Lately it seems like I've become The Master Of Missing The Obvious. All this time I was focusing on keeping Noah awake in the car and it never even occurred to me to look into staying in a hotel. I guess it's just because we drive to Greenville all of the time.
Once we read the comments making this suggestion, it was clear that staying in Greenville would make things much easier. It was also clear that right now there is simply no possible way that we could afford even one night in even a cheap hotel. Well, before we could ask, God had answered - as we continued to read through comments we found one with a commenter offering use of her travel points for us to get a free night. What a blessing!!
It looks like this will work out perfectly. We'll drive up to Greenville and treat Noah to some exciting "night life." Armed with his wheelchair and a box of face masks, we'll take him to the big mall (maybe it will still have decorations up?) to do some window shopping. Not only is the mall right by the hotel, but there are other interesting places nearby - Starbucks :-) (no caffeine for him, but Mama will need it!!), big box bookstores, etc. There is a Toys R Us right there too, but I don't think I am brave enough to "window shop only" in a toy store.
Anyway, I think that we will be able to be out and about fairly late, then we can always explore the novelty of the TV in the hotel room. We'll take dressing change stuff so he can take a bath, which is always a treat and should
The hotel has a free hot breakfast, and our thought is that if Noah is down in the dining area/lobby it will be easier to keep him awake in the morning. I JUST got a new Amazon gift card from Swagbucks and I used it today to order him one new toy that he can play with in the dining area. It will be much easier to keep him up and moving in a hotel than it would be in a car! It looks like a 2 story hotel and Noah is truly obsessed with elevators, so if all else fails we can ride the elevator over and over. And over. And over. And over. While drinking coffee.
The grandparents are teaming up to take care of the other children, so they are looking forward to the adventure as well, and we are happy and peaceful knowing they will be treated to some special fun while we are gone.
It's amazing how kindness like this eases the way during a hard time, and we are thankful for the goodness of the Lord and the generosity of this poster. It will still be challenging, and we are still deeply concerned, but now we feel like we have a workable plan!
Noah felt a little worse today than yesterday, but better than he did a couple of days ago. I'll take it!
I haven't posted because several times a day it seems like things are either changing for the better or for the worse . . . I keep waiting to see how things are going to really pan out, but since several days have gone by and we are still in limbo, I didn't want to keep people waiting for news.
Noah has had several episodes of feeling REALLY bad. Yesterday he felt terrible. He sat on my lap for a couple of hours with his head on my shoulder in tears b/c his head hurt. He finally fell asleep and I was able to put him down, but he clung to my arm even in his sleep. When he woke up, it was right back to my lap with his head on my shoulder.
Christmas wasn't really much better. He slept in really late, then said he was too tired to open presents - that he wanted to stay in bed. After a little while he got up but was in tears often throughout the day.
Every time that I think we just can't do this anymore and we need to get to the hospital, he rallies at least a little. Interspersed with these times of feeling terrible he has had times of fun and happiness.
Overall, it has been wonderful to be home together and I am very, very glad we've been able to stave off an admission so far. We had snow on Christmas night (!!) and woke up Sunday to several inches of snow on the ground and huge flakes falling from the sky. Noah was fascinated so I bundled him up like an Eskimo and took him outside for a little while. He found great joy in pelting me with snowballs. :-) I took him in after a little while but went back outside to play with the other children. When we couldn't take the cold anymore, we all came in for homemade hot chocolate and a movie. Later I helped the boys assemble a Christmas gift, made bread with Hannah, and just relaxed and played with my family. Even though Noah felt yucky on and off through the day, I was available to hold/rock him while still being able to relax with my family. It was an amazing day with no pressure or schedule or big things I had to do. Days like that seldom come to me!!
Yesterday was a more frustrating day. I called the neurologist first thing in the AM as requested and was told that they would call me back with an appointment in a little while. That call never came, but because I kept waiting for it, I felt like my whole day was on hold. It was hard to make plans not knowing if we would need to go to Greenville that day or not. Having Noah feel extra bad made a challenging day worse.
