Back to normal-ish

 Gabe is doing great. At his follow up appointment. The doctor was very impressed with his progress. The before and after pictures were pretty amazing. He still has some restrictions till the end of November such as no climbing, jumping, gym class, etc. He’s not going to break though. He starts physical therapy this week to work on back muscle strengthening. He started back full-time school today and did very well. It’ll be exciting to see him establish a school routine and progress throughout the rest of the semester.

I’ve learned a couple things throughout this whole ordeal. The strength of Gabe is pretty amazing. The body heals in awesome ways. We are surrounded by some wonderful and amazing family and friends who step up and support us. It really takes a village not only to raise kids, but to get through life when it gets hard. Self-care is so important. I tell myself this, and I’ve told others this, but rarely actively take the time to do it. Over the past six weeks, I’ve been to the doctor, the chiropractor, got a massage, and most importantly, I got over seven hours sleep every night for five consecutive weeks without any sleep aids. I’ve reduced alcohol and caffeine intake. I’ve gone to the gym. I feel healthy.

Now the key is to keep up some of those good habits as the chaos of life and work start back up. Gabe started back to full school days today and had success, so I start back to work tomorrow. I’m extremely thankful to have the opportunity from my employer to be home with Gabe during this process. The family medical leave act is a wonderful thing.  

Now back to our new routine. So proud of my family.

2 weeks post op

 Gabe is doing great 2 weeks post op. He’s off all medicine and hasn’t even needed any Tylenol since Sunday. His scar has scabbed over and is definitely healing and looking better.  He is learning how to maneuver his body differently. For example, he can’t bend over and pick something up off the ground. He can’t arch his back in any way. Previously Gabe would get dressed by laying his clothes out on the ground, putting his feet in his pants, then hoisting himself up to stand and pull them up. Now we have to teach him to sit on the edge of his bed and cross his leg over his knee to get his feet in his pants and then stand to pull them up.  He has trouble pulling his pants down all the way. He has trouble soaping up the lower half of his body in the shower. All things he  needs to relearn because his mobility is a bit restricted. We’re not sure if it’s stiffness or just limited mobility b/c his back moves in a straight plane now. We will be meeting with OT and PT after he sees the doctor in about two weeks.  Until then, we will keep building endurance with him. He’s made the walk back-and-forth to the mailbox multiple times now. We walked a bit further down the street earlier this week and he made it about halfway. We’ll keep trying to go a bit further everyday. Thank you all so much for all the cards and goodies! It’s been a wonderful highlight of Gabe’s day.  We all enjoy reading them.

1 week post op

 I caught him mid laugh. 

Gabe is doing good. Finally have a little bit of the bathroom stuff under control. His stomach hurts at times, but otherwise pain has been under control too. His posture is a bit better when walking. He’s doing the OT activities the best he can to help with shoulder and neck movement. He’s tired a lot, napping about three times a day. Healing takes energy. We start his medication taper today so we’ll see how he does as we back off on things.  I took his bandage off today. His scar is massive but looks good. I had to reinforce one spot and he still has to hold off on showering till I talk to the nurse about it tomorrow, but I’m pleased with how it’s healing. Gabe’s surgery was one week ago. I’m in awe with how the body heals and adapts. It really is amazing on how far he’s come in one week. I talk very freely about pee, poop, pain, wounds, etc. It’s the nurse in me. I’m constantly assessing him to get an idea on how he’s doing since he may not have the communication to exactly articulate it. What I’ve not done is posted some of the harder pictures. We are willing to share those though if anyone’s interested. I just don’t want to do it on a social platform, even with privacy settings. If we’re in person and you want to see a pic from ICU or a pic of the incision, feel free to ask. Seeing those from other parents who’s kid had gone through the same surgery was quite helpful in preparing.

What we need:  cards! Send all the cards. Silly ones that play music, have dogs or babies on them, fart jokes, or animals with googly eyes. Send us all the cards!  Don’t know Gabe that well, but love following his story? No problem… send him a card that just says “good job” or “we’re cheering for you”. My plan is for Gabe to walk outside and check the mail every day as part of motivation to move. I think he’ll totally get into it  

Enjoy the long weekend! Thank you friends! 

Home

 Home. Gabe finally went to the bathroom a little bit yesterday afternoon so we got discharged late yesterday evening.  He was in a fair amount of pain when we got to the house because it was the most movement he’s done by far between getting out of the hospital and getting into our home. We got him tucked in just fine and he fell asleep immediately.  Today was focused on bowels and bladder. I’ve been on the phone with the nurse a lot today.  We have a plan going into the holiday weekend, which hopefully does not involve a re-admission. Hopefully his body cooperates and the bathroom stuff improves.

