Posts Tagged ‘ponseti method

02
Apr
14

Night-Night Shoes and new Daytime support

Our orthopedic follow up on D’s Ponseti treatment was awesome. His nurse and doctor couldn’t believe that he was the same 4 pounder they met in April 2012. 6 rounds of casting, 3 months of 24/7 brace wear, and 2 years of “night night shoes” and we are halfway done. His flexibility and bone structure looked good, and I got a mommy gold star for being a good patient and practicing good brace protocols.

From the crying 1 year old who took games, songs and both parents to get his shoes on properly, we now have an amazing two year old who gets his brace and brings it to me when he wants to go to bed early. He insists on attempting to do the buckles himself, and gives himself “mustaches” with the center bar. Daddy’s amazing game that got us through the 12-20 month old period.

I am excited about finding out the next step in his daytime orthotics from his physical therapist at PT on Friday. I think we’re going to be going with sure steps, and hopefully it will give him the support and stability he needs to continue making gross motor progress.

I feel a little guilty that he will have a new set of orthotics to deal with. My husband and I spent a long time debating it, but if we can help him avoid the pain that ruining his ankle ligaments would cause as well as be able to run with his school friends it will all be worth it.

07
Mar
13

The Other Side of the Coin

A search term of “Mitchell brace” recently directed a visitor here. Sometimes my issues and his issues of prematurity overshadow Drake’s journey in his clubfoot treatment.

Our course in some ways has been very straightforward,  and so far this first year has gone as well as can be expected. Our start in his treatment was a bit different due to the circumstances of his early birth.

From my research into this condition,  a diagnosis is usually made sometime during ultrasounds that occur after 30 weeks. Because Drake was born at exactly 30 weeks, we did not receive the early diagnosis that allows parents the time to select a specialist and make a treatment plan.

On Day 2 of his NICU stay, I was waiting for my wheelchair ride to take me down to the NICU. I was starting to feel a bit clearer as the medicine used to unsuccessfully halt my early labor was leaving my system. Although still a bit shaky from the emergency c-section and unexpected birth of my son, as well as those fun hormones.

My husband and some of the grandparents had gone down to the NICU to see Drake and give me some privacy for my doctor’s rounds. Suddenly, I overheard “they don’t know what’s wrong with his foot yet, but they had a hard time straightening it for the footprints.”

Say what? I LOST IT.

My infant son who still had seriously high jaundice levels, who was still on CPAP, and who I hadn’t been able to TOUCH yet had something wrong with him. Not to mention other people knew about it, but I didn’t. My husband had to send everyone away to calm me down.

I have pictures of Drake that show his foot as it looked in the NICU prior to the stretching exercises that PT had us and his nurses doing with every diaper change (6-8 times daily) as part of his cares. For now, they still feel really intimate so I’m going to keep them private.

We didn’t receive a diagnosis of clubfoot until my discussion with PT just prior to his NICU discharge. We left with a referral for an Orthopedic surgeon, and instructions to continue his stretching exercises 6-8 times a day.

Drake is being treated by Cincinnati Children’s Orthopedic team under the Ponseti method of treatment. He received serial casting, heel tendon release, a final three week cast, and 23 hour/7 days week bracing. He’s now in the sleepy time only phase of treatment that will last until he’s 4 or 5.

He is in the John Mitchell Shoes with Ponseti Bar manufactured by MD Orthopedics. It’s the 3 buckle sandal type of shoe. As a wiggly 1 year old, he is much less fond of laying still for his shoes to be put on, which has led to a “Night Night shoe” song and a double team bedtime shoe routine.

There were a few things that were very hard for me during the casting phase.

1. Seeing my newborn in a cast. Even after the NICU, I sat in my car with him in his carseat and just cried after that first cast. I had to call my mama.

2. The looks from other people who realized my tiny infant was in a cast. Ask don’t stare people! That goes for any child with a medical condition. Ask POLITELY, and most parents will gladly educate you unless we are having a very bad sort of day.

3. Soaking that thing off and keeping it wet during the hour drive to the doctor’s office!

The following are the resources I use to gain knowledge about his treatment and support from other parents. I hope this helps other parents on their journey with this congenital birth defect.

Ponseti International – Named for Dr. Ponseti who developed this treatment, and trains medical professionals worldwide

Russell’s Feet – A Parent blog

No Surgery for Clubfoot Parent Yahoo Group  To discuss non-surgical methods of treating clubfoot (also known as Talipes), but specifically the Ponseti Method. We are here to get the word out and to support each other through the various stages of correction.

Clubfoot Shoe Exchange (a facebook group network of US parents who share gently used shoes if insurance refuses payment for these medically necessary AFO’s)

 

4th Cast Mother's Day 2012, 2.5 months old/12 days adjusted

4th Cast Mother’s Day 2012, 2.5 months old/12 days adjusted

19
Sep
12

Happy Dance

Drake and I are doing a happy dance today.

Today we got to go from this:

To THIS:

Good news yesterday at his brace check up. We can go to nights and nap times. This equals happy play time for baby and Mommy!

I love this visualization of him in 4 years completely brace free with perfect feet and ankles zooming around. This is the future!

Yay baby Drake!

(side note pictures are actually from a few weeks ago)

I forgot to give a shout out to Drake’s amazing nurses on Saturday. Everyone at Good Sam was wonderful, but I especially loved Nurse Stephanie, who worked a ton of night shifts and made scrapbook pages and gave him his first bath, and Nurse Conni, who worked a lot of his day and weekend shifts, gave me a TON of support and gave Drake his first full bottle! Thank you and God bless you from the bottom of our hearts!

06
Aug
12

Brace Check #2

Last week, Drake had his follow up on his clubfoot at the halfway point of his 23hour wear portion of his treatment. Everything checked out well, and it was such a relief.

Any Ponseti treatment trained specialist is going to tell you that clubfoot treatment is 5% medical/95% parents. You have to be committed to the bracing protocol 100% or your child will relapse and it will be necessary to go through the casting phase all over again. There is always a chance of relapse, but the probability drops drastically if you follow proper bracing protocol.

The best part of my day is watching Drake kick his happy feet in his tub during his bath or smile and coo because his comfortable during his tummy time play. It is NOT easy to put his shoes and bar back on as he fights me with every fiber of his being, wailing at the top of his lungs, with his pouty bottom lip poked out.  There have been nights I sobbed about it afterwards. Nights I rocked him to sleep because he’d wake himself up knocking into his crib and wake up screeching in fear.

A 6 month old doesn’t understand why his mother is doing something he hates. He doesn’t know why his feet have to be locked into position 23 hours a day. I explain it to him, and I strap him in because I know that when he is running pain free at 5, 10, 20 years old that will be all I need to erase the memories of making my baby miserable away.

It is HOPE for the FUTURE. That’s what makes it possible to do this everyday.




Drake’s 3rd Birthday

February 20th, 2015

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