A happy accident

Standard

There are times when it’s amazing how quickly life will come at you. It’s akin to a game of hide and seek with a count of only two (one, two, ready or not here I come). This past week was definitely one of those times. We took a few lumps, but it was a week that I’ll dare say that we’ll never forget (in a good way).

Megan had her regular scheduled pamidronate infusion this week. It was a week in which I thought we might slide into our new routine of work, preschool and hospital visits without much resistance. I believed that because we had eliminated the surgery part of the hospital visit that everything would go as smooth as silk. Of course that was a ridiculous notion because nobody’s life actually goes that way. We kicked things off with the slight hiccup of the hospital not having a room available. Flu season has been so bad this year that there are sick kids galore. That meant that Megan and Les stayed in the lobby of the hospital for half a day until someone was discharged and the room cleaned and made ready for a new guest. That’s not a huge deal, but it is a little worrisome to be stuck in the lobby of a hospital that’s full of kids with the flu when we’ve been told that Megan might not survive a case of the flu. The other thing is that this delay pushed back the schedule of the infusions which pushed back the discharge time on Thursday for Megan which would prove to be a the first domino in a frightening series of events.

Schedule hiccups aside, the treatments went well and there wasn’t very much that was notable to report. Megan is just such a little trooper and really rolls with the punches. The only thing that had seemed a little odd during the course of the treatment was that Megan cried quite a bit when the nurse accessed her port, which was a bit unusual. Out of an abundance of caution before Megan was discharged on Thursday they decided to take some x-rays to make sure that everything looked good, especially that collar-bone under the port. Those x-rays have certainly made me feel foolish as I’ve been typing and bragging about how well things have been going with no broken bones in sight. The reality is that there are plenty of broken bones, but we just had no idea. Her right arm had been broken in two places mid-humerus and upper humerus, she had rib fractures too numerous to count and her clavicle appeared to have a small break. It was really disconcerting to hear about all these breaks as we really didn’t know directly about any of them. There were days that she had been a little fussy, but we had been wondering if it was normal baby stuff like teething… apparently not. While these x-rays gave us an idea about the breaks that we had missed, the more critical thing would be that they had set a baseline for the many x-rays that were coming.

With the treatment complete and x-rays done Megan was discharged and my Mom, Les and Megan headed for home. This is when our routine little week definitely took a turn. The girls only made it about half way home before someone turned into an intersection directly in front of them as they were going through causing an accident. If they hadn’t been late in getting into the hospital room on Tuesday, they never would have been at that intersection then. Complete chaos immediately ensued. Both airbags had been deployed in Les’s car and the horn was going off. Les jumped from the drivers seat to the back to check on Megan only to discover that Megan had completely flipped over inside her car bed and was face down and pushed to one end. This was inside the car bed that afforded absolutely no protection in a crash according to the car seat tech who installed it at St. Joseph’s. Needless to say everyone there was absolutely panic-stricken with fear. I got a call from my Mom that they had been in an accident, so Pete and I who had just gotten home jumped into the car and took off toward the scene. We arrived fairly quickly and found fire fighters, several police officers, two very scared ladies and an ambulance with Megan inside. After answering a few quick questions Leslie and Megan headed to Children’s hospital in the ambulance while my Mom, Pete and I stayed on the scene to get the car towed and finish out the paperwork. After finishing up at the scene I took my Mom and Pete home and I headed to Children’s to check on my girls.

We’ve since learned from our insurance company that our car is totaled (although since the other driver was at fault we’ll have to make sure that their insurance company is on the same page before it’s official). I should also go ahead and say that the driver and passenger of the other vehicle were fine. However, as you might quite naturally expect there were indeed injuries in the vehicle of the girl who suffers broken bones from gentle handling by her parents and nurses. Go ahead and take a moment to formulate the end of the story in your mind. To me, the end of the story seemed perfectly obvious and terrifying at this point.

When I arrived at Children’s Hospital Les had already been there with Megan for over an hour feeling there was a decent chance that she was sitting there watching our daughter die from her injuries. Megan had been crying pretty well non-stop since the accident, which is totally out of character for her, so she seemed very clearly to be in a good deal of pain. I walked in as they took the last couple of what had been a ton of x-rays. Fortunately there were the films from only 2 hours earlier to compare the new x-rays to in order to distinguish any new breaks from the old. Les and I headed back to the ER from Radiology with Megan to await the results of the x-rays. By this time members from our church were arriving to sit with us and see how Megan was doing. After a fair amount of waiting in order to give the radiologists enough time to read all of the x-rays, they came in with the news. To our absolute amazement Megan had no new acute fractures and no internal injuries. They did make note of some compressed and fractured vertebrae, but all of those seemed to be old injuries. Before too long we were discharged (again) and headed home with Megan.

Is this story going like you thought it would so far?

It seems like no small coincidence to us that the corner where the accident occurred was the same corner where the cemetery is that we had selected for Megan. Remember we were thinking she wouldn’t survive birth. I suppose as they passed by, that cemetery decided to reach out and make a grab for my little girl. I’m so glad that it didn’t work.

Wait, wait, you might find yourself saying… I thought you said that there were injuries in this accident. I did say that! The following morning Les went to the doctor to get her arm looked at as it was hurting her. It was broken. So the girl who breaks under gentle handling was flipped over in her seat in a car that was totaled and sustained no injuries. Granted, she’s been a little uncomfortable and not really moving some of her limbs right now, but there aren’t any bad breaks. There’s no earthly explanation for that one! My Mom also made it out with only the typical post accident soreness. When Les called me on her way home from the doctor to tell me that her arm was broken I just had to laugh (By the way guys, this is not an appropriate response for when your wife breaks her arm and you’ll pay the price for your laughter… trust me).

This Sunday was baby dedication day at church and though the odds had been against her, Megan was there. We weren’t about to be deterred by the fact that we were in the middle of the snow storm that would eventually dump about a foot of snow on us. Actually, not only did we go out despite the bad weather, we then came home and built a snowman. Today was a triumphant day for our family and friends. Les and I cried when 8 months ago there was a baby dedication service at our church. At the time it looked like our daughter wasn’t going to survive and the service was a painful reminder of what we thought was coming. Now here we sit on the other side of the baby dedication service! Despite all the difficulties and complications we were able to be there and pledge to raise our daughter in the nurture and admonition of the Lord and have the support of our church family along the way. What a fine day!

