Monday, March 23, 2009

Adventures in Preemie Outings #7: Our first meeting of the minds

Friday was our first evaluation with the Mt. Washington Feeding Clinic. It turns out that since the boys aren't old enough for the actual clinic they are just being seen by the Speech and Occupational therapists. We got lost getting there and were so late that they were only able to evaluate Cameron so they will hopefully call me very soon with the next date and time to evaluate Evan. Based on what they saw for Cameron and what I was able to tell them about Evan we know that this will be a long road, that we will definitely and very sadly be skipping the bottle stage of their babyhood, and that both boys, especially Evan have some kind of sensory disorder which has a very slow treatment process based on how much they can tolerate.

Ultimately they goal of working with this hospital is to help the boys learn to eat as much as possible by mouth so that once they grow out of the reflux and can tolerate food in the belly we can start the process of removing the GJ tube to a G tube and then remove the tube all together. An addition to our therapy work with this group is to work on their sensory disorder once we know the extent of the overstimulation issues they have after further evaluation. Both boys, but especially Evan, have issues with very loud noises and do not like it when people touch their hands.

It was exhausting and Cameron wouldn't let the ladies do much with him during the evaluation because we will have to help him and his brother get over their stranger danger anxiety. Right now we think we will be meeting for one hour sessions once a week at the hospital. Both boys sessions will be at the same time in two adjoining rooms. One baby will work with the Speech therapist for 30 min while the other will be with the Occupational therapist for 30 min and then they will swap. Me and Granny Cathy will be running back and forth between the two babies the whole time for consolation and reassurance. This is going to be a long sloooooww process. It will be very rough in the beginning.

This weekend was so beautiful and there were so many opportunities to get out and start re-making our introduction to the world that we threw caution to the wind and went a-callin' on some folks. I mean why not, it's the end of RSV season this month right? Now that we'll be going to a hospital with other kids we will be exposed to the germs anyway. At least if we are going out we can do it on our own terms and chose where we go and who we see.

Our first visit was to Scott and Melissa to see their rockin' cool brand new house. It was moving in day for them and since Daddy was already there helping we dropped in to meet the moving crew (extended family and friends). There were about ten people there and after the initial shock and meltdown at having so many grownup people not dressed in white coats and scrubs staring at them the boys finally warmed up and let people talk to them. Evan, who has the worst stranger danger of the two babies, even let Melissa hold him for a bit. Cameron was particularly fond of poking his finger in the new carpet. From the looks on Melissa's and her mom's faces the baby fever is ON!

After a nap in the car the boys woke up to find them selves visiting Auntie A to try and cheer her up while she's on bed rest. Evan really enjoyed his time rolling around on her floor, chatting up a storm. And Cameron was most interested in making smiley faces at Auntie A and holding on to the edge of her couch. And both boys really loved how Uncle J and Little cousin L made faces and rocked them in their car seats. The boys have never been around another toddler and Little L, who's almost 4 years old, had just come back from a birthday party and was in rare form. Surprisingly Cameron and Evan didn't mind at all and were very intrigued every time she ran past them. It was a most excellent experience for the boys.

We drove home and Mommy got to give the boys their meds (and no one threw up!!) and baths and put them to bed all by her self! Woohoo! That is exhausting.

Sunday we went to the mall to hunt for snap up sleeper pajamas in 12mos and older. They don't really make them in those sizes often and are very difficult to find but we did have some success. There were plenty of comments and stares at our double long stroller and the typical "Are they twins?" question. (Um, no, don't know whatever gave you that idea.) During our outing we made what will now become a required visit to Redneck Wonderland (aka Bass Pro Shop) to visit the giant fish tank, rock climbing wall and waterfall. The boys really loved it and the bathroom is perfect for a double stroller. While we were doing our customary pre-drive home change of diapers an employee oohed and aaahed over Evan and proceed to tell me all the lovely details about her boyfriend's sister who's addicted to percoscets and just had a baby prematurely the day before and that the baby is addicted to it too, and yadda yadda yadda... I had to stop listening at that point and thankfully Evan took Mommy's cue and decided that screaming at the top of his lungs would be fun right then. She went on her merry oblivious way.

It was overall a very pleasant change for us to get out and see people we love and care about, and all on a very pleasant sunny weekend. Thanks to Scott, Melissa and all the gang for entertaining our little monsters and a big hug and kiss to Auntie A, Uncle J, and Little L for having us over for the afternoon.


ivory and jamie said...

Yay!! I'm so glad you guys got to get out and about! I hope it starts becoming more normal for everyone. And seriously, those boys just melt my hearts... ack, those eyes!

Valerie said...

we can't wait for the boys to visit auntie v & uncle m when the weather gets warm! can you say kiddie pool?!
I can't wait to see their reactions to cousin "he-who-has-yet-to-be-named" since he'll be smaller than the boys!

Claire Green said...

Thank you so much for your support! I am sure I will be emailing you for pointers!

Annie said...

Yay! We had a great time seeing you guys too! I thought it was funny how Lila, after seeing the boys, went off to her play room to bring out two of her dolls (like twins) to show us. Let's do it again soon!

Annie and Jason said...

Do you get my emails?
What is a ferrell bag? We've been using a uresil bag or a diaper to get the fluid out of his stomach because he vomits it all up otherwise and we add pedialyte to his formula.
ugh...this all sucks so much...

Jennifer said...

You are doing such a good job, mommy! The stuff you go through, uh, I think of you when I'm going through my stuff! I just saw that you have a link to Superhands Kids- thank you so much!

Laura said...

awww your little guys are TOO cute!!

funny that you have a cameron too! i'm laura and i'm naming my son cameron too! :)