Today was truly wonderful. I spent the day with my precious friend Ruth from college - we hadn't seen each other in over 20 years!! It's hard to know how a visit like that will go, but we picked up like we had never been apart. She and her family were traveling through this area after spending Christmas with extended family, so she and her husband and several of her children came here for the day. It was just the perfect visit - all of our children got along like they had been friends forever, Jeff had a blast talking with her husband, and Ruth and I just talked and talked. We ended with a very sweet time of family prayer and were so sorry to see them go. We were prepared to visit in the hospital or forgo our visit altogether if Noah was admitted or not feeling up to visitors, so it was a happy surprise that he felt fairly good all day. He had times that he came up to me complaining of his head, but he was so thrilled to have a new little friend to play with that I think he just pushed through the pain more than he usually would. Even the incredible shy Mary Faith acted like the Hammonds were her best friends ever . . . when they walked in the door she ran up to them and shook their hands LOL. I've never seen her react to strangers that way. :-)
We finally got our phone call from neurology today. He can't see Noah until Monday. We need to have Noah in Greenville at 9:15 AM for an EEG . . . a sleep-deprived EEG. Noah can't have more than 5 hours of sleep the night before and can't fall asleep in the car during the hour+ drive. Yep. Go ahead and contemplate that for a few minutes . . . . we'll definitely need prayers on Monday! All I can think to do is to drive for 10 minutes or so, then stop and make him get out and walk, and repeat until we get to Greenville. I honestly can't come up with any other way to keep an exhausted 4 year old (with an energy production disease) stay awake for a long car ride. If anyone else has any bright ideas, I'd love to hear them. When he decides he needs to sleep, it isn't possible to persuade him to stay awake by using interesting toys or books. He'll just turn his head, close his eyes, and conk out.
Once the EEG is finished, we'll see the neurologist. I am really hoping we come away with answers or at least with a plan to treat these headaches. I also spoke with our doctor for a while today. When Noah is dealing with something like an infection, making the decision to go to the hospital is very clear cut - if his fever reaches a certain point, we go. With this stuff, I feel like I am stumbling in the dark. I've been told that if he gets worse or doesn't get better, then he needs to be admitted - but that is SO vague!! Yesterday he was a lot worse, but then he was better. If I had taken him to the hospital, he would have missed a great day of having fun and feeling better today. I don't want to see him in the hospital - he will be scared and unhappy, he will be exposed to germs, and our family will be apart. I can provide comfort more easily when he is home in familiar surroundings. On the other hand, I don't want to keep him home if he needs medical care. It's just so hard to know. As soon as I think he is feeling better, he gets worse. As soon as I make up my mind to call the doctor, he perks up a little. There is just no clear cut, obvious way for me to know what to do. I explained all of that to Dr. B and we agreed to just stay in close contact, to watch Noah closely, and to try to keep him home while being prepared to go in. I am so thankful for a doctor who understands our wishes to care for Noah at home whenever it is safe and appropriate!
I sure wish we could see the neurologist tomorrow, but I trust that the Lord's timing on this is best. Please pray for wisdom for all of us, comfort for Noah, and a good "keep him awake plan" for Monday! If Noah has another pretty good day tomorrow, I will be greatly encouraged that he is turning a corner. We saw so much more of our bright happy boy today and I want to believe that this trend will continue.
At any rate, I will absolutely update if something goes wrong, and will do my best to update in a couple of days even if not much has changed. Your prayers and comments mean so much to our family. We are deeply thankful for the hope we have in the Lord and for the prayer support we have from all of you.
I spoke with Dr. B today after he spoke with neurology. The bottom line is that there is a VERY low threshold for admitting Noah at any point this weekend. If it weren't Christmas, he'd probably be admitted now. Given that he isn't having any acute infectious problem, Dr. B is letting us keep him home **for now** providing he gets no worse and providing that he starts to do better. We are to call neuro 1st thing Monday morning for an appointment - they want to see us ASAP - and Dr. B said to plan on being admitted as a result of that appointment.
While Noah isn't worse, he isn't much better. He spent most of the day curled up on the couch or on a lap looking sad and saying his head hurt. We went to my mom and stepdad's house for our annual Christmas Eve get-together. Noah opened his gifts quietly but happily and was very content to sit and play with his new toys. At the end of the evening he stood in front of the tree and asked me to take his picture . . . he proceeded to make every silly face he could think of. I snapped a shot of every single one. :-) He seemed a little better while we were there, but I honestly don't know if that is just because he has been SO excited about Christmas and tonight his grandparents got him the thing he wanted most of all (the Imaginext Space Shuttle). I don't know how much that balanced out the yucky feelings.