There was a moment as we sat in the ER that we were wondering what God was doing in this scary situation. We were absolutely certain that our daughter was broken to pieces. It turns out that wasn’t the case at all. I guess on some occasions it’ll be made perfectly obvious to you what the Lord has been doing. This was one of them. There are many times where we may be afforded the protection of not having a wreck or not getting sick or whatever the case may be. The problem is that you don’t know it. How would you know that God had stopped something from happening? After all… it just didn’t happen. Sometimes you need a scenario where you can plainly see God’s protection in your life. Here was a case in which a terribly fragile girl was in an accident and was perfectly fine while her healthy Momma in the same accident broke her arm. How on Earth does that make any sense? Simple answer… it’s doesn’t! I hope that this will always come to my mind when I don’t understand what God is doing in my life and I can’t sense his presence. When I find myself in that situation I can think back on this happy accident and remember that although I can’t always see it or understand it, our God is always at work in our lives.

Point 5

Standard

17-1

We just wanted to do a quick post just to celebrate. Celebrate what you might ask. Well… I’m glad you asked. Megan is 6 months old today (point 5 as I like to say)! Normally a celebration for turning point 5 might seem pretty silly, but when every day is such a blessing and a gift it’s definitely worth taking note. It’s been a wonderful 6 months and she absolutely has to be the best baby ever! Things have really gone wonderfully for us and that’s in large part to all the help and support that we’ve gotten. It’s been incredibly humbling. The Lord’s provision is bountiful!

While I’m sitting here typing, I may as well do a brief update. Megan goes back to the hospital for infusion #3 next week (19th-21st). This will be her first treatment without surgery to kick it off, so we’re hoping that means that everything will run smoothly (although I won’t hold my breath). Then the following Sunday the 24th is the baby dedication at church. Since we had originally thought that the only time a preacher would stand over her would be a very different occasion, this is especially exciting. It’s also the same Sunday that they’ll introduce the new candidate for pastor and we’re looking forward to hearing from him. Thanks to all for the love and support!

Heading in the right direction

Standard

Well, it seems as if I have a lot of catching up to do. It’s amazing how time can get away from you. Since I have a lot of ground to cover to get through the last month I’ll pick up where I left off and try to get through everything in as orderly a fashion as I can. I’ll go ahead and admit that I don’t have a clue what all to say, so I’ll just shoot from the hip and hope I manage to relay the important stuff.

To start with I should update everyone on Megan’s last treatment. Things really went much better than we expected. We were sitting in the prep area of the operating room at Children’s Hospital being briefed on all the details of the PICC line placement when things veered off of the planned course of action. There was just the PICC line nurse and the anesthesiologist scheduled for the OR this time as a surgeon was unneccessary for the PICC line placement. About 5 minutes before the procedure was scheduled to begin, in popped the surgeon that had done Megan’s skin biopsy from her first treatment. She said that her schedule had cleared up and even though Megan was scheduled to get the PICC line she felt like we could go ahead and put the medi-port in. We were really surprised as Megan was a full half a pound shy of her 11 pound weight goal. The surgeon just poked at Megan’s baby fat a little bit and confirmed that there was enough pudge to go ahead with the port. We probably saw the surgeon a total of three minutes as she gave us a quick rundown of her plan, dismissed the PICC line nurse and described what the port was like (she likened it to a rolo). It was an abrupt change, but one we were excited about, so off we went!

Megan did really well during the surgery and within 45 minutes or so they were calling us back to the PACU (Post Anesthesia Care Unit) to sit with Megan before we could go upstairs to a room. It wasn’t very long before we shot up to the 8th floor to what’s surely (and unfortunately) going to become like a second home. After the usual parade of people and chaos that goes on in hospitals, Megan’s first treatment got underway. The next few days went smoothly (that’s easy for me to say as I was at home in my bed while Les was the one on the lumpy fold out hospital bed) even though Pete wasn’t allowed on the floor due to cold and flu season. This time though we had help from visiting grandparents and that really made things much easier. The rest of the hospital stay was uneventful and Megan got discharged right on schedule. The next time we go in will be even easier as we can skip the scary OR part of the process all together because of the port. Megan’s tiny little port is on her left upper chest just below her collar-bone. It’s not nearly as obvious and obtrusive as we thought it might be. For those who are interested I’ll do my best to briefly describe the thing. It’s essentially a small titanium bowl with a silicone hockey puck lid. The basic premise is that you poke a needle through Megan’s skin and through the silicone puck into a chamber in the bottom of the bowl that has a small catheter (tube) that runs out to just above Megan’s heart. Then you can insert IV medication and draw blood without having to stick in an IV in her arm or hand. All we have to do is go and get the thing flushed once a month. Not too shabby! It’s amazing what modern medicine can do!

That’s it for medical treatments in the last month as Megan has happily stayed free of major breaks. We suspect that she may have broken a rib or two and perhaps a finger, but nothing that would send her back to the doctor. We’ve learned that finger and rib breaks you’ll eventually lose count of, so why bother? Helpful tips on things like that have been coming from a woman that we’ve met in the Denver area who has a severe case of OI. She’s an absolutely amazing woman and has been really wonderful to have had as a resource not to mention the fun gatherings we’ve had for meals together (they stopped counting her broken bones at 100) . She’s very bright and funny and has been studying for the GRE so she can pursue a Master’s degree. The possibility of a future like that for our little girl excites me. I greatly admire her spunk and tenacity in the face of great adversity. She is 24 years old, 3′-3″ tall and weighs in at 40 lbs. Amazingly, Pete is taller and heavier at 3 1/2 years old than she is. However, having spent a little time with her I know that she’ll be able to accomplish whatever she decides to set her mind to which gives me wonderful hope. Although, before I get too far ahead of myself with all this future college business, let’s keep it simple and set our sights on solid food with a distant view to potty training.

Thanks to the generosity of so many people from all over the place, we had a very merry Christmas! Les and I kept it simple with only some fruit and nuts in our stockings, but the kids racked up! We were able to get the word to Santa about some great things for Megan based on a few recommendations from her Occupational Therapist and Pete had only been marginally naughty and was able to score on his Christmas wish list. It was truly a Christmas extravaganza complete with 6 hours of present opening as Pete likes to open something and then spend a half an hour playing with it before moving on. We loved it! The only downside to our holiday was the stomach bug and bronchitis (including a 104 degree fever) that sidelined some of our holiday revelers for a few days. Oh… that and the dog bite (Fin really is sweet though and Amanda just had it coming).  The very best Christmas present may have been Megan’s Medicaid Disability coming through. There are still a few kinks that are being ironed out, but that will be a huge weight off of our shoulders once everything gets squared away. Even with what is really pretty good insurance the medical bills were piling up and we had been stalling on payments trying to get everything in order. The major questions still lingering are what Medicaid program are we even on anyway and will it backdate to Megan’s birth like it’s supposed to because right now it’s not. I’m sure that it will all work out in due time though.

