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!

One day short of a year!

It's April 8, 2015 and this post has been planned in my mind for over a few months now.  April 7 is a day of great importance in the Garcia household these days, but as I'll explain, I wasn't able to write that post.

We have been counting down the days on our calendar to a very important holiday: 1 year out of the hospital!  April 7, 2014 we were handed over our little warrior from the hands of the doctors and nurses one final time in hopes that this time he would remain healthy and at home. And he did.  He has grown, gained weight, matured, and created so many memories in the walls of our home that we were blessed to have experienced.  Isla has loved waking up every day to the squeal of her little brother and also being able to boss him around from time to time.  Even through the past two months with two very intense upper respiratory illnesses, he has been a champ hanging in there and remaining out of the hospital.

We had a great Easter and spent it with my in-laws in the burbs.  Cohen was in great spirits and dressed up for the occasion!

After returning back home, we started his first evening feed at 6pm and he went to sleep.  Ryan and I were relaxing on the couch watching tv, and digesting our Easter meal.  We ironically were talking about how in just 2 more days it would be 1 year that we had taken Cohen home from the hospital!  Little did we know, that anniversary would be cut short by 2 days.

By 7 pm he woke up vomiting.....this is a norm for him lately and we didn't think too much of it.  Usually if he's not tolerating a feed, he'll throw up and usually be ok, but this time was different.  Every 15 minutes he was waking up and vomiting.  GRAPHIC WARNING:  The vomiting got to the point that he started having green neon bile.  This was definitely a sign something was up.  I kept waiting to see if it would stop so I could try to give him some pedialyte but he was a mess.  We called his PED and "you have to take him in" rang through the phone into my ear.  NO, this couldn't be happening.  He couldn't just last two more days?  He has been able to stay home before with a 106 fever, but because he's vomiting we have to?  She said it would probably just be an overnight thing...but she apparently didn't recall the 17 weeks we spent in the hospital last year.  The 17 weeks we were ripped apart as a family.  I knew in my heart we had to go in too, but I also knew this probably wouldn't be a quick fix.  Cohen was vomiting every 5 minutes at this point, I didn't feel safe driving him there by myself worrying if he would need me to help him.  So we were able to get our amazing neighbor Kristen :) to come down and help us.  She stayed at our place while Ryan drove me and dropped me off at the ER.

We arrived at the ER by 10:30pm.  It was the barrage of questions again this time strictly about his gi issues and history. When was his gtube placed? Why was it changed to a gj tube?  When did he start vomiting? How many times did it come out green? For once we were focusing on vomit and not a respiratory rate!  I was a little relieved at that :)  He was vomiting non-stop and every time I put down the "puke bowl" for more than a  few minutes, it would start up again.  They took an x-ray of his belly to rule out any obstruction since he has been vomiting green.   They figured it may be a stomach flu and would put in an IV to give him anti-nausea meds and also start fluids to hopefully get him feeling better.  It was terrible watching them try 3 different times to get an IV in him. Being a baby before, really has it's benefits as I can recall watching Cohen smile when he used to get IV's put in.  Being as dehydrated as he was, his veins had shriveled up and it made his very small veins that much smaller.  Finally they were able to get one in his foot and once they did he seemed to start feeling much better.  He was so exhausted from all of the work he had done all evening and it being 12am, he passed out while sitting up in the hospital bed.  We were finally admitted to the hospital on our favorite floor: 21 at 3:00am.  Both of us exhausted, the nurses quickly took his vitals and we both went to sleep!

Being in the hospital this time around has its trade offs.  Last time Cohen was in a hospital he was only 5 months old and now being a 16 month old it becomes rather challenging to entertain a little toddler in a hospital bed.  He is limited at what he can do physically since he has an IV near his left ankle.  He cannot put weight on it, so he pretty much moves from lying down, to pulling up to a sit over and over again.  We have brought in some toys for him to play with and books to read but passing 3-4 hours of wakefulness in a hospital setting is much slower than doing it at home!  He is also unable to leave his room because he is "isolation" due to the fact that he is vomiting.  The perks of being a returning patient is everyone knows his name, our faces, and our story!  We had visitors the first day we were here and every day since.  It's those little 5 min windows of time where chatting with an old nurse or therapist helps make you feel like you are at home and not stuck in a 5x5 stark white room.  Everyone has been commenting on "how big" he is since some of them haven't seen him since he was 5 months old.  It's reassuring that even though he still struggles to gain weight and develop more slowly, he is making progress in the long run.

