Crainialfacial Annual Appt

Today was Tripp's annual appointment at the Crainialfacial Clinic and it went surprisingly well. I was nervous about how he would respond to 8 teams of dr's coming in to look at him and check his mouth out but he handled it like a rockstar! He fell asleep about 30 minutes after we got there, so he slept through 3 of the teams. And only the dentist looked in his mouth this time so I was nervous for nothing. :)  All of the dr's were very pleased with his progress. Developmentally for speech, he is at 12-14mth level which is right on track for his adjusted age.

Something interesting we found out is the Genetecist we saw back in February stated in his assessment that he would not classify Tripp as having VACTERL or VATER. The reason being that these associations typically involve renal and anal abnormalities and Tripp has neither of those! He also says the cause for Tripp's problems are unknown. So whatever the reason, God blessed us with unique fearless stubborn little boy who we wouldn't trade for the world!! :)

Fall Family Fun Day 2011

This past Saturday, we took Tripp to Roger's Farm in Alachua, FL.. Every Fall they set up a pumpkin match with a mini-carnival and corn mazes. With winter just around the corner, this is probably one of last outings together as a family until the spring. Enjoy the pictures :)

The boy hates sitting on grass, dirt and apparently hay..

He LOVED the pony ride!!

He was tired of pictures at this point..lol

August 2nd

Check out our ticker there to the right.. do you see it?  Adjusted age: 1 year, 2 days!  So I'm a little late, but Tuesday was my actual due date and the day Tripp should have at least been born near.  Surprisingly, this date didn't upset me this year.  I think I had more mixed feeling on his birthday than I did my due date.  Plus, with everything going on I haven't had much time to think about it. God takes care of us, even when we don't realize it. I'm so thankful for this precious miracle He blessed us with.  And my heart aches for those precious angels we met in the NICU that didn't make it home.. and also those I've never actually met, but know their stories.  Whenever I think about them, I hold Tripp a little longer and closer and say a quick prayer for those Momma's who will never get to have that.  I can't imagine the hole that must leave in your heart.  I don't know how I got to that  from where this post started, but its just something I wanted to say.  

He's a picture of our big boy!

Playing in cousin Kolby's Fire Truck :)

Time flies when you're having fun!

Tripp has been doing lots of new things lately! Its been really exciting! 

• He is eating more table foods.. He LOVES Nilla Wafers!
• Making a little progress with sippy cups!
• He started sitting up on his own last Thursday and started really crawling on Sunday. Not his goofy army crawl, but real honest to goodness crawling!!
• Playing peek-a-boo, covering his face himself!

I know I said "lots" and there's only 4 things on the list, but in the preemie world 4 is alot especially when there are major milestones involved.  :o)

We've also been really busy pretty much every weekend.. My dad visited the weekend before last, last weekend we made a day trip up to Savannah for our niece, Cloie's 1st birthday (she's Tripp's Birthday buddy, I'll explain), Monday he had minor outpatient surgery to close his g-tube hole, and this weekend we have the NICU Reunion at Shands UF in the afternoon, then a friend's wedding that evening.

The trip to Savannah went really well.. It was great to see Josh's brother and his family.  Although Tripp wasn't acting like himself that day. Normally when he's around kids, he wants to get down to be in the middle of everything and check the kids out.  But Saturday, he was being really clingy and anti-social. Only thing I could figure is his teeth must hsve been bothering him.  

The surgery on Monday went great!  He had no problems while under general anesthesia and his pain has been pretty minimal.  Dr. Islam and Dr. Shaw did an amazing job on the incision! We think its going to look much better once it heals than it would've prior to surgery. Everything, happens for a reason, right?!

I'm so stinkin' excited for our NICU's Reunion on Saturday.  I cannot wait to see the nurses and moms we met during our stay and also those whom either came before or after us.  Once we got home, I honestly did not EVER want to go back.  But now that I've gotten over the roller coaster ride, I miss our family at our home away from home terribly!  The nurses and doctors were so amazing and patient with us! At one point, I think we were one of the noisiest families in there.. we loved cutting up with the nurses and having a good laugh.  That's one thing I'm proud of us for.  We were able to see the light at the end of our tunnel and make jokes to keep our moods light.   Not that we didn't have down days, b/c there were plenty of those too.  But I feel like we tried to keep ourselves positive, especially when were there with Tripp.  No matter what our mood was though, the nurses and dr's were always empathetic, compassionate and understanding.  