All I know is that I want this weekend together as a family. I want Noah to wake up to a full stocking and gifts under the tree. I want him to spend tomorrow playing with his toys, visiting with family, and safely surrounded by those who love him so much. I want to take a million pictures. If we have to go in next week, then so be it - but I want to give him Christmas this year. I know if he gets worse we'll have no choice, and that knowledge is breaking my heart, but for right now at this minute we're willing to fight hard to keep him home.
Thank you all so much for your prayers and for all of your comments. I kept my phone in my pocket all day in case I had to call Dr. B quickly, and every time a comment came in I was notified and could read it on my phone. Even on this busy day, so many of you took a moment to let me know you were praying - that ministered to me all day long even as I fought tears looking at Noah so pale and tired on the couch. Please pray that he can enjoy tomorrow (we might even have a white Christmas!!) and that he can hold on for just another day or two at home.
May you all have a blessed Christmas.
Blessings, Kate
P.S. Last night I slept better than I have in ages - I know it was because you were praying. Thank you.
I haven't really processed all that happened today, so this post will probably sound clinical or raw. I have no great insights to share. I'll try to post again tomorrow when I've had time to think and when I know more.
I took Noah back to the doctor this AM as his headaches weren't any worse. Last night his formula pump malfunctioned so he didn't get his g-tube feeds (not an emergency). This AM his belly was distended and he had gastric juices and blood leaking out around his g-tube. This is unsettling even when he HAS had feeds, but it really sort of worried me to see it with an empty stomach.
His tummy was still leaking and distended at the doctor's office, and his head was really bothering him. The nurse practitioner was on the phone with Dr. B and trying to decide if Noah needed to see GI right away, if he needed a CT right away, etc. The final verdict was to get a CT of his head and to watch and wait with the GI issues. I was deeply concerned about everything but not at all fearful - just concerned, wondering how this was going to play out, etc. As we left, Noah was his usual cheery, flirty self - laughing and being silly with all of the nurses, wishing everyone a merry Christmas, and so on. He and I were talking and laughing as we walked out to the car. As we approached the minivan I was talking to him. I opened the slider and called to him to climb in, opened my front door to drop my purse, and turned to buckle him in.
He wasn't there. My first gut fear was that he had run after something interesting in the parking lot. I ran toward the back of the minivan and found him collapsed on the ground leaning against the fender. I grabbed his limp body in my arms and ran back into the office. He was awake and conscious but not really responsive. He had to be stuck twice for different labs and didn't react. If asked if he was OK he would feebly shake his head no. He was fairly limp and not moving.
He had a large group of people working on him, running tests, etc. They finally got him to the point that he could sit with help and they put him on the floor to watch him walk. His gait was uncoordinated, he was walking into walls and missing doorways, and he was tipping over sideways. All of his other neuro things were fine. All of his labs were fine, his blood pressure and temp were normal. The decision was made to just proceed with the CT scan and go from there.
The CT was normal, which isn't necessarily good. We were all hoping for a sinus infection or other obvious, fixable problem. I was on the phone with Dr. B. this evening and he said that he (Dr. B) was in over his head at this point and that we couldn't avoid involving Greenville. He will be calling the pediatric neurologist first thing in the AM to see how to proceed. We gave Noah extra support at home tonight with extra IV fluids and close supervision.
He is still very altered. He is alert and moving well and talking, but is almost frantically ill-tempered. He is acting out in ways I've never seen before and just doesn't seem to be "all there" - this isn't Noah. He seems scared and hyper and unable to focus on anything - no impulse control, no happiness.
Today is Timothy's 12th birthday. I was gone from 10 AM to 5 PM and had 18 people for dinner at 6 PM. My children are such a blessing. I got in at 5 with Noah and the house was immaculate. Decorations were hung, the cake was baked, there were balloons, and the table was set. It was such a blessing and I was so thankful. Yesterday the children and their cousins spent hours making gingerbread houses and they were looking forward to having the grandparents and their uncle judge the houses for a competition. My sister in law and I came up with 10 categories for the competition so each child would win in a category - there was no way to pick a "best" house. I just had to jump right in from this incredible, scary day to trying to be there in the moment for Timothy, make sure all of the gingerbread voting took place, do the "awards ceremony" (we had a certificate and a treat for each child), and do dinner, cake, and presents - all while dealing with Dr. B's call, getting Noah hooked up to IV meds, manage his behavior,and everything else.