The new year has found us very busy as my work is keeping me cranking away some nights and weekends right now and Les is working constantly with Megan to keep her developing at a good pace. I’ve noticed that while it seemed like there was something new each and every day when Pete was a baby, Megan doesn’t move at that break neck pace (that might have been a poor choice of words). Anyway, some of that is to be expected and Les has been working really hard and doing a wonderful job at keeping Megan progressing at a steady pace. Megan is undoubtedly the happiest baby that I’ve ever seen despite all her problems. She smiles and laughs out loud all the time now. She and Les will just sit there and play and laugh for hours throughout the day. It’s really amazing! She’s picking some things up and bringing her hands together and to her mouth. She’s starting to tug at her canula and you can see the impending battle that’s going to come very shortly.

Even though we’ve been really busy we’ve still had some time to reflect on the past year and all the things that have happened along the way. It was just last April that we first learned that something was amiss with our perfectly planned pregnancy and that seems like it has already been years ago! It has been without question the greatest year of my life! It could easily have been something different entirely as when our plans don’t work out it can be utterly crushing. It’s so easy for us to take our plans and elevate them beyond anything and anyone else in our lives. We pray, “Oh Lord, bless my plan” and use God as a means to an end as if he were the cosmic candy store. Then when our plans don’t succeed we can become hopelessly bitter, angry and broken people. In the past year I have been brought low and have had a lot of truths revealed to me. I’ve come to understand that when I have those angry and bitter feelings it’s because I believe that my plan is better than God’s. I don’t want his plan for me… I only want mine. When I begin to think that way it’s because I can’t possibly believe that God is love, that he has a perfect plan and that he works these things to my good. Head knowledge of who God is isn’t always enough to strip away my radical self-centeredness. Let’s face facts… I’m a product of the most individualistic society that has ever existed. No other culture has operated in the way that this culture currently does. When the trials of life come upon us and we’re being tested and refined in the fiery furnace… it burns (of course, it’s fiery)! We as individuals are ill-equipped to deal with these things, which is a fundamentally life changing realization. That realization can either paralyze you or set you free if you know where to look. Not being able to do it alone strips away my pride and inflated sense of self. I takes me away from worry and anxiety over being able to handle the situation (I already know that I can’t). In Matthew 11:28-29 the Lord calls us to step into the yoke with him. When you’re yoked to the Lord who does all the work? I’m able to enjoy the fellowship and closeness afforded in a yoke while knowing that I am there because of radical love. That’s not a burden… that’s freedom! If I could go back and change anything this last year in my life, I wouldn’t. Megan is the most incredible thing that has ever happened in my life and the man that I am today is hardly recognizable from the man that I was a year ago. I wouldn’t change a bit of it. My job is better, my marriage is better and pretty much everything else that’s actually important is better (I know the difference now between important and not). We have such a long way to go and much to learn, but we’re definitely heading in the right direction.

Megan… your worst nightmare!

Standard

I’ve been getting a lot of flak lately for not being more faithful in distributing up to date information. You people just don’t understand! I’ve been (insert lame excuse here). Ok… so maybe you do understand. The holidays are a wonderful time of fun and family that leaves everyone exhausted and a little behind on their to-do lists (not to mention a few pounds heavier). At least it’s that way when you throw in some deadlines at work, refinish some furniture at home and participate in the cookie exchange at church. That’s my story and I’m sticking to it. I have bags under my eyes and my pants are a little snug, so I’m well on my way to a very merry Christmas! At any rate I’m happy to report that things have been going really well the last few weeks.

The first bit of good news is that after a trip to her doctor Leslie can happily report that she’s hernia free. Let’s be honest… isn’t that what everyone wants for the holidays? Turns out that all of the issues were due to the suchres from her c-section becoming inflamed or irritated or something. We’re definitely happy to put that issue to rest. The best news of the last few weeks is that Megan has been break free (so far as we know). I never imagined when we talked about having a second child that we be celebrating that sort of news, but we do. Don’t take anything for granted… not one single day of good health and happiness. If there’s anything that conditions like this one will teach us it’s to make the most of each and every day. You can’t assume anything in this fallen world! No family ever plans for this sort of thing.

It’s on that note that I’ll say what a heavy heart we’ve had over the mass killing in Newtown, Connecticut. I can’t imagine what those families must be feeling. I keep picturing a family with a Christmas tree under which are wrapped presents that will never be opened. I dare say that these families will probably never see Christmas the same way again. At the same time I also have to say that without the reason for the Christmas holiday there would be no hope or possibility for peace in a situation like this one. I’m so thankful that there’s a place that I can take a confused and aching heart for solace. Or, maybe I should not say to a place so much as to a person. The city of Newtown has our heartfelt and earnest prayers this Christmas season.

Megan starts her second Pamidronate infusion tomorrow, so we’ll be heading to Children’s Hospital for what will become our routine 3 day stay. We’ll have to go to surgery for at least the next two stays as she’s not heavy enough to get the medi-port that would allow us to skip the surgery part from here on out. Perhaps she’ll weigh enough on the next visit (I can almost guarantee that if I slipped a little egg nog or a crumbled up cookie in her bottle that would do the trick… it certainly works for me). At any rate since it’s cold and flu season, Pete won’t be able to visit Megan during this stay. We’ll see how well we can distract him from the fact that his Momma and Megan won’t be around for the next few days. We have some Grandparents out from Alabama to run interference for us and maybe that will do the trick. We’re really hoping that this time will go a little smoother than the last time with the PICC line and our insurance. That could be wishful thinking as our insurance company just sent us an explanation of benefits yesterday for the first Pamidronate treatment which was $31,000 and generously offered to cover $50 of it. Needless to say, we’ll be speaking to them about that one. What can I say Mr. Kaiser… Megan is your worst nightmare! Those guys just don’t jump in to throw money around without some prodding.

