I am hoping a little walk back through the events of 2013 will help me see the good experiences outweighing the not so good.
In January we continued visiting the St. Joseph's Feeding and Swallowing Center and Nathan received his orthotics. I was concerned he would have trouble adjusting to wearing them, I did initially but then he got used to them. He was supposed to wear them for 5 years but since the Center stopped accepting his health insurance, when he outgrew them and the orthotics starting hurting that was the end of that.
Then our world was turned upside down when Nathan was admitted into the month long feeding program at St. Joe's. It hurt me as his mother to see him resist and refuse food through a two way mirror. It hurt to see him restrained, although I knew it was for assistance/eating posture.
January 2013 wore me down. I spent hours each day driving, away from Teagan, isolated from the world and separated from my family, knitting anxiously until Nathan's next meal. I grew distant from my best friends and this hurt more than anything. During the weekends off, I didn't even want to leave the house because I had to continue the many structured meals at home. I would fall asleep as early as 7 pm every night. I don't miss January at all however I am grateful for two things: the days I spent stressed out and away from home helped me jump start my weight loss, and for meeting another CF mom at the Feeding and Swallowing Center. At first it was a burden to have two CF kids in the program but it was also nice to have someone who understands to commiserate with.
In February, Nathan graduated the daily feeding program and continued follow up appointments. Keeping up with the feedings became very difficult. I had to make sure I had the right number of ounces of pureed, mashed, and diced food, I needed the car seat and the ipad to play shows as positive reinforcement, and I had Teagan demanding my attention at every feeding. Again I continued to isolate myself at home because it was too difficult to take all that on the road to be with friends.
My one goal of February was to build a snow man with the kids and when it happened, it was the best feeling in the world.
Our February trip to clinic made me feel good, because honestly I was thrilled with the progress Nathan made with eating, before it started going downhill.
March was the month that I decided both kids needed to use the toilet forevermore. I had enough of making progress with Nathan and then losing all that progress with every hospital admission. Potty training boot camp happened and we nixed the pull ups and went straight to underpants. I refused to turn back and today I am glad I tortured myself for those three days.
March was a cold month and Spring couldn't come soon enough. Nathan had his last visit at St. Joe's when we were shown the door when the insurance contract wasn't renewed. I was pissed at the time because I was given no parting advice or recommendations but today I tell myself everything happens for a reason, me spoon feeding my almost 5 year old wasn't really sustainable.
Other than that, it was a relatively uneventful month, thank God. I found ways to keep the kids and myself busy.
April started on the good side, with warmer weather and visits to parks. Teagan began wearing a Hawaiian lei everywhere, it was her signature piece.
It was a good month until we all got sick with colds and...
Nathan was admitted to the hospital with vomiting and lethargy. I tried to make the most of the admission. The toughest part for me is being away from Jay and Teagan, but I wouldn't be anywhere else than with my boy in the hospital.
The month of May came and the hospital admission continued, and we found out Nathan was allergic to tegaderm and cloroprep. He had this reaction with previous admissions but this time was the worst and we finally have it identified and noted in his chart.
We hesitated to send the kids on a planned trip to Florida with my in laws but ultimately decided they very much deserved the vacation as did we.
I utilized the break to catch up on some much needed relaxing and also took on some major projects. With my dad's help, we transformed Nathan's bedroom from this:
We were hoping it would help him breathe cleaner air while he was sleeping and perhaps minimize sickness.
June was another tough month emotionally because we made the last minute decision to graduate Nathan from preschool and enroll him in Kindergarten. This is not what we wanted but it had to happen for him to be evaluated by the school district and to receive services.
I have a photo recap of June here.
I probably had one of my first real reunion with friend's in June when I went strawberry picking. It's a tradition that I couldn't not follow through with.
Nathan started a trial of karate classes and seemed to enjoy it.
July would mark a milestone - my 30th birthday. I decided rather than ask for gifts I would do a fundraiser for the Boomer Esiason Foundation. I didn't know until my birthday that my husband was behind the scenes trying to help raise money in honor of my 30th birthday. Thank you again to all those who contributed and helped me blow my initial goal out of the water - 277% of my initial goal.
Not only that, I was treated to a surprise party after a day at the vineyard with my dad.
It was an amazing surprise to be reunited with friends and family. Thank you to everyone who made the day super special for me. I love you all. Not pictured - my Aunt, cousins, in laws, dad, husband, spouses. I love you all too! I will give the month of July two thumbs up.
We made our annual trip to Myrtle Beach in August and it was perfectly uneventful, nobody fell ill, no visits to the hospital. More photos here and here.
Teagan got her first pair of ballet shoes.
We went to the Jersey Shore for Nathan's first Mauli Ola Surf Experience. No surfing just yet.
Nathan turned 5 and Teagan turned 3, one week apart but two separate months.
September marked the beginning of a new chapter in Nathan's life - Kindergarten and public school.
Nathan fell in love with a pug named Felix.
...and became determined to save money to get his own pug.
We did our annual Halloween photos in October, of course.
We had a joint birthday party for the kids, not very close to their actual birthdays.
November and December soon to come.