Someone To Help These Hard Times Pass

I've found that I'm a member of a club that seems an odd thing to elicit pride: the "clubfeet moms" club, the "moms of kids with Down syndrome" club, the "cancer kid moms" club, the "moms who have been there" club. I'm a part of that club for Eli's clubfeet, Ruby's Down syndrome, and, now, Ruby's leukemia.

In the past ten years, I've received messages from parents who are struggling with their baby's casts, or from a mom who is trying to figure out how to make the brace work in daily activities, or from an acquaintance or friend who knows someone who just received a T21 diagnosis. Or more recently, from someone who knows someone else with a young child's cancer diagnosis. Every one from close friends to internet acquaintances have come to me with questions, often asking if their friend can message me, or if there’s anything they can say to their friend and what should they do to help. And for every question that has been asked of me, I have asled ten of someone else. That's the way this circle of life seems to work.

Although these interactions sometimes make me feel like people see me as an odd 'take my bad news and tell me why it's not bad' self-helper, I never see them as a bother. In fact, I consider the fact they come to me as a compliment of sorts. It isn’t a compliment I necessarily wanted to receive, at least when it comes to leukemia, since I sometimes wish I knew nothing of the subject, but it’s one I accept humbly. The people who reach out to me trust me enough with their hearts and emotions to invite me into their private lives. And I get it. When all of our diagnoses were new, I wanted, needed someone to talk to also...someone who had gone before me and could tell me that things would be alright. Someone who wouldn't run away if/when I dissolved into tears. Someone that had gone through what we are facing and could give me the real deal. Someone who wouldn't be shocked by some of my new and possibly offensive questions and statements. Someone who wouldn't sugar coat things, but who also wouldn't hit me with difficult to process statistics and medical facts.

And then there is the part of this role that helps me relive the initial diagnosis. The part that lets me redeem my early moments in the club(s), especially when it comes to Ruby's Down syndrome. When I talk to parents who have just received the news while pregnant, or who are struggling with the early days of a little baby and what feels like a big diagnosis, I see who I was when Ruby was born. I see the fear, the grief, the confusion... It helps remind me how far Ruby has taken me and how much she's grown me. And I remember how alone I felt in those first few weeks, before we told everyone. How, even when we told friends and they were amazing and loving and supportive, they were still on the outside and I desperately needed someone else on the inside with me. I needed someone to say, "I know. I understand. I really do get it because I've been there and I'm here with you now."

When it comes to the leukemia especially, that reliving part also helps remind us how far down the road we are. How many procedures and chemo treatments and transfusions and hospital stays are behind us. I happen to think that is encouraging both for me and the parent I'm talking to.

One area most of us struggle with in this role is how to help, really help, someone who is going through the chemo. When I don't know someone well enough to stay with their child, or coordinate a meal calendar for their friends and family, the only thing I can do is offer advice of little things that helped me. My hope is that they can hopefully unload that information on the close friend or family member who is most likely to help oversee things for them. We are so unbelievably fortunate to have friends and family who rallied around us to take care of the older kids and get meals and do our laundry and and and...I would say having someone (or a few someones) to coordinate all of that for us was the single biggest thing that helped take some of the stress out of processing the diagnosis and plan for hospital stays for multiple weeks at a time.

I’ve had short, single-serving conversations with people who had a question about chemo or a test. I’ve talked to people for hours just about nurses or hospitals or hospital stays. and I've typed pages back and forth to moms who have gone before me and those who are just starting out. I will give advice in one email only to turn around and text a more seasoned mom for advice or a pep talk for Ruby's next step.  

All of this goes both ways, since we need each other. SO much our journey is about others. We aren’t alone in our bubble of diagnoses. We’re part of a community where we all need someone. I learned very early on, through the kindness of other parents, that it’s important to take our own struggle and turn it into strength for someone else. I am so grateful to be that strength for other parents, even if just for a moment of time. No matter how many days or weeks pass by, I will never forget the fear I felt during different moments of Eli's early months, Ruby's first days, and Ruby's third year of life so far. I can't forget the tears I shed during moments of despair. And I hope I never do. Those feelings are what motivate me to comfort others past those tears and fears and back into the joy they felt before their changing moment. Those feelings are what motivate me to help others find their new normal.