We’ve had a lot of fun the last few weeks with Christmas decorations, guests and zoo lights at the Denver Zoo. That’s not to mention the highlight of the last few weeks, which was Pete’s Christmas progam at school just this morning! He and his class sang Joy to the World, Gloria and The First Noel as a kickoff to a little play called The Cutest Christmas Cupcake that was being put on by the church. I was cast in the role of the proud father in the crowd with the video camera (you know the type). All the kids really did a wonderful job. We finished everything off this weekend by riding around looking at Christmas lights and singing Christmas carols. It made for a day full of great joy! I know what you’re thinking… Christmas lights and carols in the car… be sure to call me next year before you head out! Will do!

Dueling Banjos

Standard

After a blog hiatus of a few weeks without a new post I’m once again ready to play catch up to let all of our friends and family know what’s been happening. If you asked me briefly what we’d been up to I’d say something like, “Well, I’ve been working and sleeping some. Les has been caring for Megan and sleeping less. Pete has been going to preschool and sleeping quite a bit. Megan has been drinking milk and sleeping a lot.” That about sums it up, right? I guess at this point I could post some pictures and call it a night, but I’ll try to expound a little for the sake of those who’d like to know a little more about how we’re really doing.

While it feels as if it’s been a mundane couple of weeks there have still been plenty of things happening. We had a couple of nice visits from family with Les’s cousin Jessica and Aunt Carolyn (Terry’s, though she came bearing oatmeal cookies from Paul Jr’s) staying with us for a weekend and my Dad spending a few days with us in between a mission trip in Mexico and a conference in Chicago. Both were really enjoyable visits that served as great help and very welcome distractions. We also have had continued visits from friends and acquaintances all over the Denver area who bring meals and stop by to let us know that they’re still thinking about us. The outpouring of support has been absolutely staggering and life changing. It’s hard to be the recipient of so much love and heartfelt generosity and stay the same as you were before (thank goodness). It’s truly remarkable to see how much one very little girl can open the flood gates of kindness in our lives. My words cannot possibly express how deeply grateful we are for each and every person who has expressed love and a willingness to jump in and help or sent wonderfully thoughtful gifts.

While all of that warm fuzzy stuff might make you want to sit back and reflect on happiness or bask in the bright light of generosity, life has tried to catch back up with us and keep us too busy to relax. The handle broke off of our kitchen sink so I spent a night with my head in that base cabinet replacing it and working on our 50-year-old plumbing (scary, right). Then that very night I noticed that the bathroom faucet had a drip. Within about a week’s time the drip had turned into almost a steady stream, which turned into another plumbing adventure. While the faucet replacement itself went pretty well it has left me with a flexible waterline that’s now leaking in a spot that I never touched it. I guess that just being manipulated was enough to do in that piece of piping. I need to fix that soon, but here it is Sunday night and I didn’t make it to the hardware store for the necessary replacement parts this weekend. Hey… there’s always the Thanksgiving Holiday! We’ve also started a furniture refinishing campaign in our house. Switching to one income definitely rearranged our plans of replacing all of our hand-me-down furniture in the not too distant future. Once the older antique pieces became more permanent, we decided a face lift made a lot of sense. The furniture has been moved back and forth from houses and apartments all over the place multiple times and the dry Colorado climate hasn’t been particularly kind to it. I know that at the very least they’ve spent time in Florida, Alabama, Indiana, Kentucky and now Colorado with multiple stops in a couple of those states. The truth is that I know that Great-Grandmother Garrett would be proud that her furniture has been such a useful bunch of stuff and quite honestly I’m more thankful for it all now than I’ve ever been! I have to say that the dining table in particular is especially impressive. We don’t have a dining room and our kitchen doesn’t have a lot of real estate for a table. That little old table is cozy for 2 people and with 2 drop leaves and a couple of insert leaves it can comfortably sit 12 people when we push our living room furniture aside and have a BYOC gathering (bring your own chair). Anyway, that’s a lot of information about antique furniture for a blog titled Miss Megan Clara and I sense some of you losing patience so I’ll move it along.

Megan has really been doing pretty well. I cannot stress what a great baby she is often enough. She sleeps through the night fairly regularly though you have to stay up a little late to pack her full of milk and get up early to get her filled back up in the morning. She’s incredibly easy-going and she’ll sit around with you for hours and be wide awake and not make a peep. She just enjoys taking in all her surroundings. She’s very alert and pays attention to whoever is talking or singing or whatever they may be doing. I’ll go ahead and give some inane doting parent babble about how awesome I think my kid is because she can now bring her hand to her mouth and lick her finger. That may sound strange, but we really are pretty excited about it. While there have been a couple of days that we were concerned about how she was feeling we’re thinking that she might not have had a new break in several weeks which makes it seem that the Pamidronate is doing its job. After I adjusted her head on her pillow she cried about her neck positioning for a few days and she also cried for a few days after getting an RSV vaccine shot (her doctor thinks it stuck in her bone). Past that it’s been an uneventful few weeks for her bones which is great news! She had a doctor’s appointment on Friday this week just for a quick check-in which wasn’t all great news, but nothing to get too worked up about either. When asked how long Megan might be on oxygen her doctor ventured a guess of years. She also said that some of her past patients with severe cases of OI have been on oxygen for life. While that isn’t what you’d like to hear it’s not really earth shattering either as we’re currently dealing with that and it’s somewhat inconvenient, but manageable. The most unfortunate piece of news was that Megan has lost a little weight. She’s only 9 lbs 4 oz now. It only took those couple of rough days of being uncomfortable and crying to fall behind on her feedings enough to lose some of the ground that we’d gained. Based on that information her doctor told us that she won’t be ready for the medi-port and will have to get another PICC line. Again, not great news but we’ve done it before so it’s manageable. Finally, her doctor gave us very stern warnings about getting sick, especially with the flu as a tough illness for a little girl with a compromised respiratory system might quickly be fatal. Duly noted… I’ll try not to get the flu. We’re currently in the process of scheduling her next surgery and treatment which looks like it will fall sometime the week before Christmas. We’ll keep everyone posted.

It may be that the biggest piece of medical news coming up might not involve Megan at all. Remember all of the furniture I was talking about? Well, Les decided to not wait on me and to carry an end table up the stairs from the basement by herself and now has what we fear may be a hernia at the top of her c-section incision just on the North side of her belly button. We’ve described what’s going on to her doctor via email and she suspects that it’s a hernia, but we haven’t been able to go in and see her yet. Hopefully we just won’t end up with dueling surgery schedules which isn’t nearly as entertaining as dueling banjos (although it does include some of the same slack-jawed stares). On that note, I’ll wrap this up. I’ve included a random assortment of photos from the last few weeks including our scavenger hunt, some fall foliage at our house, the sunset the night Megan was released from the hospital and some cute baby Megan smiles. Enjoy!

