Club feet....(OT baby related)

Great photos !! First let me say he is NO WHERE near the worst I have ever seen and I understand why a "gp" type of doctor would have blown it off.   Yes he has issues and Yes You are a Terrific Mom for following through on them.

Keep in mind at the 2.5 year old age they can pitch a snit and howl over every and any thing. So I understand you are concerned he will not tolerate the upcoming work and possible adjustments as well. I would bet the mortgage you are spot on with that assessment. My 4 year old grand daughter can howl as if being murdered if one of her cousins pinches her.

As far as kids go pain is dealt with in and on 4 levels. Pure pain, emotional pain, fear and anger.  Since from 2yrs up they factor in that emotional response on top of the purely physical reaction to the pain of stretching then forcing by splint , cast or surgery  the correction desired. As far as his stitches, goodness out of my 10 grand kids and 5 daughters we have had our share of "boo-boos" ... so far we haven't had any of the Alabama kids break anything but we sure have had a couple of cases with staples or stitches !  Like when I RAN over the now 4 year old!! Talk about a rough day !!

Here is something to keep in mind , if you are  in an apartment or townhouse, duplex etc with neighbors really close , if you are not tight with your inlaws or relatives,  If you use day care services and if you go to church or anywhere else they kids may be in someone else's care for any period of time from 20 minutes up... ...NOW is the time to make friends with them.  I am not talking about being BFF but I am saying make sure they see and know what loving parents you are and how important the kids are to you. At some point after this is pretty clear to them, let them know that the kids will have medical treatments coming up and you worry they will not like them.   Later IF you feel they are receptive and show any interest or concern mention with brevity the general process to be expected. And use terms like equaling the stretching of the muscles to straightening of teeth.  WHY?? it saves you from having to deal with busy bodies later who may want to create mischief or may not understand why a kid will cry as if hurt.  A devoted parent should NOT have to deal with stuff like this but it does happen.  Protect yourself and your family by being very matter of fact and loving about it.   I used to get furious when some moron would make one of my already tired parents feel badly or have to justify what is going on. Like a child with CP and having a neighbor watch her treatment which included pounding the mucus free in her lungs.... the sheriffs showed up twice before we could get this nimrod to understand this was not abuse !!  Yes by all means having concerned folks report child abuse is vital, but darn it there is a huge difference between abuse and a loving parent trying to correct an orthopaedic issue !!  SO talk this out with the DH and make sure you are all on the same page,  it will eliminate the possibility of confusion and problems in the future.

While we are talking about perceptions and attitudes allow me one moment to mention very , very close friends who have a 3 year old fighting the fight of her life. She fell in the family pool  two months ago. This is one of 4 children they adopted out of foster care.Birth Parents who were selfish and brutal, a mother with an IQ that would have made a fast food job too difficult to manage and a father who was an MIT grad , he figured out that he carried a devastating genetic disorder that would keep any children on public assistance for life making it unecssary for him to work...so he and his (literally) retarded wife began churning them out.  There were 4 removed from them when they arrived in my friend's home state. ( there is one "lost" in paper work, no one has a clue where or what happened to it)  The kids are all afflicted with DeGeorge's Syndrome and  varying levels of Autisim,  wow the health issues !, the oldest has had 3 ( THREE) open heart surgeries and he is only 8 years old.  The child who fell in the pool was the "normal" baby.  Bright, funny and a giggle, she is spoiled rotten and adored.  Some how, ( the thinking is one of the older kids) opened the 3 childproof locks during nap time allowing the baby to to get out on the pool deck and fall in.Mom doing  CPR and ER response teams brought her "back" but she is non responsive about 85% of the time. Has not said one word and is unable to breathe correctly on her own. She will be leaving the NICU at Vanderbilt Nashville and going to a State of the Art Therapy center in Atlanta.   The parents would have thrown themselves on a grenade for the kids.  They changed their world for them, they have had to deal with the potential loss, the medical issues, the loss of income as they have stayed at her side since this happened for the first month, and now they alternate who is there 3 days in a row.  They are still caring for the other 3 siblings.  They should not have to deal with ignorant people EVER but they do.  when these children arrived broken, lice ridden and dirty they were the ones who corrected everything, when they had zero idea of table manners or owning a small possesion it was the parents who taught them.... I mention this because like you they adore their kids and now among all the rest of the things they must deal with they have jerks who try to make life more difficult and make them feel even worse.  This is LIFE, things happen.  Honor, Grace and Courage   show up in the way we deal with the things that do happen.