I am so tired and I am scared. Now that everything is quiet and I can finally breathe, I am shaky and tearful. I was so frightened when I saw him lying there on the ground. I don't know where "my Noah" went and I don't know why he is gone and I don't know how to get him back. I don't know what neuro is going to say tomorrow. I don't know what we are going to learn or what bomb might be dropped on us. I'm just scared. I hate mito.
So far, so good . . . when we got to the doctor's office, most of Noah's labs were still pending, but several important results were in and all looked reasonably good. We were gearing up to go to the hospital for a CT when the doctor decided to give him a few more days on a different antibiotic. If this is just a sinus infection, it should be knocked out by this second antibiotic combined with the first one.
He has a new "deadline" of headache-free or dramatically improved by Thursday. My understanding is that he will need a CT at that point if he hasn't really turned a corner.
I have mixed feelings about that. On one hand, this little guy has had so much radiation in his life that he should be glowing in the dark by now - for that reason, I wasn't crazy about doing a CT of his head. On the other hand, IF the CT is going to show something, it seems that it would be better to find it out sooner rather than later. Thursday is Timothy's birthday and the day before Christmas Eve. There's not much margin to do anything if anything needs to be done at that point. We want SO much to have him home and feeling good for Christmas!!
Of course, if Noah's blood cultures show something, that will change the game entirely. I truly don't think they will - he feels yucky but sure doesn't look seriously sick. I think the cultures were more of a precaution than anything else.
In the meantime, we keep living life. We had a fun day Sunday gathering wild misletoe and hanging it in nearly every doorway (can't have too many kisses, right?). We made MORE cookies - pretty sparkly snowflakes. Tomorrow we are taking the older 6 children to see Tangled. They all earned the money to buy their tickets and they are really excited. Jeff's sister is here from MA with her husband and 2 adorable sons (how did my nephews get so big??), and they are joining us at the movies. My mom is watching Noah and Mary Faith and is looking forward to getting the little ones all to herself for a couple of hours. Later tomorrow or Wednesday the cousins are all meeting here for a big gingerbread house making marathon. Yep, more cookies . . . and what did Timothy request for his "birthday cake?" You guessed it - a cookie LOL. Actually, he wants what Matthew had last week - "The World's Largest Ice Cream Sandwich." This involves my making 2 ginormous chocolate chip cookies in pizza pans and making them into a huge ice cream sandwich. It's a safe bet that I won't be looking for any cookies for a while once Christmas is over. :-)
The only big Christmas tradition left on our list is to pile in the van with hot chocolate, crank up some Christmas music on the radio, and drive around looking at lights. Noah has just been soaking up all of the Christmas fun. We watched the Polar Express the other night and he was delighted. He enjoys playing with our Little People nativity set, talking about the Christmas story, admiring the lights on the tree, doing craft projects, seeing the candles on the table, and everything else. I helped him plant some narcissus bulbs in a big vase and we have to examine their growth at least 5 times a day. :-) It is a gift to see the joy in his eyes, and it breaks my heart when he wears out so quickly and wants nothing more than to curl up on my lap or go to sleep on the couch.
Thank you for your continued prayers. They mean so much, as do your encouraging comments!!
Noah's headaches have not gotten better - if anything, he is feeling quite a bit worse. Today was his deadline to feel better before we had to get really serious about this headaches, so today is turning into a day of Noah Medical Drama. Ugh.
His nurse came out and drew a boatload of stat labs, including peripheral blood cultures (drawn from a vein, not his line - big ouchie, but Noah was SO brave.) In a few minutes we are heading to the pediatrician with the hopes that the results of the labs will start coming in about the time we do. Dr. B is off this week so we've been coordinating between him, our nurse, and the peds office. Noah will be seeing a doctor he's never seen before, so we'd appreciate prayer for a smooth visit. It is seldom easy to bring a new doctor up to speed, but since Dr. B. has called and filled in the other pediatrician, we're hoping that things will run efficiently.
