A Month To Two

It's just over a month until Jack's second birthday, and I find myself being a little weepy. And, no, not because he's my "baby" and he's growing up.

I think part of it is a release from all the stress of the last year. We thought he'd be casted for a year (coming up on the anniversary, just passed the anniversary of his diagnosis) and we'd be done. We thought, one year will suck, but then it'll be OVER.

It's not.

No end in sight.

No promise of cure.

A HUGE disappointment.

I feel angry, resentful, and flat out sad that this didn't work. I still have a glimmer of hope that I'm holding on to. But, the knowledge that this is "buying time" for our son is sick and wrong.

At a time when I would typically be a flurry of activity, planning a birthday party, I'm agonizing over the littlest things. I can hardly think about his birthday without wondering what his second year of life will be like.

I want to have a party that he'll love. I want it to be the BEST day for him. Because, frankly, he's been through more this year than is ever fair - especially for a toddler.

I know there are kids battling cancer. I know there are kids lost in accidents and drownings and all kinds of terrible tragedies. But that doesn't make this road any easier.

This year has been tumultuous, to say the least. We went from thinking he might have surgery to correct his curve, to learning the graphic details of what an internal support system would mean for him and instead turning our efforts instead toward casting.

We went from thinking this was a purely orthopaedic condition to learning that it can be life-threatening, that it can cause death in childhood. I remember reading websites about infantile scoliosis and seeing the pictures. I remember a little girl at Shriner's and I remember thinking, "Wow - she must have a lot wrong with her."

She didn't. It was just this.

I get so frustrated when people say, "Oh, yeah - my cousin/sister/aunt/daughter had that." No, they didn't. They had adolescent scoliosis and had a fighting chance. They were nearly DONE growing, not 10 months old with 17 to 18 years of battling this condition ahead of them - trying your damnedest to keep their precious internal organs from being crushed by their spine as they form and grow.

NO ONE TOLD US, EITHER!

I wonder what his childhood will look like.

I wonder if he will be outwardly different, and worry for him.

I already ache deeply when someone comments about him crawling funny or that he doesn't have good balance. Innocent comments become painful reminders that he is not the same as other two year olds.

So, today, when I should be deciding what menu to have, sending out invitations, planning a celebration of two years in his life - I am reflecting and afraid to look to the future because it is so uncertain. Sure, all of ours are. I get that. But, today I cannot decide between a farm party or his newest love, "Memo, fishy movie," because I keep wondering how many birthdays we'll have together.

Dramatic?

Maybe.

Walk a mile in my shoes.

I am strong and fight for him 95% of the time. We research until our eyes cross. We call and call and call and leave voicemails that are never returned. We drive countless hours, through storms and sun, with rising gas prices and financial strain, and sometimes, once in a while, we cry and say, "Why me? Why him?"

And, so, today, I will call the Neurofibromatosis clinic at Children's and schedule the appointment I have been dreading for weeks. Because his cast will only be off for less than a week, the week of his second birthday we will spend the day in a genetic disorders clinic finding out if the bump under the skin of is neck is a tumor. We will try to find some answers that we really don't have questions for. And, really, we don't want those either.

Determining what is best...

When I spoke with the doctor's assistant in the Salt Lake, something she said stuck in my mind. It was one of those passing comments that don't really hit you right away, but has a slow burn that builds over time. We took some time to consider all the factors, listening to the things other trusted friends and family have said, and made the decision not to go to Salt Lake.

Basically, his assistant said that Dr. D is trained in the same method as Dr. K and wouldn't really have anything else to offer. (Which we knew). And, the more I talk to the other B'ham girls, the more I realize that the things he's done to change the cast aren't impacting the results. Dr. K in b'ham has "cured" other kids with these casts, too. He's been doing this for years, and trusts our input as well. We love him, his staff, the hospital, the area. We know this system. It has served us well.

Dr. D, great as he may be, would end up costing us significantly more money in travel, though the care would be free. However, we always run the risk of hitting another vax snag like in Chicago. But, the travel would be awful. They want us there early in the AM for a clinic appointment, so we'd have to fly out and stay overnight an extra day. Then, the clinic day and another overnight. Then casting day they require you to stay and come back to the clinic the next day for any trimming. So, three nights, four very long days. That's a huge problem for us, particularly in regard to leaving the girls for that long (and bringing them is so insanely cost-prohibitive.)

We also found out that when Miss Mehta comes to Salt Lake, she's not actually casting any of the kids - she's just going to be there as a guest. So, that's out.

And - over the last month we've been appealing the decision to have Dr. K (b'ham) considered in network and JUST got that approved. So, now our cost of going to B'ham is considerably less since the casting won't be out of pocket there.

John added a very valid point - he likes the control of going to Birmingham. It's our car, our decision if we need to stop or go on (transportation-wise), we know where the restaurants are and where the hotels are that we like. We're finally learning our way around. We love the staff there. We know how the process goes. They pad the cast the way we like. No standing in line at airport security trying to comfort a cranky or sleepy post-anesthesia baby. No rushing to return a rental car, navigating the return desk, the shuttles to the airport with bags and a stroller and car seat and aforementioned cranky post-anesthesia baby in tow.

