Monday, January 30, 2012

Facts Provided by Shriners Hospital website
Clubfoot, known to doctors as talipes equinovarus, is a congenital (present at birth) abnormality of the foot.  A common birth defect, clubfoot occurs in approximately one out of 1,000 births in the United States. Clubfoot describes a variety of foot abnormalities in which a newborn’s foot is twisted inward. The actual term, “clubfoot” refers to the way the foot is positioned at a sharp angle to the ankle, similar to the head of a golf club.
Clubfoot can be mild or severe, affecting one or both feet. In most cases, clubfoot causes the top of the baby’s foot to bend downward, increasing the arch and turning the heel inward. In some instances, the foot may be severely turned so that it looks as if it is upside down. Also, the calf muscles may be under-developed, making the affected foot shorter than the other foot.
Clubfoot can inhibit a child’s ability to walk, but  with early treatment the appearance and overall function of the child’s foot or feet should show improvement.
While the actual cause of clubfoot is unknown, the condition can run in families and occurs more frequently in males.  Some studies have linked clubfoot to cigarette smoking during pregnancy in susceptible families.
Diagnosing Clubfoot
Clubfoot is usually diagnosed during the initial physical examination of your newborn. The doctor can recognize clubfoot by looking at the shape and positioning of a newborn’s feet. The doctor may request X-rays to fully understand the severity of the deformity.
In some cases, clubfoot may be diagnosed prenatally by ultrasound after the 16thweek of gestation. While no treatment can be done prior to birth, knowing that your baby has clubfoot may give you more time to get in touch with the appropriate health experts who can help treat your baby after he or she is born.
Since a newborn’s bones and joints are flexible, treatment for clubfoot generally starts soon after birth. The goal of the treatment is to restore the look and function of the affected foot before the onset of walking, preventing long-term disabilities. The treatments offered at Shriners Hospitals for Children® will vary depending on the severity of the condition.  Treatment options may include:
Stretching and casting (also known as the Ponseti method):  Stretching and casting involves manipulating your child’s foot into the proper position and then casting it to maintain the position. This process occurs weekly for several weeks until the shape of the foot has been corrected. Once the shape has been aligned, the foot is maintained through stretching exercises, special shoes or splinting with braces at night for up to three years. For the bracing to be most effective, you will need to apply the braces according to your doctor’s specifications so that the foot doesn’t return to its original position.
Stretching and taping: This treatment includes daily manipulation of your child’s foot and taping to maintain the correct position until the next day. Usually after two months the treatments are reduced to three times per week until your newborn is six months old. Once the shape of the baby’s foot is corrected, daily exercises and night splints continue until they are walking.
Surgery:  Surgery is sometimes necessary in more severe cases or if the stretching and casting approach does not correct the clubfoot.  A pediatric orthopaedic surgeon can lengthen tendons properly position the foot. After surgery, your child may need to wear a brace to prevent any recurrence of the deformities.
Although clubfoot may not always be completely correctable, in many cases newborns that are treated early are able to wear normal shoes and lead active lives.  The most important aspect of care is early diagnosis and treatment, so if your child’s doctor identifies a clubfoot, starting treatment as soon as possible is a key factor in ensuring a successful outcome.

Tuesday, January 24, 2012

Pictured here: Back pair of  Magic Shoes he just received and the front ones were his very first pair!
Wow he is getting big