Infinite Love

Standard

There are some things that are so unbelievably heavy on my heart tonight that I simply have to write about them (I was supposed to be writing some specs tonight). I can’t explain it, but it’s something that I’ve been thinking about for a long time now that simply cannot wait any longer. Perhaps someone will read this and the urgency of these words and its timing will be apparent to them, but at this point it’s not apparent to me. I simply know that I cannot go to sleep until I’ve written them. There’s a story that has to be told that could very easily have been our story, but by the grace of God we’ve had a very different experience. It’s a story that’s inextricably linked in my mind to the journey that we’ve been on in the past several months. I’ll do my best to be as honest to my thoughts as I can be as I write this, but I must confess that this is by far the most difficult post that I’ve written. This is a story about love.

Leslie and I found out that something was amiss with the way Megan was growing and developing way back in April. It feels like that was forever ago, but it’s been only 6 months. Without a doubt it’s been the longest (and most remarkable) 6 months of my life. Upon the receipt of news that we could view as nothing short of completely devastating we struggled to understand and find meaning. It’s a struggle that I can’t say is entirely behind us. A couple of months later we learned through the String of Pearls Foundation that there was another family in Denver going through an almost identical circumstance. At this point I’d love to go into great detail about String of Pearls and the wonderful work they do, but I’ll keep it brief and say that Laura has been a tremendous and steadfast support in our life ever since we first met her (if you’re curious a link to her website is at the bottom of the homepage of this site). To have another family in the area going through the same type of situation was remarkable as the severe types of OI aren’t exactly commonplace. Not only are these situations not commonplace, but the number of people who decide to move forward with a pregnancy with this type of diagnosis is rarer still. While our doctors had somewhat beat around the bush and asked what we might do with a diagnosis once we received it (A question to which I sat naively silent and somewhat bewildered until Les chimed in from next to me and said, “We won’t terminate.”) they had felt outright pressure from their doctors to abort. Even with that pressure, this family was still able to make the only decision that they could based on love and moved forward amid all the concern and uncertainty that accompanies these situations. They desperately wanted to meet their son Logan.

We first met Jamie and Andy Stewart on Sunday the 5th of August. Just that Thursday before I had been out touring cemeteries in order to be prepared in case Megan did not survive birth. Leslie had been to the cemetery to see the spot that I had tentatively selected earlier in the day on that Sunday. It was a surreal time in all of our lives as we were all attempting to navigate the tempest. We met at Starbuck’s in the REI that sits at the confluence of Cherry Creek and the South Platte River. In the little time that we spent there together that day telling our stories and sharing our fears, a powerful bond was forged. It was really odd and extraordinarily liberating to reveal some of your deepest and most intimate thoughts with a couple who had only a few minutes before been complete strangers. It was as if we were meeting some old friends again for the first time in a long time and while we had a lot of catching up to do there was still our common background to link us together. Luckily for us Pete cooperated and allowed us to carry on an adult conversation without becoming overly restless. Once Pete could finally sit still no longer we adjourned to outside underneath the trees to allow him to run and play while we continued to talk. It was a very special time for us as Jamie and Andy’s faith and love lifted our spirits as I think ours did for them. The jolt of strength that we received that afternoon was just what we needed to help us through the days ahead.

The following Tuesday afternoon Leslie received word from Jamie that her water had broken and she was in the hospital. Any glimmer of real hope for Logan’s life seemed to be fading as Jamie who was 10 weeks behind us was only 27 weeks pregnant at the time. Severe OI may be doable… and 27 weeks may be doable… but severe OI at 27 weeks seemed utterly insurmountable. Leslie and I went to visit them that night as there was really nothing in the world that could have kept us away. Jamie and Andy’s spirits surprised me and while I had come to give support I ended up getting more than I think I could have possibly given. It was here that we first met their families who have since been wonderfully kind and loving to us. Leslie (who was dramatically pregnant at this point measuring something that should have been weeks and weeks overdue) was also able to visit them the next day as well as they waited to see what would happen and if perhaps God might grant them the miracle for which they had been praying. It was during this waiting period that one of the doctors offered Jamie a shot that would stop Logan’s heart. I only wish that I had been present with the wherewithal to politely accept the shot and then ask the doctor where exactly on him I should stick it (I imagine it would have been just adjacent to where his stethoscope was hanging). I suppose (unfortunately for him) he just had no concept at all of what love is.

Logan Andrew Stewart was born on Thursday August 9th, 2012 to amazing parents who could not possibly have loved him any more than they did. They had been very concerned that they might have no time with him at all, but they were mercifully granted enough time to hold him and tell him how much they loved him. Logan lived for just under an hour before his brief, but remarkable life on this earth was over. Leslie and I visited later that afternoon to both hug Jamie and Andy and to meet and say goodbye to Logan. It was one of the most difficult, but rewarding experiences of my life. I dare say that I’ll never forget meeting Logan.

Jamie and Andy visited us the next week in the hospital as Megan was born the next Tuesday the 14th. They were there after she was born and returned the next day to meet her even amid the planning for Logan’s funeral. Later that week Logan was laid to rest in a private service for them and their families. On Saturday, as a 5 day old Megan lay in the NICU, they had a public memorial service for Logan. I left the hospital for the first time since Megan was born to go to the service. Leslie, fresh out of her C-section and hardly able to get around, wasn’t able to go with me. It was as I sat there that I began to understand more fully what it must mean for a parent to lose a child. As I looked upon the photo of a father holding the tiny casket of his son in his arms it really dawned on me the depth of the loss that they must be experiencing. This isn’t just the loss a tiny, sick premature baby, but the loss of all the hopes and dreams that accompany a child. It’s the loss of tucking their son in at night with a story, teaching him to throw a ball and ride a bike, dispensing the lessons of life that come from their experience, and eventually graduations, a wedding and grandchildren. The thing about this kind of loss is that it there is something new to mourn each and every day as each day would have held its own rewards in that incredible love relationship that a parent has with their child. I imagine these things to get a mere glimpse of the pain and sorrow that they and others like them have had to endure. I believe that the true depth of sorrow that accompanies a loss like that is something that can only be experienced, and I am selfishly, infinitely grateful that I don’t fully understand.

