Time for a spring makeover for Makenna's Hug Machine!!
Five. How in the world is she five? Makenna’s life has been anything but boring up to this point, which leaves me with a feeling that I must have missed something in the whilrwind. Where did all the time go? Did I savor every moment? One the other hand, I also know I’ve aged about 10 years in the past 3 and this little 5 year old has been through more than her share of challenges. In that light, the time seems eternal. Makenna started things off with a bang! She was four weeks early and we weren’t at all prepared for her arrival. So from the very beginning, she pointed out that you can’t always be prepared for what you’ve got to face. Sometimes, your plans just don’t matter and you’re going to have to roll with it. Whatever “it” may be. I can’t wait to see how this spunky little girl grows up! It's a very good day.
One more brave, strong, sweet little girl has tackled the beast. "Tink' as she's affectionately called got the good news today. This trip will be her last cast and she will transition to a brace after that!!!! Good news like this serves as a reminder of the light at the end of the tunnel. The hope we hold on to. Even though Makenna is in a brace now and no longer casts, I still need those reminders. The realization that we've come out the other side and will continue to do our best to beat the odds. Good news like this serves as a re-affirmation. Yes, we did find and choose the right treatment for our child. Yes, this treatment does work. Yes, we will lead the way for those who follow. Good news like this makes us so thankful that we found the treatment. That our windy, crazy road led us to exactly where we are today. In a brace, straighter than she started, with the tools, skills and support necessary to meet any unforseen turn that may lie ahead. Good news like this makes you think word has to spread soon. It can't be long before casting is a first line of treatment for infantile scoliosis, can it? I hope not. Just out of curiousity I did a google search last night. Scholarly results for infantile scoliosis just since 2012. Just since 2012. One month. 10 published articles about or referring to infantile scoliosis. Of them, half speak about casting as the preferred treatment for infantile scoliosis. The other half, don't dismiss it - but the focus of the article isn't about treatment. The very first article is extremely intriguing to me: ************************************************************* Three Solutions to a Single Problem: Alternative Casting Frames for Treating Infantile Idiopathic Scoliosis Halanski, Matthew A. MD; Harper, Benjamin L. MD; Cassidy, Jeffry A. MD; Crawford, Haemish A. FRACS Study Design: This is a technique article discussing 3 alternative frames for casting children with infantile scoliosis. Objective: To provide surgeons with alternatives to expensive specialized casting tables to allow local treatment of these children utilizing readily available materials present at most institutions. Summary of Background: Casting for infantile scoliosis has become more popular as reports have shown promising results with this technique without the morbidity and complications associated with more invasive procedures. However, without a specialized casting table, treating these patients has been limited to a few centers throughout the country often causing patients to travel large distances to receive care. Methods: Three different alternatives to commercially available casting frames are presented. Requirements, setup, and techniques are discussed. Results: Each surgeon has had success with each of these frames. These provide adequate support and traction while allowing enough access to the trunk to apply a well-molded cast. Conclusions: Cotrel/Metha casting for infantile scoliosis can be accomplished without a specialized table using commonly available equipment. (C) 2012 Lippincott Williams & Wilkins, Inc. ******************************************************************* The full article has not been published yet, but I have requested a copy from the researchers. I look forward to reading what they've found. Tink's success and this tide of research... it spells good things. I think there is a definite upswing in the works!!! Victory is sweet:) It was cast day again in Chicago. Two sweet babies received new casts. And each family was given updates on their progress. One received great news. For the other, it was ambivilent. Not great, not bad.... but no change.
