Monday, April 28, 2014

Really...we are STILL home!

Cohen was discharged on a Monday.  Today is a Monday and it has been three SOLID weeks since his discharge from the hospital and time has truly flown by.  We now look forward to Mondays so much more than Sundays.  Sundays were more often than not the days that we returned to the hospital.  If Sunday blues wasn't already an issue...this would always top it off!  The hospital stays always seemed to take forever and days felt like weeks in there.  All of the countless hours we waited around for doctors to come see us in our room, or hours waiting for Cohen to be off food for a procedure, or hours of trying to get him to sleep in a well-lit room with nurses taking vitals every hour.  Hours and hours of wasted time and time that we would never get back.  But being home now, none of that matters.  It's hard to even imagine what life was like living out of a reusable TJ bag shuffling our belongings to and from the hospital and waiting all of those hours.  It's crazy to even say, but it doesn't even seem like it was that length of time that we spent being a separated family living in two different places.  Because now life is so amazing and meaningful that the hours spent at home are finally filling those hours that were lost.

Cohen has started his therapy at home and is really starting to improve on his development. He will be doing physical therapy twice a week, occupational therapy once a week, and a nutritionist will also be following him three times a month.
We are so thankful that Cohen can receive his therapies in our home.  It is one less thing to have to travel to since we have SO many doctors appointments.  We were finally able to go to some of his follow up appointments and both us and the doctors were so excited to see each other at the office and not at the bedside.  Cohen went for his GI follow up and speech appointments last week and both went very well! GI felt that he should discontinue taking one of his reflux meds (Zantec) since he is showing improvements and never had huge evidence that he needed to be on 3 reflux meds.  Since doing so, he seems to be doing well.  Less medicine is a good thing!!  Speech worked with us on tastes on his pacifier.  I believe I described before but currently Cohen is cleared to do taste tests of formula on his pacifier to keep him interested in feeding until he is ready but also to keep his suck!  Our biggest fear for Cohen is that he will lose his interest in eating and when the day comes to actually try, he will be unable to or unwilling to do so.  Oral aversion is common for kids with gtubes because they don't get the everyday stimulation nor nutrition through their mouths on a regular basis.  Because of his history they don't quite feel comfortable letting Cohen drink a bottle and that day may never come.  Working closely with GI they will decide when the time is right. In order for him to do so, he'll need to first be able to eat again in his stomach through his gtube and be able to sit up independently.  This will help with his reflux and gravity will help keep the food down!  We have a follow up appointment with GI in four months to check in again and see if he is ready.  Hopefully then we can finally try to feed him by mouth.  The last bottle Cohen had he was about 2 weeks old :(  Eating for Cohen will be a long waiting game and there is a chance he may even skip the bottle stage and go right to purees.  There is a common struggle among children with 22Q and that is related to feeding difficulties.  Whether the child has a cleft lip/palate, swallowing issues, breathing problems related to heart problems....it is a common struggle that is a long battle they will eventually overcome but it could take years !

Today we went to two more follow up appointments: Urology and Cardiology.  Urology went well and the fluid that was shown in Cohen's kidneys from our 20 week ultrasound with him is continuing to clear up and is very minimal now.  He is scheduled to finally get circumcised as well in June, which is rather exciting for Ryan :)

Cohen's cardiologist Dr. Randolph has been by our side since Cohen was only hours old.  Also Isla's cardiologist (don't worry she only has a small heart murmur that has been healing on it's own quite nicely), he has been the constant doctor in Cohen's life.  He was able to weigh in on the changes in his breathing over the months in the hospital for the new doctors Cohen would see, what was baseline for Cohen, and has been very supportive of and sometimes even a shoulder to cry on when times were tough. He was impressed with Cohen's last echo from the hospital so the plan is to repeat one every few months and to monitor his hole to hopefully watch it close on its own.   "I think he is finally over that hump" he said today which made me smile ear to ear.  Hearing a professional say that only validates the way we have been feeling at home.

Also asking a rather difficult question today I received a rather disappointing answer.  Cohen won't be flying anytime soon!  I have been unable to travel home now for over 10 months.  Being from California, I had visited there the previous July while pregnant with Cohen but because I was pregnant and then he was born and we have spent our time in the hospital, I have been unable to go back home to visit friends and family and show off the little guy.  I am so homesick it is unreal.  Some friends and family have been able to fly out to visit us and Cohen (usually while in the hospital), but it's never the same as flying back to California.  Never being able to see everyone in the same place at the same time is something that makes me cry just thinking about.  It was my mom's birthday today and over the weekend everyone got together (cousins, grandparents, everyone except for me and my family) to celebrate her special day with her.  My mom was able to come visit and finally see Cohen in our home and not the hospital.  She spent a week here and when she left it made me miss home even more.  
As for returning to California we may need to get creative in our ways we travel for the meantime, because his cardiologist doesn't feel comfortable having him travel anywhere in a plane until he is stronger and bigger.  I'll be finally traveling out with Isla in June for my friend's bachelorette party and again in August for her wedding but we will be leaving the boys behind.  :(

As for visitors...anyone who wants to come visit us the door is always open and we have an extra bed :)

We'll leave you with a video of Cohen from today.  His newest trick....starting to laugh!
video

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