Released!

If you've been following the saga of Eli's feet for the last year-ish, we have been working to fight off a relapse. Over the summer last year we saw some lack of dorsiflexion (i.e. his heels weren't always touching the ground when he walked) and followed up with the Orthopaedist twice and then ended up in PT with a strong possibility of recasting. Despite the therapist's desire to cast, we fought through with diligent home PT, weekly visits to her, night boots (similar to plantar faciitis treatment splints), chiropractic visits and managed to get a great response from his feet. At the beginning of the summer, we went back to our Ortho and he sided with us (non-casts) given the progress Eli was making, and after all of Eli's hard work, the therapist officially 'released' us today! She asked that we come back in 6-months to check in and make sure we are still seeing progress, but she commented that Eli has made more progress and gotten more flexibility in the shortest amount of time of all of the patients she's treated with feet like his. Woohoo!! Definitely a day of celebration!

Night Shoes Breakthrough

So finally, after wearing the original shoes for almost a month, and the 'new' custom shoes for a week, we had almost a full week of Eli wearing the shoes for at least eight hours each night. Wow. There were many times in the last month when I thought this would never happen. Even now, after a 'good' week, I know we are still not over the struggle....this is still a difficult thing for Eli every night, but at least his feet have accepted the shoes more than they've rejected them. I'll take it.

More New Shoes

So we've been working through Eli's feet challenges for a month now. He's been wearing UFO 'boots' at night to help stretch his calves/Achilles, but we have only had one night where the shoes have actually stayed on all night. Most others, they are off by 9PM, only to have me put them back on as Eli sleeps. And that is done in vain because they end up getting kicked off/taken off again before midnight. It's gotten really bad in the last week and I think we may get one hour each night at most.

A few weeks back we went to the orthotist to get fitted for custom boots. The thought was that if we go custom, they'll fit and feel better, so they'll stay on better. This last Monday the boots finally arrived. While they felt 'fine' to Eli, they still ended up off by 9PM, so lehr and I put them back on, but once again, they were on the floor in the morning. Ugh - defeat.

Yesterday afternoon I took Eli to his weekly PT session. We do exercises and stretches every day at home, but he goes in once a week to work with the therapist. I brought the new boots to see if there was anything else she could suggest. She put them on, just as we had, and talked to him, just as we had, about the reality of casting should his feet not show progress soon. (We've all reminded him that the shoes are vital to his foot stretching and showing progress.)

Before bed, Lehr and I talked to him separately about really working hard to not take his shoes off during the night. I've reminded him that it will be uncomfortable for a few nights, but once he gets past that 'hard' spot, it will get easier. He called me back in just before 9PM because he felt the boots sticking together (heavy Velcro), so i helped rubber band his pant legs over them. He fell asleep and they were still on at 10:30 when Lehr and I went to bed (for the first time in a looooong time). And let me tell you it was like Christmas morning when we woke up this morning and he still had both boots on. He was SOO excited (as were we!) and soo proud of himself. We talked about a few things that bothered him through the night and how we can hopefully fix that tonight. Then we celebrated with a big pancake, egg and bacon breakfast before school. Big time.

I know he did not get quality sleep last night as he was surely in and out of consciousness several times, but he made it.... So hopeful this is the start of success.

PT Progress

Yet another update on the process we are currently in with Eli's feet.

This week I did some extra research and confirmed my theory that Eli is likely experiencing some of these relapse symptoms because of a growth spurt. What that tells me is that we'll have to keep up some form of PT (at home anyway) until he's in college. Not a bad thing, but information that I wish I'd known earlier so we could have stayed more ahead of it.