I stayed at the hospital through Monday afternoon when I switched out with Ryan to stay with Isla.  Now that he's older it is not even an option about leaving him at the hospital.  Watching him sit up in the hospital bed and looking at the door sends a pain right through my heart making it impossible to leave the little guy, even to run down the hall for a refill of my water mug.  On Tuesday afternoon I was hit violently with a stomach bug.....trying to take care of Isla while sitting in the fetal position and running to/from the bathroom was draining!  Ryan stayed at the hospital so I wouldn't infect Cohen.  In the middle of the night Isla woke up with the same thing and by 5 am Ryan was already rushing home in a cab about to hurl.  Luckily, my MIL Penny was able to take the day off work to stay in the hospital with our little guy. We all are nursing back to recovery as we speak.

So the focus of this stay is simply to hydrate him and get him to tolerate his feeds.  We have taken a HUGE step back as far as his feeds go.  At home he was able to tolerate 5 feeds/day each one 165mls over about an hour and a half.  Now we are trying to get him to tolerate 8 feeds/day each one 90mls  over an hour and a half.  His GI doctor thinks that with the combination of being sick two different times already and then getting knocked down with this stomach flu, it has really taken a toll on his motility.  His body is going to need some time to recuperate, much more time than the ordinary person and we need to take time with trying to gradually get him back to where he was before.
PAUSE: PUKE BREAK :(

I just had to check on the little guy who has yet puked again.  Not sure how much more of this he can take and I can take getting covered in vomit.  The doctors want him to meet his caloric intake but at this point I'm asking to have a new plan.  I understand trying to make sure he doesn't lose too much weight, but at the same time watching him vomit every feed doesn't seem to be worth it in the long run.  I'm off to bed with heavy eyes and hopeful that tomorrow brings less vomit and more smiles from my little guy!

Tears

As I write this I have tears dropping on my laptop!  It's one of those nights. I'm sure many mommies can attest to having "a moment" when you really are feeling down on yourself for one reason or another.  This night and day in particular has been getting to me. It's probably because I have been nursing my family back to health all weekend long and still Cohen remains sick.  I'm frustrated, exhausted, and upset.  Since last Thursday I've been taking care of everyone in this house except for myself.  Ryan, Isla, and Cohen all had pretty bad colds, but Cohen really took a step back during this one.

Tonight I was planning to relax and hop on a national call for my jewelry company( C &I) with a glass of red wine in hand while Ryan was at the gym.  Instead I spent over an hour trying to comfort Cohen and remind Isla to go back to sleep.  Cohen has remained sick even when both Ryan and Isla have overcame their illness this past weekend.  He is sensitive and fragile again and it reminds me all too much of the days we spent back in the hospital.  I want to take away his pain, cough for him, and take on his fevers but I can't.  It's so frustrating to watch your little guy go through so much day in and out while you remain healthy and feeling great.  I know I need to be strong for him but tonight as I sat rocking him in the rocking chair, my mind started racing.

"What if this is going to be our lives forever?"
"How can I divide my time and energy equally between both kids?"
"How can we get through this?"
"Why does he have to struggle so much and how is that justified?"

