Posts Tagged ‘clubfoot



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. ┬áThere 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.

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. ­čśŽ 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.

 

 

08
Jun
12

Aren’t All Kids Special?

We’re having trouble labelling our son “special needs.” Aren’t all children special, and don’t they all have needs? That’s why they have us. The parents.

I think Drake’s orthopedic care team has been surprised by both my mild reaction and his. Every cast he has had and even the tendon lengthening “surgery” haven’t phased him. I didn’t break down on them or have a cry.

See, he’s already a survivor. I’m expecting to feel a jolt of reaction to seeing him in the brace for the first time on Tuesday. Like the cast isn’t a permanent fixture in our household, but that brace or some version of it will be around until he’s 4 years old.

The thing that actually makes me sad is the fact that having a cast put on every week doesn’t phase my 14 week old son. He just sucks on his soothie paci a little harder, bearing it. Like he’s born with dignity everything else done to him in his short life.

Nope. I probably won’t cry either seeing that brace go on my baby boy. It represents hope. Hope that his future won’t include long lasting effects of his very low birthweight and prematurity. Hope that he’ll survive and endure.

Hope that I will never again see him limp and lifeless in my husband’s arms as we try to clear his nose and throat from the mucus of a reflux spell.

My son is special. His needs are special to us. But you can take your label of disability and shove it where the sun doesn’t shine.

Tomorrow we go for his hip ultrasound. I just hope it’s clear so he’s not faced with another fight.




Drake’s 3rd Birthday

February 20th, 2015

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