Flying with him post-anesthesia might be hard, particularly. OR changes happen all the time and casts are outgrown all the time. Even if we COULD afford a cheap southwest flight (right now they're $385 per person, round trip X 3) and three nights in a hotel and four days of meals - which, really, that's pushing it, financially - if we had to change a flight at the last minute, we'd have to upgrade to a full fare for all three of us. It would be a LOT more if we had a schedule change.

And, if we need to get to Birmingham, it's a matter of just getting in the car and driving there in one day. OR times change. We got bumped and flipped more than once in the Shriners network. Communication can be difficult, delayed, and sometimes nonexistant (we were supposed to have been called back "tomorrow" countless times - including this last week when, once again, we never heard back. That's not adequate care, in my opinion. When you have a child with ANY medical issue, you need answers as quickly as possible. If someone takes three, four, six weeks to get back to you after repeated voicemails - that's not right.)

Basically, the way DH put it - it's a lot of extra expense, stress, travel, and inconvenience - and for what? Is there any true added benefit? It IS essentially the same treatment. (Talking with the other Birmingham casting families has confirmed this for me - that he HAS done over the shoulder casts and WOULD if we really wanted it - he's doing them on a casting-friend's son right now.)

I just kind of feel like I wanted this so badly, but now - thanks, but no thanks. Dr. K doesn't think that this is the end of casting for Jack anymore - he's willing to keep on trucking, he's still getting results and correction - and it's not like Dr. D feels so confident in Jack's case that he could do anything better for us. So, I think we'll stay with the team we've come to know and care for, who hopefully feels the same way about us.

A Plea for Airline Miles/Reward Credits

UPDATE******** CHANGE OF PLANS - SEE JUNE 23 POST ***********

Because we're going to Salt Lake!!!!!!!!!!!!!!!!!

We were floored - positively shocked - to get the approval letter yesterday. Salt Lake City is home to THE most experienced early intervention doctor. We are so blessed to be invited to his practice.

While there are charity organizations like Angel Flights that transport patients, they only allow for one parent to accompany the child. I'm sure you can understand the concern with having your child undergoing medical treatment and not being able to both be there should something arise. Also, these planes are often small, seating only two people and their luggage. One such flight was in the news this week when it crashed, killing a two year old obtaining a similar treatment on her legs at an out of state hospital.

While we are blessed to typically have the means to be able to pay for a Southwest flight, there are huge penalties when a flight is changed at the last minute. Many times we cannot book the flight until we know that the OR date is firm, sometimes even not knowing if he will outgrow a cast until the week it is suddenly too small. Also, if he has an anesthesia reaction, we may be required to stay an additional day in the hospital. Missing a flight like that would require us to upgrade a flight to premium, costing upwards of $600 - $800 for the change. Also, while Jackson can technically fly free until his birthday, that is next month. So, we will need 3 seats per visit, round trip.

Flying to and from Salt Lake, thankfully, is a plentiful thing on airlines such as American and Southwest. Southwest's Rapid Rewards flights are transferrable and there are no penalties. They can be booked on any flight, there are no blackouts or restrictions, and we can change the flight up to the day of.

These are precious to us and provide far more than the worth of the flight. I know some of you may not travel often, but for those who do - would you please consider signing up for a free Rapid Rewards account and flying Southwest? It will save your company/client money because the flights are so much more affordable, and you can obtain a free flight just by taking 8 round trips.

Similarly, if anyone has existing reward flights or even miles from another carrier, those would be so greatly appreciated. As Jackson turns two, and his spine becomes less flexible and his growth slows, we are coming upon a very difficult time where every day, every cast is precious. Each one must be applied at the very best, most experienced facility, by the most experienced person or we risk not only not having correction, but also having him regress further like he has. This is buying our child valuable time to grow and have his heart and lungs function properly - it is literally adding years to his life.

Please let us know if there is anything you are able to do. We are also always in need of hotel room loyalty points/rewards. Ronald McDonald House is a fantastic charity, but they cannot guarantee a room. They put you on a waiting list and will let you know if a bed is available the day of your visit. Naturally, we cannot wait until that day to know if there will be a place to sleep, so we have to book rooms regardless, and, again, there are penalties for last minute changes and cancellations.

And, always, thank you for your continued prayers and thoughts along this ever-changing journey.

Excrutiating

Screaming the second he's in the car - this spot will just NOT heal.

Five

didn't hold.

Started at 36° - down to 28° (he said it wasn't 30 after all).

When we got down there, he was up to 44° and he could only get him down to 29°.

The removal of cast five

We aren't sure there are any good results from this one. In fact, his ribs look worse.

There's also something else we're a little concerned about, but we are going to talk to the doctor and see what he says before I go into too much here. We'll be back by Friday.

Take a minute

and read this, if you can. I found it while searching for information about the Salt Lake doctor you'll hear referenced in my next post. It gave me more information than I previously had about Jack's prognosis and condition - and I hope it will do the same for you.

