Update and another surgery

 Gabe turned 15 last week.  Here is an update on our special teenager.  

Gabe had a really positive 7th grade year.  He graduated to the high school building and was moved to a resource room with older kids.  The maturity and life skill focus in the classroom was really good for him.  He has healed really well from his spinal surgery last year.  His spine curvature is now 10 degrees which they are happy with.  He continues to do a great job wearing his cpap to keep his sleep apnea under control.  He has some conductive hearing loss in his right ear that we are watching closely.  He can hear all language, but very high-pitched noises are diminished.  It's not to the point of hearing aids being necessary yet, but the conversation of this being in our future has happened.  He's done really well with PT this year.  He likes walking on the treadmill.  We are on a waiting list to get back into OT, but have been working on those skills with him at home - chores such as putting silverware away, making his bed, folding some laundry; handwriting; sorting; hand strengthening and coordination, etc.  Speech has been a challenge.  Gabe talks to us, but his stuttering to get out the big story in his head he wants to tell is still really significant.  He's much quieter in public.  It's hard to pick apart if it is shyness, anxiety, or just an understanding that speech is a challenge and being quiet comes easier.  He had a speech eval at the beginning of the summer.  It didn't tell us anything we didn't already know, but it does make it easier to set concrete goals around.  We are waiting to get back into speech therapy during an appointment time block that won't be too disruptive to his school schedule.  Gabe has done some new things this year.  He participated in adaptive bowling with his school.  He tried bocce ball with the Special Olympics.  He went to teen camp at the Down syndrome association, and he went to bike camp.  Bike camp was hard for him.  He hates feeling wobblily.  He got on the bike every day but required assistance pushing along and tired out quickly.  He held on with a death grip.  He didn't make a ton of progress, but we were able to go home with the bike hooked up to a stabilizer that converted it to a stationary bike.  He's been practicing on it while he watches TV.  It's a bit more stable, but still gets him use to the bike and working on the muscle memory of peddling and core strength.  He's done really well with it.  We've been on vacation to Florida and Michigan this year.  Gabe does great with traveling and surprises us in trying new things.  In Florida, he tried tennis a bit.  In Michigan, he went up the sleeping bear dune climb.  He shows us that we just need to keep offering him new opportunities.  Sometimes his anxiety and shyness get the best of him, but every once in a while, he surprises us, and we see all that he wants to do.  Gabe loves baseball, dogs, babies, Toy Story (still), Elmo and all Muppets, Dave and Busters, playing with his doctor kit, air hockey, and shooting basketball - as long as he has you to rebound for him.  He is still not a fan of heavy demands, feeling rushed, fire alarms, and being over stimulated.  He can be very gentle and very stubborn at the same time.  He's a teenager, but he understands things deeply and is quick to forgive.  He's a great kid.  

Gabe has hypotonia (poor tone) which is a pretty universal feature in the Down syndrome profile.  There are different levels of significance of course.  Gabe has very significant hypotonia.  His ankles have pronated out and his ligaments in his ankles have been hyperflexible his whole life.  He's worn ankle orthotics since he could stand.  He started walking with his toes pointing outward early on.  I took him to Orthopedics clinic when he was around the age of 8 to get their opinion.  They said that his orthotics were working well and unless he starts lifting up the outer part of his foot, there is no concern.  About 2 years ago, we noticed this beginning to happen.  We tried a more rigid orthotic.  We started seeing Orthopedics again more regularly.  We began specific PT work to focus on his ankles.  For the past year and a half, we have done nightly stretches with Gabe to help with his calf tightness.  Basically, Gabe's calf muscles are very rigid, but his ankles are very loose.  If he didn't have the hypotonia, he'd have very flat feet and be a toe walker.  Because of the hypotonia in his ankles, he severely pronates them.  It's significant enough that he has some callousing on the arch of his foot.  He complains that his "feet hurt" and his "feet are getting tired".  We wanted to get through complete spinal surgery recovery and see how the corrected scoliosis affected things.  Last week we saw an ankle surgeon who explained the options.  The first option is stretching and PT which we've already exhausted with little benefit.  The other two options are surgical.  The first is cord lengthening.  That is when they make an incision in the calf and potentially achillis to lower the heel down and give more opportunity for the orthotic to work and move the foot into alignment.  The second option is when they do the cord lengthening, but also do some bone grafting around his ankle joint.  This would be a bit more invasive and require two surgeries with a much longer and intense recovery time which includes 6 weeks of non-weight baring per surgery.  It would possibly allow his ankles to look more "normal" and not require an orthotic.  After discussing the options in detail, we are going to move forward with the first option of tendon release.  This is a soft tissue surgery.  It is an outpatient surgery.  He would be in walkable casts for 6 weeks.  He would miss about 3-5 days of school, but that is it.  It would give him the ability to push off with his toes as he walks instead of plodding with his heels.  He will still need an orthotic most likely, but that's not a big deal to us as it is all he has ever known.  It seemed like the best initial option to help with pain and endurance.  If we need to do the bone grafting in the future, it can be a later option, but the surgeon felt confident that cord release surgery would give him great benefit, equivalent to the bone graft procedure in terms of endurance and pain.  This surgery will be much less intense than the spinal surgery last year, but it is still a thing - something he'll have to go through and heal from.  He's been through so much.  Hopefully this will give him opportunity though to be more physically active.  Surgery is scheduled for mid-Oct.  