It's been over 14 months and though we have made huge gains and he's soared leaps and bounds in some areas, sometimes I find myself sulking over accomplishments he still hasn't made yet.  Seeing babies his age talking, walking and eating, remind me that he just isn't there yet.  Worry sets in and I find myself in a panic as to when these things will happen for him.  He is coughing in my arms and ends up vomiting all of his food onto his sleep sack.  This has been our routine for the past week.  He has not been tolerating his food, coughs, has a runny nose, and at one point even had a 106.3 fever (yes I couldn't believe it myself and expected a hospital trip, but doc insisted we could get over this at home and we did!)  Being as sensitive as he is, a normal cold is not your typical series of events.  He can't really take any medicine via mouth yet, is uninterested in eating/drinking anything, and needs to sleep with oxygen still so it's that much harder to keep his nose clear to breath while congested.  His motility seems to be jeopardized when he gets sick as well, which highly effects how much food he can tolerate through his feeding tube.  A small little cold that Isla had is a much bigger concern for Cohen.

This is more of a venting post, but I just had to get it out there.  This is for any momma who has had her moments, whether it was a toddler's tantrum, or not having time to shower or eat lunch.  Everyone is entitled to having one of these moments every once in awhile and that was mine!

Good Night :)

Three Miracles in One Week!

As I cuddle up on my warm couch and watch the Super Bowl tonight not venturing out in this crazy blizzard we are having in Chicago, I think about three miracles that have happened this weekend. The first miracle happened almost a week ago.  After Cohen was cleared passing the gastric emptying study we scheduled him to get his feeding tube switched from a gj to just a g tube.  The last time he had a g tube was exactly a year ago when he went into the hospital via ambulance for turning blue on us in the house after choking.  The doctors decided it would be safest for Cohen to get the gj tube at that point and it was placed February 27, 2014.  Although it has been a means of nutrition for Cohen, transitioning him to just a g tube will help him transition to eat more food by mouth and in time not need his feeding tube. But this slow process does take time.  He had it placed on Monday, no surgery, just an office visit and he did very well!  We have been working at increasing his tolerance to a larger quantity to hopefully move him from 5 feeds/day to just 4 mimicking a typical feeding schedule for a child his age.  It's quite uplifting to think that just 2 months ago Cohen was still eating through the night and some day (almost on the pump for about 15 hours/day).  Now he is only attached for about 5 and it amazing to be able to sleep from 11pm-6am with uninterrupted sleep.


The second miracle happened over the weekend. For once as a family we had another dose of "normalcy."  When I say normalcy I don't mean it in a negative way to people or families that don't get to experience "normalcy."  I think of normalcy as something that people take for granted every day.  Things that you do on a daily basis that are easy, effortless, and you wouldn't even think twice about doing an hour later.  Normalcy is feeling part of the community you live in, the network of friends/family you have, and being an active participant.  Though I love that Cohen is unique, eccentric, and special in so many ways and it has taught Ryan, Isla, and I to be thankful for the little things, transitioning from a normal way to our new normal has been rough on me.  Being the perfectionist I am, it was so challenging this past year to take the stares from others, accept the fact that Cohen is going to do things at his own pace and his own way, and realize that some friendships might never understand the challenges our family faced last year.  It took me this long to accept our new normal, as I've talked about in previous blogs.  Cohen has made this new normal for our entire family and it has all effected us in ways we could've never imagined.

This weekend though, we left our new normal home.  For the first time since Cohen has been born, we went out and did things as a family two nights in a row!  Both of them were rather spontaneous and something we really couldn't have done even a few months ago.  On Friday night, we went to a local playroom in Chicago, Peekaboo Playroom, for a Rapunzel sighting and it was so relieving to be able to just up and leave without tons of equipment.  From 4-7pm we spent time as a family together outside of our home...away from monitors, oxygen, feeding pumps, beeping, alarms, medicines, etc.  Cohen had his first experience at a playroom and Isla was enamored by watching Rapunzel sing.  We made it back in time to start Cohen's feed and put them both to bed.

The next night, we again ventured out to a local neighborhood bar that was hosting the neighborhood association annual party.  There were many families there and we had the chance to finally meet neighbors.  It was yet again another occasion where Cohen was able to go completely cordless, free of any baggage, and it felt amazing!  Sometimes its rather surreal for me to walk into a place with other families and parents of very healthy children.  It's challenging to not feel any slight jealousy of their kids walking, talking, and eating normally.  It's difficult to have to answer questions about his age, when he appears smaller than he is and then feel the need to have to explain the situation.  Cohen is our miracle baby and has accomplished and endured more things in his short life than many people can say they have done.  Sometimes it's a reminder though when we do take him out in public and it's a realization that even though to us he is doing so well, seems so chunky, and healthy that he is still so behind.  You see another baby the same age as Cohen, who is standing and almost walking and it is a reminder that his development is a struggle for him and continues to be.