  From a mobility standpoint, he’s doing great! He’s going down and up the stairs with support. He’s been walking around just holding our hands lately. We’ve been doing some OT exercises with him to keep his neck and shoulder range of motion in a good spot. The surgery fixed the skeletal structure, but the muscles are still used to being slanted so he is still a bit lopsided. It will correct overtime as he gets used to new posture.  We are tracking lots of medication and Gabe is taking it like a champ. They were right when they compared it to having an infant. He really is a champ though. Once we get the bladder and bowel stuff under control, it’ll be a huge step forward.

Recovery

 Gabe has been doing well overall. He’s walking up and down the hallway with support. He’s eating off and on. We need to work on him drinking. They removed the drain yesterday. He had to be cathed twice because of bladder distention and holding his urine. Luckily, he finally started peeing and pooping some. Goals today are to meet with PT and OT and start drinking more. There have been some really hard moments, but all in all, he’s done excellent.

Post op

 Surgery yesterday went as well as it could have. It took a little over five hours and his spine is close to completely straight. It doesn’t get any easier handing him over. He was a bit up and down last night, but overall stable and slept well. He had some facial swelling as we expected. Pain control, movement, and eating are our biggest focus.  We should transfer out of ICU later today. He’s asking to go home. Hopefully soon.

Surgery tomorrow

 We would appreciate all the prayers and positive thoughts tomorrow as Gabe undergoes spinal fusion surgery to treat his syndromic scoliosis. He’ll have two rods placed along his spine and be fused from T3 to L2.  Prayers specifically for:

1.  The surgical and medical team who care for him. May they be well rested and use their expertise to the fullest. 

2.  For Alyssa, as she goes to school tomorrow with a bit more on her mind and in her heart.

3.  For Justin and I, that we may be the best parents possible for Gabe, staying patient, positive, and strong for him and each other. 

4.  For Gabe, that his spine stays strong, airway stays strong, and spirits stay strong. That he may have understanding of what’s going on and work hard during his recovery. 

Gabe’s scoliosis occurred very quickly over the past year. It’s actually gotten 7° worse in the past four months alone. This needs to be corrected before it causes any harm to his lungs. He should grow 2-3 inches tomorrow after surgery. Surgery will start promptly at 7:30 and should last about six hours. We’ve already been flooded with such amazing support. It’s appreciated more than you know. We’ve been through medical challenges with Gabe before. It’s a bit harder this time since he’s more aware, and this is a major surgery and recovery. He is a fighter though. Never give up on Gabe. >>>💛💙

Sweet summertime

 We've been living it up this summer.  Gabe (and the rest of our family) have been keeping busy.  Gabe has some amazing respite sitters who have taken him to parks, libraries, play centers, climbing areas, museums, and all around town.  He has had play dates at Dave & Buster's and Reds Games.  This week he was invited by a friend to Vacation Bible School.  We've been on vacation to Dollywood and Daytona.  We're soaking it up.  

Gabe turned 14 last week.  He still loves all things baseball and Toy Story.  He continues to be an aficionado of potato chips and dinosaur species.  He loves cheeseburgers and fart jokes and storytime and singalongs.  He loves playing doctor and fixing toys - he's a real life Doc McStuffins.  Dogs and babies are #1 and he's amazingly gentle when they're involved.  

He is currently taking a break from speech.  He recently got a talk assist device.  We're trying to load schedules for morning and nighttime routine onto the device to fade out our verbal prompts and assistance.  It can also help with understanding him if he's not annunciating well.  We finished up a really long PT block.  We have daily activities to work on to help his ankles.  He's improved a great deal with his heel cord tightness.  It's now more about hip strengthening.  As for his scoliosis, surgery is needed to fix that, but we are building endurance for sure.  Gabe walks around the block daily.  He's gotten up to a mile on an incline on the treadmill and is gaining stamina.  It's really nice to see this progress.  We continue to push OT activities to help with independence.  He is sifting through kinetic sand and puddy to find tiny beads.  He is using tongs to sort beads.  Lots of hand manipulation to eventually help with snaps and buckles.  He's about to outgrow stretchy waste bands so he needs to get better at fasteners.  

He's learning concepts of money and buying things at the store (with us prompting him and coaching).  He still loves to read.  The Storybook series books have been good for him.  He loves the Toy Story one and is also getting into the superheroes one.  The main idea of stories and characters and setting can be a bit tricky, but he usually gets the concept.  He still loves Cocomelon, but mainly just the doctor song.  He plays along with all of his doctor tools for medical play.  I think it's his way of processing things.  He folds some laundry, puts dishes away, and picks up a few sticks in the yard here and there.  Compliance is still an issue, but if we make a list and tell him what to do and give him time to do it, he generally complies. This past weekend we told Gabe he needed to eat breakfast, get ready for his day and put his laundry away.  It took him an hour, but he did it completely independently.  Baby steps forward add up to giant leaps.  

