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.

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.