Best Mother's Day Ever: We have a G-tube Graduate!

It’s been a part of him for as long as I can remember.  Up until he was 12 days old, I was able to hold him belly to belly without worrying if I was going to hurt him.  There was no medical device interfering with our bonding time.  There weren't many tubes or chords either.  

This image is one of the final days holding him before he had his g-tube surgery. At the time he had an NG down his nose to supply nutrients to him.  

That all changed on day 12.  Looking and thinking back I was so scared and traumatized of Cohen getting a feeding tube, because to me it was like bringing a part of the hospital home with us.  It wasn't natural and it definitely didn't look typical.  I was so resistant to this little 16 french 1.0 button that was put into his belly.  But after looking at my son with this as part of his body for 5 years, it has blended into the background.  It is him in all aspects, and it has helped keep him alive which I'll be eternally grateful for.  

This is Cohen at 1.5 years old with some teething toys at his high chair. From the beginning we would treat him like any typical kid, providing him with typical feeding experiences.  

It has consumed me for almost 4 years, constantly worrying.  As a parent, this has been the hardest thing I’ve ever had to do in my entire life. Often it would consume me daily with worries and hopes and fears and sadness.  We would often take one step forward followed by 4 steps backward.  When he was little it was worrying about whether or not he was going to pull it out, when the next time he was going to vomit all over my house, and if he would ever be able to eat orally by mouth.  Then as he grew, the worries changed.  He began taking purees around almost 2 years old.

Cohen is enjoying some delicious purees.  Yummmmm!

The worries turned into: Was he going to choke? Was he getting enough calories?   Around 2.5 years old we transitioned him to a blended diet through his g-tube. Up until this point he was receiving baby formula to provide calories for him.  A blended diet is a diet that is real, whole food blended and syringed to him through his feeding tube.  My worries turned into acting as if I were his nutritionist.  Was he getting enough fruits? Carbs? Nutrients?  

And by the age of 3.5 he finally was showing many more signs to eat and be interested in food.  His list of foods began to lengthen and with feeding therapy weekly, I was trying my best to make sure he received balanced meals.  

A picture of him receiving therapy in our home.  He would be visited weekly by his in home therapists and we would also work on weekly feeding therapy up at Stanford as well.  

In mid-2018 I was able to transition Cohen off of his feeding tube, receiving no calories through it.  It was evident that his chewing abilities had improved, his love for food had increased, and he was generally a decent oral eater.  This picture below shows him eating his first hamburger (and yes it's in the car).  I love this picture and wanted to share it because it truly represents our life. Cohen is an oral eater, but mostly on his terms even today.  He is a grazer and often eats on the go. Whether that be in the car, or in line for a doctor's appointment.  I never leave the house without a cooler full of a variety of foods so that there is never an opportunity for him to be hungry.  

In order to usually have the doctor's approval to remove a feeding tube, children or adults need to prove themselves for generally a 6 month period of time, sometimes shorter, sometimes longer. What does that mean?  Being able to hold his own through sickness, surgeries, and other ups and downs of daily life, Cohen would need to prove he did not need to use the tube during these occasions.  And he did just that!  He had multiple colds in late 2018 and then in 2019 had a tonsillectomy.  I was convinced he would need to use the tube, even if to administer medications.  But because he had been weaned off it since May 2018, he was confused and honestly scared of the feeding tube supplies when I brought them out.  An hour after surgery in the hospital he told the nurses and I that he would drink all of his medications.  And by two hours post-op he was scarfing down scrambled eggs and pancakes.  To no surprise to us, Cohen was once again showing that he was a badass! 

He had proved himself and at our GI appointment last week I received the incredible news that it was time.  Time to take it out and let him be an oral eater.  Yes we would most likely still rest uneasy some days that he didn't take in enough calories or became sick that we wouldn't have our safety net "tube" to fall back on.  But he had proved himself and was ready to graduate.  

When we took it out two nights ago, the entire family was chanting, “Bye, bye tube!”  My daughter Isla seemed to be the happiest.  I know she didn’t understand to the caliber of what this moment represented for us and for him, but she couldn’t have been more proud of her brother.  He walked over to throw it away in the garbage and suddenly hesitated.  He began to cry.  He didn’t want to throw the tube away. “I want my tube back,” he said.  This reaction wasn’t something that crossed my mind anticipating this moment for so long.  I thought it would be a celebration like none other.  This wasn’t happening to me, but to him.  Of course he would be attached to something that he had always known to be part of his little body.  That plastic button often got in the way, and he would sometimes utter, “Watch out for my tube” if someone would brush up against his belly.  It made it challenging for him to do easy things like go belly down on a slide, or be able to give strong hugs. 