But with that being said, our third and most exciting miracle happened tonight.  We were supposed to attend a friend's annual Super Bowl party and Isla had even prepared some snacks from her new Disney Princess Cookbook (thanks Aunt Michelle): Tiger Fudge and Princess Popcorn.  After getting all bundled up, looking outside, trying to get a cab, we finally had to change our plans and stay at home.  We all changed into our Bears gear and got comfy in the living room waiting for pizza delivery.  Cohen was up playing and babbling a little as he sometimes does.  But within minutes and out of nowhere, his babbling advanced to actual repetitive  ba-ba-ba-ma-ba-ba-ma-ma!!!!  Up until this point, he would do raspberries and an occasional "b" or "d" or "g" but nothing like this.

Tears of joy stained my husband's cheeks (definitely the more sensitive one of us both) and I stood there with my jaw open in shock.  How did this just happen?  This moment we had been longing for so much had just happened and all during our Plan B Super Bowl Blizzard Party?  We ran to get our phones and video tape this monumental milestone for Cohen.  Something I don't think I realized until being the mommy of a special needs child is the milestones that they accomplish are far more impressive and overwhelming than of a typical healthy child.  Not saying that we also didn't cry tears of joy for our first whenever she did anything, and even today when she learns a new fancy word or when she signs her name.  But there is something to be said about the waiting and longing, the hoping and praying, the doubting and pleading that one day he too will go through those same life moments that she did.  His road and journey have been tough and challenging and although sometimes I doubted in my mind that some of these things would even happen (probably to save myself the disappointment) it's easy to say that I will no longer doubt him.  I will stand by his side as his proud mommy helping him, coaching him, and loving him every bit of the way!

2015: The Year of Cohen!

When the new year begins, it really takes you by surprise.....like the fact that I haven't posted something in over 5 months.  Things have been going great and I was shocked before writing this post that it has been another 5 months already.  Routines are in place, therapies are continuous along with doctor appointments, and slow and steady progress is being made!

Maybe that's one of the reasons why I haven't posted.  Getting lost in hustle and bustle of caring for two children.  I also haven't posted because originally this blog was supposed to be a means of getting information out to as many people as possible.  Ryan and I were tired of having to relay doctor notes, what meds have been changed, recent procedures performed to each person who asked.  And so the blog was created.  But it didn't occur to me until my MIL's 60th birthday party this past weekend, that many have been wondering how Cohen is doing and what he's been up to.  "You haven't written your blog in a while....how's Cohen?"  I guess when things are going great you don't think to inform people because you are lost in the wonderfulness of those moments. We have been enjoying each milestone, each first, each memory that is made here at home and have neglected the people that have truly stood behind us, prayed for us, visited us, and comforted us during our lowest points in 2014.  So for all of you who are curious and want more than just the average few lines on Facebook, here is the update!  (I apologize ahead of time for my lengthy post...but this boy's progress needs to be noted!) Welcome to the Year of Cohen!

Huge accomplishments:

Pulmonary/Sleep Medicine:

No More O2 during the Day!  Around October his pulmonologist finally gave approval to remove oxygen therapy to his home routine during wakeful times.  We also were given permission to only use his oximeter (oxygen monitor) when needing oxygen and asleep.  This was literally a weight off of our shoulders.  Frequent walks to the park was no longer a hassle and we were able to carry him there CORDLESS!!!  Isla was able to go out of the house and we didn't have to be preoccupied carrying multiple electronic devices for her brother.   Cohen will continue to need his 0.5 liters during sleep (naps and night) but not during the day is a luxury!  So even though he isn't attached to oxygen during the day, you may see him still sporting his nasal cannula.  That's just to save his skin from having the tape to be removed over and over again.  He will be getting another sleep study in early February and we are hoping that his airway will continue to improve.  