Rare scoliosis procedure gives tot new hope

By Debra Melani
Denver Rocky Mountain News Staff Writer


When Olivia Noel Sorensen turns 3 on Christmas Eve, her mother will be
celebrating the life of her daughter, a happy and rambunctious little
girl whose fate looked grim a few months ago.

But thanks to her mother's determination, Olivia is likely to
celebrate many more birthdays, as are at least six other children
whose parents heard of the Denver residents' story.

Because Heather Hyatt refused to follow doctors' orders in treating
daughter Olivia's severe scoliosis, a procedure that's common in
France but not in the United States is now being offered at Shriners
Hospital in Salt Lake City. For families like Olivia's, it could be
the answer to a prayer.

"If it's successful, it brings up an alternative way of treating
infantile (up to 3 years) and juvenile (4 to 10 years) scoliosis,
because right now we really don't have a good way," said one of
Olivia's Denver spine surgeons, Dr. Courtney Brown.

Doctors had told Hyatt that the best thing to do for Olivia was to
keep her in a brace and "hope for the best."

But Hyatt didn't feel like just hoping.

"That's when I began researching," she said in a telephone interview
from Olivia's hospital room. After nearly three months in Utah,
Hyatt's goal is to bring her little girl home by Christmas.

Hyatt, a single mother, went on a quest to find a viable alternative
to what she believed — and doctors agreed — was a death sentence.

Olivia's infantile scoliosis, a condition rarer than its adolescent
cousin (11 years and older) but often much more virulent, had
contorted her spine to a 96-degree angle by the time she made it to
Shriners Hospital. Hyatt watched helplessly as a growing back hump
continued to disfigure her baby.

She found little information on the Internet but received a list of
about 10 doctors in Colorado who were associated with the National
Scoliosis Foundation. She began visiting each one and sending Olivia's
X-rays to prestigious medical institutions across the country. They
all stuck by her Denver doctors' suggestion.

Then Hyatt went to Dr. Cathleen Van Buskirk, a spine surgeon in
Boulder. That was her turning point.

"She was the only one who recommended a serial corrective plaster
cast," Hyatt said. Van Buskirk suggested a treatment done in France by
Dr. Jean Dubousset, a renowned expert in the field who Van Buskirk
said has probably seen more severe cases like Olivia's than has anyone
else in the world.

Scoliosis is much more common in Europe, possibly for genetic reasons,
said Dr. Jacques D'Astous, the Shriners Hospital doctor who treated
Olivia. He, like Van Buskirk, trained under Dubousset.

"Cases we see in this country are often people of European descent,"
he said. D'Astous said there is speculation that rates are falling in
the United States because of the campaign to place infants on their
backs to prevent sudden infant death syndrome. But many forms of
scoliosis, Olivia's included, have no known cause.

Hyatt took Van Buskirk's recommendation to her Denver doctors, who
refused to perform the treatment, some even calling it "barbaric," she
said. The procedure requires the children to be put in a turnbuckle
body cast and a "halo" bolted with eight screws to their heads.
Weights are then attached and slowly increased to gradually straighten
the spine.

Despite the doctors' negative reaction, Hyatt pressed on. "She was
already getting a huge rib hump," she said of Olivia. "It was mangling
her ribs."

To prevent the spine from killing Olivia by crushing her lungs or
heart, Hyatt said, drastic measures, such as fusing her spine, would
have been the ultimate course. "I refused to take that for an answer,"
she said, explaining that fusion would have shortened Olivia's life.
Her 2-year-old trunk would have stopped growing, leaving no room for
her organs.

"Those who are saying that this is barbaric in this day and age don't
understand what the basic problem is," Brown said.

Van Buskirk agrees. "After a curve becomes 90 degrees is when we start
seeing severe cardiopulmonary complications," she said. "I can't
predict how long she would have lived, but she would have died in her
childhood years."

Doctors want to control curvatures until children are at least 10 or
11, Brown said. Then the spine can be fused, "and you have a much
better chance at having a relatively normal child," he said.

Hyatt's persistence — combined with a little luck — paid off. She
tried for months to get a response from Dubousset. After resorting to
sending her pleas with Olivia's records to his home in France, he
answered.

"We were ready to move to France," Hyatt said, explaining that she had
friends in Europe who were going to help her find a home for medically
needy kids. Then she learned from D'Astous in Utah that Dubousset
would be visiting Shriners to receive a lifetime achievement award
before retiring.

Hyatt and Olivia were there waiting.

At Hyatt's urging, D'Astous persuaded Dubousset to evaluate Olivia.

"He came in and picked Olivia up by her head," Hyatt said. A
translator told Hyatt that Dubousset was worried Olivia was too young
to emotionally tolerate the procedure, but her condition was so severe
that something had to be done.

Speaking through the translator, Dubousset told Hyatt: "What your
daughter has is the hardest thing to treat in the orthopedic world.
That's why I took this on. Instead of crying, you need to fight this
disease every day for your daughter and never give up."

Dubousset agreed to train D'Astous and advise him over the phone from France.

