Posts Tagged ‘ponseti

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. 

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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.

20130603-222234.jpg

 

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. “

02
Apr
13

The Posts I Didn’t Write

It’s been a busy few weeks. I thought I would want to write a big, emotional post for the anniversary of Drake’s NICU graduation, 3/24, but it was a Sunday and we just took a walk and baked and decorated cookies. It felt like such a NORMAL, family hanging out day. The kind of day that makes last February feel so far away.

I did make a picture collage from go home day to now at 13 months. What a wonder to see how much he’s grown.

gradiversary collage

Two memories really stick with me from that day. We decided we didn’t want to be separated so the three of us left by way of the parking garage elevator. The same route his father and I had taken every day when leaving Drake behind. I avoided the lobby like the plague. Being wheeled out by my mom on my discharge day next to the lady with the newborn in her arms was still too fresh. The second memory was of the 30 minute drive home. He looked so miserable and tiny in that car seat. He kept his eyes shut the whole way, and I rode in the back with my finger a few inches below his nose once in a while to check his breathing.

Unlike his birthday, that was a day of joy. We all definitely felt the difference in the celebration of the anniversary.

Then last week was our 1 year clubfoot check up. We all got to wear lead aprons and do stand up x-rays at Children’s. They looked AMAZING! You could tell no difference in the structure of his left foot from his right. Yay Drake, Yay Cincy Children’s Orthopedics, Yay PONSETI, and Yay Mom & Dad for strict bracing protocol! We got the verdict that right now we only need to do 12 hours a night, and it should end at 4 years old. We are 25% done with treatment!

Easter was a bittersweet day. We so wanted it to be the day of his baptism, and that wasn’t going to happen due to RSV isolation. Then our church was going to have an outdoor 8am service that we were going to brave, but it was cold and rainy so they couldn’t have it. Mom and Dad were very disappointed. Drake loved his THREE Easter baskets, and didn’t know the difference. What a difference from last year when he was smaller than his bunny!

Will I always have those moments that make my stomach roll over? A family friend asked if we would consider more children. I said a quiet, “I prefer not to answer right now.” Unfortunately, someone overheard and it went to a situation I’d hoped to avoid. What no one knows is I’m actually on blood pressure meds that don’t even allow us to consider it right now. I have to take care of me, first. Not to mention it’s not a discussion for a family/friend Easter dinner. Sigh.

We are so blessed, and despite some bumps on the road we are so very, very lucky. Right now though, I’m not sure I’d want to consider another child who could have very, very different outcomes. Even if I could which is another whole emotional/health thing to work through.

Winter though, can go and take the yucky germs. We’re ready to play tug-of-war with his baseball allegiance (My Cubs vs. His Reds) and go to the Zoo!

Follow ups are coming in May and June for feeding, wellness, and NICU developmental clinic.

 

 

16
Jul
12

Challenges

Two issues this week for baby Drake.

1. How to get him to take more formula.

I’ve been trying for two weeks to get him up to the 32 ounces recommended by his pediatrician at our last visit. He prefers to do everything, including eating, in Drake time, so it looks like I have a call to make this week. When he gets tired of taking a bottle, he just sucks it in and spits it out. Like I won’t notice.

2. Socks that work well with his clubfoot brace, and getting him fitted for a bigger one.

Grr baby socks. I need about 2 sometimes 3 pairs a day. These little boogers are great at hiding out and getting lost in the laundry. His grandma gave us a pair that worked PERFECTLY. The top doesn’t squeeze his leg and they fit well. She couldn’t remember where she had picked up this pair. I finally found some at Target yesterday, but they were all sold out of his size. 😦 His toes have reached the end of the sandals so it’s time for new ones! This will be his first move up since starting bracing on June 12th. I’m getting nervous about his appointment to check progress in August. I hope and pray we have been doing things right.

In the meantime, Mommy is trying to let go of some of the guilt as well as prep the family for RSV season looming ahead. I know we have several months, but Drake has two surgeries slated for November. He still won’t qualify for Synagis, and I’m scared to death of him being placed under general anesthesia. I’m hoping that if I prepare everyone for our becoming hermits again this winter there won’t be any backlash. We’ll see…

13
Jun
12

The Journey

Now our real journey begins. Drake was fitted for his Mitchell shoes with Ponseti bar brace today. This has been the fussiest I have ever seen my quiet preemie.

I knew that the coming years of getting this corrected would probably be a bit of a struggle. I’m so thankful that this is a correctable issue, but I’m so sad that it’s one Drake will be fighting for the next 5 years.

So far today, Mommy has

1. Inserted the bar backwards and cried as my baby cried

2. Put the shoes on the wrong feet

3. Felt my son snuggle up to me for comfort despite all I’ve put him through

And number 3. That’s the reason all of this is possible.

The Yahoo group nosurgery4clubfoot has been a real comfort to me today.

Please God give my husband and I the strength to do this for our son. Help us to remain vigilante and compliant to the best care plan for him.

We won’t talk about the offhand comment about his brace making him look like Forrest Gump. It made my heart hurt for him, and it made me so, so glad that we will hopefully be through this before he has to be too much in the world without Mommy & Daddy.

 

10
Jun
12

Congenital Birth Defects

I’m still dealing with a lot of anger. It makes me feel weak. I feel weak as a mom and weak in my faith. I feel ashamed because I’ve started looking into this huge community of moms of premature infants who have had to endure so much more than my son and I have.

I take it out on my husband. I have flashbacks to the weekend my son was born and review what I did and how I felt to see if there is any point I could have made a different choice for a different outcome.

Rationally, I know there’s probably nothing I could have done to prevent my son’s prematurity. Just as there’s nothing I could do to prevent the shortened tendons in his left foot causing it to twist in. Of all the things that could be wrong, this is fixable and probably without surgery.

But I’m still angry, and I mourn. I hate that everyone who sees my “newborn sized” baby in a cast think he was injured in some way. I hate the pity when I explain to them why he’s actually wearing it. I worry about his future struggles with 23 hour bracing for the next several months and 12+ hours of bracing until he’s 4.

I know I should be thankful, but I’m still just too mad.

 

 




Drake’s 3rd Birthday

February 20th, 2015

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