So as we were holding him and trying to wipe away his tears, we shared and brainstormed as a family all of the things he could do now with his tube removed. Here is just a small list of what we came up with:

-Go down on my belly on the slide.

-Wrestle with my sister

-Swing on my belly

-Roll down the stairs or grassy hill

It's crazy to think about how long this journey has been for him, but it just feels like yesterday that the nurses at Ann and Robert H. Lurie Children's Hospital in Chicago were training Ryan and I on how to care for our newborn baby boy.  This process and journey didn't come easy and took an entire tribe of people to make it a successful one.  

Thank you to everyone who has helped make this possible.  All of his in-home therapists, his school therapists, his collection of nurses, his feeding therapists now, both of his grandmas for getting trained in feeding him when my husband and I had to leave.  Thank you to Kelli, his first nanny who learned for a hot minute how to feed him.  She gave it her all.  We are so proud of our little man.  For so many families that at one point in time have to learn and care for a child with a feeding struggle, this post is for you.  I hope it brings hope to you to know that you aren't alone and that you are rockstar parents!  Your child may graduate sooner than later, or maybe they will be feeding tube dependent for life.  But I can honestly say that I'm so thankful Cohen had a feeding tube because it kept him healthy and alive for these past years.  

https://youtu.be/8mfm_Icv2Vw

A Whole New World

"A whole new world

A new fantastic point of view

No one to tell us no

Or where to go

Or say we're only dreaming

A whole new world

A dazzling place I never knew

But when I'm way up here

It's crystal clear

That now I'm in a whole new world with you"

Yes, these are the lyrics in the Disney Aladdin movie. But although these lyrics may be about two lovers, for me they represent how I see Cohen these days. It's a new world in so many ways and a grown up boy accomplishing so much!

It has been over a year since my last blog post.  Time continues to fly by in my life, and it's hard to take time to reflect on the past and all of the memories and milestones that have occurred.  But it's so incredible to see his progress when I do find the time.

A year ago Cohen had just started at a private preschool. His home therapists wanted to get him started in a school setting and see how he did in preparation for him starting his local preschool placement.  He was due for his first IEP meeting. An IEP is an Individualized Education Plan.  Most children walk into school, teachers assess them and meet them where they are academically and socially.  Kids can need an IEP for a variety of reasons.  For Cohen it is something that he qualified for very easily with all of his needs.  After much debate and three intense meetings with the school staff at his local preschool, we were finally able to get him in the perfect classroom setting.  He would be placed in a preschool primarily centered around teaching children with special needs.  The meetings, the fights, the refusal to sign his IEP, on our part, was primarily around his placement.  We had toured the state preschool classroom prior to our meetings and thought it was the perfect classroom for Cohen.  There were therapists on site at the school and a daily nurse.  He would be surrounded by typically developing kids his age as well as children that had some major needs like himself.  A few other children in the classroom had feeding tubes which was a definite plus for us.  We really wanted Cohen to have friends that were similar to him.  Ones that may struggle with the same thing...eating! But the school continued to push back claiming he had missed the birthday cut off for that placement, but they could place him in a special day class.  Yes I know that the day may come when Cohen cannot be mainstreamed in a class with typical peers. But for now, he's right where he needs to be and we demanded he be put in the least restrictive environment with the most intensive program possible.  So far we have seen nothing but amazing things.  He has grown so much as you will read and is starting to come home talking about his favorite new friends.
Here he is on his first day of school with big sis!

Now looking back on the fights we had with the principal, the tears, the endless pushing...we won!  Cohen started in his new state preschool classroom in January and it has been nothing but watching him soar.  He has had his fair share of illnesses though, most that kept him out of the hospital.  Often when he gets a cold, he still manages to hold onto it for a minimum of 2+ weeks.  After 5 ear ruptures/infections within a 4 month span, we decided to put in ear tubes again to help.  At the same surgery he also had a small surgery for an Orchiopexy to bring down one of his testicles.  Both surgeries went well and he recovered easily.  He was able to snag a pair of purple hospital gown pants that he now refers to as his "ha ha" pants.  Yes, sounds confusing, but he loves old school Batman and Joker cartoons and the Joker character wears that color.  He can't yet say "Joker" so "ha ha" refers to his creepy laugh.


