I'm Proud To Be a Pathfinder!

Path.find.er (n) :
1. One that discovers a new course or way, especially through or into unexplored regions.
2. One of a group of paratroopers who land ahead of a main force in order to mark the drop zone.

I have completed training and am now a Pathfinder for cleftAdvocate. I am very excited and am looking forward to making a difference in the Colorado Springs community. Right now I am trying to set up meetings with Early Intervention and Tricare case mangers(our insurance company) to educate and provide materials to professionals that interact with parents of cleft effected children. I eventually hope to be able to meet with the nursing staff at all the major birthing hospitals - one step at a time though.

I'm very excited and proud to be a part of this important volunteer program!

We Have a Surgery Date!

November 14th will be Wyatt's palate repair. I am so nervous and anxious and scared. I am dreading the post-op. Wyatt will have to wear arm braces for 3 weeks so that he doesn't put his hands in in mouth. He even has to sleep with them on. We have to feed him with a special rubber tubing - no bottles etc for the three weeks as well. I feel bad putting him through the pain even though I know it has to be done.

I am looking forward to it all being over and done with. Wyatt did not gain very much weight this month and has fallen off the percentile charts. His pediatrician wasn't too worried though. He said its typical for kids Wyatt's age to lose weight because they start having an opinion on what they want to eat - plus the teething.

We're going to the feeding clinic next week and we've been approved for speech therapy in the home twice a month. Then after surgery we'll start having weekly sessions. I feel like we are almost at the climax of our journey and then after surgery it will all be down hill (in a good way).

Wyatt's ear tube surgery went well. I liked the hospital and the staff and how they handled everything. It was a lond day though. Wyatt has to be checked in at 5:30am and his surgery was at 7:30am. He woke up cranky after surgery, but was back to normal after his nap.

Now You See Him - Now You Don't

Punk Rocker

People want to accuse me of making Wyatt's hair look crazy - well here ya go!

Top Four Teeth

Look at those toofers! Look at the hair! We get comments everywhere we go - people think that I do it intentionally - the truth is that Wyatt's hair has a mind of its own.

Deer in the Backyard

We have herd of deer that come to visit most weekends. They love to sit in our nextdoor neighbor's backyard and rest in between meals.

Teething

Wyatt's top four teeth are breaking through. He's still sleeping through the night - he's just a little cranky and wants to be held. Here's a pic showing his two bottom "toofers".

Appointment Dates

Surgeon (get palate surgery date): Aug 15
Ear tube surgery: Aug 22
Pediatrician weight check: Aug 25
Feeding Clinic: Aug 29
Genetics (meet our new geneticist - the one we liked retired): Sept 8

Another Bath Picture

Here's another bath pic. We got him this little inflatable bath that goes in the "big" bath to transition him over. He's so small and so active - so we can't keep him in the infant tub and we can't put him in the big tub yet.

X-rays Came Back Normal!

The genetics councelor called to tell me that the radiologist read the x-rays and felt Wyatt's bones look normal. I started balling. I was so relieved. She said that the geneticist still had to accept or reject the radiologist's opinion before we could really celebrate. She just called back to tell me that geneticist has accepted the opinion and that they do not feel Wyatt has skeletal dysplasia.

This leaves me wondering - what caused Wyatt's cleft and PRS? All three blood tests came back negative for abnormal chromosones, he's not near sighted so they are going to rule out Stickler, his skeleton looks normal so they are going to rule out SED.

IS IT POSSIBLE THAT THIS WAS JUST SOMETHING THAT HAPPEND IN THE WOMB AND HAS NOTHING TO DO WITH GENETICS? COULD WE BE SO LUCKY?

X-Rays, Opthalmologist and ENT appointments

It was a full day on Monday. We left at 9:30am and got home at 6pm.

X-Rays: We had to get the x-rays of Wyatt's skeleton to help the geneticist diagnose him with SED. The techs tried to ask me to leave, however, they didn't know what they were dealing with. I refused to leave the room and told them there wasn't any reason I shouldn't stay in the room as I had been in several radiology labs since Wyatt's birth. I was annoyed that they might have been able to get a less stubborn parent to leave. All parents should have the option to stay with their kids. Anyway, the techs said that he was the best baby they have ever had to deal with. No screaming and just a little bit of fussing when they turned him on his side and held him down. The process took about 30 minutes.


Opthalmologist: We went to see the eye Dr and I liked her more than the last one, however, she still didn't have the best demeanor. I don't mind dealing with her though. She didn't find short sightedness like the first Dr., she didn't find his eyes complately normal like the second Dr, instead - she found astigmatism in one eye. So now we are delaing with 3 different opinions. All the opinions lead to different genetic conclusions. So this is very frustrating. I trust her though - she has a background in genetics and seemed very knowlegable. She said she agreed with the our geneticist - he likely he doesn't have Stickler Syndorme and more likely that he has SED. To me, they are both the same thing with different names - either one would be a nightmare diagnosis.

ENT: The audiologist says Wyatt's hearing seems to fall within the normal range. She said its hard to tell at this age and that we'll have to keep bringing him in for checks. The ear Dr said that one of Wyatt's tubes has fallen out and that he will need to go back into surgery to replace it. I was upset to hear this, but what can you do? Ear tubes fall out as the kids grow.

Medical Update

Early Intervention: Wyatt and I met with our caseworker and filled out all the paperwork. She's young, but has been helpful already. She put me in touch with a lady that teaches baby sign language/play group - we're excited to start classes in mid August. Other than that, we have an interview with someone from the school system and then a full evaluation - its all suppose to take about 45 days to complete.

Genetics: I decided not to go to Denver on Aug 1st. Instead I am going to try to get the x-rays done next Monday when we are at Denver Children's for his eye appointment. We also have a follow up with the new genetics person on Sept 8th.

ENT: Approval finally came through today and I have to make the appointment.