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.

More frustration

We have hit day 6 and my psyche is miserable the last two days.

I hesitated to put this out there but I just needed to rationalize it and talk it out.

I'm feeling very sensitive lately. Today I'm kind of weepy. I had a lot of trouble falling asleep last night and I'm so touched-out at the end of the day I just want to go and hide somewhere. In the morning, I want to sleep - forever - I mean, just sleep and sleep. I hate work days. I hate that John has to leave and that I'm here all day having all the energy sucked out of me. I feel so drained even at the beginning of the day.

The olders are feeling the stress - picking it up from me, feeling their own, who knows. But, their behavior is deplorable. The house is in total chaos - both emotionally and physically. We scrambled to clean last night and when my Dad left it was so apparent that we are in over our heads. The girls' room was disgusting - they insist on shredding paper - ripping it and scattering it everywhere. I took away their toys months ago, except for a few prized things, and it's STILL A MESS.

It takes all our energy and effort just to stay on top of the current clutter and messes - and even then we fail. We'll never get closets cleaned out or things unpacked. I want to run away from all the bins and boxes and cubes.

No one listens to me. They stare at me like I've got four heads. The oldest will not read to save her life - despite the fact that it's a crucial part of our homeschooling. I'm so tired of all the destruction of things - nothing can be kept nice, I swear.

I don't know how we'll get through a year of this. Our old house has still not sold. We actually used credit this week. We never use credit - ever. We have at least six more trips to chicago - maybe 12 if you include follow-ups. How are we going to pay for that? I sit and crunch numbers over and over and over. But, what is the alternative? Surgery? And not just surgery, but a lifetime of surgeries and the risks that go along with it.

To top it off, I feel like his cast is shifting - his belly button is off to one side. I keep gently turning it back, but I'm afraid his spine is back-sliding and that it's going to get worse.

I hate watching him try to scoot across the floor and give up, laying his face on the carpet and whimpering in defeat. I hate watching him fall over and constantly being on edge because he's going to topple over and hit his face or his head - again. But, what is the alternative?

Even though I know this is the best thing for him, it's so hard. There's a lady at our grocery store who is always abrupt and snotty. She always has been. But, now, when she's rude I want to scream at her. I want to tell her everything this boy is going through and what a small person she is for being so trite. I'm mad at everything right now. I'm hurt by everything right now.

I'm ready for a new normal but my brain won't turn off the irrational anxieties (thinking cars on the highway are going to sideswipe us, not falling asleep at night because there may be a fire, making sure the alarm is on when we're watching TV so no one can break in quietly, etc.)

Is it going to get better?

Some media

http://www.urmc.rochester.edu/pr/news/story.cfm?id=1619

and a video is here
http://main.uab.edu/show.asp?durki=113028

Grumblings of a Lousy Morning

I just have to get this off my chest.

Yesterday, we had to have dental work done. The car's outdoor thermometer read 114 at the worst. It was so hot that even in the A/C Jack was sweating and soaked his cast. Bad. Bad, bad, bad.

Then, last night my tire indicator came on. The back left tire looked low, but okay. We drove home with the intention of filling it along the way and Piper started freaking out that she was going to pee in her pants so we rushed home and forgot about it.

John got up this morning and it's flat. Totally flat - on the rim, in the garage.

He took it off and got the spare out from underneath where it rests. It's flat, too.

We have roadside assistance, but they can only tow from home. After about a half hour on hold we finally find a service station that will BRING US air for the tires - and in that amount of time we see that there are two huge slashes in our tires. (I asked if they looked intentional and John said no - they're on the inside). Then, he said the flat has a slash in it, too.

He goes out to the garage to put the regular tire back on (he's hoping to inflate it and find somewhere that has an appointment today to buy a new tire in town) and Jack flips over and smacks his face on the floor and starts gushing blood from his mouth.

I'm DONE. It's 9:25 and I'm freaking done for the day. To top it all off, we were supposed to go to a friend's house today and couldn't because of the heat and the cast. Ever have one of those days when you just want to go back to bed?

Home Again, Home Again

Although it is only Sunday, it seems as if a year has gone by. The gummy marks of adhesive tape and dark bruises on his hand remind us that not much time has passed, but Chicago seems a lifetime away. We wonder how he will get through an entire year like this, how WE will get through. But, I am sure that like most things, this time will pass quickly as well.

Our trip started on Tuesday, when we left for Chicago in the early afternoon. I cannot possibly convey to you what a relief having a relative and friend with us this trip has meant. To know our children are in loving hands while we were spending countless hours at the hospital, to know that they were well cared for, to have someone to sit and hash out the details of everything at the end of the day and to share activities and many meals was unimaginable. It relieved so much stress and strain on the two of us, having Vicki there. She is an amazingly patient Aunt and the girls (and Jack) are so lucky to have her near. We all are. Thank you, Vicki. Words will never suffice.

We arrived at our hotel around dinner time on Tuesday. We checked in and headed back out, hoping to find a restaurant I had read about. The wait was long and the parking lot was very full, but it was worth every minute. The food was spectacular and it was an entertaining experience. As is often the case, a kind stranger came along to comment on our family's dynamic. He, too, had raised several girls and then "got his boy." We spoke for about five minutes and then he returned to his wife at their table. For the next hour and a half we met course after course of Greek delicacies and that kind gentleman faded from our thoughts.



Finally, our waitress came and asked if we were ready for dessert and coffee - which we were. She handed John a sugar packet that read: "Go on a "worldwide" marriage encounter weekend" with a small heart drawn in felt tip pen on it. We were perplexed - had someone seen us spat with one another at the table and was suggesting we need therapy? Did someone think the children were beyond our control and we needed to get away? The waitress, in her very thick Greek accent, managed to get out the phrase, "that gentleman covered your dinner." Covered? Again, we were confused, tired from the hours on the road, drunk from the hours of eating. She said, "He took care of your dinner" and we finally understood. We were all dumbfounded. The man was gone for the evening, so we never did get a chance to thank him, but the kindness of strangers is never a memory that escapes one's mind. Thank you, kind man.

The next morning we woke up early to find the hospital where his clinic visit was to be held. We were floating with optimism, certain that we would be sent home with a child who will outgrow his spinal deformity. We almost scoffed at the thought he might need to be casted, since he had shown such improvement over the last six weeks. X-rays in hand, we entered the Shriner's campus. After checking in at the security desk, we moved over to the clinic registration area, then on to another waiting room. As the time went by, we began to seriously regret not stopping at the Starbucks along the way. In our haste, we both failed to have any coffee and did not eat a bite of breakfast. John ventured out into the hospital and found some coffee-water and Kashi bars. They were sufficient.

Although our appointment was at 8:30, no one called us back until close to 10. We were told Miss Mehta's presentation may run long, so we tried our best to be patient. After all, we would be the lucky ones to go home after all this nonsense, anyway. I slid his x-rays onto the lightboards, noting the improvement myself. When the resident came in to get our information, we shared this improvement. He jotted notes in a file and said that they'd be over shortly. "They" ended up being almost a dozen people in the room - nurses, physicians, Miss Mehta, and Heather - the pioneer in all of this who brought serial casting into our lives.

We were led into an exam room around 10:30. In the corner was a video camera on a tripod, pointed directly at the small sofa in the room. We saw the lightboard, with Jackson's films illuminated. I noticed immediately that there were now numbers scrawled across the darkness - 64 - 45 - and the letters RVAD. We knew what this meant and our hearts sank. The rib angle was measured at 45*. Forty-five. Anything over 20 is almost always a progressive curve. Jackson's curve may have looked better in the second x-ray, it may have even slightly improved, but it also could have just been his position. We learned that since his arms were raised up in that second x-ray, it masked his curve, and in fact it was worse than even what those films showed.