Audiology (Hearing):  Due to having 22Q Cohen needs to follow up with lots of other specialists even if he doesn't present any symptoms of needing check-ups.  He had a repeat hearing screening and did not pass entirely.  We followed up with ENT and they were able to see some fluid in his ears that could have possibly been from birth, since he's never had ear infections.  She also discovered a collection of ear wax that she was able to pull out of his ears. We then did another repeat hearing screening and he passed!  So so far, no hearing concerns for our little guy.We will continue to do repeat follow ups with both audiology and ENT to make sure that his hearing stays up to par.

Opthamology:  Another specialist to add under Cohen's resume.  We had noticed that he had two different sized pupils back in August when we almost had home nursing come in to help.  Upon exam they noticed the different sized pupils.   We followed up with opthamology twice  since my last post and determined that he was most likely born with these different sized pupils making another cool unique thing about him!  He also happens to have sight within the normal limits....and I would like to take FULL credit for this! Hopefully my genes will pull through!  The doctor did mention sometimes kids with 22q get lazy eyes so we will be following up every year.  

Plastic Surgery:  No, Cohen is not getting reconstructive facial surgery....but he did have a helmet as many of you saw!  His white hard hat was only needed for 3 months...Dr. Vicari said that Cohen had some of the quickest progress he has ever seen in a kid Cohen's age.  Usually it is recommended for babies to get helmets around 4-6 months of age.  We initially were debating this between ourselves...both coming from different angles. I felt Cohen had enough to deal with and really didn't want to add one more thing to the mix.  Ryan was concerned about Cohen's future later in life and how his flat head would add even another reason for a mean kid to tease him.  With all of the other trials and tribulations Cohen will have to face as he grows to school age,  his head shape was something that we could control and hopefully remove a future rude comment.   It worked out perfectly because as sweaty as Cohen is, holding off till he was 10 months made the winter time perfect for him to wear the helmet.  He adjusted to it very easily, still remained strong during therapy, and we even met some friends along the way who related to his story.   It's amazing how adding a white hard hat to the mix really draws even more eyes on the little man. Before it was common for people passing by to notice the oxygen, but now the white shiny hat took the cake!  Now 3 months later, it has been removed and another thing peeled off to make his life easier.

Physical Therapy and Occupational Therapy:  We continue to receive therapies in our home 3 days/week when Cohen and I are able to learn new skills and exercises to help him grow muscle and develop.   He has made huge progress in the last 5 months and even though he is still behind, he is definitely the LEAST behind in this area of development. At around 10 months he was finally able to sit up independently...this was huge!  He also learned to roll out of tummy time, rolls from side to side (not all the way over yet from back to stomach), and reaches very far for toys out of reach.  Most recently over the holidays he began bearing weight through his legs without the need of leg braces to help him.

He enjoys this new view and how he can observe life happening around him!  We are hopeful he will continue to make the same amount of progress in 2015 as well! 

Speech Therapy (Speaking): After my last post I was introduced to a speech therapist through Lurie that specializes in kids with cleft palates and does "Resonance Therapy."  This is therapy directed solely at how kids develop their speaking skills through imitation, signing, cues, and use of familiar objects.  We go twice/month and are given various activities to practice with Cohen to help him develop!  Signing common objects to him, and seeking vocalizations from him in order to get something he wants are currently our focus.  Instead of Cohen squealing, we are giving him the tools necessary to ask for items even if he doesn't have the words yet to do so.  Speech (feeding and speaking) is by far something that he has the most difficulty with and where he has the biggest deficits.  This is not uncommon for kids with 22q and is often expected at the younger ages.  Currently Cohen will occasionally make a "g" "b" sometimes "y" sound in between his "dolphin" sounds and squeals.  To put it into perspective kids his current age (13 months) are usually babbling and have even said a few words (mama, dada, etc).  When that day comes for Cohen, both Ryan and I will be beside ourselves. But for now his dolphin sounds light up the room and his smile is magical!