This year has been nothing but Cohen racing and soaring to reach his goals.  His speech is developing and it's getting easier for others to understand what he says.  Last year we were happy to get 1-2 words from him.  Now it is not uncommon for you to hear him utter 4 word phrases.  They won't be clearly articulated but with a little prompting and repetition, we are having conversations with our boy!
Here is a sampling of things he will say often around the house:

- Mommy ch'rios bowl peese (Mommy cheerios in a bowl please)

- I don like it

- Miss Dylan ( to describe different things he misses, mostly missing Disneyland...those Disney withdrawls are intense)

-Goo Nigh E'body (Good night everybody before bedtime)

-Iya Bean (referring to sister)

Physically, he is running all over the house, with definite help from his AFO (Ankle Foot Orthosis) braces.  This past Spring, he was able to join a coed softball league with his big sister and crushed his fellow teammates with his batting average.  Cohen is able to hit a ball from an overhanded pitch from Ryan.  This is truly amazing to see from such a little man that already struggles with his balance, core strength, and coordination.  He may have been half the size of all of his teammates, but he was not afraid to get up there and tackle a sport played with 6 year olds.

 

His eating has also shown great progress.  Last year at this time he was still getting 4 feeds/day and eating sometimes 150 calories.  Now there are more days than not where he is eating up to 400 calories/day.  We have decreased his feeds to 3 times/day.  This has been the biggest accomplishment and relief to Ryan and I.  Up until this point, the past 4 years our bedtime has been dictated by his feeding schedule.  Because he would need a feed every 4 hours, if the schedule was pushed back for any reason, it would force us to have to stay up late to get his last night feed in while he was asleep.  The sense of relief of being able to jump into bed at 8:00pm if we are tired is a foreign feeling to us, but we aren't complaining.  Cohen still attends feeding therapy weekly to help him take in more calories, try new textures, and increase his variety of foods.  His new favorite foods tend to be not as healthy as before, but very typical for his age.  Chicken nuggets, hot dogs, pizza, and ice cream are some of his favorites.   All things I'll never say NO to because......HE'S EATING THEM!!!

It is still a daily battle, but something that I don't think is impossible anymore.  School has also helped him to see typical peers eating and that food is not the enemy.  This Thanksgiving he participated in the entire meal, watching his cousin and aunts and uncles eat....and then joining in the fun!  He has also improved by weaning off some of his medications.  He is now off both of his reflux meds.   This will cut-down on both time giving them to him as well as financial costs!


But with all these amazing accomplishments,  22q sometimes reminds us that it's here to stay.  It's not something that lies dormant forever, allowing you to put your guard down.  Just when you do, it comes back and bites you in the a#$.  On July 25 we were shocked to witness Cohen's first seizure.  It was terrible.  The longest however many minutes I had to endure using all my strength to hold Cohen up as I pulled him out of the bathtub.  He had a stomach bug a few days prior and was not acting himself.  Throughout the course of the day he became progressively disoriented.  I couldn't scream hard enough to grab Ryan's attention to come into the bathroom.  Funny thing, is in the past when I've screamed like that it was to help abandon ship when Cohen had pooped in the tub.  Isla saw everything but recovered sooner than we did.  After the ambulance ride and lengthy check-up it was determined that it was caused by possible dehydration from his illness.  Relief knowing this wouldn't be our new normal was all we wanted to hear.

For a joint birthday gift, we took Cohen and his big sis to Disneyland.  Anticipating the right time to take him without having to deal with his medicine and feeding schedule have always been an issue.  And there was always the chance he would get really sick.  It was a miracle that everyone was well and we couldn't have asked for a more magical first Disney experience.  HIs eyes lit up meeting Spiderman, Captain America, and Thor at California Adventure and seeing him squeeze Winnie the Pooh was almost too much to bear.  But probably the most magical moment in my eyes was watching my kids at the night parade.  He was sitting there experiencing the beauty and magic of Disney free of cords, free of therapists and doctors poking and prodding him.  He was in true kid form, holding his Mickey bubble blower and without a care in the world. Happy tears were shed....lots of them.   The kids are still missing Disney and talk about it very often.

As an almost 4 year old, Cohen is becoming a typical 4 year old.  He's stubborn, headstrong, and very independent.  He still requests holding various toys/action figures with him in the house, to the car, and at bedtime....but his anxiety is usually around new experiences/environments and not at home.





