jocelyns-journey

[jocelyns-journey]

Month 4 update:

Today is the 4 month mark since Jocelyn’s SDR surgery. Last week we flew to St. Louis to follow up with Dr. Park and his team. They were very pleased at her progress so far and had insightful suggestions for her continued rehab. Dr. Park would like us to follow up in one year.

We visited Arizona for a very special family wedding and Jocelyn wore high heels. She was aching to wear heels so we found the most supportive pair we could and brought back up sandals just in case. She rocked those heels and didn’t trip even once! It was so nice to be surrounded by family and to see Jocelyn being “just one of the cousins.”

She practiced her swimming skills with her beloved AZ physical therapist Lindsey. Her kicking is so much more productive without spasticity and her body awareness is really keen. She figured out how to do forward and backward flips under water and swim while taking a breath.

This weekend Jocelyn is participating in a TRYathalon that her PT clinic is holding. She will be swimming, scootering and jogging. She is really looking forward to showing off her skills! On Monday she will begin a therapy intensive program of 4 hrs/day 5 days/ week for two weeks. She is going to be doing a lot of strengthening and gait training to help refine her movement and balance.

Jocelyn has already conquered many of her goals and has gained more independence than she had prior to surgery. None of it has come easy, but her hard work is paying off big time and we are so very proud of our girl and all she has accomplished so far!

[jocelyns-journey]

Week 8 update:

Jocelyn has been working hard at her rehab for nearly two months now. On week 6 we changed to physical therapy 2 hrs 3 days a week. She’s been using eStim during therapy to get the proper muscles firing during activities like stair stepping, sit to stands, kicking a ball etc. In just two days of practice she’s learned how to walk down the stairs with alternating feet. She’s able to go up some stairs without holding on to the rail as well. She can now get into and out of the car herself. She’s falling much less than before surgery and she’s able to walk better on uneven surfaces like the forest and the creek. She’s gaining so much independence and looking so strong! She wears knee braces to keep her knees from hyper extending but as she gets stronger we can use those less. Still waiting on new braces to be made to help with the stabilization even more. It’s a lot of hard work, but her therapists make it fun and she enjoys playing with them at the PT gym. Here are some photos from the past couple of weeks.

[jocelyns-journey]

Weeks 3 & 4

Jocelyn started walking independently this week!!!

She surprised us, and even herself, all of the sudden on Monday. She had tried a few steps in the sunroom and found her balance so we quickly put on some shoes and went out to the backyard where she walked all by herself across the entire lawn into Mossy Shadows. We were all elated! Her motor pathways are reorganizing at lightning speed and her daily workouts and PT are paying off big time. Since then, she’s been able to walk around the house safely without us spotting her.

Meliah and Brielle have been her biggest supporters and encouragers through all this. Their compassion and love for each other is beautiful to witness.

Last weekend we said goodbye to Bubcia and welcomed Mamaw to Georgia. They have been a God send. Helping us keep things running and caring for the girls.

These last two weeks have been a real encouragement and validation of our decision to have SDR. Jocelyn being able to move her body without spasticity holding her back has made all the pain and struggle of recovery worth it.

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Sit to stands

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Week 2

Jocelyn put a lot of hard work into her rehab this week. Every day she is getting a little stronger. Some highlights from this week are, first full week of PT every day, standing without holding on to anything, climbing onto the couch and the bed independently, and first outing to Petsmart.

My mom has taken over nights and mornings with Jocelyn and has started doing her at home exercises. They have worked out a good routine and Bubcia is pushing her to get stronger and stronger by making her walk with her walker wherever she wants to go. Lots of eye rolling in the Palich house this week 🙄 but also lots of candy and screen time too so it’s a fair trade. Meliah and Jocelyn have been beading, coloring and playing legos together.

She has 4 different physical therapists working with her and they are all excellent and have great personalities. They’ve nicknamed her Sassy Queen. We are grateful for their knowledge and expertise in working with kids who’ve had this surgery before.

Amazing news for this week… Jocelyn was finally approved for Medicaid after 7 months of working and waiting for it. Just in time for therapy to start so that was a huge blessing to find out. God is faithful to provide!

[jocelyns-journey]

Week One:

Today marks one week since Jocelyn’s SDR. She is gaining more strength and endurance with each passing day. Her homecoming was a sweet reunion that we will all cherish forever. Thanks to everyone who chipped in to make her feel special! I’ll be posting a weekly update for the next couple of months to document her progress with rehab.

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Goodbye St. Louis!

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Day 5

Discharge Day!

Jocelyn gained so much more strength in the last 24 hours. She can sit up on the toilet with out holding onto us and is starting to push up into sitting on the bed with much less help. She hasn’t had any pain meds through the night and she’s feeling good!

She’s very excited to go home and see her sisters Bubcia and Tia!

Carlee has been protecting Brielle and Meliah in a love bubble at home. Going about their normal day to day routines, grocery shopping, taking care of pets, homeschooling AND working. She has been my rock. Thank you Carlee for being there for us in a way that only you could. We love and appreciate you!

Bubcia flies into Georgia today! Yay! My bff Julie is picking her up and decorating Jocelyn’s room to welcome her home. For all the ways you’ve been there for me this week while having your own stuff going on, thank you. Julie’s family has meals lined up for us when we get home as well. We are surrounded with love and support from our family, friends and church family.