This last week was our first week of doing the PT exercises at home every day. Eli has been a really good sport, having a pretty happy heart through most of the sessions. Each time we go through our exercises it takes about 30 minutes. And these are not easy for him; in fact, some of the stretches are painful for him. Getting and staying motivated to commit to voluntary pain for 30 minutes each day is not easy for anyone, let alone a 7-year-old, so I do try to cut him some slack in the attitude department. We've only had one 'bad' session, but we still got through it. What I've not cut him slack on is actually doing the exercises. One way or another, we get through each and every one of them (though the 'bad' day did take almost an hour.)

Yesterday Eli was rewarded for his hard work when we went to his weekly PT session with the therapist. Maddux and I stay in the waiting room for about 50 minutes while she works with Eli. When they returned she said that he did great and his progress with balance is already considerable. (He exceeded her expectations for a month of therapy in just one week in that area.) She even rewarded him at the end by letting him ride the zipline into a ball pit - he loved that! His therapist will measure his flexibility next week, but she did warn us that we may not see much of an improvement given that he is wearing the boots for such a limited time each night.

Our schedule has been crazier this last week, so his daytime boot-wearing has decreased, and unfortunately it has not improved overnight at all. His custom braces/boots will be in about ten days from now; I'm hoping they are drastically different for him.

The Feet

Still struggling.

We have only had one (maybe two) nights where Eli's shoes have stayed on through the night. The other nights he either wiggles out of them or takes them off in his sleep. Before I go to bed each night, I check on him and they're always off, so I put them back on while he's sleeping. Even with that, I estimate that we're getting about four hours a night in the boots, and we need at least eight. We had an appointment yesterday to get fitted for a pair of custom boots. The orthotist thinks they will fit his feet better so they'll stay on better. (Fingers crossed!) They won't be in for another week, so until then we'll continue the UFO boots we have now.

I took Eli to the chiropractor last week; at this point I'll try as many things as I can that may help loosen up his feet. He enjoyed that, the manipulation of his feet and the hot 'laser' treatment.

Today Eli had his first PT session. It was mostly an evaluation where the therapist walked through a bunch of exercises and tasks to see how Eli's feet performed. Then she took a handful of measurements with his feet flexibility. She finished by giving us some stretches and exercises to work on at home. Most of the stretches were ones that we've been working on, but we have not been as consistent as we'd like. Eli tends to get frustrated, especially since we do many of the stretches at night (no other time in the day!) when he's tired.

When we finished this afternoon, we came home and I had Eli go through all of her exercises so we could get one day 'done'. He started out great, but definitely got 'bored' towards the end. I had to remind him what the doctor, the orthotist and now the therapist said: if things don't improve real fast (as early as two weeks from now), we will have to start casting again. That will mean no baseball, no swimming, no football...pretty much all of the things Eli loves to do. That would absolutely break my heart, so I'm pushing him hard with this therapy. Parenting is not for the weak, I tell you....

New Shoes

In months past, Lehr and I have noticed some signs of relapse in Eli's feet. In general, they've been less flexible and he's been walking a bit on the outside of his feet when he's not wearing shoes. Over the holidays I called in for an appointment, which didn't actually take place until this week. As I'd expected, the doctor (and two PA's) saw what I've been seeing and agreed that more aggressive measures needed to be taken. (After our last visit when I brought up seeing some of these signs some of the time, we started stretching at night and doing some barefoot activities, like gymnastics.)

For now, Eli will be wearing night shoes (not the same ones he had before) to help the flexation of his ankle/foot, and we are staring physical therapy ASAP. The shoes have not worked well; we have yet to make it a whole night with the shoes on Eli's feet. It's not his fault; he's been very cooperative and willing to do what it takes to avoid the next step (casting). Sometime while he's sleeping, the pressure of the shoes becomes too much for him and he either wiggles out of them or takes them off in his sleep. Because of that, I've been aiming for 1-2 hours of shoe-wear after school each day. This isn't the most fun, as he has to sit on the couch while he wears them, but at least this week has been very cold and rainy, so he hasn't been missing out on too much outside play anyway.