And today we celebrate his 4th birthday.  I am holding back tears writing those words...happy tears, because every year hat goes by is another year of strength and accomplishment.  No one can tell him no or way to go or say he's only dreaming.  He may have 22q, but so far it's not stopping him!

Preschool and Lots of Updates!

Apologies right from the get-go of how little I have posted.  The lack of posts have been from the amount of successes we have been busy celebrating with Cohen.   It's been a year since we have moved to California and the amount of leaps and bounds this little man has made is truly incredible and inspiring.

A year ago he had just a few words, but mostly in sign.  Now he is saying lots of two-word phrases, often verbally but sometimes including signs.  He can identify most letters and sounds, and even plays Scrabble Junior!  He knows most of his colors, is starting to "mumble" count, and is saying more spontaneous words than ever before.  

A year ago he was crawling on the floor eager to walk, but lacked the core stability to walk.  Now he is practically running, still with the occasional face plants, but seeing him upright is amazing. He has mastered hitting the ball off the tee and has found a love for baseball.  It's great exercise to improve the rotation in his trunk and his tone.  

A year ago he was on 4 feeds "tube meals"/day that completely supplied his nutritional intake.  He would "taste" foods, but besides a few sips of milk or water/day we were thankful for his feeding tube because it has kept Cohen alive. Today, he has finally overcome his fear to swallow foods!  He still is on 4 feeds/day but we are starting the weaning process!!  For those of you that aren't familiar with feeding tubes, there's a slow process of teaching and learning to eat full caloric intake before the feeding tube can be removed.  A little starvation and an additional medicine that helps stimulate an appetite, Periactin, help him learn that food is good and helps you feel full.  This is a feeling Cohen has never really experienced before and it's amazing watching him open his mouth for food that he once saw as the enemy.  He enjoys eating things like crackers, chocolate milk, french fries, milkshakes, cubes of cheese and avocado, and many others.  On days when he "shows up to eat" he is able to eat 100-150calories/980 calories he needs to grow.  This seems minimal, but coming from the days of sucking on foods and spitting out, this is a huge feat!  He is still far from where he needs to be before he can be tube-free, but it's the little progress we see each day that is uplifting.  Although he has his good days and bad days, it's amazing to think that 3 years ago he was on a feeding pump 15 hours/day.  Just today he ate an entire Yoplait Gogurt!  It's the little things.  This success is by far my most happy moment because for once I can see the light at the end of the tunnel.  

Cohen turns 3 in just a little over a month and the transition from his home therapy program to a preschool program is happening!  Cohen will likely be attending two different preschools.  The first is a parent participation preschool in our neighborhood that for the most part has typical and healthy children that attend along with a great ratio of parent volunteers.  He is completely immersed in the program and has no restrictions on what he can or cannot do.  He is able to see and hear great models of language that should only help to improve his speech.  His favorite thing to do at school is play t-ball, of course.  

He is learning to stay seated during circle time but that's still a bit of a struggle, unless of course it's sharing time.  He recently had the chance to share something from home and we decided to take "Emily" a toy train.  We practiced all morning on our drive into school as I signed green and train in my rear view mirror and he would practice saying "een" for green and "oooh oooh" for choo choo.  When it was his turn to share, I was convinced he would either refuse to go up to the chair or need me to be there for support. But he didn't need me.  I saw something in him that told me, he's going to be ok.  He may be behind, but he follows his own beat and his own path.  He sat up proudly in the chair and the teacher asked him what he brought for sharing.  "ahhhhh," he responded. This is a standard answer of his at first, which usually prompts us to redirect him so he can try to say the proper word.  He looked at me and I did just what I had done in the car on the way in.  By giving him the green and train sign he was able to say "een oooh oohhh."  The teacher then asked what his train's name was and he again gazed in my direction.  "Emily," I said and he responded to the teacher, "Em-eee."  Tears flooded my eyes and it took all of me to push them back in.  My biggest fear for Cohen at this point in his life is how he would do being integrated into a classroom with typical children and how he would be successful when language is such a barrier for him right now.  He showed me that I don't need to worry anymore about him.  He will be fine.  It's not going to be easy, it will be an uphill battle at times.  But it will be a journey that he will take at his pace and his stride.

WE have survived two years!!