Thank you to everyone who sent Jocelyn a gift or message of encouragement while she was in the hospital. She was too tired to take calls but I read her every text and she beamed with love and affection for you all.

The plan for today is to meet with our PT to discuss things at 9:30 then get discharged after that. Regroup at the hotel and then load up the car and head towards Nashville. Jocelyn had a late nap yesterday and was awake most of the night so hopefully she will snooze in the car. 🤞🏻

Pray for safe travels and for her sweet little body to tolerate sitting for 4.5 hours.

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Jocelyn met all her therapy goals! Including taking 4+ steps with support!

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Feeling good!

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Day 4

Today Jocelyn got to wear her own clothes and feed herself. She feels more peppy today. She did great work at morning PT and was able to roll to her stomach, transition to hands and knees and then into tall kneeling with support. She got to go to the gift shop and pick out a Barbie doll. She also put her feet on the ground today for a few seconds and that felt good! She is now only needing Tylenol and Ibuprofen by mouth for pain. She has another PT session at 2 today and then one in the morning before we are discharged.

We can start praying over the drive home, that she will be able to tolerate sitting up for so long. Our car seats recline so that should help some. We are stopping in Nashville for the night.

Seeing Jocelyn move without spasticity is mind blowing. What a miracle!

[jocelyns-journey]

Update

Thank you for praying for our PT session. She did really great and was in good spirits despite being tired. Getting up for the potty continues to be HARD so please pray for that specifically.

[jocelyns-journey]

Day 3

Today was get out of bed day.

Early this morning, Jocelyn had her epidural and catheter removed by her sweet young night nurse Kendall. She gently explained everything to Jocelyn and listened to her worries and reassured her that she’s got this. She calls her “sister” which is really endearing. No pain or anxiety at all which is huge because that’s what Jocelyn was fearing the most before we came.

When PT came in at 9:30 things started unfolding rather quickly. She demonstrated how to sit Jocelyn up and transfer her into her wheelchair. After three days of laying pretty still this was a shock to Jocelyn’s system and she suddenly became hysterical. The PT reassured us that this was a normal reaction and that it’s mostly fear, not pain that she’s experiencing. She encouraged us to give it a try next and just push through it.

Its hard as a parent when you want to trust that a professional knows best but deep down in your soul you know what your child needs more than anyone. This was one of those moments of reckoning for me. It’s my responsibility as her mother to meet her needs in a way that respects her humanity, her bodily autonomy. We put everything on hold and gave her time to regulate and decided it was best for the PT to leave. Seeing Jocelyn in that state was gut wrenching. One of the hardest parenting moments I’ve ever had.

Nothing can prepare you for moments like these. The ones when you find out what you’re made of. I knew she could do it, but on her own terms. She needed control over her own body. Tyler and I regrouped and took things real slow. Stopped when she said stop. But we kept trying until she made it into the chair. A little help from Moana and she was in her happy place. I was able to run a comb through her hair and massage her scalp as she enjoyed the movie. She sat for 30 minutes. Goal accomplished! And everyone kept their dignity.

We have another PT session 2 today so please pray that she won’t be in as much pain for it.

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Day 2

It feels like we turned a corner last night. Jocelyn got some good sleep and her heavy sedatives worked their way out of her system. Tyler stayed with her while I was able to get some restful sleep in the hotel bed. When I got here this morning Jocelyn awoke and smiled at me and asked for those two sprinkle donuts she requested yesterday 😆 her eyes have the sparkle back in them and she is quietly giggling at her cartoons which is such a nice sound to hear again.

Goals for today: stay on top of pain and stay in bed

I’m hoping today we can chat and play games and take some calls to pass the time faster. Tomorrow they remove her epidural and catheter and then PT will come and help her out of bed. One more day to rest and heal before then.

Thank you for continuing to love on us.

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Last night went pretty well. Jocelyn was nauseous from the meds and had some breakthrough pain but we were able to adjust meds to keep her comfortable. She slept for about 7 hours. She doesn’t like being in bed hooked up to all the tubes so today will be about keeping her distracted and just passing the time. She said she is up for calls and texts today if family wants to contact her they are welcome to. She has a sore throat from the intubation so she won’t be able to talk for too long but any encouragement or jokes to lift her spirits would be appreciated. We are waiting for breakfast to see if she can hold something down. Continue to pray for strength and endurance for her and for pain to be manageable.

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Surgery went well! We are anxiously waiting for them to call us back to recovery to see her.

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Update from Tyler:

Jocelyn was in good spirits and fully enjoying the fact that she now has Netflix on her phone with no screen time restrictions! Up to this point, she has been great at asking questions when they come to her mind and Megan has been maintaining amazing-mom status answering all of them promptly and in a way that makes it easy for Jocelyn to understand. As members of the surgical team came in and explained the situation, the surgery and recovery process were all just a reminder at that point and we were at peace with was to come.

About 30 minutes before being taken back to the operating room, Jocelyn was given Versed to help her relax and be 100% comfortable going into surgery. It didn’t take more than 10 minutes for her to start feeling drowsy and have her natural, playful nature amplified except now most of her jokes were incomprehensible. 😆 She was taken back to the OR almost asleep and wrapped comfortably in her Bubica-made blanket as well as thoughts and prayers from all of you. Thank you all so much for your love and support. Receiving texts, picture messages, video messages, cards, and emails encourages us immeasurably. We will continue to provide updates and appreciate all your love and support.