Posts Tagged ‘john mitchell shoes

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.

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06
Mar
14

Follow-Ups and a Bit About Me

Today we have our annual follow-up with Orthopedics at Cincinnati Children’s. This will complete our round of follow-ups that run December to March. The only other appointments D will have until next December will be his therapy visits and any sick visits. Talk about an awesome milestone!

I am nervous about today. He will get x-rays of his feet to make sure that all the bones are still growing in the right direction and that we are using his “nite-nite shoes” properly to maintain the correction. I’m also going to have his Ortho surgeon check out the recommendations we have from his physical therapist so we can see what move she thinks we should make about his low tone and hypermobile joints. He’s getting around much better these days, but PT is worried about injury or too much stretching to his ankle ligaments without support now.

When prematurity first struck, I went into salvage mode. For a while, I was just slammed with hormones, with emotions,  medical issues,  insurance issues, and dealing with the rest of the world issues. Then the first year was medical thing after medical thing worse than the NICU for us. The second year was about growth. I found my groove. Things with D got exponentially better with the right medical and development team.

Recently, with D going to school two days a week, I have increased my work hours and started remembering that I love my job and I was really good at it. I am so thankful that they allowed me the flexibility both to bring him to work on occasion or work from home as needed. I didn’t have to make some hard choices my work was as great a support system as my family.

Now, I’m ready to get back to some things I had planned for during my medical leave that I put on hold. I’m investigating some Master degree programs that will allow me to continue my current work in higher education while possibly preparing me for involvement with curriculum development or even classroom training.

I feel more ME than I have in a long time, and I think that is as good for my family and its future as it is for me.

07
May
13

Ask, Don’t Stare

While checking out my newsfeed over my morning coffee, I came across this gem from Bar Bumpers.**

Says any parent with medical equipment or a unique kid.

Says any parent with medical equipment or a unique kid.

**I asked permission from Bar Bumpers prior to posting.

We have always used the sleep sacks to keep Drake warm in his “nite-nite” shoes, but I absolutely love these. Bar Bumpers will custom embroider a bar bumper and shoe covers.

I should take a picture of our changing table, cradle, and crib to show the damage that is wrought on wooden furniture by a kicky baby with an large metal bar.

D in his "boots & bar" at 6 months actual.

D in his “boots & bar” at 6 months actual.

I love the craftiness and the practicality of these sets, but the message of this one is what really stopped me in my tracks this morning.

Last summer, Drake was on his last 2 rounds of casting for his clubfoot correction just as we came out of RSV isolation post- NICU discharge. I was still in the fragile, guilty new preemie mom stage. We decided to go to a popular brunch restaurant early one morning. Of course, I felt like people were staring me down as I carried my newborn-sized infant with a hip to toe cast on his left leg. The looks you get make you feel like social services is going to jump out and grab your child any minute. After casting, the Ponseti correction method continues with 23/7 bracing for three months.

4th Cast Mother's Day 2012

4th Cast Mother’s Day 2012

Ask, don’t stare, ladies and gentleman. Most parents are going to be willing to educate you if asked politely and having a good day.

I love these whimsical boot and bar covers. I really need to reach out and see if she’s willing to ship to the US.

You can view all the Bar Bumper offerings on their website  http://www.barbumpers.co.uk/.

Love, love, love the site motto, also. “Bringing fun and fashion into the world of Boots and Bars. “

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




Drake’s 3rd Birthday

February 20th, 2015

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