This post means more to me than I thought it would.  Our little man is two and honestly there were moments in the past where I thought he wouldn't live to see this day!  At his lowest point on the ventilator in the PICU, I remember the nurse pushing the BLUE BUTTON, the look of worry on her face was not settling to me and I thought at that moment he would be gone forever.  Or the 5 different times the nurses took him back and he went under anesthesia for various procedures and surgeries.   Looking back on all of the ups and downs, it is not hard to have a huge smile, a fluttery heart, and be speechless.  I have no words to describe the joy that this little boy has brought into our lives.  He is a warrior, a champion, a superhero, a fighter, a comedian, a smarty pants, a music lover, determined mini-man that is always pushing himself to the next level and will continue to always need to do that throughout his life.

We are often asked when will he "grow out of this."  The awareness just isn't always there and the misconception that this is a thing that can be fixed and fixed easily sometimes is rather upsetting.  Cohen is meeting milestone after milestone but at a slower pace, his own pace.  Progress is power and he has a lot of it!  But he will continue to struggle throughout his life, whether it be medically, socially, or educationally.  Call me a Debbie Downer or a pessimist, but I've become a realist in all of this.  I can't brush off the struggles I know that may be in his future.  I can just plan and hope that his past was his worst and that his future can only be brighter.  There isn't a cure for 22q and probably never will be.  It is a chromosomal disorder that affects all areas of the body at all different intensities. But with that being said, there are always accomplishments to celebrate!!

It has been over 5 months since my last post and Cohen has made leaps and bounds!  His language has EXPLODED and now has more signs than I can count!  He is extremely verbal and can shake his head yes and no for what he wants, is requesting things to play with by either signing or nodding, and even tells me when he doesn't like a song on the radio by saying "MORE" meaning "NEXT SONG MOM!" He has also begun to show more interest in eating and is requesting particular foods at the refrigerator. This is huge progress for a child that doesn't even know hunger.  It will be the slowest process to get him rid of his feeding tube, but it is something that without it, he wouldn't be here.  As scared as I was of him having his feeding tube, it has made him the stronger and fearless child he is today.  Without it, he wouldn't be progressing and reaching all of these milestones.

And this just happened two days ago, right before his birthday!  It is only a matter of time before he will be running around and we will be sprinting trying to catch up with him.

The other day a good friend asked me, "So how are YOU?  How have YOU been handling the past two years?"  I don't think I've actually ever thought about that nor had the time to do so. I've been treading water trying to stay afloat.  Whether it be trying to give my undivided attention to my eldest child and make sure that she feels special even with everything going on, to the intense care that Cohen needs, I have yet to reflect on myself and what I have been through.  These past two years have been intense in so many ways.  Cohen has overcome major setbacks, I have started a new career in search of something flexible to be able to stay at home with him, and we have recently moved back to California to be closer to family support and nice weather :)  We have had a whirlwind 3 months getting situated here, fighting for therapy in a new state, and making sure that both Cohen and Isla are comfortable.  But even these huge transitions and changes are nothing compared to where we have come from and what we have gone through.   Yes, I know I wasn't the one hooked up to all of the wires and monitors, or the one that has been vomiting every day for the past year and a half, but I have been there through it all!  I, as the mother, will never forget the things my little baby boy went through and am thankful he will never remember those times.

The 2's are going to be wonderful for Cohen!  I'm ready to see what he will accomplish over the next year and know that it won't be disappointing.  His first year was full of beeps, cords, surgeries, and scars.  Now his world is full of wonder, excitement, and curiosity and I hope it can stay that way!

Inchstones....our milestones!

The weather is warming up, we are starting to get healthier and free of colds, and our little man is hitting inch-stone after inch-stone.

Inch-stones to us are what milestones are to healthy children.  Small little inches forward and often a few inches backward, Cohen takes to get to the larger milestones that are "age appropriate."   Cohen beats to his own drum and crosses events/successes off his list at his own pace, as typical 22q children do.  This past month, he has had some amazing accomplishments including finally being able to apply the sign language we have been working so hard on over the last few months.  He is so proud now every time he makes a sign and is happy to be able to communicate with us. 

 Cohen currently can sign these words:

-head/hat

-ball

-milk

-dog

-sky

-car

-bubbles

-more

-stop

-daddy

He can also understand these signs:

-music

-up

-down

-kitty

-water

-cracker

-all done

-bath

-mommy

-Isla/sister

Here is Cohen signing head/hat while watching a baby signing time video.