A few weeks later we were invited to go to church with them to watch a video testimony that they had made regarding their experiences with Logan. It was the most profoundly beautiful and honest testimony that I have ever seen or heard. It was an awesome experience to see that type of testimony unleashed on a room full of people. It may well have been the most amazing love moment that I’ve ever witnessed.

Since that time I know that Jamie and Andy have suffered tremendously. I know that the heart wrenching emotion that they’ve had to endure day in and day out is beyond my ability to fully comprehend. I’ve wanted so badly to be able to say or do something that might ease their pain, but my words are utterly lacking against the weight of this loss. I know that there have been many sleepless nights, difficulty in each and every day of work and a crushing sensation of emptiness that no word from any man can heal. The road that climbs out of these depths is long and winding. I know that there may be many times of spiritual drought as they struggle to ascend this path. I hope that I’m always there to be able reach out my hand for whatever support it may be able to offer along the way.

Their story for me calls attention to a couple of points in Henry Blackaby’s Experiencing God study that I’m currently working my way through. Henry had a remarkable personal experience one day as he was in the midst of a time of silence from God in which he felt as if God was not answering his prayers. He came upon the story of Lazarus in his regular Bible study only to come to understand that here was a situation in which the Lord was silent for a number of days as his friend wasted away in illness and died. Mary and Martha had prayed for Jesus to heal him, which they knew from experience he was entirely capable of doing. However, He was preparing to do something that was more than they could have ever thought to pray for. This revelation was something that they never would have come to know if the Lord had answered their prayers of both what they were asking for and when. I’m also struck by the amount of time that it sometimes takes for the work of the Lord to fully come to fruition. It happens again and again in the stories of the likes of Abraham, Noah, Moses, Joseph and even Paul. Sometimes it may take us many years to see the fullness of God’s plan for us. What I know is that even in the times of silence and in the years ahead that God is still working in this situation.

I know how much the life of Logan has already meant to me personally aside from the many other lives that his short life touched. I’ve seen an incredibly uplifting display of love and faith from his parents. It has been an in your face reminder of how valuable a life is and how special each and every single day is that we have together. The lesson of taking all your emotions to God even the angry, crying and screaming ones was a tremendously powerful one that has revealed many truths to me about God and the nature our personal love relationship with him. The most remarkable thing that has happened in this for me personally is the glimpse of the nature of the love of a parent for a son as they watch them die and the depth of the loss that accompanies it. The father who willingly takes the sacrifice of the one he loves for those who do not love him paints a vivid picture of infinite love that I struggle to fully wrap my mind around.

I’m not so naive as to think that they wouldn’t gladly trade any of the lessons that I may have learned no matter how valuable, for more time with their son. I’m sure that the question of why it had to be their son and their loss must have certainly come up in their grief. While there has been much good accomplished through Logan’s life I would still find myself wondering, was there not another way? These are questions that I’m simply not able to answer. These answers come only from one person who is truth (Yes, truth is a person). I am utterly humbled at amazed at the amount of growth and blessings that I’ve experienced on account of their love and their decision to continue such a precious life. I know that the cost for them has been great and well beyond my ability to comprehend. I know that the Lord has worked mightily in this situation and he’s certainly not through yet. Jamie and Andy, I love you. Logan, I thank you so much!

I’ll Take It!

Standard

Boy… time flies! There I was planning on writing a post to update our progress at the hospital on Wednesday and now it’s Sunday and I haven’t posted a thing. Let’s just say it was a busy week. I took Tuesday off work so I could be there for Megan’s surgery, but then I worked the rest of the week which made for some long days. Pete and I stayed at home and went to Preschool and work while Leslie and Megan rounded out the week at Children’s Hospital. Unfortunately for me, while I’d love to be there the entire time she’s in the hospital, Megan will have these treatments for 3 days straight every 2 months. Between those 18 days and her regular doctors visits it just adds up to more time off than this guy has, especially when you tack it on top of the 13 days in the NICU that we’ve already had this year. While all of that adds up to disappointment for me, it spells extra hard work for Super-Mom Leslie. Not only does she have Megan alone in the hospital while she receives these treatments and navigates the labyrinth that is Megan’s care, but she also gets to come home to the chaos of what two unsupervised guys can do to a house during the course of a week. That’s not to mention that she was hardly able to sleep on the little fold out bed in Megan’s room at the hospital. On Tuesday the nurse had told us that it was the most comfortable bed in the world to which Leslie had skeptically replied, “Really? ” The nurse then said, nope it’s terrible. I guess honesty is the best policy… sort of.

On the home front, Pete and I did as well as we possibly could considering the circumstances, but the whole operation just runs smoother when the Momma of this outfit is around. We did have some difficulties to deal with though. I’ll go ahead and get my whining out of the way while it still has a chance to elicit some sympathy (before I get to the hospital side of things). Pete and I woke up on Wednesday without any power as there had been some pretty nasty windstorms that night. We made it through that only to wake up early on Thursday morning with Pete falling out of the bed onto the wood floor. He had climbed into bed with me sometime in the middle of the night, so it wasn’t just from toddler bed height. Both of these were compounded by the fact that we were going to hospital every night to spend some time there which meant that Pete was getting to bed about 2 hours late each night. An overly tired 3-year-old isn’t good for anybody! That’s it… a whiny 3-year-old is all I’ve got. What’s that you say… no sympathy? Ok, fine then, but know that it was kind of tough.

Now falling out of bed and dealing with a power outage would have a been a cakewalk for the hospital going Nichols duo. I wish I could report that everything had been super smooth for those two brave souls after my last post, but that wasn’t how it happened. First they had to finish dealing with the insurance issues. They had mistakenly been assigned to the purple team instead of the green team. Let me translate… they had been assigned to the non-Kaiser doctors, so all of their orders from the purple team were denied by Kaiser. Once they were able to get reassigned to the Kaiser team they had to be evaluated and start the orders all over again. After the orders got moving and the drugs were being prepared in the pharmacy they had to try and draw some blood from the PICC line to establish the baseline calcium and potassium levels in the blood. That’s when they realized that they couldn’t get the PICC line to draw. Remember how I had said in the last post that the PICC line had a loop in it, but if it ain’t broke don’t fix it? Well, it turns out they should have fixed it. The line had become kinked which was presenting some problems. They discovered that it was kinked after doing a chest x-ray and getting it evaluated by the PICC line nurses and doctors. They were able to get the line to push medicine in, but not to draw anything out. They began to wonder if they should just get the blood they needed from elsewhere and only give the medicine via the PICC line. They tried hard, but absolutely couldn’t find a vein to use without putting a tourniqet on Megan, which is a definite no-no on a little girl as fragile as Megan. They talked for a while about trying to draw blood from some of the vessels on the side of her head, but then decided that they wouldn’t be able to get enough blood out that way (Phew, that would have been creepy). Then they asked the nurses to do a heel stick to get the necessary blood but the nurses banded together and flat-out refused saying that they know how hard they have to squeeze the foot to get the quantity of blood needed and they weren’t about do that. It was then suggested that the PICC line nurses might be able to back the line out enough to remove the kink, but they said absolutely not. They were rapidly running out of options. The last-ditch effort before going back to the drawing board was to try a power flush of the line to try to straighten out the kink from inside. Luckily that worked and they were back in business. In the middle of the afternoon on Wednesday they were able to start the treatment about 26 hours after we thought that we would be able to. That meant that instead of a 3 day stay Megan got a 4 day stay. I guess all in all that’s not so bad.

