Still

sick!

I'm getting concerned.

The rational side of my brain realizes that he's not dehydrated and is probably doing okay, vomiting aside, but the Mom in me wants it to be all better and I can't do it!

Last night we thought we'd cleared the night. That is, until 3:45 when he woke up vomiting again. That would be the sixth night in a row. Yesterday he threw up at lunch time - which he hasn't done since the beginning - and we called our primary care doc's office. You know what they said? They said, "Oh, yeah - he'll need to be seen, but the doctor is out of town until Monday and everyone else is booked solid through Monday." NICE HELP! No nurse practitioner to talk to, no backup doc to talk to. Nothing. He needs to be seen, but too bad because we're too busy! I was FURIOUS. But, furious enough to go to Urgent Care and risk exposing a weakened immune system already battling one virus? No chance of it. If he was dehydrated or lethargic, even feverish, I'd consider risking it. But, it's just the vomiting. (Every day!)

Today, he was clingy and crying again. We thought he was just tired, and being the baby who sleeps best in the car, we left to run one errand. One. And he threw up at a red light just after we left the store. (We all stayed in the car and John ran in for three minutes to pick up something).

He's sleeping on John right now, sprawled across his arm and one leg. We just called the doctor's office back and haven't gotten a return call yet. I'm so frustrated by this. I don't think the doctor will be too pleased to hear how his staff is handling things while he's gone.

Fifth Night

No sleep
Puking baby
Two more girls down

Must

Stay

Awake

Send provisions. Last one standing. Avoiding all hot spots. Hands dry from washing constantly.

Over and out.

Twas the night before Christmas

...And all through the house
Every creature was stirring, (I WISH it was a mouse!)

The stockings were hung by the chimney with care
In hopes that St. Nicholas soon would be there.

The children were puking all over their beds
No visions of sugar plums danced in these heads!

Maybe more tomorrow - with a lot less rhyme.
I have more bedding to wash, and I'm calling "BEDTIME!"

Hope your Christmas day was much better than ours!

Holiday preview (don't look if you want to be surprised)

I finally got the Christmas pictures taken this morning. A dear friend embroidered the girls' shirts (she ran into some problems with the original design and ended up doing a beautiful trio of sugarplum fairies). She made four matching bows to go along with the shirts, just because she's that kind of person. :) Thanks, Heather!! She also made Jack's entire outfit - it's super smooshy soft velour/velvet and has three toy soldiers across the front for our Nutcracker themed holiday ensemble.

So, what do you get after 140+ rapid-fire pictures in the bedroom? Not one single good one of the boy! I did take a separate one this morning that I was fairly happy with, but decided to just go with the group shot anyway. I'll upload all of the finalists, to see if you can find the subtle differences. Kind of like the "what's different" pictures in Highlights Magazine, for those of you in my generation. What I hope is that only *I* can see the issues with them and all of you see them as perfectly nice holiday pictures. :)

Hope you enjoy them. (If you're nearby, you will likely get a hard copy - but the rest of you will have to be satisfied with the digital images). And, now that I look at them in larger copies, I'm regretting my choice in which to print. But, oh well - none of them are perfect, so it'll do!

Hiccup

We've hit a bump in the road. It's purely administrative and John and I are certain we have grounds to dispute it, but things are a bit stressful right now. Suffice to say, I am growing really tired of people assuming they know what they're talking about regarding communicable diseases and ones that have not been present in this country for decades.

it's a fight I don't have the energy to fight right now. I just want it to go away. If you've ever birthed a baby in the hospital or had to take your child to urgent care or the emergency room, you know how it feels. The nurse or administrative staff comes up, wants your insurance card, wants to chat about when you first ate strained peas and which shade of yellow your urine was on your sixth birthday and you just want to scream "SHUT UP, GO AWAY, AND FIX THIS!" That is how I feel right now.

I'm done with talking about it, so I don't want to rehash everything at this time. It is far too emotionally exhausting for me and, truth be told, it doesn't matter what someone else's opinion is on the situation (much as I appreciate the commisserating and hugs). It only matters what the administrators think and demand.

Maybe in the future, maybe not.

I am, however, happy to report that Jackson is doing very well in his third cast. We had ZERO trimming issues and no hip bone problems. I spoke with the originator of ISOP (the infantile scoliosis outreach program) who plans these enormous training sessions with doctors. (The one we first attended in August in Chicago.) We are hoping that because this local physician does serial casting for club foot, he will also be open to early intervention serial casting for the spine. We will likely have him do the follow-up x-rays for Jack in January, and I will be armed with loads of studies, information, and data for him.

It would be tremendously hard to leave the connections we've made in Chicago. But, then again, maybe they're giving us no choice with this latest issue cropping up.

Hope this week finds you all well, and filled with the smell of baked goods and evergreen! Stop to look at the glistening snow and enjoy that crisp winter air. Since we aren't able to buy presents this year, it's really shifted our perspective regarding the holidays - and in a good way. I can't tell you how many times I ran out to get just one more thing for X or a gift bag for Y. And why? Sure, sometimes you come across that one thing that is just PERFECT. The thing they use all the time, that really personifies that individual. I can think of a few gifts like that in my lifetime (I hope). Giving presents is a love language for me. I enjoy doing it. I truly do. And, earlier this season I was so upset that we couldn't give gifts, I didn't even want to talk about it. I hated hearing about Christmas or the holidays because it pained me to not have two nickles to rub together. I felt like a failure - inadequate. But, you know what? Today I'm 100% at peace with it. I know that no matter what we have all the things in life that we need and that we are so blessed in so many ways. Not having one more *thing* to clutter up someone's home may end up being more of a gift to them this year than the opposite.

Cast Two - A Success!

Monday morning we drove up, prepared for an extra day. A group of friends came together and helped us to have enough for another night in the hotel, if the weather didn't hold out. They were forecasting significant ice, and a good amount had come through on Sunday, so we knew the likelihood was high that we'd be up there for Tuesday night as well.

As we drove through the edge of Springfield the trees grew more and more grey. A closer look would show that every branch, every blade of grass, every power line framing the road was encapsulated in ice. The photog in me wanted to stop and document it, but the cautious parent in me wanted to keep moving and get past it. Luckily, by Bloomington the ice was gone from the trees and we saw nothing but white blankets of snow.

We always set out in the morning with a sense of dread. The commute is no longer a fun road trip, but one of duty - a burdensome commute that leads to sleeplessness, disappointment, and the stinging slap of reality. Jack slept for most of the trip, and when he was awake he was happy to play. The roads were bone dry, almost miraculously, and we made it up to the hospital in almost record time.

Once we got in, we sat and waited for most of the afternoon. It's always hard on them, not knowing when we'll be there, and there is often a slew of miscommunication. First we were sent to radiology for x-rays, then we saw the doctor in the hallway who said to have his cast taken off (as we did last time) THEN get x-rays. So, we headed over to the cast room and waited again while L (our favorite casting angel) completed an arm cast. At last - our turn. We got Jack ready with headphones and a movie, hoping that might help it to not be so scary. Let's just say we were wrong.

The first was a long cut down the side of the cast. L worked with the confidence of the experienced caster she is and we were grateful to have Jack in her loving hands during this process. She works so quickly and gently, and is one of our favorite people at the hospital. After the cast was cut, she used her special scissors to cut through the shirt that goes under his casts, then peeled it off like a shirt.

His back looked scary. I didn't look at first. She confirmed John's concern that it was skin breakdown. She quietly stepped aside and got a small tub full of warm water and a washcloth. While he sat on the bed, she gently washed his back and it immediately began to look better. The bruising went all the way around his pelvis and was particularly bad on his hip bones. We knew to expect this at some time during the process, and were not terribly alarmed. We were so anxious about getting x-rays, we didn't worry too much about his skin. Clearly, it's far more permanent to fix his spine - the skin will repair in time.

L chatted with us for a moment about the next day's cast and loaded us up with a baby wash, skin protectant, and powder for his skin as well as a roll of cotton padding to protect his shoulders. She was no longer going to be able to be in the operating room during the casting because it was too crowded and she was needed down in the cast room, so we were taught how to protect his neck from the sharp edges of the fiberglass. This way no matter how long it took her to trim up his cast, he would not be injured by the cast in the meantime.

The x-rays were terrible again. Jack screamed and thrashed and was hysterical, as always. Luckily they were able to stabilize him and got two good images on the first try. We lucked out this time. They sent us back to the cast room - where no one was left - and then we hunted down L2 (the doctor's right hand woman whom we ADORE). She said we were free to go, but let us use an exam room to get Jack dressed (he was still in a gown). I asked if I could see his x-rays and she put them up on the lightboard. The bottom one was from today - the top from last casting, just out of cast number 1 (70°). Although it looked significant still, it was obvious that the curve was closer to the center of his body and appeared smaller. L2 said, "IT HELD!" We were jubilant!

