Non-Dog Related

Re: Club feet....(OT baby related)

lorib — Sun, 17 Aug 2008 06:59:50 GMT

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!

Re: Club feet....(OT baby related)

Agnes L. — Sun, 17 Aug 2008 05:16:59 GMT

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

Re: Club feet....(OT baby related)

stardog85 — Sat, 16 Aug 2008 22:09:22 GMT

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.

Re: Club feet....(OT baby related)

Liv — Sat, 16 Aug 2008 21:38:46 GMT

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.

Re: Club feet....(OT baby related)

Bonita of Bwana — Sat, 16 Aug 2008 16:16:16 GMT

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

Re: Club feet....(OT baby related)

Chuffy — Sat, 16 Aug 2008 12:47:25 GMT

Liv:

Awwwwwww!!!!!!!!!!! I just wanna squish her!

I'm sorry I don't have any advice, just wanted to say I feel angry at that doctor for you I wish you all the best for your son. I feel so bad for him that this could have been avoided if the doctor hadn't made you wait saying he would grow out of it!! Best of luck in getting it sorted.

Re: Club feet....(OT baby related)

gradyupmybutt — Fri, 15 Aug 2008 22:20:32 GMT

Vanessa, when I was a sophmore in HS I babysat a baby who had to have her foot/leg casted. It was a loooooong time ago but I remember her not minding the casts while I babysat her. I think she recoverd fine & is now, gulp, an adult. Your girl is soooooo adorable. I love the first shot. She looks so cute sleeping with her mouth open. So precious.

Re: Club feet....(OT baby related)

Agnes L. — Fri, 15 Aug 2008 21:38:19 GMT

Sounds positive that your daughter's OT is going to get him some help. Good too to have the same stretching exercises for the two of them--he can "teach" his sister how to do them.

From personal experience, I can tell you that there is no way of predicting how disabling a problem will be (or what you think you should have done earlier), and that you need to focus on picking from the options presently available to you.

Lastly, my hat goes off to you for getting your son to be still long enough for the photos. I hope things go well for all of you.

Agnes

Re: Club feet....(OT baby related)

miranadobe — Fri, 15 Aug 2008 19:50:04 GMT

Oh, Man, Vanessa! I am so glad to see so many helpful responses posted! The pics of your son actually remind me of a friend's son, and she has gotten pretty lame responses from her doctors, too. I am going to pursue this with her some more. Thanks for sharing what's going on with you and your children.

And your baby girl really is beautiful!! Wishing you all healthy vibes!!

Re: Club feet....(OT baby related)

Liv — Fri, 15 Aug 2008 19:28:38 GMT

Thank you so much everyone for your support, experiences and information. I'm just so happy to hear that all mentioned went on to lead normal happy lives. I don't know if I was expecting to hear bad or good experiences, but I'm happy none were bad.

I agree with you Bonita, Aistlinn has huge pain tolerance because she is so young and she honestly isn't even bothered by the splints at all. Now my son on the other hand I don't think he will tolerate braces/ casts/ splints anything. He is super active kid and I know no matter what they do it will upset him.

My son is 2.5 years old. His and Aistlinn's are mainly at the knee. The way the OT explained it was like there bones wanted to grow outward from the knee...one sec going to take a picture of my sons knee's to show you what I mean...

Okay my son was being a trooper and let me take a few pictures of his legs- please excuse the diaper its really hot in our house right now lol.

As you can see his left leg is the worst. When Nevyn walks he has to swing his left leg out or else he trips over it. His knees actually hit eachother when he walks- which has been the cause to MANY hospital trips for busted lips and bruised shins. His feet can also turn completely inward. Regardless of these issues he still started walking at 8 months old, and its like he just learned to walk that way, like it never bothered him.

I tried from the time he was born to get him to see someone. I KNEW right from the beginning something wasn't right with his legs, but my doctor would not listen to me.

Before Aistlinn got her casts the OT gave us a list of exercises to do with Aistlinn's legs/ feet. When she saw Nev she told us we could use them on his as well. She agrees his left leg is the worse and that his achilles (?)(sorry if that's the wrong muscle- pretty sure that's what she said) tendon needs to be stretched more, because it doesn't reach to were it should and that's why its turned in.

Aistlinn's legs do the exact same thing as my sons. The shin bows outward like that, and her feet are upward and inward.

