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.
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. >>>💛💙
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.
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.
And
just like that, he’s a teenager. Gabe turning 13 brings about an odd
combination of feelings. He’s moved into the awkward phase of life, but still,
an exciting one of discovery. I’m excited for this next chapter for him. I’m
really proud of all that he’s accomplished. Not only the medical hurdles, but
social pieces and finding his community. At the same time, I can’t help but
think that we don’t have much time. Independence in certain tasks seems light
years away, but at the same time, he’s come so far. I shouldn’t put a time
point on anything though…we are all continuously learning and improving after
all. It’s an odd feeling. I no longer grieve for that typical kid I thought I
was expecting many years ago. I don’t grieve in any way because Gabe is pretty
perfect to me and a wonderful fit for our family. What I do grieve over though
is when others don’t see his ability, or when his stubbornness or shyness
interferes in him showing it off. Because he’s so awesome and he has so much to
share with this world, I want him and others to organically experience the
amazing gifts he has. Here’s an update on my teenager:
We are watching Gabe’s hearing. He often gets fluid in his ears and that can make high-pitched sounds a little difficult to hear. We’re trying to have some Flonase help before we talk about tubes again. We go back in couple months to reevaluate.
His airway continues to grow. He still has significant obstructive
sleep apnea. He never drops his oxygen levels, but he does have very disrupted
sleep without CPAP. He tolerates CPAP wonderfully and we are always trying to
tweak settings and find the proper mask fit. Someone needs to paten a CPAP
mask for flat nasal bridges.
Gabe
is continuing to grow along his growth curve. He’s done really well since he
had his feeding tube removed last year. He is eating well during our normal
routines. We are trying to work on him serving food on his plate and eventually
cutting his own food. Adult men with Down syndrome are usually around 5’ to
5’3”. Gabe is following that trajectory.
Gabe
continues to have a little bit of nearsightedness and some shakiness to his
eyes due to poor muscle tone throughout his body which is very classic to DS.
He doesn’t like wearing his glasses more than a half hour at a time. We are
working on it.
Gabe
needs his thyroid checked again next month. His labs are kind of borderline.
He’s antibody negative, but his TSH lab likes to teeter a bit.
Gabe
continues to have some skin issues we are watching. He has a few psoriasis
spots that pop up here and there on his scalp. He also has the dermatitis which
can show up on his skin with any kind of irritation. He also has some alopecia
on his scalp. We use different creams to help with it. Autoimmune issues like
this are also pretty significant to DS.
Gabe’s
speech has been an area focus. He’s been stuttering so much the past couple
years. I always thought it was because he had so much he wanted to get out and
had to motor plan it all to get his words out to express what he wanted to say.
It’s become really significant and understanding his articulation is hard. We
try to do different strategies, but he doesn’t really like to follow speech
directions because he knows it’s hard for him. He’s also very quiet around
peers so he doesn’t talk a ton because he knows it’s hard to be understood and
communicate this way. He always excelled at verbal ability, but it’s become
quite a struggle now. He'll start back up with speech therapy next week and hopefully he’ll be more receptive. It’s
definitely an area he can get frustrated on, but he has to be willing to
participate and put the work in to see the effect. We’ll keep at it.
We
do a few physical therapy appointments a year with Gabe. He still needs foot
orthotics. He pronates his ankles really badly. Again, poor tone and
loosey-goosey ligaments. He often tires from being on his feet because he says
they hurt. I’m hoping if we try a firmer plastic orthotic, it will offer more
support. He still needs frequent breaks, but he does stay on his feet a bit
more I think. It’s really just working on endurance at this point. I would love
it if Gabe got involved in a team or Special Olympics. He just doesn’t like
being put on the spot having all eyes on him though. He’s come along way with
his anxiety, but he still is such a shy kid. All we can do is keep exposing him
to extracurriculars.
Gabe
has made some significant gains in occupational therapy. We’ve been working
hard on chores. He will now put dishes away, make his bed, and put his laundry
down the shoot. We’re trying to get him to get the hang of a spray bottle so he
can wipe down counters. He’s helping me cook a little bit. We are trying to work on him getting ready for bed
independently. He knows the steps, but doesn’t always want to do everything on
his own. He still needs some restroom help. He will shampoo his hair, but only
wants to use his fingertips. There’s something about getting his palms sudsy
that doesn’t feel right to him. He will brush his teeth a little bit, but we
have to finish him up to make it effective. We are doing lots of social stories
and visits to the orthodontist to hopefully work up to braces.