We drove to our hotel and checked in. The parking was ridiculously expensive and it wasn't even connected to the hotel. We had to take a random, dark elevator to the ground level, then walk to the doors of the hotel. I swear, if there is an ideal hotel it isn't in Chicago. We went up to our room and dropped off our bags, then went out to find some dinner and a grocery store. On the way, I stumbled upon the hotel we stayed in last trip and the grocery store we had been to. We got coffee for the next morning (at the grocery store) and some things to fill up Jack's belly.

After returning to our hotel, we immediately filled up the bath. For the first time, we set him down to walk. He fell. It was like his legs were Jello. He couldn't support his own body weight at all. It was scary, seeing him so helpless, and we wondered what he would be like after a year of this.

Jack was hysterical (yet again) and terrified of the water. I may as well have been pouring acid on him. I was sure security would be knocking on our door at any moment. I always cringe checking into a hotel, looking around for "neighbors" and realizing how poorly everyone nearby will sleep that night because of us. The bath ended quickly because of the shrieking, and John took him into the bedroom to get him dressed for bed. His skin was already looking so much better, and we slathered calendula cream on him again.

Once jammies were on and bedtime was approaching we started trying to get him to eat. I bought two bananans (it would be cruel to eat in front of him in the morning, so just enough for him to take one, drop it on the floor, and have another). Luckly he didn't drop one this time, but he didn't eat it either. He ate about half of a banana, then abandoned it. After a few bites of a cookie, he ate two bites of a second banana. Oatmeal cookies, usually a favorite, were a bust as well. It was as if he knew we wanted him to eat it and was not just to challenge us.

We set the alarm for 2AM, the last hour he could nurse, and went to bed. Since the cast was off, he was so hungry. And with the repeated trauma of the day he needed the comfort. So, he ate. Then rolled around. Then ate. Then laid on John's chest. Then ate. Finally he fell asleep after 10. I wish I could say the same for us. The room wasn't terrible - the bed was comfortable and the same size we have at home. But, John could not fall asleep and I slept very lightly, so every fifteen minutes (as soon as I'd fall asleep) I'd see flashes of light as he would flip channels. I was getting impatient, knowing how little sleep we'd get, and I barked to turn off the TV. Then I hear click, click, click-click-click. It's the Blackberry! "WHAT ARE YOU DOING?! GO TO SLEEP!" I think it was after 1 that he finally slept. Then, at 2 the alarm goes off. Of course, this is the night the boy sleeps. I had to wake him up to eat. At 5:14 we heard the familiar scream of a hungry boy who has just woken up. 16 minutes before the wakeup call.

I got up and got out of the room - knowing my presence would just aggravate the issue. John got up with him and walked around. He finally stopped crying by 5:30 but we had to keep our coffee cups and any remnants of food or packaging hidden. He doesn't understand all of that yet and asks for things now. It's so hard to say "no, you can't have that" when you know it's a basic need. I watched the weather, anxious to see if the ice had come in the middle of the night as predicted. The windows showed puddles and drips, not icicles and sheets, so we persevered.

As it was nearing 6, we headed out the door to the hotel. We were told even though we were going second, we'd have to arrive at 6 ("In case the other baby doesn't show up or isn't cleared for anesthesia"). It made no sense, but we've learned that our feelings about a policy won't change that policy. However, we knew that the other baby WAS going to be there so we took our time on the roads.

When we arrived we went up to the second floor where we were last time. Immediately, we were told that we had to go downstairs, to the inpatient wing! The nurses are different, the care is different - it just isn't the same down in the dungeon. I was disappointed, tired, frustrated, and knew we'd be sitting there for over three hours waiting to go into the pre-op room.

Do you know what babies who are tired and hungry love? They love having strangers come into the room - especially babies who HATE anyone and anything to do with the medical profession. If you have a stethescope or a white coat you may as well be a chainsaw weilding murderer. So, please, come in - spend as much time as you can with us - and comment how he doesn't need to be scared and that you aren't going to do anything that hurts. He totally understands that, being a rational and mature individual at the ripe old age of sixteen months. And when the blood pressure cuff doesn't work, come in and do it again - and again - and again. Oh, and while you're at it, have a resident and a nurses' aide, and an assistant nurse, and what the heck - the cleaning lady come in and do it again. The screaming is fun, isn't it?

Despite the drama, we deliver a huge tray of biscotti and a pound of locally-roasted coffee to the nursing hub in the inpatient area. I see nurses walking the hall, munching on biscotti and drinking coffee. Somehow we made a lot of friends that morning. The power of food.

Finally, it's time to go upstairs. We convince them that we are competent enough to carry our own son and that putting him in the tiny baby crib with bars and a huge glass hood over the top is going to add to his pleasant demeanor this morning. Ah, at last, the familiar faces of upstairs! We are so glad to be up there again with Jack's buddies. (Or maybe it's just the realization that the end is near and Versed is coming.)

We go through the typical paperwork and authorizations. The anesthesiologist explains to us that they normally want 6-8 weeks between a virus and a breathing tube. She does her job of terrifying us into thinking his airway may be hyper-reactive and that he may be left on a ventilator for a day. We smile and nod and sign while our gut reaction is to grab him and run away from this nonsense.

His surgeon came in, greeted us, and we chatted about Jack's skin, bruising, and a new bump we hadn't seen before. He was unusually optimistic when he announced that the second cast had gotten the curve down from 70° to 47° - even out of the cast! This was huge. The progress is usually much slower, and he had told us last time that he didn't think this would be the end for us. However, hearing this news a new light entered the room. We were thrilled.

Jack got the Versed this time, but didn't really settle down. I told John to lay him in the bed - like we always do - and then they wheel him out and he's none the wiser. But, this time someone offered to carry him - says she loves babies. We should have known. Bless her heart, she thought it would be best - that she was being nurturing and kind. But, remember - she's got a stethescope. So, about three feet from us he started crying. The Versed doesn't help this time, and we leave the room with the last image of our son screaming for us as he's being carried into the OR.

Once again, we make our way down to the cafeteria and they are closed for breakfast. This happens every time - you think we'd learn. We head back upstairs to the OR waiting room and see the other baby's mom and dad. It's so nice to sit and talk with parents who REALLY understand. We aired our grievances and shared in our triumphs and setbacks. Their beautiful baby came out first. Her improvement was HUGE! We were utterly thrilled for them. Sometimes it's hard to hear of another baby improving or being cured, but in light of our progress that morning we were ecstatic. It was working for both of us!!!

Then, it was our turn. Dr. S came out and said he had done very well - no respiratory issues whatsoever. And, drumroll please, it was down to 22° in this third cast!!!!! He was downright giddy - so obviously pleased with himself (I imagine it's hard not to be with two parents gushing and singing your praises in the hallway). His entire demeanor regarding Jack's spine has changed. Just as we were asking if we could stretch out visits, now that we're seeing improvement, he was suggesting the same. We always seem to be on the same page. We asked if there was any way to have a local doc do x-rays and send them up, and he mentioned he knew someone here (He went to Wash-U) and owed him an (unrelated) email anyway. So, he may be able to call in a favor and have us established here with a local doc as well. (AND - he said the underground rumblings are that perhaps this doctor may do casting in the future, and he wants to get him up to Chicago to see how it's done!) Fantastic.

We waited for a while and were surprised we hadn't heard any crying yet. I asked a nurse to check on him and she came out and said, "He's great. He's sleeping!" Sleeping?! MY son? Wow. When they brought him out, he was groggy, but mostly quiet. Then, as they turned the hall I saw John standing over him in the crib, trying to give him a binky. He was coughing. If you're a mom - you know this cough. I said "turn him on his side, he's going to puke." The nurse looked at me like I had three heads, John didn't react. I said, "TURN HIM ON HIS SIDE." She said, "no, he's fi...." BLAAAAAAGH!!!!!!!!! He threw up in the bed, coughing and choking. John picked him up and he threw up again. The nurse was alarmed, "What IS this? We didn't give him anything!" I said, 'It's orange, it's Versed." She said, "There's way too much here to be Versed," and he threw up again.

A few minutes later, we were carrying him back down to the inpatient wing and he was settling down. He had a 7 year old, very active, very loud, bipolar room mate by this time. Every time he'd close his eyes, the boy would scream that he wanted to move the bed, that he wanted music on, our would operate the bed himself with a loud clunk and hum. His mom wanted to chat and we just wanted silence so Jack could sleep off the nausea. No such luck.

I finally nursed him, despite his nurse downstairs saying to wait, and he was fine. He would fall asleep, then startle awake in a fit of screaming and crying, then fall asleep again. We had to take him to casting ourselves to get his cast trimmed up, but L did a fantastic (and super fast) job and we got out of there in record time. Back in the room, I hunted down Jack's nurse and got our discharge papers just as he drifted to sleep on John's lap so she said she wasn't worried about vitals. Hospital policy - you must be escorted out - so someone came to walk us out AND, why not, let's wake him up and take his vitals for the 9,473rd time of the day!!!! So much for that.