And he has officially said his first word: MILK....Mommy is a close second but still not consistent quite yet!

He is able to follow simple commands like: give mommy the ball, or put the book on top!  He has mastered holding books in the proper orientation and is taking interest now in puzzles.  All of these behaviors typical for a child much younger, though it doesn't matter to Cohen or to us because that's all he knows and he smiles through it all!

Just today for the first time, Cohen took his first crawling scoots across our floor trying to reach a favorite toy, Elmo!  For once we are crying tears of joy and not tears of worry or anguish!  He still hasn't quite figured out his motor plan but will and once that happens, we are all in for trouble....especially his older sister Isla.  For the past 18 months she has been a sibling to a "baby" who has kept to himself.  Now that he is mobile, I'm anticipating the sibling rivalry to finally commence!

While waiting and anticipating all of these inch-stones, we have also become very involved in the 22Q community.  In May I was the 22q at the Zoo coordinator for our local zoo.  This is an international event that helps spread awareness for 22Q and also allows families to get together and share their experiences.  We had about 10 other families at our local zoo.  It was amazing to see that Cohen still remains one of the youngest at these outings and is is very rare to be diagnosed in utero.  

Just last week I was asked by the Dempster Family Foundation to be interviewed to take part in their PSA that they are filming as a means to show the faces of 22q and the story behind the families that are effected.  It was amazing to take part in this interview, share Cohen's journey, and my insight on how lucky I feel we were to get diagnosed so early on.  It is NOT a RARE DISORDER, but a RARELY DIAGNOSED ONE!  

Just last weekend, we attended the 22Q Mystery Bus Tour. 

 This is another event the Dempster Family Foundation has created in trying raise awareness, while on the GO!  They travel all over the country with this bus so that the everyday traffic/citizens can see the bright colors and hopefully research more about what 22Q is.  It also gives us families another opportunity to network.  It seems like we often meet up at different events, but to me it seems there is never enough time to learn more about another family's experiences or their child's struggles.  I could talk to these parents forever, comparing notes on doctors and asking them questions about their experiences if their child is older.  I want to pick their brain.  I often find myself scoping out the older children, not in a judging way, but looking to understand what I have in our future and what I could expect with Cohen when he's 7, 10, or 19 years old.  It's always a double-edge sword when we attend these events.  Though it is helpful to network with other 22q families and be able to see the huge successes of children older than Cohen, it's sometimes also overwhelming to see what hurtles we may face as he grows.  

As a way to continue my mission in spreading awareness for my son and the rest of the 22q community, I am doing so through my new business.  Back in August of 2014 after being home with Cohen for 5 months, I started my own business as a merchandiser for a jewelry company called Chloe & Isabel.  It was the perfect opportunity for me for a variety of reasons. I'm able to stay home with the kids and care for Cohen while having an online store as well as host in-home pop ups during the weekends and evenings.  It has allowed me to feel human again, meet some amazing women, and engage with new people to share Cohen's story with.  My goal is that each time someone purchases from my online boutique I'm able to share with them about 22q and hopefully when they are complimented on their new purchase, they can pay spread awareness as well.  

You can visit my online boutique here: https://www.chloeandisabel.com/boutique/lindseygarcia

Ryan continues to work partnering with the Dempster Family Foundation to help spread awareness for his project: State of Kind.  He currently has a few different states in the works, so stay tuned!  You can stay up-to-date on his mission here:  http://www.366randomacts.org  Also with the current NHL Finals, he has organized a fundraising event that will allow friends/family to donate based on the Blackhawks success!  Learn how you can participate here: https://www.facebook.com/366RandomActsOfKindness/photos/a.382006208482814.111623.354778471205588/1142804445736316/?type=1&theater

I'm NOT a doctor!!

I'm a mother, a nurse, an advocate, a caregiver, a doctor, and oh did I say doctor?

One of the most challenging obstacles Ryan and I have had to face and accept is that 22Q and it's many quirks is still a mystery to most. When finding out Cohen had 22Q in utero, we immediately met with a geneticist who explained to us more about his genetic disorder and "typical" things we could expect to face along the way: needing open heart surgery, feeding tube support, learning delays, speech delays, and the list goes on and on.  All of these things although overwhelming at the time to both of us, to me seemed very clear cut!

He can't eat? We will have to have a feeding tube put in for a bit.
He is delayed in his speech?  We will have speech therapists work with him and get him the support he needs.
His heart has a murmur? We can endure open heart surgery!