Once they got the medicine flowing things smoothed out quite a bit. She didn’t have a very adverse reaction to the medicine like they had suggested might be the case. Thank goodness! She may have been a little uncomfortable and achy, but she seemed to cope just fine. Aside from the regular sort of hospital glitches everything went well from that point. After a few nights and poor sleep and some bad hospital food they were ready to head home. They did hold Megan for an extra few hours on Friday afternoon because her blood calcium had dropped too low after her last infusion, but it was only a short 3 or 4 hour delay. They were home in time for dinner on Friday night, which was good because Pete and I were definitely ready to have them back.

Now that we’ve cleared the hurdle of the first infusion we have a clearer picture of what we have in front of us. We did learn that Pete won’t be able to visit Megan during the next couple of infusions because non-patient kids aren’t allowed on the floor during flu season, but we’ll cross that bridge in December (one day at a time). Knowing what some of the pitfalls are, we’ll also have a better idea of the questions to ask in the future. The next time we’re in they’ll be able to install the medi-port, which should hopefully be our last surgery for a while. After that we’ll be able to go right up for the treatments which will take away the scary general anesthesia part of the ordeal. Anyway, we’re off the races. I did unfortunately break Megan’s finger this weekend, but on the bright side last weekend it was a leg so I’m getting better (I doubt Megan misses me while I’m at work). We’re really hoping that the Pamidronate will get in there and do what it’s supposed to so we can slow down all of these fractures.

Finally, we got the good/bad news that Megan will probably qualify for a medicaid waiver that will pay for a lot of the things that our insurance isn’t covering right now (like some of the prescription cost, her oxygen, and the pulse-ox meter that we were denied). That’s the good part. The bad part is that the waiver is a life limiting illness waiver for kids who are not likely to survive to adulthood and she will more than likely qualify. It’s wonderful because the financial help for some of the medical expenses would be greatly appreciated, but it’s also like a kick in the gut. It’s not easy to look into a pair of big blue eyes and imagine watching them close for the last time. It’s not a thought on which I enjoy dwelling. I don’t know how any of this will turn out, but I do know that we had a fun weekend full of smiles and laughs. I’ll take it!

Blowing Raspberries and Wasting Time

Standard

It’s been a very slow day today! We’re only half way to where we thought we’d be at this point. First off, we got to the hospital as scheduled at 6:00 am without too much drama, although Les had let her car run so low on gas that it was sputtering and the check engine light came on before she could get to a gas station (We had to spice it up a little). After a couple of gallons to keep us moving we made it to Children’s Hospital. The check-in process was smooth and before you knew it we were in the surgery wing in a pre-op room going through the same ten questions over and over again. They just have to triple and quadruple check to make sure that they don’t accidentally amputate a leg when you only came in to take care of a rock in your kid’s ear (We actually saw a kid in for surgery today because of a rock in his ear). Anyway, once we told them that we thought that Megan’s right femur might be broken (compliments of yours truly), red flags went up and the whole process came to a screeching halt. Apparently, while Pamidronate does a great job keeping the bones from breaking, it also can keep severely broken bones from healing. Before we did anything they wanted to make sure that her leg fracture wasn’t so severe that we shouldn’t get the infusion since putting in the PICC line to be able to receive the medicine was the whole point of the operation. So we took a break and went down to Radiology for x-rays and though we got some mixed results depending on who you talk to, it seems like there was indeed a small fracture in her femur (broken bone #17 or maybe #19… of the stuff that we know about). Anyway, whatever number broken bone it was didn’t matter because it wasn’t severe enough to keep us from doing the first infusion. Great! We were back in business.

From that point it went pretty quickly and within an hour or so the surgeon was coming out to tell us everything was an overall success. She said that Megan didn’t seem to like the anesthesia terribly well and there was a very fine line between her waking up and going too far under. Also, there’s a loop at the end of her PICC line, which isn’t great, but the thing seems to be working. They really like to get the PICC line running perfectly straight and stopping just above the heart, but they decided if it ain’t broke, don’t fix it. Her little skin biopsy was on her stomach near her belly button and that piece went swimmingly. We then went back with her to the recovery room, which was a short stay of only a half an hour. Then we headed up to her room (with a view) where she’ll be staying for the next few days.

That’s where things hit a wall. There wasn’t any one major item, but we just weren’t making any progress. It took 2 hours for a doctor to come by and clear Megan to eat again. It was well after 1:00 pm by the time we got that news and she had last eaten at 4:00 am. If she had been like Pete she would have gnawed her own foot off for necessary sustenance, but she seemed pretty laid back about it all. Once we got to feeding her again the next step was to start the infusion. It took forever to actually get the infusion ordered, although I’m not sure why as we’ve known that we were going to be doing this for a month and a half now. I guess that’s just the way it goes in hospital land sometimes. We finally got the order for the infusion, but now there’s a snag with Kaiser. Children’s isn’t a Kaiser hospital so this sort of thing happens often. We have a case manager who is actually very helpful and who’s always aware of what’s happening before we get there, but somehow that never seems to make a difference. I’m sure one of these days we’ll get all of that stuff ironed out and everything will start operating more smoothly.

While I’d love to offer a conclusion at this point, I just don’t have one. The infusion still hasn’t started though hopefully it will soon. Pete and I came home for the night so it’s just Les and Megan at the hospital. With any luck I’ll get a call soon that everything is moving forward. Perhaps tomorrow I can offer another installment of the saga of Megan’s Pamidronate Infusion #1 without nearly as much drama as this one seems to contain.