As a parent, all you want is to be able to take away your kids pain, protect them from harm and offer them healing. But this scoliosis thing - it's so out of our control. Each cast day or follow up appointment; we just don't know what to expect. My friend's post today brought me right back to one of those days... It's an emotional roller coaster to say the least. And it's so HARD TO EXPLAIN! I've tried before... but here goes again:) You don't know whether you should hold out hope that there was correction, or if you should brace yourself for bad news. And although you try to do both in the weeks heading into an appointment, it's hard to deny the human nature of hoping for the best. Even if you try to keep it as a really quiet voice in the back of your head. It's still there. You still imagine the reality. A reality that doesn't involve repetitive anesthesia and serial casting. A reality where you can cuddle with your child whenever you want, tickle their ribs on a daily basis, and simply bathe them when they are dirty. I've been there. You try to keep that vision quiet as you head into the hospital. But it's hard. For any and all of you that may benefit.... The most helpful book I've read in recent years is "Lessons in Loss and Living". It's mostly focused on dealing with grief. And although you may think you'd only need this book when someone close to you has died, it's about so much more than that. We all feel grief... whether our loved one has passed or just faces a reality that is different from what we've all envisioned. My mother pointed out very early in Makenna's diagnosis, that there is such a thing as the 'grief for the death of a healthy child'. Not that the child has died, but that all those thoughts you had for them. all those dreams, all those hopes, everything you'd ever thought there life could, would, or should be - might not. I knew in the beginning that the most real feeling I was feeling was grief. But I felt guilty for feeling it. My child was alive. My child had not been given a death sentence like cancer. We had found a treatment that provided hope. The first person I ever told about Makenna's diagnosis responded with, "Oh, dear. What does this mean? Will she be in a wheelchair?" And I immediately felt bad for the tears. Well, no. She won't be in a wheelchair. And you know what... I'm wasn't really sure what it all meant. I just knew that I was sad. I was angry. And I wanted to pretend it wasn't real. I was in shock. I hadn't been able to process it all and there were times and moments that I had forgotten. As if by not thinking about it; it would disappear. I'd wake up in the morning and for the first 10 seconds everything was OK again. I was in pain. And I felt guilty. Why hadn't I noticed sooner? Why hadn't the doctors? What could I have done differently that would have changed the outcome? I was angry. Why Makenna? Why my baby? Why my family? What had we done wrong? She was just a baby. How could this happen? I was depressed. We all have dreams for our kids. I had to reflect on all of these and see which ones I had to throw out before she even had a chance to try them. What I had thought about her reality; just might not be possible. Could she be an Olympic Gymnast? Well, probably not. In fact, gymnastics or any other sport just might not be in the cards for her. I still don't know. Kind of hard to come to terms with something you don't know the answer to... All of these things are typical stages of grief. Shock, guilt, anger, and depression. And all of these emotions come up with each cast. Each check up. Each x-ray. It's like experiencing a death in the family every 12 weeks. Which is why our veteran families become numb. No one can handle that kind of grief on a cyclical basis. It's just not healty. So the coping strategies carry through. But they can't possibly always work. This experience, this journey, has taught me so much about the importance of human connection. Share your struggles, share your smiles, share your failures, and share your victories. It's a human experience and you are going to need all the support you can get. I am, for the most part, past all the feelings that resemble grief. I still feel them on occasion - like tonight. Makenna fell asleep on the way home. I put her to bed without her brace on. What damage have I done? What if this one night makes all the difference? Will it be OK? OMG - her next appointment isn't until May!!!!! It will be forever until I'm certain. All of those thought go through my mind, but in the big picture I know one day can't make the difference. My rational thoughts far outweigh the irrational:) So, I am on the other side now. I feel very empowered and fully accepting. Well, I am still a little nervous when I look at her back and on (very few) days feel the need to highlight her spine with a sharpie. By the way, I've haven't yet caved to the temptation of the sharpie... I am not sad. Or angy. Or depressed. I feel very confident that this experience has happened to our family for a reason. There is a greater plan. Last year at this time, I remember very clearly being terrified. I wanted desperately to believe in the hope of a New Year. To relish in the possibility of a fresh, clean slate. But I couldn't quite get there. What if 2011 was worse than 2010? No one could actually guarantee that this new year would be better, so where did all these people get hope? What if we hadn't hit rock bottom yet? What if there was something else waiting?
I don't have that anxiety this year. I am confident in my ability to handle whatever it is that life has to throw at me. I can do it. I can handle it. It won't matter. I have my family. I have love. I have support. I have strength. Whatever this New Year has in store for me - I will meet it head on. The other day a friend posted on Facebook..... 2012 in one word? Only one word came to mind. FEARLESS. I have spent a lot of time and energy worrying about things I can't control. Things that I shouldn't control. And I like to think this new trend has only been since all the medical stuff with Makenna... but let's be real, I've been doing that all my life:) I need to let go. Let Go and Let God. That's the underlying motto, but in ONE word; it's FEARLESS. Happy New Year! Here's the final re-cap of our appointment yesterday.