So I thought I would start today with going back about 3 .5yrs to the birth of our precious lil man. As I already explained nobody could help us answer our questions so we filled out an application to be seen at Shriners hospital, within the day we had an appointment to go to Spokane and have him looked at by the doctor there! 
July 23,2008 is a day I will remember for the rest of my, we loaded up in our car and headed for Spokane. We were all very nervous for what we had ahead of us! So 3hrs later here we are when we pull up to the hospital it is so beautiful, in all of our trips to Spokane we had never seen the hospital. It is not what I had imagined. It is bright and clean friendly and very welcoming! I think we felt right at home as soon as we walked in. 
We checked in and waited, we only had to wait about 15min and we were in the room where the doctor would be examining our lil man. I know I was so nervous I thought I would be sick. When I was in the waiting room all I could think of was, are they going to tell me it was something I did when I was pregnant. I did everything I normally would do, I didnt let being preganant slow me down. Did I lift too much, use the wrong clenaing products, did I gain too much, did I did I did I? Drove my self crazy. I felt so out of control, I wondered  how many surgeries he would have to have. How much pain our tiny lil baby would have to endure, would he walk, climb, run, jump? Would he be picked on by other kids for being born different? Kids can be sooo mean. Will he blame me? Does my family think I did something to cause this? Thank goodness the nurse called us in or I might of had a break down.
So here we sit and wait in our examining room, we were in there maybe 5minutes when a nurse came in and weighed and measured him, she was awesome her name was Cheryl, we loved her. Then about 4 more people came into our room, there was Dr. Thompkins, another nurse, our care co-ordiantor, and someone else I cant remember. They introduced themselves like usual and tell us what is wrong with his feet. Can you believe they told us there would be NO surgeries, Oh my gosh just typing that right now I am crying. We couldnt believe it, they told us that they will push his feet to a better more normal position and then hold it and someone else will wrap it with casting material. When the cast dries and holds his foot in place the tendons will naturally stretch to a more normal position. This process will take time we will ahve to come over once a week for 8weeks for new casts. You see babies tendons and bones are so much softer right now that they can be manipulated into a better position. This was such an amazing relief for us. NOOO Surgery, you cant even imagine how we felt after that. So after a brief explanation of what to expect over the  next 18yrs, they whisked us off to the casting room where they put our lil man into his first set of casts they were so little. He was uncomfortable we felt pretty bad for him. After our appointment our next adventure was learning how to live with these casts, our first bump was his car seat. He was still in the cradle type car seat with the base it locked into, well with casts that dont bend that seat was not going to work anymore. It was too deep so it piched his legs at the groin. We adjusted it the best we could until we could get home and get a new seat. You see since our first visit to Shriners we have had to get pretty creative about some things around our house. Bathtime was tricky, changing his diaper was to say the least tricky, we tried very ahrd to keep his casts  dry and clean however when a baby has the new baby dirty diapers they dont always stay in the diaper so there was a few sets of  casts that had a bit of  you know what on them. Lol The doctors said that was absolutely normal, geez I sure hope so that would be embarassing. 
Through all of this lil man has been strong and very determined, his big brother has been awesome very devoted to making sure his baby brother is happy and comfortable. Bubba would read to him, play with him on the floor anything to make lil man happy!
I could really go on and on and on about our visit to Shriners and how they made all of our worries basically diappear. They told us our lil baby will walk and run and jump and play as if he was born with normal feet. Oh my gosh I cried and cried and cried I was absolutely elated. It was not going to be a quick or easy process but we were ALL ready to take it head on! So the journey really started on that day!
These are the Ponseti Shoes that he has been wearing since about 12weeks old.
His first pair he had to wear all day everyday, all pairs after that he has had to wear every night all night long to keep his feet stretched.

Saturday, January 21, 2012

January 16th 2012 was our 6 mos check up at Shriners for Lil Man. Our check up didn't go as good as we hoped he has a foot that is lifting and turning in on us. This is something that I take alot of blame for, every night that he wears his magic shoes I have to wrestle with 2 things one is the mommy in me that doesn't want her baby to hurt or cry and the Adult that knows he needs to wear them as much as possible to assure that his feet will stay where they need to. I know this and of course I only want what is best for him, I would love to say it is so easy to just let him cry but when you hear your little one cry "Mommy Mommy my feet hurt" and he cries and cries, I think any parent would find it impossible to leave and not comfort him or relieve his pain. The only way to relieve his pain is removing the bar on his shoes. Yes I know I shouldn't do it but, we both need sleep and I cant stand to hear him cry! Well I am sure because of that we are where we are now and that is that if it wasn't for the fact we live in Montana and the hospital is in Washington our Lil man would of came home with his about 17th pair of casts on to stretch and move his foot back where it should be. Yes I know what I did is not right I know this but you have to put yourself in my shoes for a minute. So we have until March to stretch feet and make sure he wears his shoes no matter what every night all night long no matter how much sleep I dont get, his feet are more important, I can nap if needed, RIGHT? I have to just have to buck up and deal!!!
       So here I am on my 6th day of  not giving in to his cries at night and we are both lacking sleep. The 1st night was not good at all he was up about every 1.5 hours crying in pain so I  repositioned him and loved him letting him know that I am here and that we cant take off his shoes and reassuring him that he can do this I know he can, he is such a strong boy.  Night #2 was pretty much the same Night #3 I just got off a 12hr shift and then up every 2 hours with Lil Man doing the same the only difference is his bed is about 2.5 ft off the floor and he managed to get his feet with his brace over the edge of the bed rail and the weight of his shoes and legs pulled him out of bed and hit the floor, oh my gosh talk about give a parent a heart attack, I felt so bad for him. He was so confused as to what the heck happened. So now dad has created a fortress for him complete with an air matress attached to the side of his bed securely so he cant roll out. We have a comforter and pillow at the end of the bed and 2 large pillows on the floor. This will buy us some time until we can build something. Believe me when you are a parent of a child with something like this you can get very creative trying to make them comfortable and safe! I remember when he was a new born and we had to find or make clothes for him to go over his Magic shoes, because back then he had to wear them 24hrs a day!
           As of last night he has wore his shoes every night all night long, not without problems, crying, pain and falling out of the bed but all that matters is that he is doing it and we I am massaging his feet and stretching them too! As I watched him run all over Lowes and Home Depot tonight, to watch him from the outside you would not even know that he was born with messed up feet.  I have such pride and  admiration for him he is an amazingly strong and determined child, he isnt going to let anything get in his way! I am so very proud of both my children they are both very unique in their own ways, they are amazing! We are so very Blessed.
           I dont want you to think that my writing this story is so I can complain and whine about our situation. It is not! I just want people to know what we have been through and if you know anyone who might benefit in our experience, that might like to have someone to talk to if they are going through this too I am there for them! I am Very Thankful EVERYDAY that we are not dealing with anything more serious, I am Thankful that our boys are happy and HEALTHY and so are we! We have learned to live with less and live more simply! The most important things in life are the people that love you!!!! I Love my boys with all of my heart and I will be there for  them Forever no matter what!