We get up to the car and the roads are wet and cold but no ice!! We cancel the hotel room, check out via phone, and hit the road. The drive was long, it got dark early and the last two hours were particularly hard after an emotionally exhausting day and very little sleep. We sort of operate on adrenaline all morning and then the fatigue hits when we're stuck in the car all those hours. It was a much longer drive home because of the rain, but what a blessing to JUST have rain! All the prayers, all the positive thoughts, were answered. We arrived safe and sound that evening to a warm house full of children and a pan of brownies! (And they were still hot)

OOOH - THAT!

That's what Jack said when he woke up to quite a surprise in the car...

Happy St. Nick's Day!

Today is the feast of St. Nicholas and he snuck into the house late last night and filled the stockings with treats - coins that represent the dowry he paid for the three poor girls and some small toys for the little ones. Jack got a set of Little Einsteins figurines and these little Jack's-hand sized trucks. SO cute!! He's sitting on the floor with them as I type, putting a Kelly shoe into the back of one. They're the farm equipment line of Tonka trucks with small faces on the front and the bright colors seem to keep his interest. I never imagined I'd love the whole John Deere thing nearly as much as I do - being born and raised quite the city girl - but this little set of farm trucks includes a couple classic gold and green that reminds me so much of the John Deere line.

Today is blustery and cold - and the snow has just begun to fall. I pray it's settled and melted by the time we leave for the next cast. Speaking of, if you haven't heard by now, we had to cancel the last casting. Jack suddenly spiked a fever in the middle of the night and it was over 104° - going down to 102° even with motrin on Friday night. All day Saturday he was fussy and miserable and feverish, and just wanted to sleep and nurse, so we thought we'd better call the hospital. Thank goodness the resident was there and spoke with us, as well as the Weekend Coordinator. They called Jack's doctor, who wasn't in town, and spoke with anesthesia when no one else could be reached. Because of his age, they said it was too risky to intubate and put him under general with a recent fever and cancelled our OR time. By Saturday night he was awake, feeling much better, and the fever had broken. Go breastmilk power!!!

Fast forward to Monday and we finally reach someone at the hospital. We now need to go to the doctor and get a statement of wellness from our local primary care physician in order to even get a time slot in the OR. So, we get an appointment, drive all the way over, and spend an hour at the doctor to get a piece of paper that says what we already know - Jack is fine. Faxed that over, and we are on the schedule for Tuesday morning. This works out so much better anyway because now we can have his cast cut off on Monday and get x-rays, then go in for our Tuesday morning slot.

Not much else is going on here. Today is our 11th anniversary and we're having a quiet (Ha!) dinner at home with our whole crew to celebrate our 11 years of being a family - and tomorrow is Skylar's 8th birthday. She's been really keeping her chin up about not having a party and completely lost it today after lunch. But, I think we have some special things planned for tomorrow that have lifted her spirits - even if it snows, we'll play Yahtzee (her favorite!), have family movie night, and hopefully the roads will be okay to go to Our Lady of Snows and see the Christmas light display like we had planned.

Maple Frosted Baby

For dessert tonight I made a spice cake. Not just an ordinary spice cake, but one with homemade apple butter and a homemade non-dairy maple frosting on top for my boy. Jack still can't have dairy, and the rest of us are lactose intolerant anyway, so it's a good thing. :)

And, what's the best part of a cake with homemade frosting? Okay, the beaters - I wasn't going there. But the scraper is second best. That's what you get when you have a sibling (or an Aunt close in age!) who gets the beaters this time :)

I hope you enjoy this little slideshow - okay, enormous slideshow - of Jack's first frosting experience.

Thanksgiving Weekend

We had a nice cozy relaxed Thanksgiving weekend. I hope yours was as well.

Jack was entranced by the Christmas tree - sorry the snapshots are so blurry - he's fast! Once it was lit, he was afraid to walk by it. When it was his turn to put on his ornament, I went to take a picture and he threw it on the floor. We'll have to see if we can order another one from the Downtown Disney shop. Silly boy. He had it in his hands for maybe three seconds. So, he's putting on the metal jingly gold one this year (totally indestructable). He'd hold it out, then pull it back, then put it on the tree, then pull it off again.

Six days until we leave for cast #3. This never gets easier. Thank goodness we had enough Marriott points for a free night this trip because we are barely squeaking by for this trip.

Some pictures to leave you with a smile, I hope.

Knocking out infantile scoliosis with early intervention

This photo spread deserved the second post of the day status :)

Fall Photos

We had a beautiful weekend here - warm temperatures (even borderline HOT inside because of the humidity) and a chance to do a test run of Heather's beautiful custom shirts for Jack. Check out the look on his face while walking around with his little push toy. He's so mischievous!

Have you seen this, have you heard about this?

The Handmade Pledge - what a beautiful thing.

I honestly thing it was sprung forth from the post-Made In China -backlash, but it's a fantastic idea. I will pledge to do whatever I can by hand or purchase handmade. There is positively nothing like a handmade gift. To know that the person not only thought of you, but took the time to gather the materials (or purchase them) and created it for you speaks volumes.

Jack has some handmade clothing now that is, by far, our favorite items. He has a few more coming, too. Every time I put them on him, I know that someone out there loves him or cares about him enough to have taken their day, their fabric, their time to put it together for this little guy. Some of our kids' favorite things over the years have been handmade - QUILTS!, a name puzzle, a painted shelf, a cross stitch, birthday overalls, a name train, ornaments, photos, picture fames - you name it. They know who made it for them and consider it far more precious because of that.

So, this year especially, when money is tight for so many people, consider the gift of something made from the heart. I already have a special project planned for my family this holiday season. Check out sites like www.marthastewart.com and www.familyfun.com and www.craftster.org for ideas for the special people in your life.

Home again, home again, jiggity jog

We are NOT going to Chicago tomorrow! Yahoo!

As much as we love to know how things are working (or, as is the case more recently NOT working), we are relieved to get this news. L called today and said that Dr. S would be out of town tomorrow. She said we could either still come and get x-rays or just skip it, it was up to me. Since this was to be a topic of conversation for our appointment anyway (our concern about repeated x-rays, and the cost and difficulty of traveling up every 3 weeks if we are re-casting every 6 weeks regardless) it was a perfect opportunity to bring it up.

So, tomorrow we are staying home and we will just return in 3 more weeks for a re-cast. Yay!

You might also notice some new elements to the blog here. Sorry - I know it's a bit cluttered and busy, but it brings in a little extra right now and it helps. So, if you get a chance, check out the new features!

You have no idea...

I had a comment left on this blog by someone we don't know, who left it anonymous.

The person said, in part:
It worries me that you are still locked in the initial grief of your son’s diagnosis. You are victimizing him and your daughters. You need to get a grip and find the important things in life. Function as normally as humanly possible. I am praying that you are able to step back and rationally assess your situation and find a way to move forward in a way that is healthy for every single member of your family – including yourself and your marriage.


HOW DARE YOU!!!!!!!!!

You should be ashamed of yourself, projecting those assumptions into my life, into our family. You said your nephew had medical issues, not your SON - you have NO idea how I "should" respond to this or how YOU would. It has been FOUR MONTHS since Jack was diagnosed. Do you know how YOU would react? No. Do my personal thoughts, feelings, and emotions mean that I sit around the house crying all day?? NO. I am not "victimizing him and my daughters" - you don't know me, you don't know my daughters, you don't know my son. I DO function as normal as humanly possible. I write this blog to get my feelings out and share Jack's progress. GET A GRIP?? I'm disgusted by your comments, your generalizations, your lack of sensitivity, your lack of understanding. Knowing a relative who is in an entirely different situation does not give you the right to say ANYTHING about my family or how I handle things. My children are beautiful, well-adjusted children, but I don't have to tell the people who KNOW us that because they SEE it.

Please, don't waste your time or mine with this blog anymore.

Epidemiology

Just as communicable diseases begin, so did our conversation today.

First, we were informed that the FluMist vaccine contains a live virus that sheds for up to 4 weeks. Although our children do not receive it, after speaking with other parents it has become obvious to us that it is commonplace for children to be brought right back to school and public places. I sent out an email to family, asking them to inform us if they've been exposed (or if their children have) and it evolved.

Kids get sick. It's seldom malicious. I'm sure our kids have gotten others sick over the years, too. Sometimes they aren't showing symptoms until after the gathering and, by then, the damage is done.

On the news today, they reported that we are expecting a pandemic flu this season. It's always extremist in the media, but it still raises concern. It is one thing if our kids got sick in the past. It is reasonable. You manage symptoms, treat the illness, rest, etc. An ounce of prevention being worth a pound of cure, we spent some time really evaluating our risks this year.

Children with scoliosis have an increased risk of developing pneumonia. What may seem like an innocent cold or cough, or even be chalked up to allergies, may end up being very serious for Jackson. Even if it doesn't develop into a serious illness, if he so much as has a cold, he cannot go under general anesthesia. The risk of a respiratory reaction is much higher and the hospital won't administer anesthesia to a sick child. (Nor would we ever want them to.)