For the last month, Makenna has been out of her brace during the days; she was only supposed to wear her hug machine at night. We kept to this most days... unless mommy was a little overly paranoid in the morning, or those days where she actually ASKED to keep it on. I followed my instinct on this one. To say the least, I was a nervous wreck last week. Borderline-crazy, irrational mom. I was convinced her curve was getting worse. I could just tell. And I was stuck in this place of no control... a place I think I'm going to have to get used to. In an attempt to regain some of that precious control, I tried to prepare for the visit. I have found myself one too many times sitting in a specialist office literally speechless after receiving an update I wasn't expecting or news I wasn't ready to hear. My mind doesn't think fast enough to ask the right questions; so I end up just nodding and following directions. I didn't want that to happen this time. So I sat down and thoughtfully made a list of questions. Well, two lists of questions. One was for CASE A - the curve is the same; and one for CASE B - the curve is worse. So off we went, list in hand, for her "lucky" appointment. 11/1//11 at 10:15. We checked in at the hospital, waited a little, filled out some paperwork, waited some more, went to x-ray, waited again, and then more paperwork - this time a research questionairre on how the scoliosis is affecting the patients feelings about their personal appearance and if they think they look good in clothes, etc... that was easy in reference to a four year old! We meet some new friends, were entertained by some clowns, entertained some clowns and then they called her back. 10:50. Height, weight and change into a gown. We talked to the nurse a little and she looked Makenna over. "He'll be in shortly". Makenna drew on the chalkboard to pass the time while Dave and I watched the clock... How close to 11:11 would we get we wondered? And what did Dr. Sturm think of the x-ray. We had seen it, it looked pretty good.. but what would he say about it? 11:08 - "Mommy, I've got to go to the bathroom"... Of course you do. So, I gathered her up shuffled off to the bathroom. I checked my phone when we walked back in the room, Dr. Sturm was following... 11:10 It wasn't very long after he walked in the room that he sat down, crossed his arms over his chest and said, "She looks great". We're calling it 11:11. She had maintained. There was no difference in her curve. It's been somewhere around 14 degrees since July. Even only wearing it at night. This was very good news:) He was tempted to have us ditch the brace for good. So, there I sat in a specialist office speechless. I even said outloud, "Wait a minute, I don't have a list for that one!" I hadn't even considered that as an option. Completely brace free? The thought hadn't even crossed my mind. After some discussion and weighing the situation carefully, we decided we will keep her in the brace at night. And will probably continue to do so. With the HGPPS, we are in completely uncharted waters. There just isn't a lot of orthopedic data out there about early management. The most I've ever gotten from those who've seen the most cases is that the curve is resistant to treatment. No one has been able to successfully manage it with early onset like Makenna. We have. And no one involved is willing to loose that edge. We go back in 6 months to see how she's doing. Six months is a long, long time... which is why I am going to work on being comfortable in a place of little control:) I recently summarized our experience and research regarding reading with in response to another families question.... thought I'd share it here, too.
Reading has always been my greatest concern and a question I have asked each family I've encountered. Until a few months ago, Makenna was the baby of the group of people I knew with HGPPS...so I was asking questions of older children. Makenna's website has gotten me in contact with several families with HGPPS. I think I need to come up with a questionairre and send to all.... compile the data and share with everyone. It seems like the best way to share everyone's facts if not everyone's story. Makenna doesn't read yet (she's four), but she can identify numbers and letters in sequence and can write her name, her sisters name, etc... with no problem. She does invert and mirror her letters sometimes, but nothing that isn't age appropriate. Others with older children have reported different things...some that they needed assistance reading, or it took them longer to read and therefore needed adjustements with timed testing in school. While these all make sense to me, I don't feel this will be the case with Makenna. I think we got Makenna's diagnosis early enough to be able to proactively provide her with the tools she will need. I am a firm believer in not handicapping my children where they don't need it. I have talked in great detail with all kinds of vision specialist to try to gain insight on what Makenna might need. But I won't provide it unless it seems she does indeed need it. I spoke with a specialist at the local school for the blind ( I know, it sounds crazy) and she gave me great suggestions for things that might help Makenna if I am noticing her having problems as she develops. A. A slantboard. Your head is really heavy. If you look down at a piece of paper it is harder to control your head. You have more muscular control over the position of your head if you are looking straight ahead. A slantboard would put a book or paper straight ahead as opposed to on the table. B. A line marker. Simple. Any child with HGPPS will ultimately have to move their head to read. In speaking with her I learned a very important terminology difference. I always just said Makenna couldn't track with her eyes. While this is true, she also cannot trace with her eyes. Tracking is when your eyes follow a moving object; tracing is when your eyes follow a stationary object. When you read, your eyes are tracing. Since she won't be able to trace the line with her eyes, she will need to move her head. In order to help reduce the risk that she looses her place, a line marker may be needed. C. A tracking game. I haven't done this with Makenna in a while but it was something the woman suggested. Makenna did it quite easily, so I stopped doing it after awhile. Draw a line on a piece of paper, a jagged moving line (not straight). Take a little toy - anything... a "little people" or a small plastic animal, anything will do. The parent takes the toy and has it "walk" on the line. The child's job is to watch the toy. Every now and then have the toy "fall off" the line. The child is supposed to tell you when that happens. You shouldn't just have the child hold the toy and guide it one the line because that involves more senses. Have their only sense be visual tracking. It's funny, because when we first got the diagnosis I racked my brain for the limitation Makenna might have.... and I came up with two things (scoliosis excluded): She will move her head side to side as she reads. People might not even notice. Except for some really mean kid at school. I can deal with that. She will never pass a field sobriety test - follow my finger.... hahaha... she just better never find herself in the situation :) Not sure there's a card to carry to get yourself out of that one! The only other thing we have noticed about Makenna's vision is that she needs to put her head close to something to really see it. I can't tell if it's just annoying 4 year old behavior or if it's really necessary, but it does exist :) If I am reading a book to her, she will often put her head in between my face and the book to see the print or the picture. She does have excellent visual acuity. We often do look and finds or hidden pictures and she is very good at both. Makenna currently is in a Montessori school and will go to Kindergarten next year. I have been very candid with her teachers regarding her condition. It's hard because part of what I have to tell them is.... "We just don't know exactly what to expect, so keep your eyes open and let me know your thoughts and feedback". There isn't a lot of functional data or statistics on kids with HGPPS. Maybe that's the gap a survey can fill... This whole thing has been fairly difficult for me, but I always fall back on the advice of a friend ~ "There is a gift in there somewhere". I feel strongly that the gift is sharing Makenna's story and reaching out to others that face the diagnosis. This little website has found it's way around the world. I have gotten e-mails from the States, England, South America, and most recently Australia.