It never occurred to either of us that this would be a life filled with trial and error, guess and check, positive and negative results, and us advocating for our son about even the smallest things.  Having family members in the medical field: both grandpa's were veterinarians, I knew that their job was tough trying to treat sick animals.  I know that medicine is about the process of elimination (and no offense to any of our friends/family members who are in the medical field), but the process of elimination sometimes SUCKS!  And sometimes that process is a very slow process, that can take days, weeks, months, and even years.   Months and years taken away that you can never get back again.  This admission is already going on over a week trying to get Cohen back to where he was before he got sick and brought him in last Sunday. I've already seen two of our neighbors be checked in and out in one night, and we are still here!  It has been a guess and check system that has created daily vomits, weight loss, and sleepless days/nights trying to figure out the best way to treat him.

It's never comforting when the doctors are asking us, "What do you suggest we do? What plans do you have?"   This isn't the first time we've heard these remarks.  It's dejavu all over again and it has been for the past 5 days!  Since when was my name changed to Dr. Garcia?  Yes, I have become quite knowledgeable in the hospital setting and have accrued many new medical terms, but I'm not in the hospital trying to solve why Cohen is sick.  I know that part of those questions stems from trying to work with families to help care for their sick children, but honestly it's disheartening having that weight on your shoulders.  If we suggest something and it goes wrong, then we are stuck living with that decision.  If we decide something and it works, then great and suddenly we have more medical expertise than the doc.  It's a daily battle we fight to determine if what choices/changes we make will affect Cohen and his overall well-being.

I remember going to the doctor when I was little with my mom and just being in the office for a few minutes after he saw me, I felt better and my mom was relieved.  I never truly have gotten that feeling in my stomach yet since Cohen has been born.  Last year in the hospital many "band-aids" were put on him to mask the problems that would arise but we never fully got answers. Now after 6 days in the hospital Cohen has finally stopped vomiting (crossing my fingers as I write this post and a feed is going) and is starting to tolerate his feeds again.  WHY?  Because of ME (and Ryan :), oh and our little guardian angel Kimberly P :)

Kimberly is a mom that I have mentioned before in my posts long ago who I reached out to when I first learned of Cohen's diagnosis.  Her son also has 22q and he has lived a similar path to some extent as Cohen, but also has had some other struggles along the way.  Having a sick and complicated child, she is a wealth of knowledge to us and has been each time we are hospitalized.  She always offers suggestions and things to ask the doctors at rounds.  She is always positive through everything her and her little guy have been through and it's inspiring.  I remember her exact words to me when we had our fist conversation on the phone last July.  "YOU have to be Cohen's ADVOCATE!"  I didn't quite get what those words meant at the time, but each time being in the hospital has taught me the power of those words.  An advocate is someone who is brave, confident, relentless, a problem solver, and headstrong.  I cried to her on the phone about how I felt lost again in this whole process, how it didn't seem like the doctors knew what was wrong with him.  Cohen was again in the hospital and the one that was "puzzling" the doctors.  There was never an easy fix for him, never a one night stay in the hospital.

On Friday morning before rounds when the attending doctor admitted she was "Puzzled" by him, I suggested a few things:

1. They could stick to our current feeding schedule and not push him so much, like we had suggested a few days ago at rounds.
2. They could get the GI team (other docs that we haven't seen before) to weigh in on what they thought since our current GI is not an on-call one and hasn't been in to see him.
3. We could consider increasing his calories and that would help decrease his quantity.

The attending GI docs stopped by on Friday morning and suggested a new plan that we be aggressive with Cohen's current motility medicine and try to knock this out by increasing the dosage from 0.25mls 3x/day to 0.6mls 4x/day! Thank god they didn't think he would have to return to the GJ tube since they felt his motility was completely out of whack due to being sick 3 times in the last 2 months.  After those suggestions were made, it only took about one day and we have noticed a huge improvement in how much Cohen was vomiting.  We went from having to clean him and the bed up 5-10x/day to NOT AT ALL!  Not sure when we will get home (I don't even ask anymore), but as long as he continues down this path, I think we are headed in the right direction.

It's exhausting being an advocate for your child and going to bed every night researching and thinking about what the plan should be in the morning.  Making a list of questions to ask during rounds and things to try is a ritual to us now.  But no matter how exhausted we are, there is nothing that would make us stop advocating for him.  He relies on us to do it!