Ok, so about Cloie being Tripp's Birthday buddy.  There are two pairs of cousins whose birthdays are just a few weeks apart in the Johnson family.  The oldest two, Jacob Jr and Skyler were born a month apart, they're 4 years old.  The middle child, Joanna, is all by herself..and she's 3.  Then Cloie and Tripp were supposed to be a month apart.  Tripp decided he wanted to be the oldest I guess, because he came 6 weeks before her instead of 4 weeks after her.  But she's made up for it, because she has the advantage since she baked longer and has 2 older siblings.. that li'l booger is walking all over the place.. and has the funniest expressions.. She'll give you the "F-you" face and not think twice about it.   I can't wait to see them get bigger and play together. I think these two are going to give the older kids a run for their money! ;o)

Tub Time :o)

I realized recently that I haven't been taking many pictures of Tripp unless its on my iphone. So tonight I pulled out the actual camera. :o)

Tripp scares Mimi :(

This deserved its very own blog.  On Wednesday afternoon, I got an urgent call from Josh at work that Tripp was being taken the hospital by ambulance, he had turned blue at his Mom's (Mimi's) house. I grabbed my stuff and ran out the door.  On my way to Lake Shore, I called Josh back to find out what exactly was going on. He said his brother called him saying Tripp was blue and all he could hear was his Mom panicking in the backgroud. Josh told them to call 911, he was on his way. Once he got there, Tripp looked ok, and he cried when he picked him up. A minute or so later, the ambulance pulled up and took Tripp from him. Luckily, Josh knew one of the EMT's there.. they told Josh to head to Lake Shore and they would head that way once they got Tripp settled.  I got there a few minutes after Josh, but the ambulance wasn't there yet.  We walked back outside to look for the ambulance and they were unloading the stretcher. Tripp was sitting in one of the EMT's laps smiling away and taking a breathing treatment like a champ.  I'm not sure if he remembered her or not, but she was one of the EMT's that took us to Shands UF when he had RSV. We still aren't real sure what happened but this is the rundown..  He woke up that morning with a stuffy nose and a dry cough.  Josh mentioned it to his Mom  to kinda keep an eye on him.  She had to give him his albuterol inhaler later that morning because he was sounding congested. That afternoon, she had to set him down for couple of minutes and put him in the walker.  When she came back he was blue, so she picked him up immediately and I'm not real sure what happened next other than he got sick and threw up and then got very lethargic.. and then Josh got there..  The only thing we can figure is he must've gotten choked up on a mucus plug.  When we got to go back to see him at the hospital he was very wheezy and croupy sounding. We had our worse experience ever at Lake Shore.  The nurses were good and kept the breathing treatments coming and ordered chest x-rays, but we didn't see a doctor for 3 hours!!! And prior to that his nurse came in to talk to us about getting our discharge papers ready. We told them very quickly but politely that we weren't going any where until we had seen a dr.    The dr never listened to our child with his stethoscope, never checked his ears or his nose.  He did his evaluation from 3 feet away and just asked us to take Tripp's shirt off to see if he was retracting.  So he had them give him another breathing treatment and a dose of an oral steroid.  He didn't send him home with any meds and told us to follow up with his pediatrician in 2-3 days. I said, we'll be seeing her tomorrow! All in all, Tripp is ok, but I think he nearly caused his Mimi to have a heartattack! :o(  I feel terrible because he scared her so badly! But so thankful she handled things the way she did!!  She has been his primary babysitter since he came home and has made our going back to work so much easier! Tripp loves his Mimi and Pop Pop <3  And of course his Poppa, GiGi and GP!

Also, our pediatrician Stacy is a rockstar! Most times if we call her with a concern or because Tripp is sick, her office does their best to get us in to see her! Tripp loves his Aunt Stacy and Aunt Gina! Poor kid feels like their office and the hospital is his home away from home! LOL 

So after that adventure, we had a pretty low key weekend! The 3 of us did absolutely NOTHING and it was AMAZING!  Even tho we had to cancel our even more amazing plans to go visit some dear friends over in Ft. Walton beach!  :(   But Tripp and I had a nice relaxing weekend spent in our rocking chair because neither one of us felt all that great over the weekend.. and Daddy got to play videogames :) 

Momma can't sleep..