I am so happy that the google search is sending people in the right direction :) But at times, it just adds frustration. There is a family in Brazil who has a child with infantile scoliosis. The family only speaks Portugeuse, so the communication is slightly limited. There has been no implication that his child suffers from HGPPS ~ just infantile progressive scolisosis. "JUST" is an understatement... since that is the most complicated part of HGPPS. In Brazil, casting is done. But only to control the curve ~ not to correct it. WHAT? Well, yes. They put the child under full anesthesia, apply a plaster cast that molds the current curve and hope to hold the curve until the child is old enough for surgery. I shouldn't mock so much. The first orthopedic doctor we saw wanted to put Makenna in a brace until she was old enough for surgery...so I suppose it's not so different. How can we get this word out there? There is a possible CURE for infantile scoliosis. It will save children countless years of surgery and pain. It will save insurance companies millions of dollars in the long run. Why doesn't anyone want to listen? Why isn't casting the first line of treatment in infantile scoliosis? This treatment was brought to the United States by a single pissed off parent... WHY? Why doesn't the research spread? The child in Brazil got a cast. A cast that completely covered her ribs and stomach. She had trouble breathing and couldn't eat. Her parents chose to take the cast off and have a brace molded. I would too. That doesnt' make any sense to me.... they have a child under full anesthesia, and can apply a plaster mold(cast).. it's one more step to gently correct the curve while applying the plaster mold (jacket/cast) and then AFTER the application cut holes to allow for chest wall expansion. Why is that so hard? I must say, this treatment has been available in the US for less than 10 years, but that seems like enough time to educate the world. Maybe not. But what is one parent supposed to do? And while the frustration of not enough treatment available lumes over my head... I got an e-mail from a family in Australia. Their son is suspected of haveing HGPPS. He shows all the vision signs and the MRI seems consistant... yet scoliosis hasn't entered the picture. I find this intriguing. I have often thought we should have known the diagnosis for Makenna much earlier, but her scoliosis wouldn't have shown up until 2.5anyway. So what would we have done different? Nothing probably. We caught her curve so early that I don't think there' s a better case scenario for us. But what if we had known.... that it was coming? I'm not sure that's a great place to be. Constant worry. Complete obsession. No concrete answer each day. Oh, wait... that's where I'm at. I guess it's that same no matter where you are at on the journey. Beginning, middle or end... if your child is not fully grown the worry won't end. I'm just a mom. I don't have all the answers.... but I'm working to find them... Makenna's next appointment was originally schedule for November 10th. Well, the hospital called and needed to reschedule... we could do the 11th. Works for us :) And then as I put it on the calendar, I realized the significance of the date.
It is 11/11/11. As a teenagr,e I religiously obeyed 11:11 make a wish. I have since watched this transform through generations... not only do you make a wish at 11:11, but apparently you also kiss your kneecaps (!?). I may not understand all that, but I do know that the very thought of 11/11 makes me think I can make a wish... To make it even better... our appointment is scheduled for 10:30 am. That leaves every possibility that we could actually be in with the doctor at 11:11 on 11/11/11. Just sayin'.... Well, as all superstitions go you know I can't tell you my wish... but if you read my blogs, I'll bet you can guess :) My dear friend Catie has begun a blog on ChicagoNow called Suck It, Scoliosis! It chronicales all the things we hate about scoliosis and how we fight back each and every day. The other day she offered an interesting proposition.....
"What would you say to Scoliosis if you had a chance?" Here is my Dear Scoliosis letter.... |