If he cannot be properly anesthetized, we get bumped. The operating room at Shriner's is a busy place. They usually book it up at least 6 months in advance. Add to that the fact that the casting table has to be brought in and occupies a lot of space, there are very few days that they even cast. If we got bumped out due to illness, we would lose more ground on the curve progression, we wouldn't get him re-casted in the right time frame, and who knows what that would mean for Jack and the time frame of when he would be facing surgery.

So, we've come to the conclusion that we just need to hunker down for the winter months and continue to quarantine ourselves. We're going to stay away from groups, as well as stores, and do whatever we can to stay healthy. It will absolutely pain me to miss time with our families this holiday season, but not nearly as much as if Jack got sick, and he is always the bottom line and our first priority.

Trick~or~Treat Tuesday

Edwardsville has a long running tradition of hosting a Halloween parade. So, instead of trick or treating on the 31st, they do two nights of trick or treating. Last night was our night, and we had a few friends over to share in the fun! We had SUCH a great time - the kids were so excited, and you should have heard the chorus of "Trick or Treat!" when a neighbor would open the door. They got great treats and almost every house had the light on in our cul-de-sac and the one that mirrors ours. Such a great time - I was as giddy as they were just watching their excitement. We are so blessed to be surrounded by great neighbors, in a perfect neighborhood, with good friends. Our girls especially had a blast having other kids to share in the fun.

And, what is a blog post without PICTURES? You know me better than that. ;)

One quick Jack-related aside - a sweet mom I know send him a pair of Hanna Andersson "zippers" - one piece pajamas that zip up the front. Guess what? THEY FIT! Perfectly. He has been crawling around, climbing the stairs, no slipping on hems, no rolled up cuffs - a dream!!! They're fantastic. (So, note to the CAST groupies - www.hannandersson.com - size 90 fits great over the cast!)

And, again - without further ado...

Boo at the Zoo Spooky Saturday

Ten years, off and on, and it grows bigger every year. We arrived at the Zoo to find that the lot was full on our preferred side, but luckily I spied a line of cars leaving and patiently waited for them to re-open the lot. Just in time! We pulled into the 8th spot right by the walkway. Lucky us. And, because my mother-in-law got us a Zoo Friends membership for Christmas, parking in the lot was free!!!! (A $10 value - but there is always free parking in the park - it just depends on how far you want to walk).

Last year we missed Boo at the Zoo because Jack was too small, the weather was off, a multitude of reasons.

This year, we decided at the last minute to go. Around 9 this morning, the sun was out, the weather was mild, and it was PACKED because of it. The event is free, so you can imagine how many children are there - some without costumes, but most of them were dressed for the party. As we walked into the zoo from the Living World we were directed to our right. The line wound around (for those who live here, past the Children's Zoo, past the Insectarium, and all the way back by the Elephant Walk displays!). It was the longest line I have ever seen. However, it moved consistently and went quickly. Everyone was in good spirits, the sun was shining, we were all comfortable, and Daddy got some pretzels to pass the time.

Once we reached the hub of our "path" we realized why - it was the Target sponsored display. They were about to close - it was an hour and fifteen minutes from the car to the Target candy. Craziness. Because they were closing, the candy handlers were insanely generous - Piper walked up and one girl had two hands around this enormous ball of candies - and she dropped it all into Piper's bag! We turned the corner where two radio stations were and one insisted on taking a picture of the girls (maybe it will be on their website!). They all gave out goodies, we found Build A Bear Workshop (who is a local mom-owned company and really great to the community) - they had cute puffy sticker sheets and packs of, what else, Teddy Grahams! So cute. A hospital was giving out bags of pretzels, which we appreciated, and then we turned the corner and saw THE LINE. The event was divided up into several lines all with spooky or seasonally-appropriate names. Apparently, what we had just been through was one sponsored by four companies. The big line was sponsored by something like 9. There were people, five and size across, for as far as the eye could see. Because Target had been so generous (about to close up the hand-outs at noon, as scheduled) we were nearly full anyway, so we headed back out.

We got back into town in time for our downtown Trick-or-Treating here and drove by to see what was up. There were businesses sitting outside with bowls of candy, so we went and said hello for a bit. (We had decided a while ago that we'd skip it if they had to go IN to businesses - kids + little boutiques + costumes = no, thanks). The local precinct had officers at all the walkways helping the families across and we had a chance to chat with a few other families. It was a nice afternoon, and we're finally back home enjoying the quiet and resting our feet. What a day!

Without further ado...

The gift of good friends

You remember Dannielle? Her blog is over there -------------->

You know, the Wild Things quilt? Yeah, THAT Dannielle!

Well, several days ago she made an offer that sort of took a bit of time to process. She offered to have a sewing day for Jack - and get some of the local girls together to make things that might actually fit! I was talking to another dear friend last night and she mentioned something similar - so tomorrow we're going to do what we can at my house while the kids play. Maybe Jack Jack will actually let us get something done! (ha :))

The truth is - this boy has so little he can wear. I thought zip-front hoodies would work, but no dice. Since the cast comes up over the shoulders so high, the top of the zippers hit him around mid-cheek. So, if it's unzipped, they fall off the cast entirely, and if it's zipped up it ends up right around his mouth (and IN the mouth). He freaks.

And, pants - Oh, don't get me started on pants! We have several pairs of elastic-waist knit pants that just slip RIGHT off - they're all about an inch too long, too, so he slips on them. The second he has an opportunity, he pulls them off. This boy!

It just seems like he's destined to be naked! I was able to get away with a tee shirt much better late summer, but today it is very chilly - downright cold. He's in his dia de los muertos hoodie from Allison (which is a modification of a pattern - having shorter sleeves and a larger body). It's genius!

I'm thinking when T is here tomorrow, I'll see if we can hem up some of the shirts that are way too long in the sleeves at least. She has a serger. (YAY!)

What I really covet is one piece outfits, but none fit. And, to do a one piece, you really need a snap press (which I sold years ago). Unless I made some crazy zippered-leg one piece! Oh, that would be a sight. My little Michael Jackson.

We looked for pajamas for him at the store the other day and nothing would have worked at all. He needs a 3T in body, but you know how those buttons slip back open on menswear style ones? Oh, he'd have a fit with those! And the pants were ENORMOUS. John suggested I swap pants with a smaller size (tsk tsk) but I didn't. I need to see if anyone has some Hanna zippers for sale so I can try those on him. With the cuffs at the bottom and on the arms, I think they may adjust enough that they'd work - but you never know. I do know that blanket sleepers don't work at all - and I do know that Target carries zero pairs of pajamas in a 3T that have no feet (except aforementioned menswear ones that would require me to buy two sets of them - creating a $40 pair of pajamas!).

So, today I am optimistic and excited about the possibility of handmade clothes, time with friends, and comfort and quality for my boy. It sounds so simplistic - clothing that fits - but it is indeed a gift, as are my friends. (Thanks, D&T) :)

Boo to you and you...

For those of you familiar with the greatest Halloween party on Earth (also known as Mickey's Not So Scary Halloween Party) - that's the song they play over and over throughout the night. But, last night we were "Boo'd" - our third year of playing this little game with neighbors, where you leave a small gift on their front door with a little note and a ghost to hang on the door, so everyone in the neighborhood knows when you've been Boo'd and they can move on to an unmarked house.

The girls squealed and looked at each clicker, every straw, the candies, the trinkets and treats. It was fantastic! They had even more fun the night before delivering our Boos to the neighbor across the street and the one just two houses down. Quite stealth, those girls are!

In the process, Jack got his first taste of candy - a lollipop he ate while being held (and very closely supervised) by Daddy. He made a HUGE sloppy drooly mess of himself, so I thought I'd take that opportunity to document the answer to everyone's favorite question, "HOW do you give him a bath!?"

And, while on the subject of questions, after a long conversation with my amazing Aunt last night, I've added a list of wishes and wants to the side here. I know many people are not in a position to help, and I totally understand. We don't expect it. But, for those who want to know what they can do - there are some ideas. I know that this year has many families reeling, particularly with the holidays coming upon us. But, for what it's worth, the ideas are there. Your prayers and positive thoughts are the most appreciated of all!

I see skies of blue and clouds of white

What a beautiful day!

It is 83° today. The sun is shining in a clear blue sky. All the windows are pulled open as far as they'll go - no air conditioning, no heat, just a perfect moderate. Through the dining room sheers, I can see the crimson leaves on the tree we inherited when we purchased this home. I saw the buds in the spring turn to tiny white flowers and now a beautiful autumn change. What luck!

The girls are enjoying one of the last warm days, and I can hear Piper squealing in the backyard, running from her sisters.

The blustery wind is pouring from our front windows to the back - so much so that I decided against lighting the beloved Yankee Candles (in "Harvest" and "Autumn Wreath"). But, there is the faint smell of apple cinnamon oatmeal muffins that I baked this afternoon for breakfasts this week.