Your son will NOT like the treatment but surprizingly he will  adjust. there are ways of helping mentally prepare him for this. Select books that reflect the need for this type of change. There are many out there and of course off the top of my head I am drawing a blank on the ones I used to read the kids.  When you take the baby to the doctor chat in a very matter of fact manner with other parents or kids wearing orthodic equipment.  Do NOT ignore them,  Do not expect them to have a magic answer, just learn and teach your children to accept they are part of a very cool club. Kids who are different and who will have such an adventure ahead of them !!  It is up to YOU to choose how to react and how you would like your children to grow up . 

 As a mom of course you are worried about pain and the child's ability to deal with this massive challenge.  The doctors will NOT allow your son to suffer more pain than they can avoid.  Some pain is a simple fact of retraining and redirecting the muscles.  Does this sound callous? I hope not. I am simply hoping you will find a better way of "seeing" what will be ahead of you.  Both being a RN and a two time cancer patient I had to learn to make adjustments to a very tender heart. Initially to help others, later to assure my own children and family would not have to live in fear of what  may be ahead.  I developed and autoimmune disorder about 15 years ago that means I live in and with pain every minute of every day of my life.  The amount of pain killers I am on would flat out knock a regular person out! But due to the pain, it simply keeps me able to function every day.  I have to choose how I am going to function. Thank God for my Mom, she taught me a lot about choices. And about how to handle them.  The Old Lemon and Lemonade theory of life.... 

Sweetie it is Never too soon to teach your kids to make Lemonade.  And you have many folks on this list able and capable of helping you ...anything I can answer or help with Please PM me . I will happily send you my private e addy and phone number.  You have a huge challenge in front of you , let's make it into an adventure!!

Big Hugs

Bonita of Bwana

 Thank you Bonita, I swear you seem to have helpful answer for everything and about every topic. You are a very knowledgable person who has been through so much, you are one tough cookie!

Unfortunately I already know what you mean about perception and such. Everywhere I went with Aistlinn when she had her casts I got VERY dirty looks. Even when I brought her to the hospital to get them changed an older lady glared at me and actually shook her head like I was this awful mother and I MUST have done this to my child  I feel like I should wear a T-shirt that says "No I did not hurt my baby", because of the looks I get even with the splints on. I get judged enough as it is being a young mother of two children, now imagine both of my kids in splints/ casts and what people would think..."young irresponsible mother and its probably her fault her kids are in casts..." I see it now...I can practically hear it in some of their eyes when they see my daughter. I try to just brush it off my shoulder for the most part.

 Thankfully I own my own house so no neighbors are not too close to me where it would be an issue. I know my son will be uncomfortable and it will most likely make him cry from frustration for the first while. And if we are outside or anything, and he started screaming I know I could handle anything my neighbors might say. I REALLY don't like my neighbors though. We do not get along- he is middle aged guy who parties during the week all the time, and my other neighbor is young guys who party lots too and are loud. In public when my son has a temper tantrum it honestly doesn't bother me, I don't get embarrassed and for the most part I could care less what people think. I just tell my son he looks silly doing that and make him laugh, works everytime.

I am relatively close with my in-laws and my kids never go anywhere without me- unless its to my MIL or FIL house, so I'm safe in that aspect. When I take the kids to see the OT, there is no other parents around with kids. They take you to this small room and talk with you and such. Even in the waiting room there are usually only old people there in wheelchairs. I wish there was someone else IRL that I could relate to with all of this. Most people my age (21) are not into family life or kids like I am.  I'm on a different level than most people my age if that makes sense.