Miss Mehta was a gentle, quiet woman with a somewhat proper British accent. She explained to the physicians how she only observes, but does not touch until the end. She watched as Jackson played on the floor, cruised along the couch, crawled along the floor. She would ever so softly request another view - without a "nappy" (diaper), suspended, front view. As she observed, she rattled off terms we recognized: "Note the lordosis, corresponding lumbar curve, plagiocephaly, watch how he crawls." We felt almost as if we were eavesdropping as she held her voice very low so that she did not startle or concern Jackson. She was a quiet observer, ever so often interacting with him. Not once did we feel that he was a clinical experiment. She always treated him as a cherished baby, our baby, and addressed us with respect and understanding. She commented on how important it is to ask the parents whether or not they felt it had gotten worse, what they thought, how they felt about it. After hearing her address the plagiocephaly, we asked if his plagio was related to the scoliosis. She said it absolutely was and we asked if we might get documentation of that to send on to our insurance company, since they refused to pay for his cranial helmet. She said the helmet is unnecessary and it will resolve as the scoliosis is fixed. Though glad to hear we no longer needed to helmet, I found myself angry and frustrated that this was the first time any physician had said those words to us.

By the end of our visit, she asked the doctor if he'd like for her to make the assessment. With his blessing, she looked at us directly and stated how imperative "urgent treatment" was. She felt that he had good flexibility and was sure that we could get his back straight, but that it would take about a year. She said he may always have a flat spot on his back from the lordosis, but that no one would be able to tell without looking for it. Though the previous examination had been shattering, her words and mannerisms were comforting. There were no better hands, no better method. This was best.

After his exam a flurry of people rushed around in the hallway. We met a few other parents whose children were going through the same thing as Jack - an amazing blessing in and of itself. The local doctor's assistant, Linda, was on hand to set up casting appointments and get everyone settled in. She has a warm smile and a sparkle in her eyes that conveys kindness. As she explained the process, we began to get more into practical mode and knew we had a job to do. She said to sit tight and that she'd be right back.

Shortly thereafter a young woman came in to inform us that we were being admitted right now and that we'd have the casting scheduled for Friday morning. Wait. Admitted? Friday? We cannot possibly spend two nights in this hospital - we have four children in a hotel room! We attempted to explain and she became more confused. She went to speak to Linda and see if she could get more information. Finally, after a few moments of panic on our part and miscommunication on their part, we discovered that the policy is just set up that way at Shriner's. We would be admitted, then released on a pass so that we could return to the hotel and come back early Friday. Early is the understatement of the century.

We were escorted downstairs to the inpatient ward and led to a room where a teen girl was Jackson's room mate. They were not prepared for us and in quite a huff that we were ready to be admitted, but were not staying. I overheard someone in the hallway say, "What is going on with all these spine kids?!" Clearly there was a breakdown in communication and we were feeling the brunt of it. We spoke to a social worker, I assumed for hospital policy as well, and then saw a pediatrician for anesthesia clearance. The anesthesiologist did not have time to see us, so we were told we'd handle that when we returned Friday. At last, two hours later, we were able to leave. Thank goodness Jackson slept through most of it.

After returning to the hotel, we headed out to a Chicago landmark to try some local foods. It was late in the afternoon, and we managed to beat the dinner rush, then headed to Ikea. It took us a couple hours just to make our way through the massive warehouse style store, but the girls had a fabulous time. Aunt Vicki found lots of art supplies to busy the girls while we would be gone on Friday for the casting, and we picked up a few small toys for Jack - we knew we'd be able to come back up there over the next year if there was something else we wanted, and the trunk was filled to the top.



Since we had an early dinner, we were able to take the kids swimming. The doctors recommended we get him in the pool since he wouldn't be able to swim again for an entire year with his casts. Unfortunately, the indoor pool (complete with loud children who were jumping in and screaming) was too much for him and he was scared. John took him back up to the room and Vicki, the girls, and I stayed to swim in the chilly water. Exhausted from the activities of the day, everyone collapsed in bed and the big girls got a chance to sit and talk until the wee hours.

The next morning we took our time getting up and dressed, then enjoyed the breakfast downstairs. We headed out to the Aquarium (once again getting lost in that dreadfully confusing grid of highways and exits). Thankfully having purchased an annual family membership ahead of time, we bypassed the long line and headed right in. We watched a 4D show, similar to ones at Disneyworld, and Jack was overwhelmed so I took him out of the theater. We walked around, caught an impromptu sea lion training show, and looked at the fish. Lunch was on a balcony of the upper level, ever so slightly overlooking the dolphin show, and our view was spectacular, overlooking all of Lake Michigan.

After lunch, we headed downstairs to walk around a bit more, then home. Everyone was getting cranky and tired, so we got a snack and John began the trek back to the parking garage by himself. We rode home in the notoriously bad Chicago traffic, and returned to the room. I knew we'd need to go to the grocery store and get gas before our appointment on Friday, but Vicki offered to keep the kids there while we shopped. Piper decided she wanted to come with us, and with just two little ones in tow we ventured out to find groceries for the next day.



After shopping, we thought it might be best to pick up take-out for dinner, instead of trying to find a restaurant. We brought food back to the room, ate, then started the bathing process. One girl would take a shower while another was in the tub. Thank goodness we had two bathrooms! Jack was last, and we savored the last time he would splash around in the water. He blew kisses, trying to lick the water from his hands, and we played with his hair - taking pictures of the way it curls up when it gets wet.



Though we had the best of intentions, we did not actually get to sleep until after one. Anxiety set in that evening, once everyone was in bed, and again we rehashed the concerns we had about casting. I fought the urge to wrap my baby up and steal him away in the middle of the night - far from all this medical nonsense. I agonized over whether or not this was the right thing to do, if he'd resolve on his own, if I shouldn't have said that I thought it was getting worse. I wanted to wake up from this madness and have us all be back in our own home with our perfect little boy.

The alarm jolted us awake at 4:45. It was too early to be awake - too early for anything. I literally fought to keep my eyes open as we drove to the hospital. Jackson was sleepy and drifted back to dreamland. It was dark, and when we arrived at the hospital it was empty. Security seemed to take forever to open the door, and we were glad to get downstairs to the inpatient ward. Because Jackson had a room mate, I asked that they not put us in his room. He hadn't been able to eat anything since 1:15 and I knew he'd be grumpy (and vocal about it). They agreed and put us in the playroom, where we sat in his and hers gliders, watching the early morning news once six o'clock rolled around.

Eventually, Jackson's patience grew thin and John walked him around - and around - and around. The nurses tried to comfort him with a polka dot puppy, but he only tolerated it briefly. They explained that someone would be down to take us "up" shortly - but no one ever came. Finally, at seven thirty, a gruff, round woman waddled into the room and said "let's go!" We snapped out of our groggy daze and walked to the door. She abruptly told us we absolutely could not bring his stroller up there, and we took it down to the room. A young boy was with us, in his hospital bed, who very quickly made it known that he was autistic. The orderly, clearly impatient with his antics, shoved him down in his bed and yelled at him, startling all of us.

After a quick ride on the elevator, we arrived in the pre-op room. An amazing nurse, Ruby, checked us in and explained what would happen. She was sincerely sweet as sugar and awesome with the children. She brought Jackson over a little camel, and would introduce us to the swarm of doctors and technicians who came in. There were three children allowed in the pre-op room, and Jack was in the middle crib. I mostly sat in a chair, answering questions about anesthesia while John paced the floor with Jackson. They were ready to give him a sedative when another anesthesiologist commented that yesterday things had been really delayed and that the doctors weren't even there yet. I was increasingly frustrated - we had gotten up at 4:45 for this and the doctors weren't even there!? Do they have any comprehension how difficult it is to not only deny your child a basic need, but to not be able to comfort them or ease their hunger?

Finally, the 8 o'clock hour rolled past and they shortly after gave him a sedative. He became very silly, our happy little guy, kissing mama and his camel over and over. He held our faces and played as his eyes began looking heavy. He began to lose coordination and we laid him down in the crib. Every so often he'd put his hand up in the air and say, "wooo."

