Joel Taylor
TrachKid Profile
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This is our sweet little angel Joel. He was born April 16, 2002. After an emergency c-section, Joel immediately showed signs of respiratory distress. He was intubated and extubated many times over several weeks before an ENT finally looked at his airway and was able to diagnose him with Paradoxical Vocal Cord Movement due to neurological immaturity. He was trached at 4 weeks and came home 10 days later.
I must say that it is quite strange how your perception changes-- initially the thoughts of Joel having a trach were devastating, but after watching our child struggle to breathe for so long, a trach was definitely a welcomed intervention!!
Life at home with a trach isn’t bad at all. It’s definitely better than traveling back and forth to the NICU every day and being forced to leave our child there every night. At home, we’ve found that being organized and having a routine really helps.
Joel is such a charmer and his smile melts our hearts! He loves his bath and has recently found his hands. He also loves going new places and checking them out from the vantage point of the baby sling that we wear.
Developmentally he’s a little behind, but we’re told that this is due to his small size. At four months old he is only 8 lbs. 4 oz. (His birth weight was 6 lbs. 6 oz.) Weight gain remains our biggest challenge.
Update December 20, 2002: Joel is now 8 months old! Time has really gone by fast! Joel continues to do well with his trach, but things are definitely moving along slowly. He is now 10 lbs 8 oz. and continues to gain an average of 1/2 to 3/4 pounds per month. He was sickness-free until the week of Thanksgiving when big brother John Patrick decided to share RSV. It landed Joel in the hospital for 3 days. We're thankful that it wasn't more serious.
Joel is very social and loves to go out in public (this is more of an issue now that its cold and flu season). He definitely knows how to attract the ladies! We're constantly being stopped and approached by admirers! We're hoping for a quiet day to sneak him to the mall to meet Santa!
Joel is now waving "hi" and trying to talk. More and more sounds sneak out every day. We're working on using the PMV, but he usually just pops it off with a little cough. His favorite thing to do is take off his HME filter and chew on it.
Joel continues to be a little behind developmentally, but this is due to his small size. His cognitive and social skills are right on target for his age. We are so proud of him!
We have several doctor's appointments coming up. We continue to fight the doctor's on placing a feeding tube, as we aren't convinced that his size is a nutrition-issue. We are also being followed by endocrinology and genetics. (our older son has growth issues and was born with laryngomalacia - very similar symptoms to Joel). We will keep everyone posted.
We are so thankful for Aaron's Tracheostomy page. The support and information we receive here is priceless.
Up Date, September 2003: Joel is now 17months old. I don't know where the time has gone! He had a pretty fair first year. Several hospitalizations, but nothing too bad. He has always pulled through quickly!
Developmentally, he has really taken off. He's starting to walk which is very exciting (although, I'm much busier now!) and is starting to say a few words and using some signs too. He can say "Hi, hello, uh-oh, uh-uh (over version of NO) and eat. He is signing more, eat, drink, cat, dog, pig, music, and today he finally signed 'Daddy.' My husband was thrilled of course (although I'm a bit jealous!)
We've finally worked up the nerve to get a second opinion on Joel's airway issues. We're currently working out the funding for Joel to be seen by Dr. Cotton in Cincinnati. My family and I are very hopeful that he will have something more to offer Joel, as his vocal cords are not improving. We're due to go at the end of October, so I'll be sure to leave another update then.
There's everything you would like to know about Joel and the fundraiser we're doing to raise money for this trip to Cincy.
Update, March 2004: On January 25, our dream came true! After Dr. Cotton worked his magic Joel was successfully decannulated - 2 months earlier than expected! Joel capped so beautiful during his capping trial that Dr. Cotton decided to keep us a few extra days and pull the trach! We feel so blessed and overwhelmed. There's been no looking back. While we wouldn't have traded this experience for anything, (all the knowledge and friends we've gained in irreplaceable) we're so thankful that Joel is finally able to be a typical, healthy little boy.
Since decannulation, Joel has really taken off. He's become much more verbal and much more comfortable in social situations (he actually lasted in the church nursery for an entire service!!) His weight gain has improved greatly as well. His last weight check was just over 22lbs.
Thanks for everyone at this site for providing the support and knowledge we've needed for the last 2 years. We couldn't have done it without it!
If anyone going through similar issues would like to contact us please feel free. Our e-mail address is JPsmomee@sc.rr.com.
History
- Blog
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- Member for
- 4 years 19 hours
Location
- Country
- United States
- State/Province
- South Carolina