First Beach Day

We arrived to Watercolor on Saturday after a very long drive. Apparently the rest of Atlanta (and Georgia!) decided to take their Spring Break trip to the same place, leaving at the same time as we did. (The nerve!)

We've had a great few days already; lots of beach and pool. The water is a bit chilly, as is the wind, but we've had lots of sun and lots of fun. Yesterday we spent a big chunk of the morning on the beach, playing and walking to Seaside and back. Eli and Maddux brought their bikes to the beach, so they've been riding them back and forth to each of our locations as well. When we woke up this morning, Eli hobbled into our room with some stiff feet and asked if we could 'just sit on the beach today'. The flip flop walking, bare feet running, and biking in flops has left my little man's feet very overworked. Us clubfeet folks struggle with adequate muscle and flexibility in the afflicted feet. I feel very stiff the day after a long trail run or many balancing or barefoot workouts. Eli is now starting to experience the same pain when he pushes his feet further than normal. The good news is, he walked around a little and stretched like I told him and they loosened up enough for him to still enjoy himself today.

Doctor, Doctor!

Lesson learned today: Do not allow more than one doctor appointment to be scheduled in the same day, especially not back-to-back! Totally by chance, both the kids' pediatrician well-visits were this afternoon, followed very closely (almost-causing-us-to-be-late closely) by Eli's orthopedist appointment. Ouch.

The well-visits went 'well'. Eli is growing right along, but he's dropped to the 30th percentile for height, and similar for weight (he's usually a 50th percentile kid). Maddux is 33 pounds and well into the 75 percentile for both height and weight. Eli had to take a vision test, which he passed perfectly, and he was due for one vaccination. The poor kid got a little nervous, but didn't fight the nurse. In fact, they always ask us to hold them down (which I try to disguise as a hug), but Eli didn't even flinch. That nurse was GOOD!!

From there we raced to Eli's ortho....made it just in time to fill out five pages of paperwork 'updates'. We were seen by an up-and-coming doc first, who gave us a good report, followed by Eli's regular ortho, Dr. Schrader. He had Eli do a variety of things from jumping, to hopping on one foot, to touching his toes, etc. At the end of it he said that Eli has done very well with wearing his shoes and he saw no reason for him to continue to do so at night. In fact, unless we see a sign of relapse (which is unlikely), we don't even have to return for another 2-3 years!!

Even though it's what we hoped and prayed for, the enormity of this visit didn't hit me until I put Eli to bed tonight. For a while now we've been allowing him to sleep without the shoes on Friday nights, and here and there for special circumstances (babysitters, etc.). But the fact that I never again have to put them on my little boy.... the fact that he can now get himself out of bed in the middle of the night to use the bathroom... the fact that he can curl up in any position he wants EVERY night... This is big. Really big. And it's five years in the making. Those shoes have been such a huge part of our lives for as long as Eli's been a part of who we are. Wow...this week just keeps coming at us in these crazy ways....

New Shoes

Eli has been resisting 'the shoes' at night for several months now. Before his last visit with Dr. Schrader over the summer, we were confident that he would no longer be required to wear them, so we were on a more lenient schedule (off one or two nights each week). This is a far cry from anything we've done before with his treatment, but he only started complaining a few weeks before the appointment, so we didn't think it would really harm. Unfortunately Dr. Schrader saw some slight relapse tendencies and ordered another year of nighttime wear. The problem was, Eli was (and still is) able to get the shoes off, so short of gluing them to his feet, we found it hard to guarantee 10-12 hours of wear each night.