Hyatt had learned from friends of a 3-year-old girl in Grand Junction
whose condition was almost as severe as Olivia's. She contacted the
mother, and that girl and Olivia soon were paving the way for other
children whose futures were equally precarious.

It wasn't easy.

"The first week was probably the roughest week of my life," Hyatt
said. "I was questioning myself, thinking: 'What am I doing? I hope I
don't kill my child."'

Because Olivia was too young to understand and would be too
frightened, she had to be put under general anesthesia, D'Astous said.
For older children, local anesthesia can be used to bolt in the halo
and apply the cast, which encases all but the arms and legs.

When Olivia awoke, she was confused and in severe pain.

"She was on morphine," Hyatt said. "The first week is a blur."

But she said she'll never forget her daughter's eyes full of fear.

"She'd say, 'What are you doing to me, Mommy?"'

With 11 pounds of weight hanging from her head, Olivia had to have a
supportive wheelchair or walker with her wherever she went.

But Shriners — a philanthropic, 22-hospital organization that treats
burn and orthopedic child patients for free — makes the families feel
at home, Hyatt said. Every day, there are activities for children,
including visits from traveling pets and sports stars.

After the first week, Olivia — and her Grand Junction cohort, Breann
Blackman — rebounded.

"I think they did awesome," D'Astous said. "I think the girls adapted
remarkably well."

Moreover, their spines responded. Olivia's 96-degree curve decreased
to a livable 45 degrees. "Basically, you are buying time for them,"
D'Astous said.

The girls have a daunting road ahead. They will be in and out of body
casts and braces for years. And they could face treatment again if
their spines revert to dangerous degrees.

In Olivia's case, that's likely to happen in one to three years. At
that point, it will be up to Hyatt to decide between another cast
procedure and seeking other experimental treatment.

The goal is to get her to at least age 10, when a spinal fusion could
be done with a better likelihood of giving her a relatively normal
life.

Not every child with severe scoliosis will get this procedure. Given
the treatment length and the intense medical supervision and
aggressive respiratory therapy needed, the cast procedure isn't likely
to be widely offered in the United States, Brown said.

"The reality is that nowhere in the country, except for a
Shriners-type environment, could this be done," he said.

Van Buskirk concurs: "The insurance companies wouldn't allow us to
keep children in the hospital for that length of time."

Other experimental procedures for children like Olivia are available,
but all require surgery. One such treatment Olivia might later undergo
involves implanting a titanium rod to help maintain the spine.

But D'Astous said French studies indicate that the results of the
procedure that Olivia underwent are far superior to any other
experimental treatment.

Once he sees how the girls do now that they've been placed in braces
to maintain the correction, D'Astous will probably encourage his
colleagues at Shriners hospitals to consider the treatment, he said.
He has already received six requests as a result of publicity
generated in Utah, and he plans to grant some of those requests, he
said.

"Right now things are looking very encouraging," he said.

Hyatt said it's gratifying to know she had a hand in making this
treatment available for other children, and she suspects she and
Olivia will have a special Christmas with a much-deserved rest.

"To know that there are going to be other kids now is the best feeling
in the world," she said. "Olivia went through a lot. And so did I."

Meeting Dr. D tomorrow

I've been pushing this out of my head time and time again, but it's really hit me this afternoon. We meet the new doctor (local) tomorrow at 9 AM to discuss bracing and, basically, Jack's future. This is a decision that will impact him for the rest of his life and I'm so nervous about making the wrong choice.

The head of the Infantile Scoliosis Outreach Program thinks Jack could still benefit from casting. The doctor doesn't. Hard to hear that and not know what to do and where to go, yk?

I have this nagging in the back of my mind that this has worked up until now and could continue to work. But, who am I to say?

As much as I want to chop this stupid cast off him and never look back, once we stop casting, that's it - no real chance of improvement and he'll have to live with this for as long as he's growing - until surgery/surgeries are an option. So, that weighs heavily on my mind. I want this to bring him down to a 0. I want a cure, damnit. We've done everything right - everything they said. We've driven miles and miles, dealt with no sleep, had countless NPO nights, and I'm just sick that it's the end of the road. Nine and a half months of this crap. I want to be finished - but I want him to be healed and whole and well.

Anyway - that's my state this afternoon. I'll update tomorrow as soon as I know what the new doctor thinks. He's doing an official training symposium here (like the one we attended when Jack was first casted) - and I should be thrilled that Jack's curve is not in vain - that we've done something good for our community by advocating for this and bringing it to St. Louis. But, really, I want to be selfish for Jack today and just say it's not fair.

Cast #5

Note: If you are on the board, please forgive me for restating what I posted in Sisters. I'm still just utterly exhausted and don't have the mental energy to re-hash all of this. I'm just going to cut and paste the post from there below.




Since we managed to talk them out of a clinic appointment first, we left around 8:30 on Tuesday. We took our time getting to Birmingham, and before we left, I GoogleMapped directions to the Irondale Cafe (the "Whistle Stop Cafe" that is the root of the movie Fried Green Tomatoes). We went there directly, and had a great dinner. Jack FLIPPED over the trains and kept signing "train" and saying "choo choo." It was the highlight of our trip, for sure.