I am SO sorry to hear about your friends daughter. And I am even more sorry to hear people are making their lives miserable. Sometimes I wish people would just butt out. I hope their little girl gets better soon.

I appreciate your advice about "lemonade" that is how I live my life. I have had a very hard life and lots of health issues and I learned over the years to make lemonade as you say. I never want my children to feel as though they are not as good as everyone else or anything like that. I have always been the rock of my family and I hope to lead by example. This will be one tough thing of many tough things my kids could go through, I know that. As much as I hate that, it is life and there are certain things in life that can't be changed, only dealt with. Of all the hard things I have gone through you will never hear me complain about them, sometimes I wonder why certain things happened, but over the years I have learned to accept them and grow. I want my children to be able to do that as well.

It will be harder on me to watching my kids struggle- as it is for any parent. But I can't put my fears on them, I know its not fair for me to do that. I just need to guide them through this. I'm really trying hard not to be so angry at that doctor,  I know there is nothing that I can do to change what did and didn't happen, I just have to deal with it now. That's how I work. It's always hard not to dwell on past things, but I know I will never move forward if I look back all the time. 

 *sigh* I could write a good long novel for you all to read. But basically I agree with you on everything and I appreciate all your suggestions Bonita. Thank you for sharing your experiences with me and giving me some peace of mind. I will try not to make all of this negative for either of my kids and try to make it an adventure.

I'm sure I'll feel better once I actually know whats going to happen- fear of the unknown is the worst.

What a crazy journey your family is on - sounds like you all are in good hands and you're a wonderful mom.  Perhaps you really should have a shirt made to help educate others.  Make your own lemonade from the strange looks I guess.

Best wishes to you and both of your sweet kids. 

People may stare at you if both your kids are in casts. Probably more of those would think both your kids were in a horrible car accident rather than you abused both your kids in exactly the same way. They will ask questions and make comments. John, my twin with cerebral palsy crawls not yet walking (29 months old). People can be pitying, judgmental, stupid, nosy, obnoxious, . . you name it.It doesn't bother John that his twin walks. Some days, I tell strangers that ask that he has cerebral palsy and explain what a broad diagnosis that is and what areas are affected in him. Some days, I just tell people that he'd rather crawl, that he has balance problems and is learning to use a walker.

He has been getting therapy for 20 months and has progressed amazingly. I remember how painful those first few monthsw were for me--he hated tummy time and hated things he wanted just placed out of his reach. Because he was less mobile, he spent a lot of time watching his world and being held by me. I am convinced my son would be totally different personality wise if he had been "normal". I can honestly say that someone forgot to tell him he has a disability. He is the class clown at daycare--he loves to crawl in circles backwards to make the other kids laugh. THe kids, if anything, think he is "cool" cause he has this walker that only he is allowed to use. And Gabriella, his twin sister, has and will continue to learn some incredible life lessons because of her brother. WIthout him, I think she would be a brat.

I don't know what your son's treatment will consist of. There probably are yahoo groups for parents with similar kids--I am on a yahoo group for sacramento area mothers of special needs kids and another yahoo group for parents of children with mild disabilities and one for CP.Sounds like your daughter's OT is great. Spend your appointments milking her for information and suggestions. Tell the therapist you are interested in meeting other parents in similar situations.

Mostly, I hear you stressing about the pain your son will go through. Again, get as much info re options from your treatmetn team and then research it. Our local hospital has a "child life specialist" on staff.  She has a therapy dog but also is the one that gives the kids dolls that they can practice their procedures on, gives them books to read, etc. Kids are tough--I know someone whose 9 year old had surgery in Feb to remove a 6" tumor on his upper spine. He was in pain for a week or two afterwards, but within three months, had no issues but a very impressive scar.

Hold your kids tight and tell them you love them. You are clearly strong and are raising strong children.  Take one day at a time.

Agnes 

The only thing I can add is that the people who glare at you probably haven't walked in your shoes. They have NO idea what's happening in your family.  Believe me, there are plenty of kids who are abused every day that look like (outwardly) that nothing has ever happened to them.

Just ignore the black looks and continue to help your kids.  You are being a great mom!