In the last month or so we've started to question if maybe the shoes were too small, causing discomfort. I was finally able to get in to the orthodist this afternoon to get a new pair of shoes. Eli got his first pair of Mitchell boots at this appointment. Dr. Schrader is a big fan of them, and they are Ponseti-sanctioned, so we approve as well. They are made of a softer plastic, which makes for a more comfortable fit for kids. Also, the leather straps that go over Eli's feet are softer and more pliable, so (again) less discomfort. Eli was all excited to get the shoes today, but when I put them on tonight, I was met with some hesitation. I hope that after a few nights he realizes how comfortable these shoes are compared to the other ones and it becomes a non-issue.

Ruff N Tuff

Ugh. That was today. Through and through. It started with Eli and his mood from the moment he woke up until just before baths tonight. Part of the problem was two doctor appointments in one day, but the insanity started before that, so not a good enough explanation for me.

First issue: both kids (Eli especially) decided today that rules and Mommy's word do not apply in public. This is a new belief, and one that took me by surprise this morning. We were at Dr. appointment #1 and it was taking a little longer than expected in the waiting room. Since it was a pediatric orthopedic office, there was a nice little play room for the kids to occupy themselves in. The issues started when my kids acted like they owned the place, powering through all toys, talking way too loudly, and giving off an intimidation vibe (IMO). At one point, Eli was on a moving toy and he rode right through a house that a little girl was playing with. And he just kinda looked at her, as if to say, "Move." At this point I pulled Eli out, reminding him that this was not his playroom and these were not his toys (and we don't act this way even in our house with our toys). I then told him that he needed to say, "Excuse me" if he accidentally runs into someone, but to be aware of his surroundings, as other kids were in the area. He gave me blank stares, wiggled out of my grip, squirmed and whined, and told me, "DON'T HOLD ME!" It was a classic case of child vs. mom to see who can put on the better show. Of course my hands were a little tied because the front desk kept calling me up to fill out MORE paper work or verify more information, and we had waited so long that I knew we'd be called back at any moment, so I didn't think pulling him out of the office or to the restrooms was a valid possibility. On top of that, I had Maddux with me too, so I had to keep an eye on her. In the end, he sat with me until we got called back. The visit itself was fine, behavior-wise, but Eli has to wear his shoes at night for another full year. That was a blow to me. Especially because the doctor noted that his achilles tendon is a bit tight. He walks fine and can flex very well for how tight it is, but the shoes need to stay to prevent relapse since things are still not as they should be. Not what we were expecting...

Home for lunch after that. The car ride was full of me reminding the kids how we behave in public. Then it was full of silence as Mommy needed some quiet time. Lunch was not great. The kids played well enough while I was preparing, but Eli's less-than-happy heart got him into trouble as we sat down to eat and the next fifteen minutes or so were spent disciplining. Many privileges were revoked and many minutes were spent in time out. Nap time came and we all got some much needed distance from each other.

I had to wake Eli and Maddux up from naps at 3PM for Maddie's appointment. (I needed to get her finger checked again.) Reminders about our behavior all of the time (especially in public) were discussed. Every one was happy and away we went. Both kids got the flu 'mist' and they did great with it. (A welcomed change from last week's shots.) Maddux's finger is healing just fine and the stitches will work their way out on their own. Once home from the doctor's office, things went high-low-high-low a bit. Nothing nearly as bad as earlier in the day, but at this point I had no patience left. Lehr convinced me to meet him at Willy's for dinner, so I packed the kids up and away we went. On the way, I called Lehr and told him that at the first sign of disobedience or lack of respect, Eli would be taking a trip out to the car with one of us. I really felt like somewhere along the way Eli got the idea that misbehavior in public was tolerated and I was determined to set the record straight ASAP. Fast forward to five minutes later when Eli started to whine and kick up about something insignificant. I looked at Lehr and said, "You or me?" He took Eli out immediately. Calmly. (Calm reactions are always our goal with the kids. We don't want them to get the 'reward' of causing Mommy or Daddy to get flustered and further engaged, and no good can come from us losing our cool during discipline.) The boys were outside for less than three minutes before they returned and Eli apologized to me. We went along with our dinner and all was good.