We checked into the hotel and ran to SuperTarget for some provisions. I always try to get him to eat as much as humanly possible before he is NPO at midnight. He refused the apples, refused the banana, ate a handful of cereal - just nothing of substance. He nursed twice and went to sleep. I waited up until midnight (one trip in Chicago, I MISSED his last nursing and it was awful - engorged, leaking, you name it). We were pretty amped up and couldn't fall asleep in the hotel.

He woke up at 1:30 and screamed. And screamed. And screamed. He thrashed around, hitting his head against the headboard, and screamed louder. He signed "milk" and "please" and said, "pees?" over and over again. I wanted to cry. I quietly reminded him that we had a cast tomorrow and no milky, but he wasn't having it. He finally passed out again 45 minutes later, only to wake up and do the same thing at 3. I don't think we slept again. John finally got up with him at 4:30 - glad to know that once we were up, the night was over. I got up at 5 and got dressed and we headed out the door - running on nothing but adrenaline.

We got to the hospital and the check-in waiting room was already full. We were ten minutes late, but I could have cared less at that point. Jack did well once we got there, except for the times when someone would come into the room. The DVD player in the room was broken, so he couldn't watch his movies. I swear it was 90° in the hospital, too. We were sooo tired. Went through the anesthesia screening, then the history, yadda yadda. By 7 they gave him the versed and it seemed to work this time. In Chicago he almost falls asleep, but in Birmingham, we have to carry him down to the OR and pass him off. So, he's hysterical every time, no matter what. Dad took him this time.

One person has to remain in the room at all times, so when John got back he went to the cafeteria to get us some food (we don't eat when Jack can't eat). I scarfed a bagel and we waited about a half hour until Dr. K came in.

He showed us the out of cast x-rays from cast 4. This is the starting point. The last cast had only corrected 2°. He went from 38° out of cast to 22° in cast - and once that was removed, he was back up to 36°. Defeat.

He said the spine is very rigid. When he presses on the apex of the curve, he can usually straighten it. However, in Jack's case, he cannot. He presses on that C and the WHOLE spine shifts over. Obviously, this could create a compensatory curve above and below it and royally screw up his back. So, he did what he could, but isn't very optimistic. I still don't have Cast #5's in-cast numbers.

After this cast, he will do x-rays and see where we are. If he hasn't gotten much correction (below that 36° number) we will move into a brace - that means it is all he can correct by casting and his spine is too rigid and his growth has slowed too much to achieve any more correction.

We've know this was a possibility. But, hearing that it's here already is a bit of a shock. We thought we'd get down to the 20s at most. However, we are looking at a 50% correction. That's huge. He is no longer a "surgical curve" - that's huge. But, 36° is huge, too.

Next appointment is at the end of May. We will go down for a clinic visit and get x-rays and the brace guy will be there, too, just in case. If we HAVE seen correction, we will do another cast at 6AM the next morning. If there isn't any correction (or not significant) we will move into a brace.

His surgeon uses Providence braces, which are more aggressive and push against the curve in the opposite direction. They cannot be worn during the day because you can't stand in them, we were told, but they work much better. And, he would have the chance to strengthen those trunk muscles during the day, which would be fantastic. However, he also has a chance of relapse. The rapid period of growth slows significantly between 2-5, and virtually stops from 5-10. He said you can breathe easier between 5-10. However, DH is 6'10" and grew steadily from like 3rd grade until college. We are going to have to watch Jack closely.

So, lots of mixed feelings right now - we would be thrilled to not see another cast. We would only have to go to Birmingham once a year for brace checks. That's good. But, no monitoring scares me. Not getting below 36° concerns me.

UPDATE:
While I was uploading pictures from our trip, I got an email from T in Dr. K's office. The in-cast number was only 30°. Clearly his spine has become significantly more rigid since the last cast went down to 22°. She gave us the name and number of a local orthotist who does Providence Braces here in Webster. We are still welcome to go down there for bracing, but she suggested that since we will have a lifetime of commitment with brace checks and growth adjustments, she suggested we may want to stay with someone local. We are going to take some time to process all of that and try to make a decision.

Some happy things to end this with - pictures.

A Castastrophe

This morning was a leaky diaper blowout once again. If you recall, this happened early in Cast #4 during the plague of stomach virus and flu. At that time, I used my mad casting diaper skillz to pull the shirt down, cut out the offended tee, and re-tape.

Fast forward to this morning - not only has all the excess tee been used, I cannot get so much as a pinky up the back of his cast because it is so tight. Every time we try to use a wipe to clean it up, he screams. By mid-morning, it was obvious that this was not going to do - if the - um - waste product remained on his skin, he would have an open sore in no time. We called T at Dr. K's office and left a message, then emailed her photos of the tightness of the cast in addition.