Speech Therapy (Feeding): Cohen continues to receive speech therapy at home as well as at Lurie.  Looking back at how fragile he was when he came home taking pacifier dips (literally dipping a paci into formula for him to practice sucking a small amount of liquid) to now, it is remarkable.  With receiving intensive speech therapy and practicing 3x/day at home, Cohen has not mastered but has experienced the following:

-drinks almond milk with a straw and is able to suck independently. (most still comes out of his mouth, but his control is getting stronger!)

-likes to eat pureed avocado, hummus, and anything savory.  He HATES SWEET foods! (common with very bad reflux).

-munches on carrot sticks, pretzel rods, inner peas, pickles, puffs cut in half, and metal spoons.  

-has experienced cows milk baby yogurt, pureed gumbo, sriracha bean dip, and today...a meatball.

When I say "experience" that is what I mean.  All of these things listed above are about giving him the experience of what the feeding life should be like.  Because he is still using the feeding pump, his hunger is not there and therefore he doesn't truly "eat" these things.  He'll take a few bites to about 10 bites on a good day, but we are working hard on developing his oral motor skills and his time off the pump to allow him to be hungry.  Speech is very dependent on his GI issues which are Cohen's #1 struggles.

GI: Per my last post, our GI was not on board with trying to help Cohen grow and thrive and did not have the same expectations for him.  We were put into contact with Dr. DuMont who does integrative medicine.  After only a few visits with him, he was able to help Cohen advance and also help us pinpoint the struggles we have been having with his feeding tube. He was willing to work on increasing his reflux meds, trying alternative acupuncture, and was very easy to reach in times of .  Starting in early September Cohen's feeding tube (the actual site) began leaking occasionally stomach fluids.  He was still being fed entirely in his intestine (j port) but it was making our days messy and tiresome having to change his clothes.  The docs at Lurie pointed fingers at GI saying Cohen had a "motility issue" that we needed to address and that's why the tube was leaky.  Cohen had already been on motility medicine (Eryped) since in the hospital to help keep things moving along. Working with Dr. DuMont, Kathleen (Cohen's amazing nutritionist/dietitian/nurse through E.I) and ourselves, Cohen has made HUGE progress with his feeding.  We began trialing him on feeds in his stomach and have been able to transition him to only getting his nutrition there 5x/day.  This has allowed for more time off the pump because he is taking his nutrition more frequently and over a fast time frame.  He still leaked occasionally but he was not vomiting, proving to us that he was tolerating food in his stomach. The last time Cohen had food in his stomach was before he had gone into the hospital in February when he turned blue on us at home.  This was huge gains that we had been waiting for.

After visiting another surgeon for a second opinion he suggested that the tube could be faulty but also thought it may be a motility issue.  Before switching the tube, or putting him through surgery, he wanted to be sure. So just last week after returning from our trip to California, Cohen had a gastric emptying study done at the hospital.  He was taken off his motility meds for a few days before and then during the study they fed him a quantity of food quickly to his stomach through his feeding tube.  This was followed by a series of pictures every 30 mins so they could monitor how the stomach emptied. We received some of the best news since being home....Cohen's stomach emptied within normal limits.  This proved to us that his tube was faulty and these past 5 months of changing outfits frequently and wiping up formula or stomach acid would hopefully soon be over!  We have not needed to put him back on the motility medicine either which is another thing he hopefully will not be needing in 2015!  We are in the process of getting Cohen changed to a gtube and removing the gj tube.  This would be a huge step in the right direction. We could begin to transition him to needing the pump less as his oral intake begins to increase.  This is a slow and steady progress that could take years to achieve, but we are sticking with it and so is Cohen.

And with this slow and steady progress, Cohen continues to grow steadily.  He is now weighing in at 18lbs 3 oz and about 27 inches long.  (That's a ways away from his whopping 5lbs 13oz and 19.5 inches long!)  This little chunker loves spending his days playing with his toys, squealing with his big sis, and making us the happiest parents ever!

            Seeing where it all began..our wedding site in California over our holiday trip to Cali!!

                                                   Cuddling on the cough with my buddies!

