken about 10 - 14 hours or so for the barium to move all of the way through. That amount of time seems reasonable, since if he eats something it can be days before we see it in his diaper. Even at Scottish Rite, it took 18 hours for grapes to pass through. (Sorry if this is too graphic!) When he had his upper GI at Scottish Rite, it only took 2.5 hours!! Because the point of these tests was to figure out ways to INCREASE his motility, and this test reflected very fast motility, there was nothing to do or fix. The test just didn't show any problems, so nothing was done to find solutions. We don't believe this was an accurate test at all. It stands alone as a single unusual result when every single other indicator of motility has shown problems. He isn't handling food any better, he isn't passing things any faster, etc. We have no idea why the test went the way it did. I wasn't there to ask questions. I know the antibiotics he was on cause diarrhea and I can't help but wonder if that caused such a rapid test. Jeff was told the results, told they were being discharged, and that was that. By the time I got there on the shuttle, the papers were all signed and he was discharged. I'm not at all sure where this leaves Noah. I guess it doesn't change anything. We'll follow up with our great GI doctor here and maybe he can shed some light on the results for us. I would love to think that this means that Noah could go back to tube feeding, but it doesn't seem terribly likely in light of all of his other symptoms. The bottom line is that we are VERY happy to be home!! We got in about 8:30 last night and it was wonderful to be in our own house and our own beds. I have to run and go the grocery store, the dairy, etc. and start trying to get everyone settled back in. :-) I have more to share but can't take the time right now. I absolutely promise to update as soon as possible. Blessings, Kate |
Jun. 17, 2008
reeling
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I've got to admit that the past few days have been tough ones. Since we've come here, almost every medical professional we've seen has described Noah as very fragile. We've been told that he is in partial bone marrow failure and will be transfusion dependant from now on. We've been told that there are certain mitochondrial diseases that affect both the gut and the bone marrow, and that he may be diagnosed with one of these specific diseases as a result of his biopsy. Getting this sort of highly accurate diagnosis is very important for Noah because of the ramifications of those diseases. Right now, his TPN dependance is his most critically life threatening issue, but Dr. Shoffner is concerned that other issues like his heart could quickly become more critical and more dangerous. If we know this, we can be more vigilant in those areas. These have all been hard things to hear. Noah had his biopsy this morning, and came through it well. It is standard to also take blood and urine samples and do a spinal tap during the surgery, but Dr. Shoffner felt that Noah is too fragile right now for those additional procedures and wanted to just get in, get the biopsy, and get Noah out of surgery as quickly as possible. I was there when Noah left the room and stayed there to rock him and hold him when he came back. I stayed as long as I could before I had to bring the children back to RMH for their lunches. The surgeon who did the biopsy is obviously a compassionate person and he is very concerned about Noah. He stressed the fact that Noah has no hope of surviving on TPN. We've known this for a long time, but again it was hard to hear. He wants to see if there is anything at all that can be done from a surgical standpoint to help Noah get even 20% of his calories from his gut via g or j tube feedings. We talked with GI and surgery extensively and have agreed to some imaging studies that will let the surgeon get a better look at what is going on inside Noah. Tomorrow he will have another upper GI with small bowel follow through. This will let the surgeon really examine Noah's anatomy without being really invasive. If this doesn't reveal any mechanical (surgical) issues, then we can continue to work our way through a series of additional tests which may or may not show anything. The farther we work down that list, the less likely we are to find anything treatable in any way. Some of these tests can't be done at Scottish Rite and would require transport somewhere (we don't know where yet) to another hospital. If we DO find something mechanical (surgical), then we will have to weigh the risks and possible benefits of yet more surgery. All of this means that we really have no idea how long we will be here or what we have ahead of us. Noah is NOT at death's doorstep right now, but we are continuing to see just how fragile he is, how fast he can start to fall, and how this time at home didn't in any sense mean that he was improving or even stabilizing as we had hoped. Last night we also learned that our office manager for our homeschool business is moving unexpectedly out of state this weekend. We are truly at a loss as to what to do with this news. We can't really hire and train someone new while we are here, and Jeff can't leave Noah and go home and take over the job himself. I don't know how to do most of the computer and accounting stuff, so it wouldn't even help for me to go home. I feel like every time I turn around, the wind is being knocked out of my sails once more, but there is more truth to be found than that which I "feel." The truth is that nothing here has changed - we still have the same wonderful, amazing boy who is in the care of our wonderful, amazing God. Moms at the RMH keep asking me how I can look so peaceful and calm. All I can tell them is that I keep getting to know the one thing I can know - the nature and character of the Savior who loves us so much. I know I've said this before here, but maybe it bears repeating again - I don't know what is going to happen or why it is happening, but I know the One who does know. I'm going to end with a couple of lines from a Casting Crowns song that have really spoken to me lately: "I need your peace to get me through, Blessings, Kate |
