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!
Sites I LOVE
- About Special Kids
- Army of Us
- Baby Be Blessed
- Down Syndrome Footprint
- Down Syndrome of Northern Indiana
- Girl Power 2 Cure
- International Down Syndrome Coalition
- Linda Burkhart – RS Communication
- More With Music
- Rett Girl
- Rett Syndrome Research Trust
- Something Special Magazine
- Teaching Learners with Mulitple Needs
- Kelly on Love & Awareness for DS/ADS
- Elisa Farmer on Love & Awareness for DS/ADS
- How to tell a family their daughter has a Rett Syndrome diagnosis: A message to all doctors and genetic counselors - Army Of Us Blog on Not your typical Down Syndrome “birth day”
- Tommie on Waiting….
- Birthday Boy on Boston Clark Butler Has Arrived!
YAH Boston!!!! SO glad your appointment went well!!!! We hope you have a very merry first Christmas!!!! And we can't wait for you to be off all of your medicine!!!! Love you guys!
he is a champion!!
what a big boy he's growing to be! i'm glad your appt went well. merry christmas to the butler crew!
PRAISE GOD! My heart rehoices with all of you! I have tears in my eyes. Pulmonary hypertension is a word I hate. Have had Owen tested for it and it scared me to death.
LOVE YOU ALL!
Hugs and love,
Kelly and boys