Boston had is follow up with his heart specialist yesterday. Overall, it was a really encouraging visit. The echo showed no signs of pulmonary hypertension so that means the medicine is working. The goal now is to cut back on the meds and see if there are still no signs of the hypertension, as of last night his meds were reduced by half. He also reduced his oxygen from 1/8 of a liter to 1/16. We tried 1/32 but he did not do so well on that. I was happy that we were able to reduce it though! We have our next appointment in three months. So, unfortunately we are on oxygen for at least three more months. He did have a good weight gain though – he is 6 pounds 10 ounces now….wow has my little guy come a long way in three months – 2.3 pounds seems forever ago. I have to laugh when people comment on how little he is….if only they saw his tiny beginning!
I am an ordinary mom with two extraordinary kiddos. My daughter Brooklyn is 11 and has Rett Syndrome and is the first special love of my life. My son Boston is 7 and has Down Syndrome and Autism - he also happened to enter this world 10 weeks early, weighing only 2.3 lbs! I often here the words "You have your hands FULL!" I like to remind people that "you should see my heart!" This blog is a little look into my life as a special mommy (x2) I hope you enjoy your time here!