It was nearly 8:30 when they finally came in to take him back. They had to put a tee shirt on him first, then a knit tube that went over his whole body. They said they'd wait for him to be back there before they gassed him down and put in the IV. We said goodbye and could hear the anesthesiologist talking to him and reassuring him. He didn't even cry. Big boy.

Ruby showed us where the waiting room was, and told us we absolutely must go get a cup of coffee and eat some breakfast. We found the cafeteria, ate, and decided to head back up. We were told it would be about an hour for the casting, so we wanted to be there just in case it went more quickly. It didn't.

The time dragged on. As the minutes passed, we made small talk with the autistic boy's mom and watched Oprah. We couldn't read the magazines or stop our minds from speculating what was taking so long. Doctors would come out or parents would approach and we'd straighten in our seats hoping for an update. Why didn't they come out every hour? Was there no one who could tell us our boy was alright? We shifted in our seats, then got up to pace the hallway. Where were they? What was going on!?

Finally, the doctor came into the hallway and said everything was fine. It had been two hours since they took him back - but - they had gotten his curve down to THIRTY EIGHT DEGREES. Thirty eight. That was at least an improvement of twenty six degrees. If this held, his curve would no longer be surgical. We were thrilled. He said they just needed to trim up his cast and they'd be done.

We waited.

And waited.

And waited.

Almost another hour went by before we heard "JACKSON!?" from the doorway. We heard his hoarse cries, his eyes still closed from the anesthesia. She had him in a metal crib, both bars up, and I noticed a bottle of apple juice in the corner. Apple juice!? I didn't give him apple juice! Why didn't you come get me? Why didn't I get to breastfeed him like I did after his MRI? Why didn't you even TELL me he was awake? A thousand things ran through my mind. I was so angry. She said "He's been DOING THIS the ENTIRE time." Crying?!? He's been CRYING and in discomfort the ENTIRE TIME in the post operative care unit and you didn't want to come get me so I could try to help him? I seethed inside, but did not dignify Naomi's words with a response.

She said, "I tried to give him a bottle of apple juice but he didn't want nothing to do with that." I BROUGHT a sippy cup! I could have TOLD YOU he took water from a sippy cup. I could have nursed him and held him and comforted him and you denied the both of us that one simple thing!? For WHAT? Your ego?! Your pride?! You terrible little person, not being able to admit your defeat and turn to his parents for assistance. I chastised her in my mind as we moved down the hall.

He laid there, turning his head from side to side, crying and groaning. He was miserable and disoriented. And, all I could think of was that this - woman - had been there. No wonder he was unhappy.

The cast was on him - it was bright blue fiberglass over plaster gauze. The tee shirt was visible underneath. She said something about them needing to finish the edges still, and left us in the inpatient room where we had checked in early that morning. The edges of his cast were as sharp as a knife. As he moved against it, it cut his neck on both sides over and over again. His inpatient nurse, Kirstin, came in to help "petal" the edges. She painstakingly applied strip after strip of moleskin and then taped it all down. Once she got the shoulders covered, I held him and nursed him. He was far more content and quiet after that. Half an hour into covering the edges, Lisa came down from the casting deparment. She was asked to trim the edges and said something about us being unhappy with the arm holes. Clearly, again, there was a breakdown in communication and no one was quite sure what they were supposed to be doing or who wanted them to do it. But, we muddled through.

Lisa had an idea for the edges and asked Kirstin if she could try it. She wanted to cut apart the tee shirt that was underneath and pad the edges with cotton, then roll the fabric over the top and tape it down with silk tape. It worked!!! Lisa was a genius!!!! The edges were not only soft, but padded, and the belly and back cutouts were left open with plenty of room for air to pass through. He would be so much cooler this way. We chatted while she worked, and eventually Jackson fell asleep and allowed us to move him around and tape it all down. She had an artist's touch and meticulously placed every fiber and every strip of tape. She virtually resculpted the entire cast. She recommended colored duct tape for the outside, since you could wipe it off, and we promised to do that once we got home. We were discharged with instructions to return in one month for a follow-up visit, and we will schedule the OR for ten weeks from his first cast for a second one.



The drive back to the hotel was another set of twists and turns that led us into unknown territory, but we finally made it back. He was so uncomfortable and still very sleepy from the medications, and we all agreed it would be best to leave. The hotel was accomodating, even though we were running very late, let us check out early. We rushed upstairs to gather our things and noticed a huge banner the girls had made with Vicki that read, "Welcome back Jack!" As we hurriedly loaded up the cart, we rolled it and promised to hang it at home. They worked so hard on it and were so proud.

John sat in the back and took care of a groggy, grumpy boy the rest of the way home. We decided drive-through and only a couple stops were in order so that we could get home as quickly as possible. It was unbearably hot outside, but the drive seemed to go quickly. Very soon we were home, in our own bed, and so very glad to be there. We soon covered the cast in colored duct tape to protect it from liquid and drool.


Jack seems to be adapting to his cast a bit more today than yesterday, but it has not been an easy weekend. Saturday he spent the day either sleeping or crying. His neck is still very sore and raw from the edges of the cast. He cannot move his head from side to side from the shoulders being positioned where they are, and cannot move his arms the way he normally would. He can't sit and balance, but he can stand. So, if he tries to sit with a toy he falls over and hits his head.

If I could, I'd carpet the entire house. I'm hating laminate floors right now. The poor guy has fallen over so many times and we have learned we literally have to just sit and hold him now. He can stand, but only directly in front of us, and he forgets that he cannot move the way he normally would. He's still in pain, we've been giving him motrin and that seems to help, and the icing on the cake is that he's getting his last molar as well as a couple of other teeth.

I feel grit on the bed from the plaster on his cast after we sleep, and it is hard to hold him now that he weighs so much more, but cannot mold to the body like he once could. He's heavy and rigid and barely fits into his new stroller. We had to adjust the carseat straps to the very top just to get him in there, and I'm not sure what we'll do once he outgrows that.

We have a year ahead of us filled with adaptations and challenges, and the last two days have made me wonder time and time again how on earth we will get through it. We never even had the honeymoon of ease like we did with his brace, where he pleasantly surprised us with how easy things were. This has been a floodgate of challenges and difficulties. But, I have to believe that this is the best thing for him. As difficult as it all is, this has to be easier to face for one year and be finished and not be surgical or permanent the way growing rods would be. This discomfort is just the tip of the iceberg of what he'd face with open spine surgery, and the risks aren't even close to being comparable. But, today, right now, it sucks. It's exhausting - physically, emotionally. We don't know how we'll manage tomorrow when John returns to work and we have four kids as well as a baby who cannot get around as well but has the strength to try. I pray he will give me some of that strength, at least in will and determination. We are all going to need it.

Packing my bags...

Or, procrastinating doing so.

We leave tomorrow. This weekend Jackson developed a runny nose and watery eyes. I was sure that it was just molars, since he's getting two more. But, alas, this morning the runny nose had morphed into a gunky, green, goobery nose.

Last night as I laid in bed next to him I saw that his eyes were open as he was trying to fall asleep. I kissed the soft little spot between his ear and his jawline. I prayed that he would somehow tell me what the right thing to do was. I asked him to help me, to somehow show me. I pleaded with his body to fix itself - to straighten out and grow, baby, grow.

Tomorrow I will worry about our safety on the road, our travels, and the visit. It is out of our hands now.

Conflicts and Conversations

This month has been bittersweet and filled with rollercoasters of emotions and anxieties. I find myself worried about silly things, or unlikely things, and I'm certain that it's only related to my underlying fears regarding Jack's evaluation.