It looks like the office visit will be followed by a trip to the hospital for a head CT. We are trying to do that here in Greenwood to save the long drive to Greenville - the only downside is that Noah can't be sedated here. It will be a fast scan and I really think he will do OK with it.
The long and short of it is that we are in standby mode now. The suitcases are pulled out and sitting in my room just in case. I really need to go through them and reorganize, add in some new little hospital surprises we've bought here and there to save, etc. I don't know how to call this one - I really can't guess if we're going to be home for the week or heading to Greenville. I hope we'll know more today. I'll post tonight if we have any information.
I am writing from the car on the way to the Greenville ER. Noah has a pinprick hole in his broviac so we are headed in for what we pray will be an uneventful repair. His last ER repair did not go well and had to be redone, so please pray for a good outcome. It makes me a little nervous to take him to the ER when he is as under the weather as he is. He is at greater risk of catching something, plus we don't want them to decide to admit him!!
It's been hard to know how to update lately, so (as you know), I haven't done so since Sarah's birthday. Noah has been struggling and teetering, and every time I think I know how to update, he switches gears and changes the game again. His headaches have been a big source of trouble for him, and he often really fades when his head starts hurting - he'll get pale and so tired and just want to lie down or be held. This child has had SO much radiation, so the consensus has been to treat him as if this is a sinus issue and hope the headaches go away. His "deadline" is Monday . . . if we don't have improvement by then, we'll need to do a CT scan of his head.
On top of that, he got a cold last week. It probably didn't help that our heat was out for almost a week with temps in the 'teens. Yuck. We did keep space heaters where he was and kept him bundled up, so he was never really chilly. It seems like the half our town had the heat go out when it got so cold, and it just took time for ours to be fixed. The whole thing had to be replaced (makes me glad we're renting!!) and it took more than 2 days to get the work done once it was our turn. He handled the sniffles and cough surprisingly well but kept us holding our breath as he would nudge towards "hospital sick" and swing back again.
We thought we were out of the woods this week - all cold symptoms were gone, and while he was obviously exhausted from fighting the virus, he was looking good for Noah. The biggest problem is that his gut was acting up with a good bit of gastric juices coming out around his g-tube. Yesterday he had one of his episodes where anything that went in his g-tube came blasting out around the tube, and we finally had to hook up his g-tube to drain. When we did so, we realized that almost his entire night's feed (the 400 cc's he gets in his tummy at night) had been sitting in his stomach and all came back out. Not a good sign, as this kind of shut-down usually heralds an infection.
Last night he woke up feeling yucky and climbed into bed with us. His jammies were soaked so Jeff took them off and put him under the covers with us. When I got up this morning, I was horrified to find a pool of what seemed to be blood on the sheets where he had slept. Back off to Dr. B, sheets in hand. Dr. B confirmed that it was blood, and the smell made it very clear that the sheets were also soaked with gastric juices. The good news is that it seems likely the blood is coming from inside his g-tube stoma (the opening or hole from outside his tummy into his actual stomach). We can't visualize the source of the bleeding, so it can't be cauterized. The bleeding is probably being caused by irritation from gastric juices leaking out of his stomach.
The bleeding is not a huge concern in and of itself. It's the serious lack of motility causing the bleeding that is the big worry right now, as well as the nagging concern over what could be triggering this problem. Dr. B said he's not ready to send Noah to the hospital yet, but will be following this very closely. Please pray that the underlying problem will be resolved easily and that Noah will start feeling better. We also continue to need BIG prayers for his wheelchair. We still haven't gotten approval, and it is getting harder for Noah to use the loaner chair. He just needs so much more support than that chair offers and it is hard to see him so uncomfortable when he gets tired.
On happier fronts, it has been so amazing to all be together at home for so long. We haven't spent an entire holiday season at home together since Noah was a tiny baby, and I am constantly overwhelmed with gratitude for this blessing. Today was Matthew's 14th birthday and it was such a joy to celebrate with all of my family together in our home. The younger children have been SO busy. They wanted money to buy gifts for their siblings and to go see the movie Tangled next week, so they decided to make and sell plates of cookies. We've baked nearly 2,000 cookies for their cookie plates and their sales have been great. We also had the joy of spending yesterday with a bunch of friends decorating sugar and gingerbread cookies. I'll admit that I wasn't quite thrilled to bake hundreds of cut-out cookies after doing so much baking with my little ones, but it was wonderful to spend the day with friends and see all of the children enjoying themselves so much.