                                           His "first" true Christmas....last year didn't count!


Thanks to all of you who still care to hear updates about Cohen and his story and journey.  I promise to not wait 5 months until my next post so I can share Cohen's progress with all of you!  

4 Months of Updates, Growth, and Improvements!

Rolling...laughing...squealing...and eating!  These are all amazing firsts we have been able to experience with Cohen in the comfortable setting of our own home.   I have been asked by a few people when the next post would go up on the blog site and I have been waiting patiently for August 7 to arrive. Yes, I know it's now August 12, but that's because I was busy in California for my best friend's wedding.  (Congratulations Lorinda and Aaron..woot woot!)

This important date marks the 4 month mark of being home and out of the hospital.  Although this is a huge milestone that our family is celebrating, it's still amazing to think that it is an equal amount of time we spent at Ann & Robert H. Lurie Children's Hospital in Chicago.  Now looking back it is hard to believe we spent that amount of time there, living daily walking the halls, eating in the cafeteria, and conversing with his nurses like they were members of our own family.

So much has happened since my last post in late May.  We have had many FIRSTS that we were able to celebrate in our home and not the hospital!  He has begun to roll from side to side, not quite interested in rolling all the way over to his belly quite yet.  He can now make raspberry sounds with his lips, he began eating his first purees (detailed below), and has his first tooth coming in!  We have also  had many, MANY follow up doctor appointments with his specialists and for the most part everyone is happy with his progress. Here is a quick breakdown for those that want the nitty gritty:

CARDIOLOGY: VSD (hole in heart) is starting to close up on its own and at this rate there is a huge likelihood he will never need to have open-heart surgery as long as there are no other complications on the way.  He also now shows no pulmonary hypertension which he has had in the past.

IMMUNOLOGY: Has a great immune system!  We are very lucky as many 22q kids struggle to fight off even simple colds and often do not have a thymus.  Cohen has a thymus and currently exhibits positive lab results that indicated he is able to receive all vaccinations, including live vaccines.  This will be one less thing to worry about with Cohen and peace of mind to know that he will most likely be protected from some dangerous things.

PULMONARY: His breathing has been slower since our last hospitalization and the only time he really gets going is when he sees his older sister.  We have also been given permission to trial Cohen off oxygen for 30-60 mins at a time to see how he tolerates it.  This is something we have been pushing to have happen for awhile now, since he never truly needed the oxygen from a saturation standpoint during the day.  It was always tough to figure out what slowed down his breathing:  the 24/7 oxygen added or feeding him no longer in his stomach to reduce reflux. Both changes were made at the same time, so it's only realistic to try changing one thing at a time.  So far, so good!  We have been turning off his concentrator after he wakes up in the morning and after his naps and leaving him attached to the oximeter (oxygen monitor) to see how he does.  It was a pleasant surprise to see that Cohen can hold his own during the day and as long as he isn't eating, doing intense physical therapy, or rolling causing his sensor to falsly sound, his oxygen sats remain between 91-99% which is normal and what we would want to see.

SLEEP MEDICINE:  We recently had an overnight adventure at the hospital for a follow-up sleep study.  This was again another reminder of how eerie and surreal it feels to be in the hospital.  Nurses, doctors, stale air, winding hallways, were all too familiar.  But this was a scheduled sleep over and hopefully it would lead to positive results (less O2).  The sleep study went very well, well as can be expected for someone that is hooked up to 100’s of wires, monitors, and probes and then having you almost confined to the bed in a baby straight jacket, was a perfect combination for a deep and restful sleep.  It is still amazing to me how any results come from this get-up. His results were impressive and although we don’t have his official follow-up meeting with who we call, “Mr. Sandman,” we were excited to hear that his oxygen needs have decreased while sleeping, needing .5 liters now instead of the current 1.5; however, this is up for debate as we have yet to decrease oxygen support at home until our follow up appointment.  He did seem to have the same amount of apneic episodes though, so who knows at this point.