As for Gabe's upcoming surgery, we've been working hard at preparing.  The walking and stamina are a big part.  We've been working with Gabe during behavior therapy at labeling feelings.  He looks at pictures to identify if the person in the picture is brave, hurt, sick, scared.  Increasing this vocabulary with him will help with language post surgery.  As I said, Gabe loves playing doctor.  He's definitely working through things with medical play.  He had his labs drawn and everything looked good.  About 80% of kids Gabe's age are Vit. D deficient - not Gabe!  His love of milk is helping him out.  His EKG to prep for surgery was unchanged since Dec. so his heart is good to go.  We met with a dietitian who gave us some really good tips to work on protein, Vit. D, and calcium during recovery.  Red meat, beans, dairy, fruits and veggies for fiber - I have meals planned out.  We watched a video and read the manual on spinal surgery to know what to expect.  He will be in ICU after surgery.  His pulmonary doctor put a plan together to keep him ventilated till stable in ICU.  At that point he will be extubated to his CPAP machine.  They put special sensors along his spine during surgery to make sure his spinal cord remains safe as they place the rods and secure his spine.  Because he will be face down during the surgery, they said to expect facial swelling.  It will be hard seeing him in ICU, but being prepared is helpful.  He will be in the hospital for 5ish days depending on his movement, eating, and bowels.  He will come home on different medications to help with his comfort.  He will need to sit in a sturdy chair and walk around every hour to prevent stiffness.  He will also need to eat small frequent meals/snacks to prevent nausea and help with energy.  Parents who have been through this before compare it to having a newborn in terms of schedule.  After 2-3 weeks though, things should get easier.  After 4-6 weeks he will hopefully be able to go to school for half days and work up his endurance from there.  After a few months he'll hopefully be pain free with perfect posture.  

Back to school is soon approaching for my 7th grader.  He will be in school for 2 weeks before surgery time.  He will also be starting extended school year in 2 weeks.  Summer always goes so fast.  In the meantime, we'll keep soaking it in and enjoy being out and about since the fall may have us at home more.

I think 14 years old will be fabulous, even through a little bit of hard.   

When things get hard...again

 Gabe is 13.  Puberty is in full effect, and he is growing like a weed.  About a year ago, I noticed his back looking more muscular on his right side compared to his left.  I pointed it out to his PT and she agreed a bit.  We thought it was related to him being right-handed and showing some left sided weakness to work through.  We went to his primary care last summer and I brought it up again.  She looked at his spine and said it appeared straight.  We saw orthopedics in the fall.  This was more related to ankle pronation and heel cord tightness, but she checked out his gait and his hips.  As the new year passed, his back was looking more like a hump-back and becoming really noticeable.  It didn't seem to bother him, but I was getting worried about spinal rotation from heart surgery or some post surgical skeletal issue as he grew, or something much bigger.  I called orthopedics and they ordered a spine xray.  It showed moderate scoliosis.  As soon as we saw the spinal curvature our hearts sank as we knew it was major.  It's a 47 degree curvature.  They call it syndromic scoliosis as it is related to Down syndrome.  They said while there may have been some subtle early signs, it came on very quickly related to a growth spurt he's had the past few months.  The xray also showed Gabe's growth plates are still wide open.  The positive to this is he's going to grow alot more in the next couple years.  The downside to this is that unless we correct the spinal curve, he'll grow sideways.  When scoliosis gets severe, it can affect your lungs.  With pressure on the lungs, your pulmonary system can take a major hit.  Considering Gabe's airway and cardiac history, he cannot get to that point.  The only option is surgery.  Gabe will be having spinal fusion surgery with 2 rod placements along his spine at the end of August.  The day of surgery he will automatically grow 2 inches.  He had a sedated MRI of his spine yesterday.  Luckily there is no spinal cord issues from the curve such as tethered cord or disc herniation.  Neurosurgery will not have to be involved which is a relief.  This summer he will have frequent appointments with OT and PT to work on stamina pre-op and positioning and maneuvering post op.  We will meet with nutrition therapy to focus on vit. D and calcium and "bone heatlhy" eating while we try to bulk him up for surgery.  He will meet with child life to try to help him understand what's going on and be able to work through the pain.  We will meet with the surgical team to go over every aspect of the procedure.  We may even meet with allergy to make sure there is no metal allergy prior to rod placement.  It's going to be busy.  After surgery, he'll be in the ICU for a day or two.  He'll then be on a surgical recovery unit for a 5-7 days before coming home.  They've warned us that the first 2 weeks are going to be pretty rough.  He will be out of school for 4-6 weeks.  Full recovery may take months.  It's the only option.  It's going to be alot.  All we can do is enjoy our summer and we'll get through it one day at a time.  I wish we were running him to the pool and baseball games instead of all the appointments, but it is what it is.  We've been through hard stuff before, and one thing I know for sure...Gabe's tough (and so is his family).  He's the most resilient and stubborn kid I know.  Never give up on Gabe...even when things get tough.