We will finally get out the Halloween decorations in a moment - not for lack of wanting to, but for lack of motivation and time. The girls have been pestering us for weeks now, and there was always something more pressing.

Were it not for them, I'd skip it, even though Halloween is my favorite holiday of the year. It just seems like so much work with only 10 days left in the season. But, it matters. Sometimes normal matters more than the holiday itself.

So, we will put on a happy face and stick plastic spiders to our fireplace, hang the wooden witch that is as old as Skylar, and do so with a smile knowing what joy it will bring to them.

Angels Among Us

They are there - in the least expected moments you will find them.

We found them yesterday all around us in a moment of panic with Jack's cast. The amazing woman in Chicago who not only makes magic happen, she does so quickly! The local resident who somehow, someway was convinced that it was okay for him to trim Jack's cast. Our Shriner's, who allowed it to happen. The lady who gently rubbed his arm, reassuring him with me, as the scary-sounding cast saw hummed nearby. And, above all, my Aunt and Uncle who met us at the hospital to watch the girls so that we could attend to Jack.

The cast is beautifully trimmed today and Jack woke up 100% back to his typical self.

I am overjoyed - and to celebrate we made the trip out to the pumpkin patch and had a great afternoon. It is a very sunny, beautiful 84° here and despite some silly faces in the pictures, I'm sure you can see that they had a fantastic time.

Freaking out

Skin is raw on his pelvis

Cast is too tight and needs to be trimmed

John is at a meeting!!!!

The stupid phones are dead!

Jack is screaming when I touch his hip

Won't sleep - cries in the car - 4.5 hours from home - end of the day on Friday

COME ON!!!!!

Numbness subsides

Adrenaline is gone, endorphins disappear, and all that is left is the sharp pain of reality.

You go into practical mode in the hospital. We get from home to Chicago to the hospital and through each step of the process. We function on autopilot, because it is easier to do so. We are pragmatic in our approach, and almost emotionless - just going through the motions and loving on Jack whenever we can. Why? Because we cannot bear to see our child going through it and cannot possibly comprehend or process what is taking place.

Once we get back to life, back to our routine, it hits. We talked about it tonight, on the way to get groceries - the utmost in mundane acts. We ask the questions, are rational and thoughtful and practical in the hospital. We absorb the information and accept it. It is when we get home that things are allowed through that exterior shell that protects us, and Jack, from being hysterical parents flooded with raw emotion.

While we are there, it is about Jack - entirely. Tears don't help him. We advocate, we act, we participate, but we do not feel. We cannot feel.

Tonight - it hurts like hell.

Cast #2

Sorry it has taken me so long to update. Sometimes when things don't go as planned, it takes me some time just to process and compose my thoughts. John said on the way home, "I feel like I should send out an email, but I don't even want to. I'm sick of delivering bad news."

That night was fairly uneventful. Immediately after the cast was cut off, he couldn't walk. He would pull to the right side, where his curve ends, and couldn't seem to balance well. He felt so small, so frail in our arms. I was afraid of hurting him. There was a little stone embedded in the top left of his chest. It was from the girls' Superman shirts that they wore to the Relay For Life this summer. I don't know if it got in his cast through his own clothes in the washing machine or just something he picked up crawling around, but John squeezed it and it came out.

We walked to radiology (down the hall) and took the x-rays, and the resident let me come into the conference room to look at the lightboard with him. I pointed out how skewed his pelvis was, because he was thrashing, and questioned whether or not the numbers would be accurate based on that. He agreed that it could change things, but wasn't sure how much. At that point his curve was back up to 70° and the RVAD had increased to 50° from 45.

We drove along in the rain toward the hotel. I hadn't printed directions from the hospital to our hotel because I didn't think we were going to have his cast cut off the day before. So, we attempted to navigate the streets of Chicago based on reverse directions and miraculously found our hotel. We decided since Jack was wiped out from the trauma of the cast saw, it was best to let him sleep as long as we could and get some dinner. Then, we headed back to the hotel to check-in that evening.

There were few parking spots left, and a long line at check-in. After getting settled into our room, went to the grocery store nearby to pick up a few things. There was an underground parking garage where guests could park through closed doors, sbut it scared me down there - very isolated, very dark - unsafe. So, John dropped us off and went to park.

When we got back to the room, we gave Jack his first bath in 9 weeks. His skin was rough, and flaking through his clothing all over us. We made the mistake of both wearing black and we looked like we had been caught in a snowstorm. The hotel bathtub was shallow, and we thought he'd be okay taking a bath by himself. I unpacked his new pirate ducky and we filled up the tub. The second his feet touched water he shrieked - he was kicking his feet, terrified, thrashing around. We pulled him back out and I got in to hold him. He still wasn't happy about it, but he let me bathe him. I gently washed off what I could with warm water, being careful not to scrub his sensitive skin. After the bath, John put lots of calendula on his skin and got him dressed for bed.

That night he wasn't supposed to eat past 1AM in for the anesthesia. Of course, that night he slept until after 2, and missed that nursing. He cried, and didn't want to go back to sleep, but John finally got him to settle down. Unfortunately, at that point we were up and couldn't fall back asleep, so we tossed and turned for another hour. At 4:45 he was up again, and so were we.

We made the drive to the hotel, astounded by how many people were out in Chicago at that hour. Ours was one of three cars in the parking lot at the hospital. We got in around 5:30 and headed to the same day surgery ward. We had to wait for a bit in the surgery waiting room because the nurse wasn't there yet (we were early), but once she arrived she got us all settled in. Kathy was great with him, totally patient and understanding, and had a great disposition.

For the next three hours we sat - and waited - and waited. Although we were guaranteed we'd go first, something came up in the middle of the night and we got bumped. At least a dozen people came in to apologize. Jack finally fell asleep in John's arms and I noticed my shirt was soaking wet. Luckily it dried before long, but I don't think I've been that miserably and painfully engorged since he was a newborn. I was sure I'd end up with a plugged duct or mastitis after that!

Around 9, we were led over to the pre-op area. We got settled in with our good buddy Ruby, who is so great with the grumpy NPO kids. She gave Jack stickers, a teddy bear, played with him, read him books - just above and beyond what we could have hoped for. Anesthesia came out and chatted with us for a bit, then we got to talk to Jack's doctor and care team. They gave Jack Versed again, and he sang songs, laughed, and played until it was time to go back. We kissed him goodbye and they wheeled him back without a tear.

We hurried downstairs, with Ruby's insistance, to get breakfast but we were too late. They were closed by then. So, Jack wasn't the only one who hadn't eaten all day. We returned to our room and waited for his doctor to come and update us. Within the hour, he came in and talked to us about the results. He had gotten Jack's curve from 70° to 25°. He put it on a bit tighter, hoping that it might help the correction hold, but he reiterated that it wasn't likely going to be the end for him. We talked about his surgical options, and asked some questions. I asked if re-casting more frequently might help, and he said he thought it might. Since at his 7 week follow-up we still saw it down to 55°, I knew that we had to get another cast on him more frequently than 9-10 weeks. But, Dr. S feels that he'll likely end up having surgery either at age 2 or 3. He thinks the curve was just too far progressed (being past 50°) when this all started. He spoke with another doctor who has been doing the early intervention for several years and consulted with him regarding Jack's care. The other doctor agreed that it may just be too far advanced to see correction through casting. We also talked about the risks of a curve this bad and the effects on his lungs and heart. All of us are in agreement that casting is his best option at this age, and the surgical methods are just not made for babies this age/size.

So, now we wait. We return in 3 weeks for x-rays to see if this cast is holding him. Either way, we're going to keep doing this for at least another year or so. Even getting it down to 65° is better, surgically, than starting at 90° (which is where Dr. S. thinks he'd be if we hadn't casted this past time). His options include Growth Rods - which are inserted by scraping the outer layer of the spine off and inserting screws and rods into the vertebrae. The problem with this is, he's so small and Dr. S. says that there's only so much of that outer layer - eventually, the vertebrae start fusing together on their own (almost like as if they were healing) and then the spine stiffens. So, they don't know how many years that would buy Jack to grow - he may end up not growing any further once he hits a certain age, if we do rods. In essence, it stunts his growth signifcantly. They also telescope in the middle for expansion, but we would have the major spinal surgery (that lasts 3-4 hours) to insert them, then every 6 months they go back in and do a 1.5 hour surgery to expand them.

OR we could consider VEPTR - which is like a growth rod, but it attaches to the ribs and the bottom of the spine. It is better because it doesn't cause the spine to stiffen, but they just don't know what it will do to the chest wall. And, in a child like Jackson, who has no other health problems and doesn't have a chest wall deformity, we don't want to put that on him - they just don't know what the longterm effects of stiffening around the ribs and chest would mean for his lifespan.

Right now, Dr. S. said there just aren't a lot of good options. He said, within 8 years or so, I think there are going to be better things on the market, but right now - there just isn't much. He added, "We have to try to fit a treatment to the curve, not fit a curve to the treatment - every child is different, every curve is different." And, he's so right. It's reassuring to know that this care is Jackson's treatment. And, we'll continue to get that for him in whatever forms we can.

