Sunday, January 18, 2015

2015: The Year of Cohen!

When the new year begins, it really takes you by 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'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!