Evan Michael Slifer
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Evan was born 7 weeks early on January 18th, 2001. I developed pre-eclampsia at 30 wks and was then hospitalized for 3 days prior to my emergency c-section. The pregnancy had gone smoothly up until then and as far as we knew, we'd only be dealing with a premature baby. We were wrong. They rushed him from the Ohio State University Medical Center to Children's Hospital here in Columbus OH (where we live) within the first hour of when he was born. Evan was born with TEF/EA which repaired when he was 13 days old as well as a laryngeal web. Oh and an extra thumb which was removed this year. They could barely intubate him that first day but by the grace of God the doctors were able to do it. Long story short. After 6 wks in the NICU, they did decide to trach him since he was in such distress while breathing on his own. Heliox helped but we knew he couldn't go home on it. It was a hard day but it gave us comfort to see him breathing so easily after it was done. We brought him home on March 9th, 2001 and since then, we've only spent 1 night in the hospital! He's 14 months now, sitting up on his own but we are working with a physical therapist for other gross motor delays. We are working with Dr. Cotton's team in Cincinnati and hope this year to begin the reconstruction surgery. Evan is a healthy, happy, bright little boy and the light of our lives!
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Update January 2003: We can't believe 2002 is over already! What a year it was for our little guy. We were told by Dr. Cotton in April that we could proceed with the reconstruction surgery (LTP) in the summer. We were both scared and excited. August 5th was the big day. He made it thru surgery with flying colors and we were in the hospital for 5 days. He had the stent removed on Sept. 6th and then Dr. Cotton took another look in Oct. and Dec. In between those two scopes, Evan finally was able to tolerate the Passy-Muir; what a wonderful experience it was to hear him laugh and cry! He has a very quiet voice but its music to our ears. We got the news we had been waiting for on Dec. 13th (believe it or not) the airway looks good and we're scheduled for a 48 hour capping trial down in Cincinnati on 1/21/03. Along with all of this, he is now walking (Christmas Eve)!! He also got a Mic-Key button in Sept. and is taking almost all his nourishment by mouth. We are working with the feeding team in Cincinnati as he is not eating age appropriate foods-chewing is an issue, but he's trying and he's come a long way as far as what he'll eat. We still go to PT/OT but not as often and he's started weekly speech therapy, so we're kept very busy!!
Update December 2003: May 17th, 2003. We will never, ever forget this day. Evan was finally decannulated! After 2 years, 2 months and 21 days, the trach was gone. The big day took place at Cincinnati Children's - my husband Mike pulled it out - I thought I was going to faint and Evan didn't even blink an eye! This happened at 7 a.m. and of course we were then on the phone calling our families by 7:15!
We did have trouble with his stoma in that it didn't close all the way by itself but Dr. Cotton took care of it on November 14th. Two weeks later there is still a scab but its wonderful not to hear air whistling thru the stoma (I really don't miss cleaning up the secretions that continued to come out!).
Evan started preschool in September at a county run Early Childhood Learning Center. It is a wonderful facility and we are so grateful that it is available to us. His teachers are so warm and loving as are the therapists. He goes 4 days a week for 3 hours each morning and he absolutely loves it. He was very intimidated by the other children when he first started because he was so isolated when he had the trach - he really had not had the chance to socialize but now he's running and playing with all the other kids and he's just having a ball. His teachers say that he's just blossomed since September. Our biggest hurdle right now is speech, but he does see the therapist at school once a week and we still go to private therapy once a week as well. He is very chatty - you just don't understand what he's saying!
Due to damage and scarring to his vocal cords, his voice is a bit breathy and quiet, but he can be loud when he wants to!!
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Update September 2004: Evan has continued to amaze us this year. Wow, where to begin. He continues to attend our local MRDD preschool - actually he's been off this summer and is ready to begin again in the next couple weeks. We're a bit anxious because while we know and love the school itself, he'll now be in an actual preschool class, no longer in the toddler. Last year there were 7 other little ones in his class, all the same age, and now he'll be in a class with up to 18 kids and with ages ranging from 3-6. YIKES!! He's still a bit timid around kids that are bigger than he is, so we're just praying that he adapts quickly. Two big events occurred this summer - one is that we were able to pull out his Mic-Key button. NO MORE TUBES!!! Getting him to take his Prevacid by mouth was our biggest challenge this spring and our little guy rose to the occasion and started taking the Solutabs with no fuss. We couldn't believe it. We got the all clear from his GI in Cincinnati, so on July 2, 2004 we celebrated Independence Day two days early by freeing him from his button!! We also got a good report from Dr. Cotton in regards to his airway - it is still nice and open, two years after his LTP. We'll see him again in December. Then, our next big event took place on August 3rd when we had our semi-annual meeting with the feeding team in Cincinnati. They told us they don't want to see us anymore! I really believe that it was the loss of his trach that helped him along with his eating. He gained 3 lbs from the end of March until we saw the team in August. They were thrilled with his progress as were we. We are still busy with speech therapy - he's talking up a storm but now we're starting to work on his voice quality more than speech and language itself due to his cord damage. We just continue to pray that his voice gets stronger and more audible to those who are not familiar with him.
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He went to hippotherapy this summer and absolutely loved it! We weren't sure how he'd take to it due to his timidness, but by the end of the summer, his confidence just blossomed. The first day they had him on a miniature pony but then the next week and every week after that, they had him on a big, big horse!!
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We were able to attend trach conference in St. Louis in June. What a wonderful experience that was. It was so nice to see other parents from the board as well as see Dr. Cotton, in a setting other than the hospital!!
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