As much as we've struggled with Noah's little bumps in the road this month, there are other children who are struggling SO much more. Eithene, Cooper, and Emerson are all desperately in need of your prayers - their links are on the sidebar - please visit, pray, and leave a note for these weary families.
Blessings, Kate
P.S. We've had some questions about our new address from folks wanting to send things. Our new address is: 101 Sherwood Lane Greenwood, SC, 29649 I'll go through all of the sidebar links in the morning and make sure I've changed it everywhere.
Tomorrow Sarah Elisabeth turns 8. All day today she has been celebrating the first time that it has been her last day to be 7. :-) It's been an entire day of lasts: the last time she had breakfast while 7, the last family prayer time while 7, her last swim lesson while 7 . . . all day long. With each "last" has been the reminder that "when I do this again tomorrow, it will be the first time I do it as an 8 year old!" She is, like most children that age, absolutely positive that being 8 will be dramatically better than being 7 ever could be. She even thinks she'll be taller than me when she wakes up. (Sadly, she's not TOO far off there LOL.)
It's got me pondering earthly lasts. Each and every final "first last" we ever have on this earth will mean that our next one will be in heaven - and what glorious new "firsts" those will be! If we saw those first lasts with the excited eyes of childish faith that just knows the new firsts will be infinitely better then anything we had before, we might view eternity just a little differently.
We've had a busy day getting ready for her big day. I'll let you in on a little penny-pinching secret - http://www.hp.com/hho/hp_create/ is an incredible resource for free printable party stuff. We got most of Noah's How To Train Your Dragon decorations there, and have been busily printing and assembling flower fairy paper chains, fancy butterflies, tiaras, placecards and more this evening. These printables add a glamorous touch to Dollar Tree paper goods, and it's fun to sit and make the decorations as a family while talking and laughing together. It is a great way to make the birthday child feel very, very special and pampered without spending a ton of money.
She is going to have a GREAT day tomorrow. My mom is taking her to get her hair cut (trimmed and curled), then treating Sarah and I to the Queen's Tea at the local tea room (very, very fancy stuff!). When we get home, Jeff and I are taking her to get her ears pierced as her birthday gift from us. She knows about the hair and the tea, but the ears will be a surprise. She's been asking to get her ears pierced for almost a year now and I know she will be thrilled. We always have the grandparents over on birthdays for dinner, cake, and presents. Sarah asked if the family of her best friend could join us for dinner in lieu of a separate party and we were happy to oblige. One of our favorite Christmas activities falls on tomorrow night as well - a local orphanage puts up thousands of lights and there are horse-drawn carriage rides through the entire area. There is a big petting zoo, a live nativity, bonfires, and more. Every few years it falls on Sarah's birthday and she is oh-so-happy that we will all be going there together after dinner! It's shaping up to be a very special day for a very, very special little girl.
I'll try to get pictures up, but it might be a while. My laptop died the other day (sob) and I use it to edit all of my photos. If it looks like we won't be able to get my laptop repaired for a while, I'll probably go ahead and install Picasa on Jeff's computer.
Noah has been holding his own for the most part, but has been complaining of headaches several times a day for several days. This is a new thing for him, and if it continues I'll need to take him in and get him checked out. Please pray that it is no big deal. He doesn't seem to be in terrible pain, or I'd take him to the E.R., but I am concerned by the fact that he isn't getting relief from Motrin.
Quite a few of you signed up for Swagbucks under my account - thank you! It's obvious that you are all raking in the Swagbucks and I've enjoyed seeing my account going up each time you do. I forgot to mention a really important tip when I wrote about Swagbucks in my last post. There is a limit of 2 prizes per day, and 5 prizes per month. While the $5 Amazon gift card is the best value, keep an eye on how your points are shaping up so you can maximize your earnings. For example, I got my 5 $5 gift cards in November with over a week to spare, which means that today I rolled into December with a ton of Swagbucks (about 4,000). I could cash them in for $5 cards at 2 today, 2 tomorrow, and 1 on Friday, but I would still have tons of bucks left - not to mention all that I would earn the rest of the month. Since I want the maximum amount of gift cards as early as possible this month (using them for Christmas gifts), it makes the most sense for me to hold on a few more days and cash in for a $50 card before I start doing $5 cards. I don't know how they figure the pricing on these cards - if a $5 gift card is 450 SB (Swagbucks), then it stands to reason that a $50 card would be 4,500, right? Well, it isn't - a $50 card is 5,900 SB. A $25 card is an even worse value when you compare SB to $. Long story short - as a rule, go for those $5 cards whenever feasible. You can apply as many as you want to an order and I've made several large purchases using tons of $5 cards . . . but if you start seeing your SB pile up, then think about clearing out with a $50 card before starting in with the $5's again. It's not that the SB expire, but you'll get the most $5 cards if you stay current cashing them in.