Numb

After rushing up to Chicago, we met the resident at the hospital in the cast room. He cut off Jack's cast after several terrifying (to Jack) attempts with the saw. He screamed for over a half hour between the cast removal and the x-rays they insisted on.

The measurements are terrible. The day he was casted, the worst he has been, was 64° (official measurement). Today, after more than 9 weeks in the cast, the curve is 70° - it has gotten worse, based on today's measurements, after all we've gone through - all the tears - all the frustration and risks and misery.

It's late and we have an early operating room time, so I need to get off the computer and get to bed in this hotel room, but tonight I don't know what the future holds at all.

Tomorrow, Tomorrow

Today the house is a flurry of cleaning and packing as we prepare for yet another trip to Chicago.

I no longer see the trips as mini-vacations. I dread the traffic, which is gridlock everywhere you go - so unlike our suburban roads of home. There is no "let's run over to this area" in Chicago - there is "let's try to get to the hotel in less than two hours." The novelty has worn off.

As I sit and update the iPod for our hours of driving, I hear the girls upstairs. My heart flips between aching for them, knowing that we will be so far away and terrified of the what ifs in life, and relief that there will be no fights to break up, no emergency potty breaks in the middle of nowhere or five miles past the last exit. A quiet night is a mixed blessing - missing them, unfamiliarity, loneliness - and yet, peace. There is a comforting familiarity, even miles from home, even in a strange hotel room, brushing teeth, getting jammies laid out, and tucking little girls into bed. It is the monotony that is tradition, that is life. Not having them with us will be something like not having a limb. They are so much a part of us.

In the past months we've come to realize, though, that sometimes having one less limb means having three full limbs to devote to Jackson - who needs that and more during these procedures. Sometimes I wish I didn't have to be the mom in this. I wish I could collapse and have someone else take this on - the fear, the stress, the pain, the uncertainty, the - everything. But, as John said today, "It just goes to show, the only people we can count on in life is us."

Want to vote again?

http://evenfloadmin.donet.com/Homepage/2007BabyYoureaStar/tabid/260/photoType/ViewPhoto/PhotoID/18173/ContestID/10/Default.aspx

That's for their September baby contest. Apparently voting began on October 1st, but I'm hoping he still stands a chance ;)

Emotions run high

I know, "What else is new?"

I was reading a message from someone on the CAST support group. Her daughter is appliance-free now. She started with a 50° curve in her spine and in that first cast they got her down to 21°. You can see her story and the progression here
http://www.infantilescoliosis.org/madisons_story.htm


A flood of emotions came over me. As I choked back tears, I couldn't figure out why - was I crying happy tears because Jack may be cured one day? Is it because Jack didn't see good results in his first cast? Is it because I hate going through this, and seeing someone else going through it breaks my heart? Because none of these sweet babies deserve to know so much pain and hurt? That little girl at Shriner's entered my mind - the one with the long, fresh, red scar running the length of her spine toddling in front of me as Jack cruised the hallways. Was this our inevitable future? What does our future hold?

Do you have any idea what it is like to be a massive control freak and have it all taken from you in one fell swoop? To not be able to take this from your child and put it upon yourself? To see them uncomfortable, even in pain, hungry, frustrated, and not be able to help?

And, then, I realize so many parents go through so much more than we do. A mom has been a very good friend to me this year whose son has/had Leukemia. I cannot FATHOM what she (and he) has gone through. My problems seem so minute in comparison. Or, I should say Jack's problems. But, you know what? Not one time has she ever uttered those words, or implied as such - she's never said, "yeah - well - at least your kid doesn't have cancer." She has been amazing, generous of spirit, comforting, loving. I am so grateful for her.

It's all perspective. Someone will always be worse off, and someone will always be better off. But, when it's my baby - the boy I dreamt of for over a decade - I cannot bear the pain. It gnaws at the pit of your stomach and makes your heart skip beats. It makes you throat hoarse from constantly choking back the tears and swallowing hard to not allow yourself to cry, to not let the kids see you cry.

I'm such a follower

Take the 100 Acre Personality Quiz!

Hello? God?

Can you hear me?

6 days and counting

Anxiety is setting in again.

Anesthesia scares me. Last casting, his breath smelled of the awful gaseous medicine that knocks them out. Children's told us that the gas is what causes the worst side effects and they try to do it for as short a time as possible. I need to discuss that with the anesthesiologist at Shriner's. He was so miserable the 24 hours after that cast, and really even 48 hours later. After his sedated MRI, he was fine two hours later - 100% back to his old self. Maybe it's the muscle relaxers, too. They have to administer muscle relaxers so that they can more easily manipulate the spine. I need to pack my arnica.

We have to decide if we want his cast cut off on Monday or on Tuesday. On one hand, I'd like to let his skin breathe and give him a bath. On the other hand, I worry that I'll hurt him - his muscles are not very strong under the cast now and I'm afraid that it will be hard on him to not be supported like that all of a sudden. I'm also concerned about getting him out of the cast and teasing him with freedom, then going right back into it the next day. I'd like this to be as least traumatic as possible. I wonder if they can take the cast off in the OR once he's sedated. Hm. I'll have to ask that as well. We also need to find out if they can petal the edges of the cast while he's still under so that we aren't faced with the cuts on both sides of his neck this time around. Those took 8 days to improve. It was really awful.

And, of course, the reality of him not being able to eat that whole night before and the frequency with which he is nightwaking now raises the concern within me. It is particularly hard sleeping in a strange bed, in a strange room, and worrying about waking the people in the room next to us - oh - gosh - we haven't booked the room yet! How did I forget that?

My head is pounding today and I'm feeling out of sorts, so forgive the lack of cognitive flow.

A sigh of relief

After several negotiations with my persuasive husband, the local dealership ended up giving us a great deal on another van. As much as we hate having to take on a payment at this point in time, we needed a warranty (which we had run out on the old van). Those little things - the tire, the battery - they were going to keep happening. It was inevitable, with a van that had 120,000 miles. Each trip to Chicago is hard on the car - traffic at rush hour is sometimes an hour and a half to two hours just to go from the hospital to the hotel 10 miles away. The mileage is hard on the car. We knew it was inevitable that we'd need something in the next year, and with the current promotions, we were able to get a great rate and low payments with our 05 trade-in paying a good portion of this van. So, while we only have one car again, we are in much better hands on the road. We have our bumper to bumper warranty again up to 100K and roadside assistance as well.

We decided it was just a necessity, and that we couldn't risk coming out of an operating room procedure to find that our alternator was dead in the parking lot of the hospital - or having our transmission go out on the highway halfway up there. All those things weighed so heavily on our minds, and I crunched and re-crunched numbers until we were able to figure it out. Our grocery budget will go down some, but we will survive there with some creativity, and we are going to cut some extras that we don't need to make it work. Having a reliable, warrantied vehicle for 24 trips (at 550 miles each - 12,900 miles or something) - it's just peace of mind. The good news is - we switched our old homeowners over to the same company that does it on this house and saved a chunk each month right there. I no longer have a cell, but we always have John's work phone with us and I don't go out by myself. We won't be able to eat out at all, but that's okay - it's not good for us anyway and it's not like I don't know how to cook ;). And, our basic needs are being met, then some. Right now our energy needs to be focused on the best possible situation for JACK - and this was important.

So, while I don't have that gleeful "I HAVE A NEW CAR!" feeling - it's a relief. We both said this weekend that even having to take on a small payment, we're just so glad to have one LESS thing to worry about.

Ahhh.

Thought I should share something POSITIVE for a change :) Thank you all for you continued thoughts and prayers.

Christmas in...October?

I am an obsessive compulsive control freak planner and list maker. I admit that wholeheartedly. I check my bank account daily and reconcile every penny. I make lists of every food we have in the house and meals for the week. I have six "stickies" on my desktop right now with lists of meal databases, current budgets, to do, standing budget and theoretical "if the other house should ever sell" budget, addresses, ideas for recipe contests, doctor appointments, crafting ideas, cleaning schedules. You name it - I probably have a list for it.

So, it won't surprise you that in a season where yards are filled with leaves and pumpkins are appearing on porches, the hidden aisles of ornaments and lights way in the back of the stores have me in a panic about Christmas. I hate, "We'll see." I hate, "Maybe." I hate, "Let's play it by ear." I want to know NOW. I was the kid who snuck around and found the Christmas presents and opened them, re-wrapping them because I couldn't stand not knowing. My Mom would ship a big box of presents every year, and while my Dad was at work I'd slit the tape open just along the crease to see what surprise was in store for me.

