Posts Tagged ‘clubfoot

14
Mar
16

Spring Specialists

On this day four years ago, the lid came off and little guy was able to hold his temperature. The A’s & B’s and weight gain were all that stood between him and home. We started focusing on his special foot and what he would need when he came home.

Foot stretches and PT have been part of D’s life since week 2. On Friday, we got the good news that his clubfoot correction still looks to be holding and his year off from braces didn’t seem to impact his structure. We are to keep doing the stretches and his doctor added a new one to strengthen the outer left side. We love his orthopedic surgeon, and it was awesome to hear some good news. It’s hard to believe he was only 4lbs, 10oz at his first visit with her.

At the four year old well visit, he’s taken a big hit on his weight and BMI curve which we were expecting to hear. He only gained 2.5 lbs over the past year. The good news is he did make a jump on his height curve up to the 20th percentile, so despite the trouble with weight gain he IS growing. His doc and I discussed the measures we had taken moving him to a private sitter instead of preschool for the winter to give him a break from all the sickness he had last year. His dad and I were hoping to prevent the hunger strikes. We went over a meal plan, and we need to follow up quickly if he stops eating. Last year, it felt like we were through the eating and weight gain hurdles so it’s disappointing, but at least we weren’t blindsided with it.

With very little prompting, I was able to get the referral for the other thing that I am determined not to think about until our April 5th appointment. His doc even recognized one of the authors of the research study that I brought to the appointment as someone he knew from our children’s hospital.

 

 

 

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20
Mar
15

Socks for Ponseti

I saw this search term so I wanted to throw this out there.

In the winter, we liked the thicker Falls Creek brand white crew socks, but Drake is pretty skinny and they may not work for other kids if the ankle/shin part of the brace is tighter. I found these at Meijer. With crew socks, I always tried to avoid really big ridges. These would leave marks on his legs due to the necessity of strapping the shoes on as tight as possible, and when we did try this kind once it made him fussier in the brace, also.

In summer/not cold, the triple roll socks you can find in the toddler/baby section at Old Navy or Gap. Every once in a while, they have a sale of 5 for $1 or $1.50. I would stock up when I had coupons, reward cash, or these sales would occur.

Any socks that aren’t too tight on the shin with big ridges and that are tall enough to reach the bottom of the knee or top of the brace should work. We always stuck with white for easier matching and they seemed to make his foot sweat less.

We would wipe the brace out with rubbing alcohol in the morning once a week, and never had an issue with athlete’s foot or anything.

I would advise to be careful how tight you pull socks down on the toe though. Usually when he would get fussy, it would be because the sock was bothering him touching his big toe.

17
Aug
14

Back to School, Work, Life

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

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.

11
Aug
13

Nite-Nite Shoes

We’ve reached an interesting place in Drake’s Ponseti treatment. He’s in his first pair of “toe-lift” shoes now that he’s toddling around. For the first time, we’ve started having trouble with rub marks and pressure sores. He’s also at the stage of fighting me when putting on his shoes, and you can’t really reason with a 1 year old. Waking up to shoes being kicked repeatedly into a crib slat while a chorus of “ow, ow, OW, OW, OWWWWWW!” is screamed is also awesome at 6 am on Sunday.

Because the goal is always to stop the red marks from becoming blisters, parents are told to watch for bright red spots that don’t fade away after 20 minutes at the start of the bracing period. 

When I called his doctor’s primary nurse, I was told to try these things and then schedule an appointment with the doctor if nothing worked.

1. Thicker socks.

2. Remove the “pressure saddle” (white plastic curved piece that fits over the middle strap across the ankle) so the straps would tighten futher and reduce any slipping.

3. Cover red marks with the blister cushion band aids or fabric style band aids.

4. Make sure all straps are tightened as tight as possible. 

We are very strict in his brace wear. There’s always a possibility of relapse, but I would hate for the reason to be my not following protocols. I didn’t realize how much I’d miss the 3 month checkups. After 1 year of treatment you go to annual visits, it was nice to “check in” and hear we were doing great last year. 

03
Jun
13

World Clubfoot Day

Today is the first World Clubfoot Day as declared by the Ponseti International Association raising awareness for this treatable but potentially disabling congenital condition.

June 3rd was the birthdate of Dr. Ignacio Ponseti, developer of the Ponseti Method, an effective nonsurgical method of treating talipes or Clubfoot.

I am thankful that this method of treatment existed for Drake, and that the orthopedic team at Cincy Children’s was trained in its use.

Not all children with talipes have access to trained medical staff and afo’s for correction. Raising awareness is so important.

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6/4/13 Addition:

Have to add a bit to this one. I felt awful for missing most of the first World Clubfoot Awareness day so I posted this from bed last night with the hubby asking me to put the iPhone away.

The picture above is one of my only ones from the NICU that show Drake’s clubfoot. We actually didn’t even receive that diagnosis until his Orthopedic visit one month after his discharge. We are so very lucky that his correction seems to have worked and is holding beautifully. Most infants are casted within a few days of birth. Of course, his first cast was 4/26 which was still 1 day shy of his due date.

While in the NICU, he received therapy as part of each diaper change. We were taught to do the hip and foot exercises. Since I was having so much trouble with milk, I was (eventually) so glad to have another way to feel like his mom and that I was proactively doing SOMETHING for his well being.

Thank you to Dr. Ponseti, who would have been 99 yesterday, and the Ponseti International Association for giving us a nonsurgical treatment and a day to raise awareness.

I was so excited to mail my first pair of “night-night” shoes to a family in need last week. Drake’s size 0’s went to a new home thanks to the Clubfoot Shoe Exchange founded and run by mom Janet whose son sees a doctor in the same Cincinnati Children’s group as Drake. You can find them on Facebook if you know of a family in need due to insurance woes. We have been so blessed to have all of Drake’s shoes covered.

I promise that I don’t jump on the bandwagon of every cause out there. Prematurity and Clubfoot awareness have become very dear to me and my family.

Also, I have actually had people ask if I was a smoker because I had both a preemie and a child with clubfoot. The answer is NO. We do not have a reason for either, and that is probably the most hurtful thing anyone has ever said to 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. “




Drake’s 3rd Birthday

February 20th, 2015

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