Then, I made the executive decision that this cast was coming off NOW. If we had to deal with bounceback from him being out of the cast, we'd deal. We had no other options at this point. So, we called the hospital and they cut it off at 1:30 for us. WHEW - good thing, too! It was baaad under there - far worse than we could see.

And, now, without further ado, the unwrapped present that is my son's spine...

A Beautiful (albeit Bizarre!) Easter

We had an awesome time with a small family gathering today - lots of yummy food, too many of my Grandma's best-in-the-world deviled eggs, and the most heavenly dessert from my Aunt. And, would you believe - SNOW?!

It was great just sitting around, talking, and listening to stories. That's a past time that we don't make time for often enough in this day and age. It reminds me of backyard barbecues, with the boisterous laughter of generations gone by.

Today was a sign that the tide is turning. Nothing went wrong, nothing was in crisis, no major problems, just good food, and good friends. We are blessed to be surrounded by loved ones and are so grateful for their time with us. Not only did they come and spend their afternoon and evening with us, they spent time hiding eggs, collecting eggs, making desserts and side dishes, driving a long way to sit and chat, and entertaining our kids. They brought laughter and joy (and a carpet cleaner!!!!) to a home that has been rather tumultuous this past week, and for that, I am grateful. The memories, and house, are fresh and life is good.

Happy Easter.

Should've built an ark...

Torrential rain

Rain. Lots and lots of rain.

Sump pump malfunctions.

Sump pump back up malfunctions.

Sump pump alarm malfunctions.

8 hours to fix with remote pump.

Basement play room.

Basement family room.

Basement office.

Basement full bath.

Basement utility room.

Carpet, pad - soaked. Entire room. Water pooled behind baseboards.

Bad. Very, very bad.

Not covered by insurance - priceless.

A Foodie's Baby

Who would have thought that a foodie would have a child who didn't eat. Do you know how difficult that is?

Jack's solid efforts have backslid yet again. Sometimes we don't see it immediately. I think the stomach virus last month is the original culprit, but we know that solids are just not something he enjoys eating. A bite of banana here, a piece of cereal there - but no real meals, no real food.

He's been nightwaking terribly lately, and while I know that the second molars are part of the problem, a friend suggested that perhaps he's just genuinely hungry. So, we set out last night to find some kind of beverage to boost his calories during the day. There are so many issues tied to his eating. For the last 9 months, he has been denied the opportunity to eat with some regularity. I think the impact of that, psychologically, has played a huge role in his feeding issues. In addition, the cast is against his belly at all times. Surely drinking the most readily digested thing on earth is far more comfortable than eating, and perhaps he's just learned that at an early age.

So, we are continuing to offer a variety of foods, and I will continue to make him plates of food (just to throw them away a half hour later), and I will continue to stay neutral on the issue when inside I am pleading and begging.

Groundbreaking case in autism/vaccine link

http://www.cnn.com/2008/HEALTH/03/05/autism.vaccines.ap/index.html

Although some slight misinformation was given (the thimerosol link isn't the only one - there are still heavy metals in vaccines that react in the body the same way and even though it's not allowed as an ingredient anymore in pediatric vaccines - yet - there is no link???? How does that make sense? We're not allowing it, but it's perfectly safe? Huh. Reaaally. It IS still in stockpiled vaccines and is still regularly distributed to our children.) It is STILL a fantastic advance on the vaccine/autism front. As I've said time and time again, I believe there is something far more complex than just this one particular ingredient, but that it plays a huge role. We don't know if it's toxicity, assault on an immature immune system, ingredients, dosages, or what - but we DO know there is a link between autism rates and vaccines and we're glad to hear that the courts are beginning to agree.

Diaper Changing in the cast

for the CAST moms

Does anyone have a rental house at Gulf Shores?

Condo?

Time share?


Bueller??

Thought I'd ask here first :)

Jack Sign

Jack has started watching Signing Time movies and really picking up on the signs in them. Here are just a few that he's learned this week, and his new word!!!

Cast Redo

Once again, the tummy bug has landed in our house.

Jack threw up for two days and now has the second phase of this virus, apparently. Yesterday we woke up to a horrific leaking diaper, having already been soaked from sleeping at night, it went out the front, back, and legs. His cast tee was soaked - under the tape and everything!!! Panic ensued. John changed him and then we went to work trying to clean it. We thought we'd been successful until the afternoon when I kept noticing he smelled sour. Having the most sensitive nose in the group, I thought maybe it was just me. But, I finally went to change him and decided something was off and I needed to investigate.

I started un-taping the cast and could not believe how bad it was. Soaked through the tee shirt, into the cotton padding, and UNDER the tape from the inside! I had to remove the entire bottom part of the cast's taping, the cotton underneath, and CUT OFF the shirt! It was that bad. Luckily, after four casts being padded and taped, I kind of knew what I was doing. This new hy-tape that they use in Birmingham is awful. It's SUPER sticky, but rolls at the edges. The colored duct tape we were using, per Chicago's cast tech's recommendation, worked so much better. But, I didn't want Jack to be mis-matched, so I went to work with the salmon colored hy-tape. I used the whole roll to re-do just the bottom. The new shirts are grey and supposedly anti-microbial, but the fibers are so much more rough and abrasive. I'm going to ask if we can get the old kind. It doesn't really make a difference in "odor" that I've found. But, the weave is much further apart and it makes for a less-soft interior. I noticed a spot at the top didn't look right, took it off and it was a HUGE JUMBLED MESS! The tape had, apparently, gotten stuck to itself, so they just taped right over it. No wonder this cast looked so wonky to me. So, I taped over that and tried to get it smoothed out.

