Part-time Wear

This post is long overdue, but life has been so busy for our family lately! We went to Bethesda on December 17th for Charlotte's follow-up appointment with Dr. Jex. When he walked in, he left her socks on and moved her feet to try and figure out which one was the club foot. Her feet had such good dorsiflexion that he almost couldn't tell! He said that her correction looked great and approved her to go down to part-time wear, which consists of wearing the brace during nighttime and nap time. 

I'm so proud of how well she's doing thus far. I'm hoping that part-time wear will help her sleep better, but so far that's not the case. I'm tempted to reach out to Dr. Jex and ask him about a different type of bar (Dobbs bar) that allows the legs to move independently. I've heard from other club foot parents that their children have been able to get into a more comfortable sleeping position in that bar and I'm desperate for better sleep. I want to get her doctor's opinion on it though because it's also controversial as to whether or not children have an increased chance for relapse in the Dobbs bar. 

On a positive note, since going to pt wear, Charlotte has started sitting well on her own, moving from a sitting position to a crawling position and back to sitting, and even started crawling some in the past few days. So far, she's meeting her physical milestones at an earlier age than her non-club foot, big brother did. Again, I'm so proud of her.

Thanks, as always, for checking our blog and for continuing to pray for Charlotte!

3-Month Recap

I can hardly believe that it's been three months since Charlotte first transitioned to her boots and bar! It has been an exhausting three months, and I won't lie, it has NOT been easy.  However, Charlotte is doing well and I'm pleased with how well she's developing.

At just over four months, on October 17th, Charlotte rolled over from her back to her belly with her brace on! She had been getting so close and trying very hard in the weeks leading up to it, and she finally got it that night! Before long, she was rolling in both directions all over our living room floor. At five months old, she started pushing herself up onto her hands and knees and rocking back and forth.  She hasn't quite figured out crawling yet, but I know it's just a matter of time.  I'm okay with her limited mobility right now, and honestly, am in no rush for her to be ALL over the house.  She's now 6 months old (as of yesterday!) and she's sitting up on her own for the most part. She topples occasionally, but she can sit unassisted for several seconds at a time.

Charlotte practicing rolling over at just over 4 months old.

Charlotte getting on hands and knees preparing to crawl.

Our sweet, happy girl in her shoes.

Our journey has not been all smooth sailing over the past three months.  Charlotte has not slept well ever since being placed in her boots and bar, and regularly wakes four or more times every night.  It's more frustrating because of the fact that toward the end of her castings, she was sleeping through the night and now she hasn't done that in 3 months.  It's exhausting, to say the least.  I can't figure out if it's her shoes, her gassiness, or her just being a poor sleeper.  In reference to the gas, I've noticed that Charlotte gets really uncomfortable, especially at night, because she has trouble passing gas through the day.  I'm assuming this is because her brace does not allow her feet/legs to move separately, hindering her ability to move gas bubbles through her digestive tract.  After adjusting my own diet (since I'm still nursing her) and talking to her pediatrician, we decided that she's just a naturally gassy baby and are hoping that going to part-time wear will help her be more comfortable.

Charlotte has a follow-up appointment next Tuesday with Dr. Jex at Walter Reed National Military Medical Center to check out her progress.  We are hopeful that he will "clear" her to go to part-time wear at this appointment so that she can get more free time from her shoes.  I'll be sure to post an update after that appointment. Until then, prayers are always appreciated!

Charlotte Jane, 6 months old.

Update: 2 weeks

Charlotte has been in her boots and bar for two weeks now, so I thought I'd update everyone on how she's doing. The first several days (and nights!) were dreadful. She was so upset and uncomfortable and her right heel kept slipping out of the shoe. I was having to re-thread her straps a few times a day, and I was worried about the "extra" time she was spending out of them when I had to do that. I called Dr. Jex's nurse and, after talking with him, she scheduled us to come in for another appointment that Thursday (one week after the initial placement in the brace).