As we left, Lehr found a hand written note on a napkin under his windshield wiper. If my printer worked, I'd scan it for all to see the kindness of a stranger. For now, I'll just re-type it. Thank you, whoever you are. You helped remind Lehr and I that we are doing the right thing, even though yesterday felt like we had no clue what we were doing, given the results we were seeing.

I want to commend you on your "parenting skills" by taking your son out for whatever he did in Willy's. By taking him out and talking to him outside the restaurant, you showed him respect and also firmness and love that he won't understand for years to come. You must be a great father! Keep up the great work! Blessings to you and your family.

Thinkin' Back

My boys are camping tonight and Maddie and I had a low-key evening. Because of Maddux's injury, I am covering her whole hand with a Publix bag during meals and bath time (which only consists of about one inch of water). This reminds me of when Eli was a baby and still had his casts on. Bath-time for him in those weeks was very similar. We would place a towel in the bathtub and fill the tub with just enough warm water to cover the towel. Then we would tie plastic bags around each of his legs and lie him on top of the towel. His 'bath' was more of a shower by way of a cup pouring water over his body. Such a long, long time ago. But of course it prompted some memories, and I ended up back in 'the archives', looking at old pictures and watching old videos. Below is the same video I've had on youtube for years now; the video and pictures of Eli's progress have been used in Dr. Ponseti's famous office (Eli cameo at 4:05) as well as in presentations on clubfeet.

Feets Are Good!

Eli had his annual foot check up this morning. Both kids were up before 8AM which is SO strange for them; they had a surprisingly good morning even with the early wake-up call. Eli and Maddux had a blast in the playroom before the nurse called us back to our room. I read the 'rules' while they played and I was so happy to see the side note: "Don't worry about the noise:this is a pediatrics office. If your kids are happy, we are happy."

Dr. Schrader had a few med students with him, so he did a lot of pushing and pointing with Eli's feet to show what to look for and what the feet have done in the past. Eli didn't mind at all though; last night I was sure to show Eli exactly what the doctor was going to do (so he didn't get scared). After Dr. Schrader left our room, Eli asked, "He all done???"

I love love love how much the kids play together now. Even though I know they aren't even really playing together yet, it warms my heart to see them both have some imagination and play skills that have nothing to do with me. Maddux's favorite thing to do these days is tote things all over the house. She'll carry the strainer into the dining room where she finds the train. Then she pushes the train to the kitchen, where she finds a book. She carries that back to the playroom where she finds a piece of pretend food. And the cycle continues.

My favorite moment today came when the three of us were rocking out in the living room after lunch. It was one of those moments every parent has: you can't help but laugh at the cuteness of the situation even though it contains some 'wrong' behavior. I walked out of the room for a minute to grab a diaper for Maddux. Almost immediately I heard the volume on the stereo get louder, then softer, then louder again. I knew it was Maddux right away as she is VERY interested in the receiver knob these days (a big no-no in our house). I ran back in to find Eli giggling, but telling her 'no', and Maddux in front of the receiver. As soon as I called her name, she turned her head, hand still on the knob turning back and forth, and her knees were bending up and down in a jig while she bobbed her head and grinned from ear to ear. I don't think I've ever wished for a video camera more than I did in that moment. It was awesomely precious (even though she was disobeying). I turned my back and laughed a few seconds before I removed her from her post. Life is good.

Clubfoot News

Club Feet back in the news. This teenager had to wait a long time to get her feet fixed, but now she takes her first steps. Read more about it here. To think had she know about Dr. Ponseti when she was a baby, she might have been walking all this time and without surgery.....

Donation Corner: Angel Flights

I've posted a spotlight to Angel Flights already, but recent events motivated me to draw attention to the very worthy cause once again. (You can read the story here.)

Earlier this week a fellow clubfoot parent suffered a great tragedy during an Angel Flight home. The plane left Iowa City only to crash just after take-off. The mother and child (Sydney) were injured in the flight, and the child passed shortly after arriving at the hospital. Sydney had just finished meeting with Dr. Ponseti for treatment of her bilateral clubfeet.