Jun. 14, 2008
Nice surprise
Posted in Noah Updates
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When I left the hospital last night, Noah was still about the same - e.g. very weak and pitiful. When I arrived this morning, he was out of bed standing at the window watching for helicopters - and now he is dancing a little to his Mickey Mouse DVD! He is still pale and weak, but he is doing much better than I thought!! Nothing has grown out on his cultures. The docs are thinking that we caught this SOOO fast that we were able to get a handle on it before there was even enough infection to grow out. It always takes us a long time to get to the hospital in Greenville - we have to pack, get childcare, and drive an hour and a half. Here we just called a shuttle and were in the ER just a few minutes after realizing he had a temp. He did have some white blood cells in his urine but it is obvious that the antibiotics are doing the trick here. He is getting increasingly anemic but hasn't been stable enough for a transfusion. Now that he is doing better, it looks like he will get his transfusion on Sunday, then the doctors will get him on the surgical schedule for that pesky biopsy. (Probably Tuesday at the earliest). While this was originally planned as an outpatient surgery, Noah will be kept overnight for observation since he has had such a rough week. The RMH was able to accommodate the children, which was a HUGE blessing. Please continue to pray about this, as it is possible that they will only be able to house the children until Tuesday morning. My room is huge and I asked about maybe putting the extra three children on an air mattress or something once their room is taken. They don't usually allow this but said they might consider it for a night or two. Staying at the RMH means that all our meals are provided and there is plenty of room for the children to play both inside and outside. There is also a free shuttle which runs from RMH to Scottish Rite 24 hours a day. I just call them and they are there a couple of minutes- another huge bessing! On the subject of transportation, please pray for our van. My cousin's driveway is very steep and when the children opened the sliding door of our 15 passenger van, the door flew back so quickly that something bent. Closing it wasn't a problem, but we can't open it. Ugh. We will probably just need the dc to climb over benches from the back until we get home and can get it fixed. In the meantime, we are very thankful for that shuttle since it would be VERY hard to get Mary Faith in and out right now. We've gotten incredible love and support here - everything from food to toys for Noah. We even had a friend come to RMH late last evening and take William to Target to buy him sandals since his literally fell apart at my cousin's house. I need to run and take the dc back to RMH for lunch but will update again when I can. I'm keeping the cell with me if any of you need to call. Blessings, Kate |
Jun. 12, 2008
Emergency
Posted in Noah Updates
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Well, I promised to find away to update if we had an emergency, so here goes. Noah has been admitted to Scottish Rite (children's hospital in Atlanta) with suspected sepsis. We had all sorts of appointments yesterday to get ready for the surgery Noah was supposed to have today. We got back to the Ronald McDonald House and Noah fell asleep for several hours. When he woke up he looked rough and was running a fever of 101.1. We called his infectious disease doctor at home and she said to bring him right to the E.R. here. By the time he got to a room his temp was 101.8, he was tachycardic, and he was barely responsive. He was admitted and started on vancomycin and gentomycin while his blood cultures grow out. He is quite anemic and will probably be transfused as soon as he is a little more stable. He is a little more perky today but is still feverish and very pale. He obviously feels awful. Blog reader Beth came by yesterday AM with all sorts of goodies (balloons, bubbles, Mickey DVD and more for Noah, plus tons of yummy goodies and more for Jeff and I). She came back up today and helped me movea bunch of stuff from the RMH to the hospital, watched Mary Faith while I showered, and just generally helped in dozens of ways. My cousin will be delivering the older 6 dc to us on Friday and we are praying that we can arrange for them to stay at the RMH with me. I'll be spending my days at the hospital and my nights at RMH while Jeff stays/sleeps at the hospital. Everyone here has been wonderful and Noah is in good hands - those of the doctors AND of the Great Physician. I need to run now but will update more when I get a minute. If you want to contact us, please call Jeff's cell at 864 337 3725. We can't check our email here. Blessings, Kate |
Jun. 9, 2008
Leaving tomorrow
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Thank you all so much for your amazing outpouring of support and love - you all have really blessed us! I'm dreading this surgery for a number of reasons, and your prayers mean the world to us. Please pray in particular that this won't be too traumatic for Noah. He is very good with doctors and nurses UNLESS they are wearing surgical scrubs. It is very hard for all of us when I have to hand him over to the doctors and watch as they carry him away while he reaches for me and sobs. I hate it. We make a point of giving him versed a few minutes in advance, so even though he is traumatized, he doesn't remember the trauma. Sometimes I wish I could get versed too. If you want to get in touch with us while we are in Atlanta, you are free to call Jeff's cell phone at 864 337 3725. I don't know if we'll have wireless access but will do my best to update. If I don't, don't worry. If there is an emergency I'll call home and get our office manager to update if I have to. We'll be heading out tomorrow morning as soon as we can. The older six children are all staying with my wonderful cousin who has 9 children of her own. The children are pretty excited except for Sarah. She has had about a dozen total meltdowns today. She's always been with Jeff