Gabe
had a successful year at school this year. I think adjustments in his schedule,
along with having a better grasp on stressors and anxiety has really helped. He
is social with others and really likes being there. He’s made great gains this
year with reading some basic chapter books, doing some money math, hand
writing, and addition and subtraction. He walks around the school like he owns
the place and I can definitely see him growing up there.
Puberty
has definitely begun. I have to say “hands up” to keep his hands out of his
pants at least five times a day. It’s all wonderfully typical, but social
appropriateness is not naturally understood to him. We’re really drilling in
him what is a private space and what is not. Also, not everyone wants a hug. He
needs to know boundaries of what is appropriate or not. When you give him
hypothetical situations, he always answers correctly. However, he is definitely
a hugger and has never met a stranger. It is a complicated concept though. We
are continually working on demands and following instructions. He definitely
likes to tell us “no” and push back. He doesn’t really flop anymore, but he
definitely knows he’s bigger and stronger and can’t be forced to do things. You
often have to wait him out. Proactively making lists of things that need to be
done along with positive reinforcers and rewards help a lot. If he misbehaves,
we can take things away or deduct screen time. It is getting a bit better, but
still requires rewards for compliance that I was hoping would be able to be
dropped by this point. His new thing is that when I ask him to do something
he’ll say, “why don’t you do that!…oops…did I talk back? (Smiles)”. A lot of it
is Down syndrome stubbornness, with a little bit of teenager and Lawrence genes
mixed in. It’s enough to drive you nuts some days. When we ask him to do
something and surprise us or question if he can, he generally gives us his best
effort. For example, if we say “I wonder if Gabe can make his bed really well
today….I’m not sure. I wonder if he does really good with that.” Gabe will then
run upstairs and make his bed and then yell “surprise”. I think he likes having
the control and showing off a bit. It’s pretty funny to see.
Parenting
Gabe still requires a bit extra. It’s difficult, wonderful, typical, and
exciting all at the same time. Our first born, our teenager….what a gift you
are. Keep showing the world all that you are. I’ll make sure they listen and
see you. Love you cash-man.
October is Down syndrome awareness month. How about some facts?
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
There are three types of Down syndrome: trisomy 21 accounts for 95% of the cases, translocation accounts for about 4%, and mosaicism accounts for about 1%. Gabe has trisomy 21.
Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome.
Down syndrome occurs in people of all races and economic levels.
The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age. I was 27 when I had Gabe. The only sign of his DS was his heart defect. I am glad I knew about his diagnoses prior to giving birth because it allowed me to work through the emotions so I was ready to fully love and care for him when he was born. Many spontaneous miscarriages are thought to be from chromosomal conditions. My body proved I could carry to term, so I had a 1 in 100 chance of having another child with a chromosomal condition. I had some prenatal testing when I was pregnant with Alyssa and results came back that she had a 1 in 14,000 chance of having a chromosomal condition. I wasn't really fearful of DS, more so of the medical complications, so the prenatal testing, along with a fetal Echo, was nice reassurance of a healthy baby. Prenatal testing is of course a personal choice, but was the right one for me for both pregnancies.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defect, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions. Gabe had the heart defect, has some reactive airway issues with illness, and we are watching his borderline thyroid levels closely. There is a lot of medical information to discover in that 21st chromosome.
A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Gabe has all of these features. Low muscle tone causes his sleep apnea, need for foot orthotics, slightly awkward gait, eye focus/shakiness, speech articulation, chewing and swallowing speed, fine motor delay, and endurance in general.
Life expectancy for people with Down syndrome has increased from 25 in 1983 to over 60 years old today.
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Gabe has always caught on very well to reading. Math requires more manipulatives and takes alot more time. Following multi step directions can be hard for him. However, he also memorizes the roads we take to get to places and questions my driving ability if I take a different exit to get somewhere he is familiar with. He memorizes a schedule, peoples full names, pets names, favorite colors, etc. Routine and schedules help him tremendously. He also has a greater sense of emotion than many other children his age. He notices if someone is upset or sad and gets very concerned.
Quality educational programs, a stimulating home environment, good health care and positive support enable people with Down syndrome to lead fulfilling and productive lives. Thank you all for being part of Gabe's team.
*Facts obtained from the National Down Syndrome Society