Because I was aware of this kind of issue I did not bring it up with the same family doctor that pretty much refused to acknowledge my sons problem. So I brought it up with my OB who treated me while I was pregnant, and she made the referral for my daughter. There was no way I wanted her to have the same problems as him. The OT is actually trying to get a referral for my son from my OB too even though she isn't his doctor. The OT is pretty confident that even if she has to go through my family doctor she will get the referral for my son. She stressed quite a few times he needed to be seen by the Orthopedic surgeon.

I do worry about Aistlinn, it is hard to see her in splints, but I am pretty confident because we caught it early she will be okay. But my son is a whole other ball park. I'm scared of the unknown, and what he will have to go through to be better.

If I haven't heard anything by next week about my sons referral I'm going to call them. I just need to know he will be seen. This affects his life so much, its very hard seeing him get hurt all the time, because his legs. Most recently at my SIL wedding he split his eyebrow and almost needed stitches- because they said he tripped over his foot...

I'm sorry if I didn't respond to everyone's posts. I'm so tired I can't really think and write well at the moment- I have got to get Aistlinn's days and night normal lol.

VanMorrison your godson is one strong boy to go through all of that, and I hope he continues to get better

Re: Club feet....(OT baby related)

VanMorrison — Fri, 15 Aug 2008 17:38:00 GMT

My Godson was born with a pretty severe case of club feet and hands. At five days old he had surgery on both feet and they were casted, he also got splints for his hands. His hands rapidly corrected themselves, allowing him at least a 40 degree angle which is what is needed for writing typing etc.

He has had 3 or 4 more sugeries on his feet with a series of casting, shoes with a bar and splints. Keep in mind that his case is much more severe than yours. He is now almost three years old, can hold pencils crayons etc. He is running and jumping and swimming and dancing in his newest set of splints. They have cars on them and cork on the bottom for grip.

Seeing your daughter's feet in the splints I noticed that her feet look MUCH better than Kieren's ever did as his toes are curled in and his foot is more baseball shaped. It looks like she is comfy in her splints and they do make a HUGE difference. She is beautiful and will be fine. Keeping up with her OT is really important and will take some work but it will be well worth it. Stay strong and give your kiddos iDog hugs and cuddles!

Re: Club feet....(OT baby related)

Agnes L. — Fri, 15 Aug 2008 16:40:05 GMT

My son wears braces (Sure Steps) due to low muscle tone (cerebral palsy) and sees a bunch of therapists through Early Intervention (a program every state must have for 0-3 year olds with developmental delays (at least 1/3 behind where they "should" be) or issues that place thaem at risk for delays. Great program (esp the part that it is free!).

Don't know how old your son is and what problems the club feet have caused him as far as walking I'd say push to get him services, whether splints, braces, or therapy now and when you have spare time worry about chewing out the people that told you to wait. I don't know if botox is used for club feet--it is sometimes used for high tone CP. There are some concerns with using botox for kids, so research that if that's what's suggersted.

Your daughter looks adorable sleeping like a little "tough girl". I am guessing the splints are not bothering her. And from what I hear, most kids don't mind them. Her "bravery" will probably help your son and help you talk to your son about his club foot treatment.

I am interested in hearing more about your son--how old, what problems the club feet are causing, what services he is getting, etc. No doubt we can trade stories of how the health system doesn't alays like proactive moms. Never forget, though, that you are a MOM--Maker of Miracles.

Agnes

Gracie (17 yo RR-mix), Catherine (? yo new RR rescue), John and Gabriella (2 yo humans)

Re: Club feet....(OT baby related)

rwbeagles — Fri, 15 Aug 2008 14:57:49 GMT

No input on the condition but your little girl is lovely! I wish you the best with getting things "straightened" out and I bet things will be just fine now that you have a doc that is actually interested in being proactive!

Re: Club feet....(OT baby related)

janet_rose — Fri, 15 Aug 2008 14:19:07 GMT

Sorry you had such a rough week!

Your daughter is beautiful! I, too, hope that the splints will be sufficient. If nothing else, they are much more attractive than the cast. <grin>

Here are some links for you:

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/index.html

http://en.wikipedia.org/wiki/Club_foot

http://members.aol.com/clubft/links.html - more links

Re: Club feet....(OT baby related)

kpwlee — Fri, 15 Aug 2008 13:39:54 GMT

I have no advice or experience but wish you the best for both your children

Those pics of your little one are so sweet yet sad (my issues, sorry). She is absolutely gorgeous and looks so peaceful sleeping away. What a beautiful little girl

Once again I hope that everything works out fine and that your son's can be treated without too much trauma