In the meantime, we'll be enjoying these last 4 weeks of summer.  8th grade will bring a new teacher,  new classmates in his room, and more growth and advancement.  

As for Alyssa, she's 12.  She's high energy, a little dramatic, goofy, and always looking for fun.  She finished up musical theatre and is continuing to focus on track, cross country, and ice skating.  She is figuring out how to navigate the middle school stuff and showing great kindness and maturity through the growing pain years.  7th grade, watch out!

I love the grown-ups my kids are becoming.   💗          

      

3.22.24 World Down Syndrome Day

 321… World Down syndrome day. I hope you all wear your crazy socks tomorrow. I thought it would be good to give an update at all things, Gabe.

Gabe’s spinal surgery recovery has been amazing. He did really well finishing up PT. We went to his six month post surgery appointment and the surgeon said he has a 10° curve. Normal is considered 10° or less. He’s very happy with how his spine looks and the success of the surgery. Gabe‘s posture is so much better and he seems more comfortable.

Gabe’s pronated ankles are continuing to be a problem. He’s always worn orthotics, but his ankles are rolling inward to the point where his arches are callousing and it looks so uncomfortable. He told us in the past that it hurts him. We’ve been doing intensive PT with daily stretching for over a year now. It has helped some. His heel cords are still so tight though. The orthopedic doctor we see is referring us to an ankle surgeon specialist this summer. She said the concern is that while now his orthotics do put it into correct alignment, as he gets older, his feet could get more stuck in that pronated position. As he gains weight and height, this can become more and more uncomfortable. We’re basically at a window where we need to decide what to do about it.  We’ll make an informed decision based on the specialist’s recommendations. If he did need cord release surgery, it would be eight weeks nonweightbearing. That’s hard to think about. We’ll see when the time comes. 

Gabe‘s heart looked great back in December. His echo and EKG were even improved some from last year. So thankful for that cardiac surgery team years ago.

At Gabe‘s last ENT appointment, his hearing test showed some deficiencies in his right ear when it comes to high-pitched sounds. He can still hear all language, but really high frequencies are hard for him. Hearing aids were mentioned. It’s not necessarily needed right now, but if it gets worse, it will be. He currently cannot hear birds chirp, water drip, or wind through the trees in his right ear. He may be getting a bit confused on where sound is coming from. This could potentially play into some feelings of anxiety or overwhelming when in a crowd and there’s lots of noise all around him and he can’t tell where it’s coming from. That makes me sad. He gets tested again in May so we’ll see what comes of it.

Gabe is having a pretty successful school year. He still has moments of refusals. He has long delays for processing time. He is improving though. He’s learning so much at school and following direction. It’s exciting to see him maturing. He’s doing chores as well and really doing well with nighttime routine showing us lots of independence. 

Gabe is signed up to do some exciting teenage things. He’ll be participating in special Olympics bocce ball coming up. We also enrolled him in and I can bike camp and a teen camp with the down syndrome association for the summer. We are trying to hit social skills hard and get him to use his strong voice when he’s out and about.

He’s a pretty amazing kid, with a lot of fight, some spunk, and a great deal of emotional intelligence. I ask you today to make a point to connect with someone who has Down syndrome. You’ll be better because of it. 

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.