Wednesday, January 18, 2012

More thoughts.........

I would like to share these pictures with you, these are little mans feet, the other day when I was doing his massage therapy on them I noticed that on each foot he has prominent crosses! A sign or symbol? I am not sure what I think or feel about this. In some way I feel that it is our little sign telling us that he is there for us and we will be fine! I am not a really religous person, I do believe in God,however in some sense I am not exactly sure why? I have had times that I am mad at him because of things we have been through and why, like the death of my dad and grandpa, and having to go through other trials in our lives such as lil mans feet and all that has put us through, but there are many more times I find myself  Thanking him for all the little things and big things he has blessed us with.         
I love these little feet I remember when he was a newborn we would sit on the couch and I would massage and stretch his feet he would cry and cry and then I would cry and cry, we were quite the pair. Now when I look back at what we have been through since he was born I feel like God was trying to tell us something, he was trying to teach us something at the time. I sit and wonder what the teaching was suppose to be. I feel that he wanted us to stop taking things for granted, stop making choices that we would regret later. We didn't really make sure that as a couple we were strong together, we thought we were but early on in his treatment we realized unfortunately a little late that we were not a strong couple. We had to stumble as a couple and learn how to start building a stronger realtionship, if we didnt we wouldnt be a whole family, we would still be together to help lil man through this but if we didnt fix ourselves we wouldn't be a couple any longer. It has been a long road of lessons and bettering ourselves to still be here as a whole family pushing through and I believe we are a stronger and better family now. I remember the quote what doesnt kill you makes you stronger, boy is that ever the truth!

Tuesday, January 17, 2012


The picture on the main page of my blog behind the title is a picture from shortly after little man was born. This is how his feet were when he was born. Every time I look at these pictures, I am amazed and emotional, tears well up in my eyes, not only from sadness because he has to go through this but pride because we are making it through this too. We as a family a whole family. Every one of us play a crucial part in little mans treatment. Reminds me of a saying that I have heard that I love:
 "You never know how truly strong you are until being strong is the only choice you have"
 This is so true!

Day 1 of my new Blog

I am not sure who will even read this blog, I hope my family at least. However I am really and truly hoping that through friends and family their will be at least one person that might be starting this path we have already been on for 3.5 yrs. that will read this and take away either information or inspiration and strength that they too can get through this and be stronger for it.
     We started our adventure taking care of and having treatment for a child with Bilateral clubfeet. Bilateral clubfeet means that both of his feet were effected by this birth defect. Our little guy was born 3weeks early weighing 8lbs 10oz and 23in long. He was born absolutely perfect!We knew that his feet were not right to say the least but the rest of him was healthy and perfect.  We were very taken back by his feet, the hospital couldnt tell us what to do or what will happen next. We were told that it was clubfeet and to call a orthopedic specialist. I was scared to death and overcome by emotions, fear, hormones, so on and so on. I had an actual breakdown in the hospital, thanks to my husband reassuring me that everything would be fine that we would do everything we could if it meant millions of dollars in surgery or PT thats what we were going to do so that our little boy could walk normal and grow up to be a very active boy. We were determined to help our baby just like most parents would be and since nobody could really help us at the hospital we called a specialist and he came in and evaluated him. He told us right away that we would need to go to Shriners Hospital and have the doctors there evaluate him. So they got us an application we filled it out right away and sent it in. Within the day we were contacted by Shriners and had an appointment for July 23rd 2008.
      I would also like to tell you about our other son, he is 10.5 yrs old now and he is the most loving caring and supportive Big Brother I could of ever imagined for our little guy. From day one he hasn't missed any  appointments even though we have offered for him to stay home with friends and relatives and have a lot more fun than sitting in a hospital room waiting for his brother to be treated  but he wouldn't leave his brothers side, and to this day he hasn't missed one appointment. Bubba(thats what little brother named him) has sat in the room while they were casting little brothers feet and he would talk to him,trying to sooth him by play his music box for him, anything to try to help him to not cry and know that we were there and wouldn't leave him. Bubba would talk softly in his ear and kiss his cheek so sweetly just to let him know how much he loves him and wishes he didnt have to go through this. Bubba  has been there through it all, to this day they are the Best of Friends!!!! Well I have to go for tonight cant keep my eyes open. Please if you know someone that might like to read my blog please share I know there is a reason my family has gone through this and maybe we werent meant to help someone else, maybe just knowing they aren't alone in this. I know I would have loved to have someone to talk to about Club Feet and knowing I wasnt alone would have been wonderful!