Yesterday a bridge went down in MPLS. Watching the news unfold all evening led to nightmares last night. We travel over a bridge built the same year quite often. There are three bridges here - and I cannot help but wonder which is the most dangerous, which is the safest, which is most likely to go down. You wonder irrational things like, "How would I get five kids out of carseats if we were going underwater." It's terrifying. Unlikely - but terrifying. So, my fears about the upcoming visit are manifesting in these irrational thoughts about bridges at the moment.

As far as the fears are concerned, I'm not even sure why I'm afraid. I have to make a big decision here - whether or not to cast. I pray - and I hope you will, too - that God will close that door to us if it isn't meant for Jack. It is a collossal pain in the butt to cast because it cannot get wet. Having an almost exclusively breastfed baby (we think he rejects solids because there is too much pressure on his belly from the curve in his spine, or perhaps the esophagus shifting to the side) means we still have issues with diapers leaking. If it leaks, it will go up inside the cast, and I just cannot imagine how to get that clean and dry again. Yuck! Cosmetic and asthetic issues aside, there is a risk of chest wall deformity and an additional risk with being under general anesthesia.

Our greatest hope, what we pray for, is a complete recovery without intervention. The fact that his back is already correcting could mean he has self-resolving scoliosis. Oh, I pray that's the case. Woudldn't that be amazing?? I am anxious to see if his curve has corrected or progressed going up to Chicago next week. Hearing that he's ineligible would be somewhat of a comfort, as long as his curve is not progressing. We know that there are hundreds of people praying for him, and we know that God is hearing and answering your prayers. Jack's Daddy works with a wonderful man who also happens to wear the hat of a Pastor back home. He and Jack are special friends - they share a birthday. Just after his diagnosis, he shared a story with us. During service that Sunday he prepared a presentation for his congregation. It had lots of pictures of Jack's chubby smiling face. He told the story of this sweet little boy's life. Then he changed the picture to Jack's x-ray. As he relayed the story of his congregation first gasping in shock, then lowering their heads and closing their eyes in solemn prayer, my eyes filled with tears. He is touching so many lives, and so many lives are touching ours. It is amazing to hear of the kindness, and faith, of strangers. We believe, firmly, that God has already shown us our boy will be okay with this noticeable resolution. We just pray that we know the right answers regarding the next step in his treatment.

We're havin' a party

Blackberry Picking

on Sunday :)
Another gorgeous day with low temps. We had a great time at the farm. The first two pictures are from our CSA farm share - they had unlimited cherry tomato picking this week.

Grant's Farm

Had a great day at Grant's Farm this weekend - gorgeous 80-degree weather in July!!!!

A New Twist

Or, more aptly, a curve ball.

This weekend we were certain his back was getting worse. If you run your hand along his side, you can feel the edge of one of his ribs - the tip of it - as if it's not entirely there. The whole back/shoulder area was looking really distorted and we were alarmed. So alarmed, in fact, that we could not sleep that night. We were anxious to call the nurse practitioner and have her order a new set of x-rays.

We reached someone Monday morning who ordered the x-rays for us. John took him back because we ran too late to bring them to my sister-in-law's, and said he stood up nicely for the pictures again. We called and called all day long for the results, leaving messages to no avail. Again, John called all day today asking for an update and no one returned the call.

Just after 7PM tonight the phone rang and it was Jack's surgeon's nurse. She said she had the x-rays and they didn't look worse - they actually looked, despite the likelihood, BETTER. John pressed and asked for a measurement and she put him on hold.

She came back and confirmed the original x-ray was somewhere between 65-70 (yes, we were told 70 at his appointment. The official doctor's measurement came back at 68 we found out yesterday).

She said, "I can't believe it - but it's 55." FIFTY FIVE. This is beyond what bracing could do - bracing stabilizes, at best, and often doesn't even do that. For a curve to IMPROVE - not stabilize but IMPROVE 13 degrees is unheard of!!!!! She said she'd send them up to the doctor and see if his treatment plan changes at all, in light of this new development.

I don't want to project ahead and even begin to think that it means all is right with the world and this will resolve entirely on its own, but I am spinning at the moment.

I can't even comprehend this - it's so not what I expected.

I've just sent an email to the coordinator of the training program to see what, if anything, this means for the casting. I don't know if it means that he's not a candidate - because it's no longer considered "progressive" - or if it just means he could respond even better to the casting. I just - don't know now.

Fifty five.

The power of prayer astounds me once again.

Touched By An Angel

This past week, just after speaking with the doctor in Chicago, we touched base with a woman on a yahoogroup for infantile scoliosis. I was growing increasingly concerned about the fact that the other parents on this group didn't think the Chicago doctor had the right equipment or used the same technique in his casting. She asked me to call her, and within a few hours John was on the phone with her.

It was very hush-hush, but it turns out the european doctor who pioneered this non-invasive casting method for infantile scoliosis was hosting a symposium in August. Guess where?

Chicago!

Guess who she wants up there?

Little man!!!!

That's right. Not only is this doctor in Chicago doing the castings through his clinic, but the guru herself - the physician who dedicated her entire career to serial casting and curing scoliosis without surgery - is hosting a symposium there and, despite being retired, would actually BE Jackson's doctor!!!!!!!!! Words cannot express our hope and gratitude right now. We are guarded, knowing that he still has to be deemed a "good candidate" - but this is so beyond amazing. This could be the answer to our prayers that we didn't even know to ask for. This is the hand of God. Period. The coincidence is beyond anything on this planet.

So, the coordinator of this program emailed me while we were out today, asking that I call her cell. She was working from home and didn't have any of her information there. So, John just got off the phone and Jack is IN. The doctor will be in Chicago August 8th, 9th, and 10th. The 8th is an "exam day" - she has a small list of babies and will be evaluating who is a candidate for casting. On August 9th and 10th they are doing the castings. So, if she determines he's a good candidate, he will either be casted on the 9th or 10th. Heather said she has to talk to the hospital and see if they are a facility that requires an overnight stay after casting or not, and will let us know.

I'm nervous now - I want him to be a candidate so badly. My stomach is all flip-floppy.

I'm SO honored that Jackson gets to go up there. She has a small list of babies who will be going, and she said she called Shriner's today and had them add him. They said, "We have a new patient on here - it's a baby boy, age 11 months, but we don't even have his medical records yet or any of his information." So, it sounds like Dr. Sturm may have gone ahead and put us on the list after I talked to him last week, too. :)

See?

Hand of God.

We're going to Chicago!

I waited what seemed like an eternity for someone to call me back, and the phone rang this morning with Shriner's on the caller ID. I thought it would be some administrative person calling me back. I grabbed the phone with so much enthusiasm that I pulled it out of the wall! I yelled, "NO!" and plugged it back in, and thank goodness, the person was still there.

It was the doctor!!!! He was very friendly (a little defensive when I said, "I heard your team is being trained on serial casting," because they ARE currently casting and have been doing it for some time, he said.) He said, "Well, with a curve like that the horse may already be out of the barn, but I'd be happy to see him." That's all we want - a second opinion, a second option. SOMETHING to do during the next six months that we're waiting anyway for the surgeon. When I told him our surgeon's name, he said he knew him very well - so I was careful to be very respectful and just state that we wanted him to have other options and make sure that we explore everything non-surgical first and foremost.

He wanted me to talk to the applications coordinator to get our information sent up to Chicago from St. Louis, but she was on vacation. Nice timing! She'll be back Monday, though, so no major worries - I just want answers YESTERDAY.

I stressed the urgency to the appointment coordinator and she put me on hold and called the DOCTOR to see when he wanted him in. Like she didn't believe me that time was of the essence in his situation. He said Monday would be fine to get everything scheduled, so she relayed that and told me to leave a voicemail for the coordinator. I asked if we could schedule him and then deal with the paperwork on monday (so we could arrange hotel/transportation/care for the kids) and she kind of barked at me that they couldn't - "No way!" and transferred me.