Today, like many of the days in the last few weeks, we’ve continued our life schooling and character refinement.  We’re learning lots about patience. We’re learning even more about having faith and walking one day at a time. We’re also learning some more unique lessons like if you blow a raspberry on the stomach of a baby with a bunch of broken ribs your wife will yell at you. While that last one is not as broadly applicable as patience and faith it’s still a good one to make note of in case you ever find yourself in that situation. Contrary to how this post may make it sound, we’re really still having a good time here in Denver. We had an especially fun scavenger hunt this past weekend and I’ll have to share some photos from that outing when I get a chance. Keep the prayers coming and I’ll do my best to keep everyone posted.

I’m Glad it Hurt!

Standard

It’s been a nice week here in Denver! While just the normal new baby stuff has kept us very busy, we’ve still managed to have some fun. That’s really due in large part to all the support and visitors that we’ve been receiving. Hardly a day goes by without a friend stopping by to say hello and drop off some food. One of these days when I can manage to start writing thank you notes, I’m going to write until my arm goes numb and falls out of the socket! The outpouring of support has really been overwhelming (in a terrific way). In that time Megan has had a couple of doctor’s appointments that weren’t terribly eventful, but I’ll try to give a full report all the same.

At the end of last week Leslie and Megan went to meet the surgeon who’ll be inserting the PICC line for Megan’s first infusion. The surgeon primarily didn’t want Megan to get wheeled into the OR without having met her before. She described how the PICC line works a little bit to clarify the procedure for us. They insert a little tube that starts at her elbow and runs through a blood vessel all the way back to just above the heart. While she’s under anesthesia the surgeon will also take a skin biopsy. It’ll be a small half-moon and require a couple of stitches. She tried to strategically plan the location so that the scar won’t be easily visible, but we’re talking about a little girl who’ll end up having surgeries on both legs from top to bottom and her spine as well. A little half-moon is hardly going to be a scar that’ll jump out at you, so we’ll plan for comfort today instead of long-term scarring. Megan will probably be in the OR for around an hour and then spend a few hours in recovery before they wheel her off to a patient room and then to get her first treatment.

Leslie and Megan then had another appointment today with her primary care doctor to get all the standard 2 month old baby shots and to go over some of the final information for the infusion. Megan’s doctor wants to remove the PICC line after this treatment instead of leaving it so that we can reduce the risk of infection and avoid the daily flush to keep it clean that goes along with keeping it in place. She’s banking on Megan being the necessary 5 kilos (about 11 pounds) so that she can just get the medi-port inserted underneath her skin before the next infusion sometime in December. If she’s not 5 kilos, then we’ll have to go under general anesthesia again to get another PICC line, but she feels that is a lower risk than the infection risk of keeping it in place. She weighed in today at 4.1 kilos (around 9 lbs 1 oz) so we have some ground to cover before her next treatment, but at least she’s moving in the right direction.  

The infusions that she’ll get take 3 hours, once a day for 3 days straight. Then the nurses just sit back and watch her like a hawk to see how she tolerates everything. Since this is her first infusion it’ll actually only be a half a dose this time because there’s normally a reaction to the medicine that likely will involve fever and some muscle pain. Otherwise the nurses will just monitor her blood and urine for potassium and calcium levels, give her calcium to keep enough in her bloodstream and do an ultrasound of her kidneys to check for stones. We’re learning that the way Pamidronate works is that it takes the calcium that’s been floating around in her blood and kidneys that in a perfect world would be depositing in her bones and make it do just that. This visit will get us started and set baseline numbers for all of her subsequent visits.

After the appointment this morning, Leslie came back home and finally got the call that we’ve been waiting for the last week or so about when the surgery will be. Apparently these aren’t easy things to schedule as it takes quite an effort to line up the surgeon’s schedule, the nurse practitioner’s schedule and find an open OR. Anyway, the PICC line will get inserted next Tuesday the 16th starting at 8:00 in the morning. Hopefully everything will go smoothly as we aren’t completely sure what to expect for this one. I’m sure it won’t take long to get the hang of things with 3 days of infusions happening every 2 months, but this first one still has a few question marks for me.

Well, that about sums up the last few rounds of doctor’s visits for Megan. The strangely good news for me in all of this was that she cried a lot during her shots today. I had been worried that she might be in enough pain on a regular basis that shots might not even phase her, which would tell me that she deals with a lot of pain all the time. That turned out not to be the case and she did all the normal baby screaming. In a lot of ways that was a relief to know that compared to how she’s been feeling lately those shots still hurt a lot. I was relieved… I’m glad it hurt! Sorry Megan!

A Naked Baby

Standard

It’s been a pretty good weekend here in Denver. Pete spent the night with a friend for the first time ever! He couldn’t have been more thrilled about it. Leslie had been very nervous about his first night away with a friend. Not for any reason other than it was the first one, but she was nervous all the same. She asked him the night before if he would miss her. He took a few seconds of deep 3-year-old contemplation and said, “Um… nope.” He had a blast! Not only did he spend the night with a friend, but he got to ride on a fire truck the next morning at a Fireman’s pancake breakfast. No wonder he didn’t miss his Momma! He then came home for some sidewalk chalk fun and visit by the ice cream truck. Today he had a good time at church (he had a Hershey’s kiss in his hand when I walked up to get him) and he got to go to a birthday party which of course included cake. It’s hard to argue with that.

Megan’s weekend wasn’t quite as good as Pete’s, but with a handful of rib fractures that’s to be expected. She rested ok most of the time and ate pretty well, though she didn’t really sleep much Saturday night which sidelined her again for church. She’ll make it one of these days. However, some of her happier times led to some nice photo opportunities, so we’d love to share.

As I post these photos there still an elusive photo out there that’s hopefully waiting to be captured and posted. A naked baby picture! No, not a creepy picture, but just one with a sweet little baby girl. All of our pictures of her either have an IV, a feeding tube, a sling for a broken arm or tubing for oxygen. Can I just say that all of those things feel like they’ve stolen some of the innocence of our precious little one. Megan never had the chance to be a naive little baby and think that the world is a safe place where her family can protect her. Unfortunately we just can’t keep the world at bay when the attack is from inside because of a gene mutation, no matter how much we’d like to. One of these days when she can ditch the oxygen (so long as she doesn’t have any broken bones at the time) we may be able to capture that naked baby picture. Until then, we’ll just keep hoping that the opportunity will present itself before her baby phase passes us by.