A Glimpse into Mendollyn's Crazy Life | |
17 yearsToday 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 Matthew and Mary Faith(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. update. (from Hannah)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. Greetings from Minnesota!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. Hannah heading out!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 Celebrate with us! :-)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 The blessing postI 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 Noah is sick againNoah 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 We are homeBelieve 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 reelingI'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 { Last Page } { Page 1 of 5 } { Next Page } |
About Me My Profile Archives Friends LinksCategoriesRecent EntriesUpdate :)A Happy Friday Feeling Better A New Day :) Possible Appt Today. Friendsjkestes |