I listened to this ten minute voicemail redirecting people to different extensions and things and at the end she said, "Don't leave a message on this voicemail box because no one will be here to check it and your call is important to us." But, I did anyway - and told her Dr. Sturm told me to.

So, now we wait - again- tick - tick - tick - but hopefully this will be just the weekend and we'll get some firm information on Monday. The bottom line is - we have options - he's going to be seen, and we can get the professional opinion of someone else. If we need surgery, we need surgery - but if we don't, it's worth it to try.

A Second Opinion

We're not at peace with what the surgeon said.

I've joined a yahoogroup for scoliosis support and some issues have arisen.

These parents are all on this casting bandwagon - there is a euro doc who came here and trained a half dozen specialists on plaster casting to correct scoliosis without surgery. They are scattered around the country (really far from us). It has shown "good results" but sometimes the kids end up needing spinal fusions (where they connect vertebrae, surgically) anyway. It also can cause lung deformity and rib deformity, which we are already facing just from his scoliosis, and possibly in conjunction with the rigid brace. www.infantilescoliosis.org is their website - you can read a bit there.

His surgeon said not to use the brace as much, which we agreed with. But that he wants to wait 6 months to see him again. The group says that it sounds like he doesn't know what he's talking about because Jack's curve can progress, making things so much worse in the future, and that we need to be monitored more closely and have regular x-rays.

I respect that these women have done a ton of research - I do. But, I also seem to be getting conflicting information from the local surgeon (who is THE BEST in the nation, period, at spinal surgery). Then again, he's a SURGEON - and I don't know how many infantile cases he's treated.

WHY can't someone HERE do casting so we could at least sit down and talk to them!???!

****UPDATE****

I talked (and cried) it out with John and we're getting a second opinion. There's a doctor in Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I called and got his PERSONAL VOICEMAIL.

UNHEARD of.

I'm anxious to hear back from him. I read more today that showed even for those - gosh, I can't even type it without crying - even those who have growing rods and spinal fusion lose 20-30 years on their lifespan because of the decreased lung function. How do I make that decision for my son??? UUGH.

Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 months. They say at least every 4 months.

Also, I dont' understand at ALL why they're calling it congenital when there is no spinal defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's office made ZERO mention of that. :(

I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms was under the age of 10. He's the best at what he does, but I just don't think THIS is what he does. Scoliosis occurs in 1 of 10,000 births. 80-90% of those are mild and self-resolving. So, Jack is 10-20% of 1 in 10,000. That's a FRACTION. I mean - a tiny tiny population in the country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I don't feel like our surgeon is that person.

I'm terrified of making the wrong decision. This is our baby. He has to live with this his entire life. But, I think making an uninformed decision is the worst thing we can do. Even our primary care doc said on day one, "If this is lifelong, you'll probably want a second opinion."

I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about leaving the girls. I'm worried about the financial aspect (Please, God, let our other house sell!) and affording hotels and all the things that go with it. I'm worried about our car doing okay up there and back repeatedly. But, we owe it to Jackson to at least SEE if there's something else.

Superfluous Smile

A superfluous smile for this Monday morning.

Here's our family - Simpsons-ized.

Side by side

Here's a picture of the digital x-ray printout and the actual x-ray they took Tuesday at Shriner's in the brace.

Tuesday's appointment at Shriner's

I didn't get many pictures because it was sort of "formal" and I wasn't sure how receptive they'd be. But, I did manage a few pictures here and there.

Monday's Helmet Fitting

The helmet is in - but you can't have it.

I am positively FED UP with this woman in Orthotics & Prosthetics.

First, we find out that he needs a helmet and they spring on us AT the appointment that we need to pay $1500 out of pocket just to get him casted for the helmet. (Like they can't MENTION that when you schedule your appointment???? Days, if not WEEKS, ahead of time?) They KNOW that. Why not just say "Can I get your insurance? Oh, by the way, your carrier typically doesn't cover this, so you may want to be prepared to pay for it yourself."

So, we get there, are not in a position to pay that right that moment, so we have to leave and come back another day. He had been casted for his back brace a week before that and they said it would be 7-10 days, so we thought three more days, tops. Another week beyond that goes by, with us calling her to check and see if it was in (time is precious when a spine is pressing on your baby's heart and he has progressive scoliosis).

John pressed - caling her and explaining that we needed to get this done ASAP saying that they told us 7-10 days and it was now 15, then called our doctor's office. They said the plastic surgery department needed to call and really put the pressure on them to get him in. The O&P lady actually said to John, "Well you should have come over to do it THAT day - we had openings that day." Oh - did you also have $1500 you could give us THAT DAY?!!!?!? Because we had NO WARNING that we'd need $500 down at least - could YOU write a check for $500 with a moment's notice? We didn't even have a checkbook WITH us.

Miraculously, his brace was ready midday. But, of course, they couldn't get him IN that day - and then we had to begin the literally three hour process of getting TO the hospital's lab (by the time we arrange for the kids to go somewhere and drive over there).

So, we finally get in 15 days after he's been casted for his back brace and they do his helmet casting. Again, we're told 7-10 days. Today is day 10 and she calls this morning to say that it's in. BUT - she wants to schedule it for Monday afternoon - well, we have another appointment Monday afternoon. Okay, how about Tuesday afternoon? NO, we see the surgeon on Tuesday. Fine - well, Wednesday is a holiday so I guess the earliest we could get you in is Thursday.

Thursday is almost a month since we were told to get him casted - she said, "Oh - you mean since it was PRESCRIBED?" Whatever! YES.

She proceeds to tell me how the whole day is booked up because they do fittings and adjustments on other patients AND the plastic surgery department sends over walk-ins for castings - because Fridays are supposedly the only day they see patients (Funny - we weren't there on a Friday!).

I explained that his head is going to stop being nearly as flexible as time goes by and we've already lost an entire MONTH in this process. She puts me on hold and says they can squeeze me in at 10:30 on monday, but that they have another helmet fitting and it will be tight - so, great - we'll be lucky if we can RUSH out the door and get to the next appointment!

So, now I'm in tears from having to deal with this woman. Emotions are running high as it is - everything feels like we're running out of time as his skull hardens and his spine gets worse and NOTHING can impress upon this woman how urgent it is when it's YOUR BABY!

*~*~*~*~*~*~*~*~*~*~* UPDATE*~*~*~*~*~*~*~*~*~*~*~*~*~*

I called the hospital to file a complaint. They paged the head of hospital relations, and, lucky for me, he was a gentle older man who was very understanding and compassionate. He's going to make the call today to get them informing parents when they call for the appointment for helmeting with plastic surgery that they'll be responsible for such a large sum up front. It doesn't change my experience, but if it helps the hundreds, if not thousands, of parents behind us then our frustration hasn't been in vain.

He also took note of this woman in Orthotics and we talked about how she should be in another field. They are providing a service here, and failing to meet our needs, so we will no longer be customers of this lab. From now on, we'll do all of his orthotics through Shriner's. I explained that while Jack's issues are lifelong, they're not nearly as devastating as, perhaps, the loss of your child's limb or the other issues children come in for. I pointed out that when a parent comes into the hospital for their child, they are in as much pain as that child - and this is as difficult for them, if not moreso. Someone who cannot comprehend that and cannot be compassionate about the urgency or concern a parent has, should not be in that profession dealing with the parents on a daily basis. He agreed wholeheartedly and said they not only treat children, but parents, grandparents, and even aunts and uncles there - when parents have to return to work or whatever their situation is.

So, I hope that my constructive criticism of our encounters at least helps someone else coming down this path in the future.

Relay for Life

This past weekend we attended our family's 11th annual Relay for Life to benefit the American Cancer Society. This year's theme was "Superheroes" (hence the Superman shirts on the kids). We walk in memory of my grandpa, who lost his battle with prostate cancer just before our first daughter was born. The girls never had the chance to meet him, but we honor his memory every year and it gives us a chance to talk about what a great man he was. The girls feel like they know him now, and talk about how one day they'll meet him in Heaven.