Dr. Jex recommended leaving her sock(s) off in order to get the shoes put on tighter. I didn't like this idea because after just the first day in the brace (with no socks) Charlotte developed a small blister on her toe. I was worried that she would get many blisters and be even more uncomfortable. We went downstairs to the orthotic & prosthetics clinic and the orthotist was great! He gave us a size smaller shoe (000) and said to put her sock back on. He also narrowed the length of the bar which helped it fit in her car seat better. It still took a few days after getting the new shoes for her to fully adjust to the brace, but she was no longer slipping out of the shoes which made me happy!

Disclaimer: I'm not advising anyone to go against the instructions of their doctor. I am not a medical professional and cannot give medical advice. 

We got into a routine of allowing free time just before bed, with a bath every other night. We've been keeping her out for about 30 minutes each day, and she absolutely loves it! She is always so happy during free time and even happier in the bathtub! She even rolled from her belly to her back for the first time during her time out of the shoes earlier this week. 

Charlotte enjoying her brace-free time!

While I never expected this transition to take nearly two weeks, I'm so proud of how well she's doing. I won't lie and say it was easy. It was far from easy. Many times, I felt like such a bad person forcing my crying child into the "contraption" that is the brace. Many times, I cried right along with her. I lost a lot of sleep and probably wasn't the nicest person to be around. However, I know it's in Charlotte's best interest and she'll thank me someday when she's older. I'm looking forward (but NOT rushing) to seeing her walk, run, play sports. Watching her run around with her brother or her friends, teaching her how to ride a bike, and seeing her just be a normal kid!

I don't think I'll ever be able to fully express my gratitude for the treatment she has received. I'm thankful for the loving God that I serve who is answering our prayers through the hands of doctors. I'm thankful for the MANY people who have prayed for and encouraged us thus far. We couldn't do this without all of you! We love you all!

Graduating to the Boots & Bar

Charlotte had her last cast removed this morning at her post-op appointment with Dr. Jex.  The doctor sent us downstairs to the orthotics & prosthetics clinic to pick up the brace and then we went back up to his clinic so he could show us how to put it on.

It was so nice to see both of Charlotte's feet/legs for a little while, and I could tell that she enjoyed being out of the cast.  Unfortunately, her right leg is very sensitive to the touch, having not been exposed to any sort of feeling for so many weeks.  She cried at even the slightest touch and I felt like she was a fragile newborn all over again.

Charlotte after her last cast was removed before being placed in the Mitchell shoes & Ponseti bar. 

Before we left, Dr. Jex showed me how to put her shoes on.  Her heel has to be completely down and back in the shoe in order for it to fit properly.  The shoe has three leather straps and Dr. Jex explained that the middle strap is the most significant one for keeping her foot in the "down and back" position.  He called it the workhorse strap and stressed the importance of getting it nice and tight.  He doesn't want her to wear socks for the first few days until we can get the hang of getting the shoes on correctly; he wants us to be able to check her toes for circulation. Charlotte was over tired and not a happy camper.  I felt so bad for her.  She cried and screamed the whole time with big crocodile tears rolling down her cheeks.  Then, Dr. Jex wanted me to put the shoes on while he observed to make sure I was doing it correctly.  I felt like even more of a monster, trying to hold her foot still while tightening the straps, and she continued to cry the most heartwrenching cry I've ever heard.

I know that this treatment is for the best and that it's necessary for her to live an active and healthy lifestyle.  I also know that she will only have to wear this brace for a very short period of time, relatively.  All that said, it doesn't make hearing your baby cry any easier.  I felt like crying with her.  Fortunately, I know she is strong and she will adapt to this new phase just as she has before.  She's an incredibly brave little girl and I'm so proud of how well she has done thus far.  I can't wait to share this blog with her someday when she's older so she can see just how far she's come.

Relaxing at home in her boots and bar. 

Bathing Beauty

Pretty girl getting ready for her bath. 

Before having a baby with club foot, I never could have imagined all the things that parents of "normal" babies take for granted. One of those things is giving your baby a bath. When my first born (Rowen, now almost 3 years old) was fussy as a baby and all his needs were met, sometimes I'd give him a warm bath to help soothe him. The lavender scented baby wash and warm water had a calming effect that would usually settle him down. 