Amidst all of this, I feel like I've had control taken from me. I feel like Jackson's cast is a wrapped gift and I can't see what is inside - I cannot predict the future of what is going to happen. I don't know if he will still need surgery. I can't plan ahead. We had these ideas of saving all of our loyalty points from staying in hotels over the next two years for a big "Out of Cast Trip." The rainbow after the storm, if you will. I got a contest form in my inbox this morning about a sweepstakes for a Disney Cruise and clicked on it, excitedly. I read the dates and realized, "No chance. Even if we DID win, we couldn't use it." Now, I realize, of course, that the chances of winning those things are slim, but I cling to those little hopes and dreams on occasion.

And, speaking of gifts, and planning ahead, I wish I could know what is going to happen for Christmas. On one hand, it could be fine. We could have a bonus and be able to sponsor a family on the board I frequent online, like we have done the past two years. We could let the kids pick names off the CASA tree at our grocery store, which they look forward to doing - shopping on Black Friday for "their" kid. I'm not concerned about what we'll get Grandparents because I know they'll understand if they just get a new picture of the kids. I'm not concerned about Godparents, they'll understand, too. But, you know who won't understand? ME!!!!

Just kidding. The kids, of course. It is SO up in the air. We've been "prepping" the kids - "Well, you know, with your behavior lately you'll be LUCKY if you get coal." But, the truth is, I don't know WHAT Christmas will bring. I don't know if we'll have another trip to Chicago for a cast before then. We very well may. I know we'll have a follow-up in four weeks, so that's nearly Thanksgiving. There's a very good chance mid to late December we'll be taking another voyage up North. So, two more trips before Christmas - it will be a challenge, Christmas aside.

Our community just got a new Borders, and, of course as part of the Grand Opening festivities they are giving away the new American Girl, Julie. My kids can't comprehend how many hundreds of children have put their names in there, and are convinced that ONE of them will win. And, to top it off, they're consoling themselves by saying things like, "That's okay - if I don't win, I'll just ask SANTA! That way you don't have to pay for it."

Ah, to be young.

Monday Morning

I am in desperate need of some retail therapy. Jack has so very little to wear (shocking, I know!) and I'm feeling bummed about the upcoming holiday season and the uncertainty of our financial state. The frequent returns, more frequent castings, have us spiraling. To top it off, our car battery died yesterday. First a new tire, then a new gold-rimmed spare (insert sarcasm), and now the battery. I don't dare ask, "What next?"

The upside of all this is that this little boy is such a gift. I typed his name today, something I do almost every day, and my heart leapt. I know that sounds contrived, but it's true. I wrote to John, "Jack has a fever," and it just happened again. Jack is such a simple word to write, but what you may not realize is that "Jack" has been in my heart and in my mind for almost a decade. I longed for a little boy, I imagined with blonde hair and blue eyes, that we would call "Jack." I longed for him for what seems like an eternity. He was my son, and was in my dreams and thoughts years before he was a reality. To have him here is surreal. Sometimes I have to step back and look at my life and I am still in awe that we have our boy. How lucky are we to have four beautiful, healthy little girls, and this sweet, sweet prince? To hear them giggle with joy, squeal with delight when he accomplishes something new. To share in our tears and heartbreak when he is hurt. He is such a blessing.

And, yes, if you caught that note earlier - he is sick - again. We are quarantining ourselves once again in preparation for casting. This is the second cold and cough he's had in the last month and it settles so deeply in his chest. I don't know if it is related to the casting or not, but he seems to get it when no one else does. We can't risk any sort of cold or respiratory illness under general anesthesia, so we'll be staying close to home. I'm sure that I will go mad from cabin fever, but he is worth every second of it.

Back to the beginning, I am in need of some retail therapy and I splurged and bought myself two new songs to listen to in the car. The monotony of the same old playlists on our ipod on the highway is enough to drive us all crazy. So, with the help of a dear friend, I found this song which I simply must share with you. Her name is Ingrid Michaelson and she is humble and cool and funky and everything indie folks should be. This tune reminds me of the poppy sounds that we were so addicted to in highschool, but with an edge of adult life. It reminds me of the newness of a relationship, with the dedication of an 11 year marriage - confirming that we are in this together, through good and bad, in sickness and in health.




And on that "note" I bid adieu.

I wish I had better news...

believe me.

I really do.

After waiting at the hospital for quite some time, the doctor came in with the x-rays they had just taken. He met our eyes with kindness, almost sympathetic kindness, and said that the cast isn't holding. (I tear up just typing that.) Jack's spine has deteriorated from 38* in the cast to 55* in the cast in seven weeks.

The day he was casted, the curve measured 64*. Again, there is always some margin of error, some variances of positioning and who does the measurements. But, this number should not be so rapidly growing. We know that he should have some sort of stabilization in the cast. We know for certain that this is not good.

We were told this cast needs to come off right away, because, basically, it's useless. It isn't even holding the correction and his back will continue to get worse in this one. Our best hope is to have this one removed and repeat the procedure ahead of schedule, in mid-October, and hope that we can get down below 30* this second time. Apparently, the doctor isn't feeling very optimistic about Jack's progress and doesn't think that casting is going to be the answer for him. He said we can continue to do this until Jack is old enough for surgery. It was obvious that if we are to see any success in the casting, it will not be this year. We now expect that he will need a new cast every 8-10 weeks and that we will be, essentially, traveling every month and this will continue for two years before we may know anything definitive.

In the meantime, we will continue because there is nothing else we can do. We are disheartened, demoralized. I was so confident going into this. I didn't even get nervous driving up there - I just KNEW they were going to say he was fine. So many people have been praying for him, I just knew he'd be okay. Those words fell upon us and the air instantly shifted.

We had no desire to be there anymore and just wanted to be back in our home. We drove back, the first two hours of which were total gridlock. We managed to travel twenty-five miles in that span of time. When we finally got home it was very late. We were physically and emotionally exhausted - the tension in the car the rest of the way home was palpable. It is so easy to blame ourselves, blame eachother when things do not go as expected.

Today, his future is uncertain once again. We are now scrambling to pay for an unexpected trip back in a short amount of time and praying for resolution.

There is no sense or justice in this.

A Heavy Heart

You might remember the other mom I met in Chicago, whose son has been casted seven times. She's been a great shoulder to lean on and has really held my hand through this process.

Her sweet little boy likely has a connective tissue disorder, that causes his spine to continue curving despite best efforts. For more than a year he's bounced back, but went down when in the cast, so it was at least stabilizing him. Well, his Mom emailed last night and he is going to have surgery after the first of the year. I'm so heartbroken for her. His curve progressed in the cast. Even though the best person for the job performed the casting, his little body just found a way to go out of alignment.

As sad as I am for them, it also burst my bubble about Jack's casting. It's been a very hard seven weeks and sometimes I wonder how we'll get through it for a year. On those days, the thing that keeps me going is the knowledge that this is better than surgery - that after this year, everything will be over and done with and he will never have to have growth rods. The difficulty of these last seven weeks has been tempered by the fact that his curve went so far down. How have I disregarded the fact that we will not see improvement, but in fact, his numbers will be worse when we go in for his follow-up on Wednesday? Ignorance is bliss.

The email also informed me that our doctor is scheduling re-castings the first week of October. Even if that date is pushed back another week for us, that's so soon. I'm not prepared for that - emotionally, financially. I check the budget every day, trying to find more wiggle room, trying to adjust our spending, cutting our grocery budget, whatever I can do to make this happen and it's beginning to be a losing battle. I had to buy Jack a new carseat because he's on the very edge of the top of his straps already. His torso is almost 16" long in the cast, when you add in the height of his shoulder straps. He has to have something taller or he'll never fit in it when he gets re-casted. So, we had to get something more accomodating, and, of course, more expensive.

I'm feeling defeated, tapped-out. I'm not myself these days. The stress is taking its toll on us, and Jack not sleeping just makes the issue even worse. Last night he bounced from the side of the cabinets onto his face, flat on the ceramic tile. I can't see him hurting anymore. This is so unfair! What could he have ever done to deserve this? He's a baby. There is no sense - no justice - in this.

Indian Summer

The Indian Summer is upon is. Or, is it? The weather was positively gorgeous this past weekend - just in time for Madison's 10th birthday party. How is it possible that I have a child who is a decade old? Where has the time gone? The kids played outside all day, relishing the 70-degree weather. We had an entire week of open windows and brisk fall air to rush through the house and push out the recirculated air conditioning we've been breathing for months.

This week we're preparing for our second trip with Jack. His follow-up appointment is six days away and while I'm anxious to see if the cast is holding his curve, I'm also very nervous. I don't know why. Really nothing to be nervous about, this visit.

Speaking of visits, will the praying group of you out there please remember Heather and Olivia next week, too. Heather is the mom who founded ISOP (Infantile Scoliosis Outreach Program) and THE reason Jack is in a cast today. Her daughter is having surgery next week and I know it's a very difficult week for them. I belive she's having VEPTR (which is like a titanium rib that expands the body's length and helps the spine to straighten). She's 9 and a sweet little girl who has been through a lifetime of HALO traction and procedures - twice in her life she has had curves over a hundred degrees.