The girls spent the evening hawking bracelets for Vicki, and by the end of the night our team efforts were rewarded with a Bronze award for having reached the $1500 mark!

Growing like a weed

Traumatized in Plaster

Today the back brace finally arrived, and we headed to the Orthotics & Prosthetics lab for his fitting and head casting.

It was - in short - a nightmare.

The office was in a random medical building set far away from Children's. We had to park in a garage, cross a sky walk, and wind through corridor after corridor. They were down two sets of elevators and in a small doorway. The sound of a mad scientist's laboratory filled the room - grinding and sawing, and the smell of hot plastic filled the air.

The exam room was splattered with plaster drips and the two small chairs had stains from years of use. We waited for just a moment before the Orthotist came in and set down his brace on the table.

The brace fit nicely, but was too long. He tried it on Jack, lying down, and marked against his hips where it needed to be shortened. He wasn't thrilled and struggled to move at first, but once they made the necessary adjustments he did much better. He can sit in it in the carseat (although he gets very hot) and is currently crawling around on the floor in it. (Many thanks to our sweet friend Heather who sent his Zutano outfit seen in these pictures. It's nice to have something so soft and comfortable under his brace.)

Then, they began the casting. They set him in a Bumbo (remember his aqua seat that helped him sit up when he was just 4 months old? They had one in the lab, too.) They draped him with a big, white cloth. Then they covered his entire face with a ski mask of sorts, made of a thin, breathable fabric. He screamed the second it went on - the eye holes were asymmetrical and it covered his nose and mouth. He panicked and thrashed the entire fifteen minutes, which dragged on for an eternity. They covered his entire head with a section of wet plaster, then wrapped the rest of it all the way around with plaster gauze. After letting it set for a minute, they cut it off with a large utility knife against a rubber hose sandwiched between his head and the gauze. He screamed so hard he wasn't breathing at times, and would gag and choke. We were sure he was going to vomit. I reached my hand under the drape and rubbed his leg. Two grown men could hardly hold him still enough to cast his head. He screamed, and screamed, and screamed. It was heartbreaking, to say the least. Nothing in his life has upset him so much until this moment, and we felt awful. If we had known, I think we would have taken our chances with his head self-correcting and left him alone.

He laid against my chest for a minute, then had to get dressed and back in the brace. He's easier to carry now, upright and sturdy almost. He sits up so much taller in his carseat, too. I'm deluding myself into thinking that this is going to somehow magically cure him - that one day we'll go in for an adjustment and his spine will be a standard curve and he won't need surgery. That his perfect, soft baby skin will stay the way it is and he will never know such profound pain.

Action Jackson

Here's the boy wonder on the go. (And a side of sillies)

You can really see his ribs/spinal deformity on the right side here as he crawls.

Happy Father's Day

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MRI Results

CLEAN!

Nothing short of a miracle! Barb (the nurse practitioner from
yesterday who did his physical and "diagnosed" the toy in his belly)
called this morning as soon as she got in - knowing how worried we
were.

No heart problems, no lung problems, no heart defects, no
gentio-urinary defects - nadda. His vertebrae are all intact,
correctly shaped, and his spinal cord is enclosed and the correct
size.

We are SO relieved, and just high today with this news.

Monday we will touch base with the surgeon again and schedule an
appointment to figure out what his surgical plan of action will be to
treat his scoliosis. But, this is just the best possible news we could
have gotten today and we are so blessed.

Thank you all - tremendously - for your prayers and well-wishes these
past 11 days. We appreciate it all so much and could not get through
this without every one of you.

Much love,
John, Sandi and perfect little boy Jackson.

MRI

This morning at 4:45 the alarm went off so that I could feed Jackson one last time. We brought a cup of water with us in the car, and he sipped a few teaspoons worth up until 8. He seemed content, though, and wasn't complaining. After dropping off the girls, we arrived at the hospital around 9:30 this morning. The traffic wasn't nearly as bad as we anticipated.

We registered and were told to sit in a waiting area, and that we were a little early so they weren't quite ready for us. Twenty minutes later the nurse walked out to escort us to the ambulatory procedure center. We stopped at the scale first, and Jackson had gained weight just since last week (23 pounds, 8ozs). The room was divided into curtained exam areas that could be closed for privacy. We were in "room" 8. There was a glider, an arm chair, and a smaller-scale hospital bed. It was narrower than an adult one, but just as long.

We sat in the room and Jackson seemed grumpy but easily entertained by the nurses. They got some medical information on him, asked about his last meals and whether or not he had any teeth. They had to get his blood pressure, pulse, and temperature. She said that his feet and hands looked a little chubby for an easy stick, and that they might need to gas him down first. We instantly felt like weight had lifted, and she said she'd need to talk to the anesthesiologist since it's ultimately up to him, but that she saw no reason why they couldn't get him to sleep before they did the IVs. She added that one of us would be able to be with im when he went to sleep, so I volunteered John. I had been denying him nursing all morning and didn't want him to have any more fear or negativity associated with being around mom.

Next, they needed a physical on him that was within the last 30 days, so a nurse practitioner came and evaluated him briefly (declaring him perfect). He sat still even for his least favorite part - the ear check. She was from the ortho clinic, where they ordered the MRI, and was incredibly kind and gentle with him.

The anesthesia nurse came in and was amazing. She wasn't able to get her breastfed son to take a cup until 15 months, so she understood our plight. We chatted about our kids, and she got more background information. We talked about risks. I asked for all of it, what could happen, what the chances are, and what to expect. She was totally honest and I respected her so much more for it. It was a huge relief to hear that since he didn't have heart and lung issues, and was a healthy baby without any upper respiratory symptoms, the chances of anything going wrong were very slim. We talked about what would happen if he had a breathing problem (the most common adverse reaction) and she said sometimes they have to put in a little breathing tube because when babies wake up they tend to freak out and gasp, which can cause them to spasm. Having all this information made me prepared for what could happen, and I knew that no matter what he was in good hands. We couldn't have asked for him to be in a better hospital if something did go wrong.

The clock was ticking slowly and the original nurse came in to let us know that they MRI scan was running late and we wouldn't be going back until 5 or 10 after. I had been avoiding holding Jack, thinking if I did he'd want to eat. But, by 5 after he was getting more worked up and just wanted mom. I snuggled him against my chest and softly whispered his favorite lullaby in his ear. He was trying so hard to go to sleep, but he was so hungry his tummy just wouldn't let him. I kept walking him around, rocking him, singing our song. The last twenty minutes seemed like an eternity. Nurses filled the bed with electronic toys and we desperately tried to keep him happy.

Finally, at 11:25 they came in to let us know that it was our time. The anesthesiologist was a handsome man with dark skin and warm eyes. His accent made me think of the tropics or warmer climates. He shook our hands and said a soft hello to Jackson. He was gentle and kind - not quite old enough to be grandfatherly, but similar in disposition. He agreed that Jackson could be gassed down first, and explained the procedure one more time. He said that they'd walk back, put a small mask on Jackson, and within a minute he would fall asleep. Then they'd get the IV in either his hand or his foot and start the medicine to put him under. The MRI would last anywhere from 30 minutes to an hour, depending on how many pictures they needed. Then they'd bring him back to the room and page us so that we could be there as he was waking up. We were so relieved to know he wouldn't be without us for a moment.

I held my boy that last minute, finished the last line of our lullaby, "When you wake, I'll be there to hold you close like teddy bear" and kissed his head. I told him I loved him and then passed him to Daddy. He was crying, hungry, so tired. I saw his head peeking over John's shoulder as they walked down the hallway. I smiled and waved.

John was back within a minute. Jack had laid down on the table and started crying harder. They put the tiny mask over his face and the doctor said crying is good - they have to breathe when they cry and the more they breathe the faster the medicine works. He fell asleep quickly - within thirty seconds - and the anesthesiologist asked if John wanted to give him a little kiss before he left the room. He did, and joined me back in the curtained area where we sat for a second, trying to just figure out what to do next.