With Charlotte, it's not quite so easy. I can't just let her soak in the bath because her cast can't get wet. Fortunately, she's been a fairly content baby and I have only desired to be able to give her a soothing bath a couple of times. Still, she gets sweaty and spits up sometimes so occasional baths are necessary. I wanted to write this post to explain briefly how I go about bathing her and keeping her cast dry. 

My infant bath tub has a mesh hammock-like insert that's used for newborn babies. This little device has been a lifesaver when it comes to giving Charlotte a bath. I usually just fill a small bowl with warm water and sponge it over her body while she lays (fully supported) in the hammock. Her cast sometimes dangles over the side of the hammock and other times he holds it up. Either way, the water washes off of her and into the bottom of the tub, but her cast is elevated enough that it doesn't get wet. She actually loves bath time and it's a great way to help her relax before bed. And who doesn't love the smell of a clean baby?!

The hammock helps support her body while still keeping her cast away from the water. 

If you're the parent of a child with club foot and have other tips and tricks for making everyday tasks easier please comment below or email me at ydid4.7@gmail.com. Or if you have questions about certain tasks, ask away! Charlotte and I are still pretty new to this journey, but I'm happy to share the things I'm learning along the way. I hope this blog is helpful and informative to my readers. 

Surgery!

Charlotte underwent surgery for her club foot this morning. The procedure, known as an Achilles tenotomy, was very quick and everything went well. We arrived at the hospital just past 5:00 this morning and she was scheduled for the first surgery of the day at 7:30am! We spoke to several people in the holding area regarding the procedure itself as well as anesthesia. The doctors and nurses we talked to had to discuss all the risks associated with this type of surgery. 

Mommy & Charlotte before surgery.

Had to wrap Little Miss to keep her calm. She was definitely getting hungry by this point since she hadn't nursed for over 4 hours. 

I walked Charlotte back to the operating room and laid her on the table. They put a gas mask on her and she was asleep within just a minute or two. I gave her a kiss and was escorted out to the waiting room. It was such a surreal feeling leaving my tiny baby behind in the (very capable) hands of complete strangers. Thankfully, the surgery was very quick and we were back together within an hour. 

Finally resting. 

Charlotte was NOT a happy camper upon waking from the anesthesia. She wouldn't even calm down enough to nurse and I felt so helpless! I think she wore herself out because she eventually dozed off for a little bit. They monitored her oxygen level for about 30 minutes and then moved us to another area to wait for discharge papers. In the second area, they removed the IV from her hand and she was much more comfortable after that. 

The IV is out and she is much more comfortable!

We were discharged around 9:30 and headed home. She is now resting peacefully and I hope we can all get some rest this afternoon (it was an early day for Mom and Dad, too). 

Resting at home. 

I am thankful to have this over with, and I pray that Charlotte isn't too uncomfortable over the next few days. She will be in this last cast for 3 weeks to allow her tendon to heal and complete the correction of her club foot. Thanks to everyone for thinking of us and praying for Charlotte! We appreciate and love you all!

Her 6th and final cast!

P.S. Happy birthday, Daddy! Love, Charlotte

A Letter to my Baby Girl

My precious Charlotte,

I love you. I tell you that hundreds of times a day, but I want you to know that I mean it with every cell in my body. You are a perfect gift from Heaven for whom God trusted me and your Daddy to care. We are so thankful He chose us to be your parents. 

This journey with your feet is going by so quickly. I'm so grateful for all that God is doing through the doctors and I know that He will continue to see us through this process. I'm praying, especially, for Him to be with us in the morning as you go in for surgery. I'll admit, I'm nervous. You're so little at just over 10 pounds. You're so fragile, so innocent, so perfect. It's hard for me to think about placing your life into the hands of strangers and just "hoping for the best". If God is teaching me anything through this it's that I must trust Him with things that I cannot control. Someday you'll understand just how hard it is for a woman to give up control. 

My sweet girl, we're nearing the end of the first leg of this journey. You've been so amazingly strong and brave. I can't tell you enough just how proud I am of you! You have made this process easier than I ever dreamed it would be with your strength. I know we still have a long road ahead, but I trust that God is with us and I know that He has given you the power to overcome this. I love you, sweetheart. 

Love,

Mommy