This story hit home with me because, although I've never spoken directly with this parent, I followed Sydney's story on one of the clubfoot-parent message boards I frequent. I cannot imagine what Sydney's family is going through right now, but I know they'd appreciate any and all prayers right now. They were very grateful to have the opportunity to use Angel Flights, and to see Dr. Ponseti. Sydney's mom has told us on the board that of all places for this to happen, she was grateful it was in Iowa City, where she was surrounded by so many great people. She has had the support and love from her 'clubfoot family' through it all.

You may be thinking, 'Why are you spotlighting a cause that brought on such a tragedy?' This crash was a total fluke...accidents happen and in no way does Sydney's family blame Angel Flights. Their organization provides free flights to families who cannot afford them so children can receive necessary medical treatment that is not available within driving distance. If you'd like to learn more, you can read more about Angel Flights here. (There is not a link from that website to donate just yet, but you can donate here.)

Snuffleupagus

Maddux is suffering from teeth, allergies, or a cold (or all three). Her temp has gone up and down a little in the last few days and she's producing enough clear mucus for three people (not to mention the drooling). The main issue with this is her sleep is being affected. The drip down the back of her throat is causing her to cough when she lies down which makes sleeping a little restless for her. We've not had to go in and comfort her, but I can hear her coughing through the night, so I know she's not sleeping well. The screaming at mealtimes is still present, but we are being consistent with pushing her back from the table when she acts up. Eli says, "Max time out?" That kid picks up on everything!

On a side note, a friend pointed out a Ponseti-mention in Time Magazine. Apparently Time asked previous "Time 100" recipients to nominate someone for this year's list. Dr. Ponseti didn't make the final cut for the 2008 World's Most Influential People list, but the article is here if you're interested (only a small blurb).

What Would You Do?

One of my favorite blogs to read had this post last week. In case you're short on reading time, or don't feel like clicking the link, I'll sum it up. This family is in the process of adopting (yet another) little boy with club feet. The mother-to-be talks about how she imagines the biological mother might have been crushed when she saw her son's (imperfect) feet, but how excited she (blog author) and her family are to take this little boy in and love him, feet and all.

Of course this story makes me think back to when we found out about Eli's feet. But even more it makes me think about Maddux's birth. Since we knew about Eli's condition before he was born, we had time to prepare ourselves and get a 'game plan'. Maddux's feet appeared un-clubbed in the ultrasound, but I still always knew in the back of my mind that she might have some feet challenges when she was born. We were pleasantly surprised that her feet were issue-free. But in the months leading up to her birth I remember being even more anxious about her health than I was before Eli's birth. When we got the diagnosis of his feet, I focused on the treatment plan and just trusted that God wouldn't give us more than one issue to deal with. In the case of Eli, He didn't give us anymore to handle. Since Maddux's ultrasounds came back 'clean', that was cause for initial celebration, but soon after I began to worry about what the ultrasound didn't show. What would I be surprised with in the delivery room? And would I be able to handle it as calmly and lovingly as I had Eli's feet? Or would I be too overwhelmed? Would I react the way the parents of Shepherd did, and think my child 'imperfect'? These are really tough questions to answer, and until you're in that situation, you can't say 100% what you would do or feel. I'm lucky that I wasn't faced with an 'unknown' at the time of either birth.

For now I'm thankful that Eli's feet are corrected and (at the moment) both of my children are very healthy. I pray that Shepherd's feet are as easily fixed as Eli's (and Jude's, Shepherd's brother). And for all of the other kids out there that are waiting to find parents to love them, even though their biological parents deemed them 'imperfect', I hope a family as loving and giving as Shepherd's finds them soon. (If you want to know more about Jude and Shepherd and their amazing family, including eight total kids - both biological and adopted, check out this website, that I've been following for over a year.)

My Boy Is A Pin-Up!