Once we took a moment to breathe, we walked out toward the waiting area. It was down the hallway by the ortho clinic and down a hallway. It was quiet and lonely. One TV was on in the corner, just a bit too loud. It was empty. We sat for a minute, then decided that time would pass more slowly if we were sitting and decided to go downstairs to get lunch. Since he was taken back so late, it was already 11:30, and we knew we'd be hungry by the time we got out of there.

After we ate, we went upstairs to the gift shop. They had beanie babies, and Jack had been playing with the puppy the nurse in radiology gave him last week. We saw a larger puppy, smooshy soft and light blue, and had to get it for him. We sat nearby for another ten minutes or so, then grew impatient and walked down the hallway. We thought about sitting in the radiology waiting room that was almost adjacent to where Jack was, but instead stood in the hallway. It had been 70 minutes since he went back - surely they'd be done soon.

We looked up and the nurse spotted us - almost looking as if she was doing something wrong. She had Jack cradled in her arms, still sleeping from the anesthesia. He was in a diaper, wrapped in a scratchy white blanket, with a monitor hanging from his foot. She said that during the MRI they saw something in his belly and wanted to do a quick x-ray. She said it looked like a black mass and they wanted to know if he may have swallowed something. She added that they did end up having to stick him twice, but other than that he did great, and of course, didn't feel a thing. Jack was stretched out across her chest, his eyes fluttering, and he softly said a word I didn't understand.

We went to the same room we were in for his skull x-rays last week. He was still out from the anesthesia, but started grumping in his sleep. He was opening his eyes and arching his back, clearly unhappy about being naked and on the hard table. We braced him and they snapped two pictures. I held him in my arms for the first time in that room, and he didn't know who I was. He was completely out of it, pushing against my chest with his arms and kicking away with his knees. I passed him to John, who was able to get him calmed down.

When we got back to the APC they said I could go ahead and try to feed him. He didn't quite latch on, and didn't have a strong suction at all. He was still so sleepy and wasn't opening his eyes. He tried to nurse for about ten minutes, and eventually got stronger and more consistent. He drifted back to sleep and I passed him back to John about fifteen minutes later. The nurse came back with the discharge papers and said we could go as soon as we knew if he kept the breastmilk down, then she'd take out his IV in his foot. She said that the ordering doctor would have to let us know what they found in his belly, and John pressed - if it was something urgent, we wanted to know now before we went to pick up the girls and drove all the way home. They called the nurse practitioner down who did his physical earlier and she stopped by the room to let us know she'd go look at the x-rays right that second.

We sat, anxious, wondering what this black mass was in his belly. We worried and I kept reminding John that there was no sense in speculating until they came back in. She returned with a print out and handed it to me asking if I knew what it was. It looked like a doll earring - not sharp, but two balls on either end. It was a long, thin piece of metal right there in his intestines. She laughed and said he'd pass it in a day or two. We were relieved once again.

She left, and we sat in silence again with our sleeping boy. We watched his heart rate on the monitors and he would react when we talked to him. I finally got the idea of saying his sisters' names - knowing how much he loves them and lights up when they come into the room. I whispered, "Jackson - do you want to go home and see Jae Jae?" and he immediately started moving. It was unreal. He started opening his eyes and said "Jae Jae." I started saying each of his sisters' names, and he'd repeat them. I told him we got him a new doggie and he said "goggy" and "woo woo." He sat up, held his head up high, and looked like he'd just had the best sleep of his life. He held his new puppy, squealing "goggy" and "woo woo" and shaking it around. He was 100% back to his old self, smiling at the nurses and talking to us.

His nurse came back in to talk to him and said she could take out his IV now. I asked if I could nurse him while she did it, thinking it might hurt him. He didn't even flinch. He wasn't very hungry after getting IV fluids, but he was nursing as usual and his suction was strong again. We walked through the halls of the hospital thanking God for our amazing boy and the capable hands he was in, filled with calm and optimism for the things to come.

Here are our photos

Nightfall

We spent the day at a parish festival from where I grew up, with lots of family around. We put everything out of our minds for a glorious morning. Being surrounded by family, we felt a comfort where words were not necessary - they were understood, unspoken.

The kids sat on the curb being showered with candy from smiling children. The Midas Touch seemed present in every game they played, bringing home the biggest stuffed prizes and a bag filled with treats. Their eyes sparkled with joy every time a ping pong ball landed in a cup or a mechanical pig crossed a finish line as they squealed with delight. The prizes, often small trinkets, were like treasures overflowing within their small hands. The end of the morning they were sticky from sweets and flushed from the heat of the midday sun, and collapsed in the cool air of the car.

We crossed errands off on our list - got haircuts that we knew we'd neglect once the snowball of medical visits and brace adjustments began. We ran by the camera shop for a special lens I've been wanting for months, and went to a store to get Jackson some comfortable shorts to wear with his brace. We busied our minds with things that needed to be done in an effort to not remember what was to come. We went out for dinner and laughed and played the games that are typically disregarded inside a children's menu. We completed our last task of the evening, and started back on the way home.

As we entered the highway, darkness began to fall. The car grew silent as five very tired children drowsily watched a movie and drifted to sleep. We were left alone with our thoughts. The quiet was peppered with an occasional question. "What should he wear tomorrow?" "Do you know what the girls are wearing?" "Should we stop for gas tonight?" Sadness crept in. Fear was in the air. I wondered how on Earth I could keep him from nursing without making him feel that I was denying him the one basic need he has in this world. I wondered how the moments would pass tomorrow, who would meet him first, how he would react to them. Awful thoughts entered my mind, thinking that if something happened this was our last evening together this way - our family - before things were...different. I wondered if the girls would ever forgive me if something happened to their precious boy, our precious boy. This was somehow my fault - I had to call the doctor, I had to press for them to see him the next day at the clinic. Why couldn't I have just left it alone? Why didn't I just let him be? Why am I doing this to our family? Why is God doing this to us? To him.

By the time we reached the house, most of the car was asleep. It was completely dark except for one bright star in the sky. (Though I'm sure it's a planet, because it doesn't twinkle - and someone recently told me that planets don't twinkle.) The crickets were chirping and the night was still. The children were already in their homes for the night, and ours were ready for the trip upstairs. I came inside, ready to pack a bag for the day and arrange things for the morning, and am compelled to check one last time for any calls or emails. I found comfort in the words of friends and family, and see that we are not alone in the quiet of this night - no matter how lonely we may feel. Our friends are near, our family is nearer, and God's hands are going to carry us all through.

By the time you read this post, we'll likely be on our way to the hospital or there already. We'll be wrapped up in the time and commotion of getting there and settling in. But, the silence will come again like it always does, and it will bring with it those irrational fears and terrible thoughts. And, we will pray - harder than we've ever prayed in our life. And God will hold our boy when we cannot any longer.

The fight begins

Today began the fight for Jackson.

First it was ambulatory care at the hospital. They called to confirm
the sedated MRI on Thursday, and to give us the instructions. He
cannot have breastmilk for six hours before, but if he were six months
old he could. It makes no sense to mandate some arbitrary age. I
asked why and she said, "It's been that way for the six years I've
been here. I'm not sure." I said that the studies show 4 hours is
adequate for digestion and she just reiterated that she wasn't sure
why, but that the orders come from anesthesia. So, no breastmilk for
6 hours before, meaning he can't nurse when he wakes up and is going
to be hungry (and cry) from the time he wakes up until his
MRI. He is allowed juice or water three hours before, and we've been
working every day on getting him to take a sippy cup or a bottle, and
he won't. At all.