If you missed out on what I wrote about Swagbucks, I think it was the post before Thanksgiving. If you sign up through my link at http://www.swagbucks.com/refer/jkestes, I'll get matching SB every time you earn them (up to 1,000) - and you'll get matching SB every time one of your friends signs up with your link. I truly believe this is the fastest, easiest, and most legitimate way to earn free things online. (You can get a lot other than the $5 Amazon cards, btw - you can even cash in for $ in your Paypal account, not to mention actual merchandise. You can even donate money to charity using SB. I just focus on the $5 Amazon cards b/c they are a good value and I can get nearly anything on Amazon.)
Thank you all so much for the way you hold our family in prayer. It's been amazing to be home for so long and to be able to just live. You can't imagine the joy I felt sitting listening to Sarah chat while we made decorations for her party - it's oh-so-different from trying to celebrate her birthday in Noah's hospital room. We've been enjoying such a peaceful Advent so far and I won't even let myself think that anything could come in the way of our family all being together for the entire Advent season. This unhurried peace has been missing from our family for 4 years and it is both beautiful and strange. Yes, Noah is struggling, and yes, that breaks our hearts - but we are choosing to focus on celebrating with him and just soaking up every happy minute that we can ALL share TOGETHER. When he is so brave and joyful, how could we be any less? Even though his care takes a lot of time each day, it's been absorbed into our routine and this season feels blissfully calm and quiet. I feel like I am finding margins again - the time to do the beautiful daily things of life every day is such a staggering gift, and some days it's hard to believe that I'm not dreaming. I am such a blessed woman, and I am so thankful for my husband and my children and the rest of my family. I know that I am wealthy beyond all measure no matter how much or how little is in my bank account, and I would rather sit and make decorations with my children than have the money for an extravagant party.
I'll leave you with a very special video. (You might want to grab tissues before watching.) Noah loves worship time at our church. We sit nearly in the front row so he can see the worship team clearly from his wheelchair. He's been going around singing and humming to himself a lot lately, and the other night he started doing it again while I was holding him. I was jolted when I recognized the song as one we sing in worship time. When I commented on his singing, he told me that this was his "special favorite song" and proceeded to sing almost every word. When we sing this in church, he is truly radiant. I can't think of a better song for him to love.
We've seen a lot of "rain" this year - the loss of my dad, the loss of our baby, the loss of our house, the progression of Noah's mito, my father in law's battle with cancer, etc. - but I can speak the truth of every word of this song. He never has let go of us in any of this, and He never, ever will. If I were more eloquent, I could have written these words myself, and this song has been of special meaning for me since the first time we sang it in church. It brings amazed and worshipful tears to my eyes when I realize the the Lord gently ministers to Noah's soul the way He ministers to mine, and that even this very little boy rests in the knowledge of God's goodness and love toward him. I hope each of you know this love as well.
Blessings, Kate P.S. This is so much more than a PS and I can't believe I almost forgot it! Noah got the most wonderful package the other day with some Playmobil zebras and some amazing bath toys. Thank you so much - he LOVES those bath toys!! He played in the bath for an unheard-of hour and just had so much fun. He doesn't get a lot of tub baths because they are just so complicated, and as a result he tends to be very frightened by water in his face. He loves the water otherwise, and looks forward to his baths, but almost panics when we wash his hair. He had so much fun with these toys that I don't think he even noticed my washing his hair. :-) Mary Faith is enjoying them too, and I even heard one of my teenage sons playing with the water flutes during his shower the other day. :-) I'll be a nice mommy and not mention which boy it was LOL.
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