Then, I did the underarms again. Poor baby! They were SO red and raw under his arms, and that's such a sensitive place. I pulled the shirt out and it was totally discolored - I assume from the raw skin weeping underneath! :( Poor boy!!! I pulled that part out, cut it off, and saw that this hy-tape had left adhesive and must've been repositioned underneath there when it was too close to the skin - so there was white sticky stuff against his skin this whole time!!!! No wonder it was irritated. Much to his dismay, I stuck a piece of moleskin underneath by carefully shifting his body to one side and laying him on his side. It hurt for a bit, but I think now he'll be much more comfortable.

I'm just so frustrated with this cast taping and SO SICK of stomach bugs. I was ready to go get the whole thing cut off last night and just move to a brace with a local doctor. But, I know this is important and we'll keep it up. I just hate that he (and we) have to go through this some days. It's just not fair! He shouldn't have to deal with a tummy bug AND a cast. :( Yuck!

An important note about car seat safety...

If you know me, you know I'm passionate about a few things. Okay, more than a few. Maybe you've noticed that even my 8 year old is in a booster. Maybe you've wondered why Jae is in a harnessed carseat at 6. And maybe you've chalked Jack rear-facing up to the fact that we're just too exhausted with five kids to find the time to turn him around.

Maybe not.

Maybe you know this information already, and if so, bravo! It's definitely not common knowledge and most organizations are on a crusade just to get kids in carseats during the bare minimum amount of time. I can't say I blame them. Very few things make my blood boil like seeing an unrestrained child in a car. I think it should be punishable, by law, as parental negligence or endangering the life of a child.

Several years ago my Mother-in-Law lost slid at a slick highway exit ramp while approaching a red light. My daughter was a toddler and rear-facing at the time, but I still cradled around her body in an attempt to absorb the impact. I was so concerned with her safety, and so relieved when she didn't even seem to wake up after the accident, that it took a moment to process what I was seeing ahead of us. I watched as no less than seven people - four of whom were infants or toddlers - piled out of the back seat of the vehicle we had just hit. Not only were none of them in seat belts, not one was in a car seat! They ran off through the trees to get away before the police arrived on the scene, to avoid being ticketed. They were so lucky that night!! I hope that was enough to scare them into using child safety restraints, but something tells me it didn't change a thing.

In our state, the law is 8 and 80 - eight years, 80 pounds. In other states, it's less. To me, the fact that ANY state things 8 and 80 is the bare minimum is enough. It tells me that I had better look into the why.

Over the last few years, more data has come out on child seat safety. I KNOW this information is new to plenty of people. I do not hold it against you for not knowing. I'm here to give you the information, and let you make your own decision based on the statistics, the facts, the videos.

I know that car seats were hardly even used when I was a child. I have a picture of me, sitting next to some huge black vinyl contraption - and pictures of me in a pumpkin seat, ready to go out into the car. Today's roads are different. Cars go faster. Highways are more plentiful. Drivers are under the influence more. Sadly, it is often trial and fatal error that changes things like the aforementioned age and weight minimums. While some accidents are unpreventable, and no safety seat will prevent all injury, all the time, I thought I'd take this time to explain why we feel so strongly about having our little girls in harnessed, latched seats and having our little guy in a rear-facing seat still at 19 months.

When Jack's torso height exceeded the space that was considered safe in his Britax Boulevard seat (due to being casted over the shoulders) we were very limited in our options. Even the hospital couldn't find a seat that would work for us. However, an angel of a friend (thank you, sweet H) helped us purchase a new seat for Jackson that would safely allow him to be harnessed at the proper height, while remaining rear facing. Every time we drive, much less take an 8 hour road trip to his doctor appointments, I am so touched by her kindness and generosity during a difficult time. Someday, when all this is a memory, we will pay it forward tenfold.

Here is Jack in his Radian80 car seat with plenty of leg room, even though he is off the charts for height. (Hmm. Where'd he get that?) The outfit he is wearing is a 3T, for reference.





Watch the videos. Even if you don't have a child, you may one day - or you may have someone else's child in your car. The crash test footage speaks for itself.






It is also very common that people put small children in a seatbelt - or even a low-back belt positioning booster. Why is Jae in a five point harnessed seat? Because of Kyle. Literally, because of Kyle. I saw this video and we ordered a seat for her the same day. I promised to do all I could to help Kyle's Mom find some comfort, to know that her son's tragic death was not in vain. I had no idea. No clue whatsoever that seat belts fail this way. I had Jae in a high back Britax booster with side impact protection - the best! So did she. It wasn't the best. There are safer ways.



http://www.car-safety.org/rearface.html
Rear-facing is safest for both adults and children, but especially for babies, who would face a greater risk of spinal cord injury in a front-facing carseat during a frontal crash.