SPEECH:  This is by far the most important area to me….maybe I’m being selfish or shallow but to me eating by mouth is something that represents a sense of normalcy.  Although Cohen has many devices hooked up to him, he still remains an active part of the family.  He is able to do most of the things that his sister does.  He visits parks regularly and takes soapy baths at night.  He is able to laugh and squeal, play with his sister on the mat, and enjoy books.  All of these things are typical activities most babies participate in with their families and they are still possible without his oxygen needs getting too much in the way of those things.  But having a feeding tube is something that does not allow him to experience the same things that we do on a daily basis.  His feeding tube has been a godsend, don’t get me wrong…and I know without it he would not be surviving and thriving as well as he is doing right now.  He has even formed a strong connection with his Pete the Pump and often squeals when it is brought into the room, but we continue to remind him to not get too comfortable with it.  J 

But, the thought of him sitting at the dinner table with us each night and not eating in the same way, not going out to our favorite family restaurant on Friday nights and eating pizza together, or tasting his friend’s birthday cake, is something that frightens me.  There are many children and adults in the world that don’t get to have that “normal” part of their lives and are forever hooked up to a device that is feeding them.  Whether it is for supplementing nutrition, or because they are unable to swallow, feeding tubes help them live and survive.  The thing that has always irritated me though about this entire situation is we were unable to feed Cohen because he was breathing too fast…not because he couldn’t swallow or had an aversion to it.  Of course, I didn’t want him choking, but it killed me to know that he was able to do it and we had to put it off week after week.  My fear was that the longer we waited the harder it would be to get him to want to eat by mouth and in the end he wouldn’t be eating with us because he was breathing too fast, not because of his swallow.  We have been working closely with his speech therapist 2x/month to continue to have him take tastes from his pacifier and recently increased to tastes of purees on a spoon.  This has made a world of a difference for him.  He has always been a very ORAL baby putting everything and anything he can grab into his little mouth.  He has now progressed and can hold a spoon and put it directly into his mouth, much more coordinated than his sister was at this age.  He has worked up to trying: avocado, carrots, papaya, peas, and prunes.  He is very partial to avocados of course!  We worked on this 3 times/day to help him take a large enough quantity to attempt another swallow study. His previous swallow study showed that he was aspirating thinned liquids due to his lack of coordination with breathing fast and swallowing.  A reminder, he was less than 1 week old at the time L  Cohen’s biggest difficulty with feeding right now, is he is STUBBORN!  He wants to be in control and put everything into his mouth on his own.  This is great for keeping his interest, although not ideal for getting the calories in there.  He was able to barely pass a swallow study with just one swallow because he wanted to do everything and was unable to get a large enough volume inside his mouth and the doctors had to take over. This is huge progress from having only pacifier tastes and we are hopeful he will continue to make progress on this long journey ahead.  The day we can all sit down at the table together and eat a meal will be a very exciting one.  Here is Cohen munching away on some pretzel rods after laughing and screaming trying to get Ryan's attention to hand them over!

GI, otherwise known as…CLUELESS.  They are the pains in my side, the doctors who haven’t and won’t take responsibility for what could be his biggest medical issue.  If you’ve read previous posts during Cohen’s early hospitalizations, you would remember the back and forth we played trying to figure out the cause to his rapid breathing and major medical needs.  Cohen was taken off reflux meds and then put back on them…then off and then on again.  Recently we had a follow up appointment with them.  They were angry that I had continued to give Cohen purees even though they thought it was best for him to not take any yet.  They have always been the doctors who I’ve had to convince to make changes, take responsibility, and actually help!  They again emphasized that they were not interested in letting him eat by mouth, even if he were to pass the swallow study.  They were cautious and wanted him to wait until he was fully sitting up unassisted.  This was something I did not take lightly.  It was important that I told them how we felt and that we were not about to let Cohen sit back and again wait for another change to be made.  They are unwilling to work with us so it is only in our best interest to start looking for an alternative GI doctor. I'm sure there will be more to come in a separate post regarding this.  I'll leave you with a few highlights of him being home and us loving every second of it!

In crawling position.

I'm 8 months old and it's flying by!

Check out that signature mohawk!