I asked about the sedation. She said that they will "put him under
and then page us when they're done." I pressed. I wanted to know if
we could be there, how they will do it, etc. She said it's up to the
anesthesiologist, but that they typically either put in the IV and
then put him under or gas him and then put in the IV - but, that
because of his back curve they want to monitor his airway and they may
not want to gas him first in case of an airway problem. I said, "I
don't see how having in an IV is going to impact his airway - if he
goes into respiratory failure, won't they intubate?" She agreed, but
said that it's up to the anesthesiologist and they just like to have
that IV in before when there's an airway issue. (Jack has never had
oxygen, never had a breathing problem.)

I asked about the IV. The practitioner he saw said that the numb the
IV area. I asked, to confirm, and was told that they don't like to do
that and don't like practitioners to say that. She said, "If he has
small veins and we numb, there's a chance that we'll have to do a
second stick." I said, "Well, his veins will be small from dehydration
anyway, since he can't have anything to eat or drink for hours
beforehand, right?" She just agreed. She said they typically put in
the IV in the hand of the foot, depending on where his veins are best.
I can't see any in either place.

She then said that they'll either have us in the room when they gas
him, or they may opt to "have you say your goodbyes and take him back
before they put him under." He cries when the waitress gets too close
at a restaurant, and I'm supposed to hand him over and let them put
him under in another room? With the knowledge that he could go into
respiratory failure? Shall I just sit with my hands folded and wait
patiently, then?

I'm so frustrated and upset. This is NOT what we were told would
happen. This is NOT what we want to happen. Just because he's an
infant THEY get to choose? I know this needs to be the safest thing
for him, but I don't understand why they can't help him to not feel
pain, or at least not as much pain. I can't even nurse him for
comfort, which is documented to relieve pain. I am SICK over this -
positively sick.

I heard, "Come by and drop off your starving baby so that we can take
him in the back and stick him with needles without you here and
without comfort measures - and if something goes wrong, we'll just
page you and let you know after the fact."

We also called Shriner's to see if they'd cover his helmeting and they
said no, but referred us to another organization who may help. But,
in order to help, we have to get a denial from insurance. In order to
get a denial, we have to have him casted, and in order to have him
casted, we have to pay for it up front.

Shriner's did say that they get at least two calls a week for this,
and that it's so frustrating because insurance claims they're
"cosmetic and unnecessary, which, just flat out isn't true!"

If you click the little icon in the bottom left (I think it's a word bubble shape) it will turn off the captions.



Because of the severity of his scoliosis, it causes him to pull to the
left and his head was flattened on that side. The difference in
measurements from the left side to the right side (diagonally from the
front to the back) is 10mm, meaning he has mild to moderate positional
plagiocephaly. It was recommended that he have a helmet to help the
shape, which he will wear 23 hours a day.

We have to return to the lab to have his head cast and his helmet made
some time next week. Today we left the house at 6AM to drive to
Kirkwood, then to the hospital in time for our radiology appointment,
and by 10 AM when his appointment was over, he was done. He fell
asleep before we were out of the parking garage. Since we have to
return this week some time (or next) to get his back brace fitted,
we'll just do the casting of his head then.

The helmet is rigid and will be measured around the fullest part of
his head. Essentially, as his head grows, the space that is now flat
will fill itself in. The chance of him having a total success in
helmeting is slimmer than that of a younger child because his bones
have started to harden, but we should be able to see some results.
He'll need to go to follow-up visits every two weeks for re-shaping
and re-positioning. They said the average length of time for
helmeting is 4 months.

This is also often not covered by insurance, despite the fact that
it's related to his scoliosis, because they don't feel that it
interferes with his functioning. I wish we new a good laywer. :) We
plan to appeal and appeal again, but will essentially have to pay for
it out of pocket and try to get the insurance to reimburse. The NP we
saw today said she's only seen one ever be approved and she thinks it
was an accident, since it was a set of twins and only one twin was
approved. In order to just have him casted is $500 down, so we're
hoping we can get something rolling with insurance because the payment
plan is ridiculous. It makes me so upset for the low income families
- they don't bother to tell you this until the end of the appointment,
and how easy is it for most families to just come up with $1500? It's
ridiculous. They should have some sort of disclosure when you call
for the intial appointment, when they know what insurance you have.
Such an unfair system.

We are increasingly concerned as the days pass, getting closer to the
MRI on Thursday. Jackson will be under general anesthesia for the
procedure and it is not without risk. Please continue to keep him in
your prayers and I will update more after the MRI on Thursday.

Jackson

Over the last few months we've noticed Jack has some distortion on his head. We knew the likelihood of positional plagiocephaly (flat head from sleeping on their backs, usually) and moved him out of his infant carseat in the last month entirely to help him. It's usually not a big deal and corrects itself when the baby becomes more active. However, we noticed Jack had sort of a pulling toward his left side of his neck, had some facial asymmetry, and was crawling funny, so we called the doctor.

We just got back from the doctor. I'm still sort of processing everything.

He definitely has positional plagiocephaly, but the doctor isn't terribly concerned. He held Jack's head in his hands, and had John hold him down low, and looked from up above to see where we stand. Basically, we can opt to treat it with an appointment at the children's hospital (orthotist?) or we can leave it and see what happens. He said it's purely cosmetic and most children outgrow it - the fact that Jack just got out of his seat and is already showing improvement is a good sign that he'll outgrow it and it will improve with age.

We've decided, since it isn't urget, that we'll wait until his 12 month visit and check his progress before we opt for treatment.

However.



However. When he was doing the exam of Jack's head he noticed something on Jack's side. He asked John to remove his shirt and this time asked to hold him so he could feel his torso. He has a large protrusion from his right side. John said he's noticed before, but always thought it was just how Jack was sitting. The doctor said if we leave his shirt off more often (which we, of course, seldom do) we'll notice it more often. After holding him for a bit and evaluating his torso, he said Jack has a very rare torsional deformity and scoliosis.

He said there are two types of scoliosis (the curvature one that they always checked for in grade school) and the torsional - which is a twisting of the spine. He said it's virtually nonexistant in male children. Basically, Jack's spine is twisted, or rotated, several inches. His ribs are that protrusion on his right side and it's somewhat sunken on his left side.

We don't know anything beyond that. He's referred us to a specialist at Children's and we have to call them in the morning. It was a very long appointment. He said between the positional plagiocephaly and the torsional deformity, he's much more concerned with the latter. He said if this is a lifelong problem, we may want to seek out two opinions (at Children's and Cardinal Glennon Children's Hospital).

On one hand, I feel blessed that there was nothing wrong with his head, his brain, neurologically-speaking, I mean.

On the other hand, I'm sad. I feel guilt for not having seen this myself - I'm his mother! The hundreds of times I've nursed him and I didn't see this? The dozens of times I've bathed him, and I didn't see? I can't help but wonder why, and when, and how. This is all totally raw and I'm sure I'll gain some perspective in the morning, so bear with me, but I just...don't understand, can't comprehend.

He moves amazingly well - he has this way that he kicks up one leg to thrust himself forward. Things are clicking now, in hindsight. He is brilliant and beautiful and sweet and my life - and if he has a mobility issue, we'll figure it out. But, I think it's just in our nature to want someone - something - to blame, and in our nature as mothers to blame ourselves.

I'm anxious to get some real answers and real options. I googled and googled and googled on the ride home (thank goodness for John's blackberry) and, apparently, it IS very rare because I can't find a darn thing on it that isn't a medical journal.

So, that's all I know. I'll keep you more updated as we know more. I have NO idea what this means, at all, or what they'll say at Children's, but I thought you'd want to know (and it helps to get it written down).

Success and Sadness

My little sister is an actress and recently filmed this PSA on drowning. I'm conflicted by both my pride in her success and her amazing performance, and the tremendous sadness in the fact that this service announcement needed to be filmed in the first place.

Be forewarned, this is a real 911 call and very sensitive material.

Step by Step, 10 months

YAAAAAY, Big Boy!