or I so this is a pretty traumatic thing for her. I'm sure that she will be fine once she settles in, but right now she is sad at the prospect of our leaving her. Once we drop off the children, we will continue to the Ronald McDonald House Noah has a pretty full day of appointments and tests on Wednesday, then surgery on Thursday. If all goes well, we will come home Friday. Noah starts to get symptomatic when his hemoglobin drops below 9. Last Monday it was 9 exactly, and he is definitely getting symptomatic. He is paler, more tired, and has a killer case of pica. Pica is the phenomena of eating really weird stuff (ice, paper, dirt, laundry soap are all common). In the past when he has had pica he has been all about eating my hair and anything paper. He couldn't have board books at all until he was about 15 or 16 months old because he would eat them incredibly fast. I don't mean he mouthed or gnawed them. He would devour them. (I've been known to devour a great book, but differently LOL). Anyway, he is on another cardboard binge. Everytime we get a delivery for the business, he boogies over and starts eating the boxes. He's downed several game pieces and part of a game board, and we've had to hide the board books. It isn't funny -it really isn't - but as I was typing this I got a phone call from a trucker looking for directions to our home. We run our business out of our home, and we get regular deliveries via 18 wheeler trucks. (The boys LOVE this LOL). We have a semi-truckload of BOXES pulling into our driveway right now - sort of an all you can eat buffet comprised of many hundreds of boxes. I don't think I'll let Noah out to see the big truck this time. :-) I say all that to say that I'm all little concerned about his status in this regard. He'll have blood pulled for labs and will lose blood during surgery. Please pray that the right choice will be made regarding whether to transfuse him in GA or wait until we get home. On a cheerier note, David had a wonderful birthday. My cousin and her family came as did my mom and stepdad. I love to throw elaborate birthday parties but couldn't this year because of our financial situation. David had been talking for months about a knight theme. We bought plain dollar store tablecloths and jazzed things up with knight plates and plenty of colorful balloons. David decorated the table with lots of knight and dragon toys and the whole effect was very cheerful for very little money. He spent the day dressed like a knight, which meant Sarah had to spend the day dressed like a princess so he could keep rescuing her. At one point she plopped in my lap and said, "David is the knight, and I am the princess, and the other brothers are the dragons (!!!), but who can be the king?" I told her that Daddy was the king, of course. She pondered that for a minute, then brightened up and exclaimed, "Right! And if Daddy is the king, that makes you the cook!" Great. :-) Sir David wanted a castle cake, so I baked a chocolate sheet cake with white frosting (I'll share the recipes later - so yummy), then piped a chocolate border and drew a castle with chocolate frosting. Plenty of white crystal sugar on top made it extra fancy, and he was happy which is the important thing. His siblings and grandparents got him Indiana Jones Legos which was a huge thrill. He has not seen the movies and probably never will - but let's face it - Indiana Jones Legos are extremely cool. Anything that involves hidden treasure, booby traps, rolling borders, and jungly-spidery things is right up this guy's alley. :-) We had bought him a Webkinz a couple of months ago so we were all set there. He was ecstatic about the Webkinz. Our children seldom get to play on the computer, and they NEVER get to play on the computer on the weekends. We gave David a special waiver to play online with his Webkinz on Sunday afternoon, and that may have been the biggest thrill of all for him. (We got him Cheeky Dog, if anyone is interested. He's wanted it forever and it is amazingly cute to hear him say Cheeky Dog LOL.) Last night I downloaded some photos from my camera and realized it had been a while since I'd shared any here. I had so many favorites from the past couple of weeks that I decided just to put them in a slideshow so it wouldn't take you all nine bazillion years to load this page. I'll just list what the photos are since I couldn't figure out how to put on captions. **Mary Faith sleeping (2 pictures 'cause she's so cute),
**Mary Faith's baby dedication (with Jeff and I in the picture to prove we exist LOL), **Sarah in a tree (2 photos, 'cause she's so cute too), **Noah flashing the best smile in the world, **Matthew with a snake he caught (2 photos in case your kids like looking at snake pictures, but NOT because the snake is cute), **Noah sleeping clutching my empty Starbucks cup LOL. It was a venti breve latte, so at least I wasn't tired! (He is obsessed with Starbuck's cups almost as much as I'm obsessed with Starbucks coffee), **Noah "helping" us unpack boxes (notice that his manliness isn't threatened by pink teacups), **Mary Faith being adorable, **Noah at a farm - a photo by the lake and one with the goats, **Matthew sword fighting with his friend Andrew - yeah, those are real metal swords, **David swinging REALLY high while Timothy hangs from the bottom of the swing - an underdog push gone horribly wrong :-), **goofy Noah sheepishly trying to get back into his old Bumbo seat, **Noah and cousin Luke having a Baby Encounter at the birthday party, **Sir David the birthday boy, **the cake, **David with the cake, **David loving on his newCheeky Dog, **Noah pouting (how sad is that face??? I can hardly bear to tell that baby "no." In this case, we was pouting because we had undressed him to wash his hair in the sink. You can see a bit of the broviac dressing, but nothing scary.), **Noah showing off his "half-fro" (half of an afro LOL - that baby is an expert at REALLY bad hair!), **Mary Faith making what the dc call her "grim face," **and Mary Faith flashing a fantastic toothless grin. I hope listing it like this isn't too confusing, but it was the best I could do! I hope you enjoy. :-) Blessings,Kate |