Rear-facing car seats spread frontal crash forces over the whole area of a baby's back, head and neck; they also prevent the head from snapping relative to the body in a frontal crash.

Rear-facing carseats may not be quite as effective in a rear end crash, but severe frontal and frontal offset crashes are far more frequent and far more severe than severe rear end crashes.

Rear-facing carseats are NOT a safety risk just because a baby's legs are bent at the knees or because they can touch/kick the vehicle seat.

Rear-facing as long as possible is the recommendation of the American Academy of Pediatricians, and can reduce injuries and deaths. Motor Vehicle Crashes are the #1 overall cause of death for children 14 and under.



MSNBC article
http://www.msnbc.msn.com/id/9916868

His study, presented at a recent meeting of the American Academy of Pediatrics, involved 870 children under age 2 who had been in either rear-facing or forward-facing car seats at the time of an automobile accident. He found that the children in forward-facing seats were more than four times as likely to be injured in side crashes as opposed to the children in rear-facing seats. The study also found a small but not statistically significant benefit for facing rear in frontal crashes.


http://www.cpsafety.com/articles/StayRearFacing.aspx


American Academy of Pediatrics states: If a car safety seat accommodates children rear facing to higher weights, for optimal protection, the child should remain rear facing until reaching the maximum weight for the car safety seat, as long as the top of the head is below the top of the seat back.3

http://www.carseatsite.com/rear-face_article.htm

WARNING: GRAPHIC....but necessary

Rather it is the rigidity of the BONES in the neck, in combination with the connecting ligaments, that determines whether the spine will hold together and the spinal cord will remain intact within the confines of the vertebral column. This works for adults, but very young children have immature and incompletely ossified bones that are soft and will deform and/or
separate under tension, leaving the spinal cord as the last link between the head and the torso. Have you ever pulled an electric cord from the socket by the cord instead of the plug and broken the wires? Same problem. This scenario is based on actual physiological measures. According to Huelke et al,1 "In autopsy specimens the elastic infantile vertebral bodies and ligaments allow for column elongation of up to two inches, but the spinal cord ruptures if stretched more than 1/4 inch." Real accident experience has also shown that a young child's skull can be literally ripped from its spine by the force of a crash. Yes, the body is being held in place, but the head is not. When a child is facing rearward, the head is cradled and moves in unison with the body, so that there is little or no relative motion that might pull on the connecting neck.



Keep your babies safe. We love them, too!

Busy Bee

It's been a busy month here at our hive - John will no doubt hate that analogy, what with his fear of bees and all.

Because we homeschool (or maybe that's just an excuse) I try to really go all out for the little holidays, too. Valentine's Day is, contrary to popular belief, NOT just a "Hallmark Holiday." It is the feast of St. Valentine! No, we don't reserve that day for the only expression of love year round, and no we don't feel the need to spend sixty two dollars on a dozen roses just because the florists say it's a rose day. It's one of those fun days when we can go a little beyond the call of duty and have some fun things to do. The kids woke up to a decked out table, which I learned the night before was, "The best part of Valentine's Day." (Whew! Good thing I had already planned the table!)

We also had a "do - over" for the girls' birthdays. Sky's was back in December, but an early December cast meant we weren't going to risk getting sick and then we DID get sick and missed Christmas as well. January was supposed to be the second attempt for Sky and an early birthday for Jameson, but then we all got the flu! So, we finally were able to bring out the party supplies this past weekend and had a very nice family gathering. It was great seeing those who could make it, and we hope we can catch up with the rest of you soon at Easter!

Let's see - what's new with Jack? Wild man insists on climbing up on EVERYTHING now. Last night he grabbed John by the finger and led him into the kitchen, pointed at the stove where I was plating up dinner, and then walked over into the dining room and pointed to his highchair! Not only is he EATING - he's enjoying it!! I wish I could say the same for clothing and coats. It was 18° outside today and this child is convinced that a jacket on his body will melt him, I think. Oh - speaking of clothes - he got his first pair of big boy shoes!!! We are firm believers in soft soled shoes for kids with developing legs and feet, but his Pedoodles boots just aren't quite up to wet ground in the backyard. Since that seems to be his favorite place, we decided it was time to get a pair of soft rubber soled shoes. The first pair were stride rites - a size 6.5!!!! But, he refused to walk in them at Laurie's, startled by the sound of the helium machine (which sounded exactly like the cast saw). So, we took them home and sure enough, he did a zombie walk and fell over, crying. The next day we took them back and got some lovely eccos and now he's super stylin' in his big boy shoes that he will even sleep in, if I let him. Yay! They're nice and flexible and still good on the concrete. This one is going to keep us on our toes this spring when the weather finally warms up!

Without further ado - the month in pictures (sorry for the yellow cast - low lighting inside and I'm not feeling up to photo editing for color right now - I suspect I have gallstones, so bear with me for a bit).