Anyway, there's a lot of nervous energy floating around on the group and I've picked up a bit of it, too. I think it is just the reality of scheduling the next cast while we're there. Knowing he'll have to endure another bout of anesthesia, which was awful last time. Although casting is a non-surgical approach, it is not without risk and we worry every time he has exposure to radiation and anesthesia. But, we have to put it in the hands that are in control.

This week a wonderful mom I know, Allison, made Jack a little hoodie. He's so hard to dress because the cast makes his body so much wider, but if the collar is too big, it falls over the shoulders. Also, he needs a 3T in torso/length but really an 18/24 months in arms. And, pants - oh - forget about those! I can't get a pair of pants to fit on him. They all fall off. I suspect the cast being covered in duct tape makes it more slippery and that's why they all fall off. A great friend of mine is making him some custom pants and I hope I'll have a good report. Anyway, Allison's hoodie came this week and it's so cute. She did a Dia de Los Muertos embroidery on the pocket and picked out a nice bright stripe for the hood and sleeves.

Oh - and we had some fun with Piper's hair this week. I put little finger curls in it and secured them with a tiny pony before bedtime. This morning - well - I'll let you see the results.

Oh - and because the auto play thing bugs me when I read my posts, I put this one to manual play. I hate when I miss the first four or five pictures because I'm reading. Just click the |> on Madison.

Create a memory - vote for us!

You know Jones sodas? The three dollars a bottle, hyper-colored, candy-flavored varieties sold at specialty stores and Panera (that's St. Louis Bread Company to you locals)?

Well, they have the funkiest labels and have new submissions regularly. I couldn't resist uploading a few of Jack (and one of big sister Jamee). Please take a second and vote - wouldn't it be great to see his bottle out on the shelves. It's a real possibility - they have several winners every month that they print, so DO IT! :)

(We don't win anything except the celebrity of being on a Jones bottle - and maybe a submission for Jack's memory box.) I tried to keep the flavors/colors in mind - green apple is shocking green, bright blue, rootbeer, you get the idea.

Blue Bubble Gum


any flavor you like


Green Apple contendor

*our spooky halloween submission for their limited edition label ;)*
Monster Mojito, maybe


Root Beer, anyone?


Orange and Cream, perhaps?

Daddy's home again this week

more to accomplish, but we'll be back soon!

Fun with Phones

The heat has broken

Today the air smells of fall. The cornstalks aside the road are golden and crispy, crackling in the wind. The stalks were still green last week. Though summer is technically still upon us, there is a new hope on the horizon, a new season to come. I feel so much optimism today, with the 70 degree wind blowing the sheers in our living room. We drove this morning with the windows down, clearing the confinements of summer's heat, turning the radio up just a bit too loud for the stoplights. Today is the beginning of something new.

We live in the midwest, so don't get me wrong, there will be more summer. It will be hot and never-ending, just like in years past. It isn't only an Indian Summer here, it's a whole other extra "P.S. Summer" season that occurs just after that first taste of fall - when the dampness in the air causes an unbearable humidity and the pumpkin stands smell of hot straw. But not today.

Today John is home. He's had days and days of PTO saved and decided it is time to get some things in order at home. With the holiday weekend, we are going to have more than a week of uninterrupted time to unpack and organize this house. Although we've been here for four months, it still feels like we are squatting at "their" house. We don't have the time or energy to paint, but we are going to do a massive overhaul. It is time to not just find a spot to stick our things, but to create the environment of a home - our home. Our master closet tends to be a catch-all for everything, and hopefully, by the time this is all said and done, we will have a place for everything, and everything in its place.

Ain't nothin' gonna brake my stride, nobody gonna slow me down

Oh no.

Look out - trouble is all over the house!



We attempt to keep him in the pack and play as much as possible, which he likes, because if he falls in there it's padded and he can't really get hurt. However, he has taken to licking the side of it, which sends the entire family into fits of belly laughter, which Jack loves (and continues to do, over and over).



He has also started blowing kisses. He can't quite figure out what he wants to do when someone cheers for him, and while he used to respond by clapping, his cast prevented him from doing so for the first week. So, instead, he would try to clap by patting his hand on his mouth. He has since learned to clap by putting one hand upside-down and patting the other one, but still enjoys blowing some kisses to his favorite ladies (and Daddy, too).


Over the past few weeks he has been sprouting some new teeth as well. It astounds me to see the 15 of them in there - just one more on the bottom and he'll have a full set, which he loves to grit. I hope that's just a phase because it's the worst sound.



It's SO nice to see him smiling again.

Jaded

When I mentioned last week that I wanted to scream at the cashier at our grocery store, I knew I was over-reacting. I never actually would have done something like that, but today - I want to.

Last week we noticed our garbage disposal wasn't working properly. It hummed, so it was still getting electricity, but it no longer would churn. We were frustrated, only having been in this house four months, but knew it was a system covered by our home warranty. John put in the call to AHS and they referred us to a local business who worked with them.

We sat at home all day today waiting for them to come. As is usually the case in situations like this, we were given a window of about eighty-seven hours (okay, four) when they would be here. Four minutes until they were supposed to be here, they walked in. Their truck was unmarked, but in good condition and they appeared clean-cut and professional. He came in, chatted for a minute, then cleared out the area under the sink. He said that it was just one of those things - the disposal had served its duty and was out. We would need a new one - no problem.

However. (Isn't there always a "BUT" when it comes to home repairs?) However, the electrical wiring wasn't right and he'd need to run a new conduit and something else technical that we didn't understand - none of which would be covered. He told John he needed $170 right that second to start on the work. I cringed. That was a substantial amount of money to drop on us when we thought it would only be the warranty service call. We wanted to check with them, to see if what he was saying was true, since we didn't know him from Adam.

John said he was going to get the checkbook and the man told me he needed a pan to put under the sink. I was holding Jack and yelled for John - who didn't answer. The man said, "Oh - he's outside." I went and looked - not outside, not in front, not in the garage. He was getting flustered in the kitchen. He asked for a pot (there was one on the stove he motioned toward) - I laughed and said, "No offense, but I'm not using a hundred dollar Cuisinart stock pot for that! I'll find you something." He didn't find it amusing.

The man and his son started getting things settled and the boy brought in a bag of equipment. John was still MIA, but only three or four minutes had lapsed. The man kept reminding me that he needed a check - now. What was the rush? Why the hurry? I started getting very uncomfortable with him. He said he couldn't start anything until he had a check.

I went into the garage and got a galvanized tub we use for icing down drinks at parties. I found John in the basement. I asked him what he was doing (adjacent to the kitchen) and he said he was on the phone with the warranty company. The man overheard and the activity picked back up. I heard him on his walkie talkie, giving specific prices (which added up to - non-warranty - less than what we were paying WITH the warranty). His son walked past a couple times, but I didn't notice what he was doing. All of a sudden I heard the truck start up in the driveway and figured they were in there doing paperwork. I carried Jack into the kitchen and everything was gone - all our stuff put back under the sink. John was in the kitchen, I pointed it out to him and he looked perplexed, too.

By the time I walked to the front windows to see what was going on, I could only see the back of their truck going down the street. THEY LEFT! John had a check in his hand for the money and they were GONE.

We were so confused. Now I wanted to scream at someone. I called the home warranty company and was on hold, then gave an earful to the first person who answered the phone. (As an aside, I apologize to the switchboard operator and appreciate her patience in letting me get it out before she replied that she needed to transfer me.) :)

John called the repair man's cell, which was on our Caller ID, and he didn't answer. He called back - voicemail on the first ring. He left a message explaining that we had the money in hand and just wanted to see what the warranty company said when they ran out the door without an explanation. He wanted to know if they were fixing it or not.

He then called the office number we had for the repair man - clearly his wife, very confused by the whole thing as well, who suddenly put all the blame on herself for "over-booking" him and said that it was all her fault. (Um, no - it was HIS fault for running out of here without a WORD to either of us.)

We finally reached the customer service department of the warranty, who apologized and put him on our "do not call list." But, here we are, after losing an entire day of work for John and after having to face this ordeal, and the garbage disposal is still broken.

Fast forward to 3:30. The phone rings and it's the warranty company. They got a call from the repair man who said he ran out of time (??) and couldn't sit to find out if the problem was resolved, so he left - but he is still in the area if we want him to come back. COME BACK??!!

No, I don't want him to come back - EVER.

The warranty company understood, apologized (and did add that they do not cover an upgrade to the wiring, which we STILL don't even know if we need because I wouldn't trust this guy to give us an accurate/fair appraisal for a tomato much less a garbage disposal) and said, "Well, we do have the option of a cash out." Basically, they offered to give us whatever they were going to pay him for us to put toward another repair person to do the work, but that will take 24 hours to process and they'll get the estimate and send us the money.

So, that's that. Now we still have a broken disposal, but at least we can hand pick our repair man. We're going to call Julie (our realtor) and see if she knows anyone. What a NIGHTMARE. This should have been so easy and it's been anything but.