A few months back a calendar was put together by a group known as "Ponseti's Angels" to raise money for the Ponseti International Association. As soon as they became available I ordered one, if for nothing else, to throw some money their way. We received the calendar this week; low and behold, Eli is in there! At one point I do remember them asking for permission from a few of us on one of the message boards, but that was months ago, so I forgot. The calendar contains pictures of babies and kids in various stages of treatment (Eli's picture is of his corrected feet, from about six months ago) and lots of useful information about the treatment of clubfeet. The pictures are not all high quality, but the information included is absolutely wonderful. I'm really impressed by how they managed to give some great insight without overwhelming with too many words. If you know anyone with a clubfoot child or if you just want to support the cause, here is the link to order. (This would be a REALLY great gift for someone expecting a clubfoot child, through pregnancy or adoption. There are a lot of tips on how to deal with casts and the shoes/bar inside.)

Eli's Famous Feet

Just like I warned Lehr before I told him, I'll warn you: this may come off as a boast, but I'm too excited to not post about it.

I frequently read two support message boards for parents of clubfeet kids. I get the clubfoot posts sent to one of my email addresses daily since I don't always have time to visit the site, but I don't want to miss any posts. I rarely post anything on the site anymore because we haven't had any issues since Eli first started wearing his shoes. And when I do post, it's usually just an email to a specific person who is asking for help (rather than post to the whole board). (My point in telling you is that I've never been a regular poster on the board, nor have I 'advertised' Eli's video or story on there.) Anyway, today when I read the daily posts, I found this post from a woman in France (her English is not perfect) who is pregnant with a son diagnosed with bilateral clubfeet (The first video she references is one from a man upset about the poor treatment of his son's feet. They were NOT corrected by a Ponseti-trained doctor. The man who posted it has since made it a private video, otherwise I'd post the link.):

Well I have been lucky, I saw the video you're talking about but also the great "Eli's feet" one and the "Walking Miracle"... All three learned me somethings : Eli's feet shows so well the treatment I recommended the video to everybody I know !

WOW! Very high praise especially from someone I don't know. Then a few days later, this post showed up also (part of the same chain of posts, but from a different reader, still in France):

I wish I had discovered "Eli's feet" before because it is really a sweet video and shows everything with no words on a really nice music ;-) when I first saw it I thought : "oh well , it doesn't look so terrible to go through !"... And I sent it to all friends and family, you son is now famous in France, Nicole :-) I even sent it to the doc who is going to follow my son so that he can show it to the new parents :-))

This makes me so so so happy. Not for the selfish reasons though (but I am proud). It makes me happy to know that Eli's video is doing what it was intended to do: set parents' minds at ease about the treatment and end-result of Ponseti-corrected clubfeet and help them realize surgery is NOT the answer. It is so neat to know even people in other countries are benefiting from Eli's experience.

The other video I posted, Walking Miracle, gained these favorable comments in a post to a newbie this week (This is the video which featured a few seconds of Eli crawling with the bar. Click here for the whole story.):

Everyone in your family needs to watch the YouTube video "Walking Miracle". This video is amazing.

Also, another woman recently stumbled across the Eli's Feet video and she asked permission to post it on her site. She has three boys, all born with clubfeet. She informed me that there is a parents' banquet in Iowa City next month honoring Ponseti. I'm not sure of the details yet, so of course I'm unsure if it would be an option for us. But if the stars align and there would be some way for us to go meet the wonderful Dr. Ponseti, it would be great. Apparently there will be more than 100 doctors from 40 different countries attending.

Clear For A Year

Eli had an appointment with the orthopedic this morning. As we hoped (and pretty much suspected), there is no sign of relapse!!! Eli's feet looked 'perfect', according to the doctor. In fact, he made the comment that by looking at them, you can't even tell there was ever a problem. This is great great news, obviously. Even better, as long as there are no problems or concerns, we do not have to go back for another check up for a full year. Life is good.