Well, I said I would update more often.. turns outs that's harder than it sounds.  Since Tripp has been home I get an hour or two of  "adult" time and its seems like the blog falls to the bottom of the totem pole.. I'm sorry for that!  Tonight you're getting an update because I'm up way past my bedtime due to watching a stupid scary movie with the hubby right before bed. So now its me, the laptop and the Cosby's hanging out until I finally feel peaceful enough to attempt to go to sleep. Hopefully with NO nightmares!  Enough about me, I know you're here for Tripp :o)

Our amazing little guy is 13 months old now! He's 16lbs 7oz, 28in long, and his big ole noggin is 18in round.  Its hard to believe that a whole year has gone by.  Some days I don't feel like I have a one year old and I think part of that is because he hasn't been home for an entire year yet.  While I'm thankful his time home is now longer than his time in the NICU, I think once the year anniversary of his coming home floats around on October 15th, that it will finally sink in that we're parents to a toddler. Even though he technically isn't toddling yet, he's rolling everywhere! So for now you could say we're parents to a roller. :o) Which is pretty entertaining to watch. He'll roll to whatever it is he wants.. if he rolls into a wall, couch or chair, he'll use is feet to push and pivot himself so that he can roll the other direction.  He can also sit up by himself now as long as you sit him up.  We're hoping he'll be able to figure out how to get there by himself soon and then maybe start crawling. I kinda have sneaky suspicion that he might just go straight to walking. But we'll see, I know he'll do it when he's ready!  Other big news is he had his lip surgery on April 11th and got his mic-key g-tube out on June 9th!! The lip surgery went well, but it was hard to see him afterwards in so much pain and confusion. Poor guy just couldn't understand why it hurt so bad to drink from his bottle when the night before everything was just fine.  Luckily, on the 2nd day we figured out a pain med combo that worked and he started drinking again and within a few days his pain was pretty minimal.  But his frustration was not. He had to wear arm braces for the first 2 weeks to keep his hands away from his mouth. We thought this might break his thumbsucking habit but a few days later he remembered why his thumb was his BFF!  Have I mentioned how smart our little guy is?! He figured out on the third day how to get these pesky are braces off.  He became a real Houdini. After much fighting and stressing all 3 of us out, the braces said bye-bye a couple of days before the 2 week mark.  The g-tube removal was a piece of cake! All they had to do was deflate the balloon which held it in and pull it out. Easy peasy!  It's still healing but if it doesn't completely close soon on its own, they may have to put a couple of stitches in to help it out.  We've been hearing a lot of "da da dad dad da da" lately and the occasional "mmmm ma ma momma". He seems to like to sing the da's more than the ma's. He saves the ma's for special occasions like when he's peeved because his bottle or breakfast isn't ready yet.. then I get a perfectly clear "MOMMA". His little personality has stayed the same since he learned to show it! And food better be ready when he's used to getting it at feeding times!  Thats pretty much all of our progresses going on right now.. we're so proud of him and how he continues to learn and grow! Its so exciting to see him doing all of these things! I can't wait to take him to the NICU reunion in August and see all of the nurses and doctors! :o)

10mths old - Photo by Joshua Johnson

Before

After

                                                             

Tripp's Birthday Cake made by Momma :)

1st time swimming! He wasn't too sure about it at first..

..but then he decided he liked it :)

Been a while...

I haven't updated since before Tripp came home.. sorry about that for those of you who check for updates on him! Hopefully, you took the notion that "no news is good news" .. but lots of good things are happening!:o)    

Tripp came home on October 15th and its been all about him since that day with the weekly Dr's visits here and there.  When he came home his weight was around 7 1/2lbs and he's now almost 13 1/2lbs.. he's finally starting to catch up with other babies close to his age!  After he came home we had 3 overnight stays at the hospital for esophageal dilation, which is where they go down his throat and stretch the scar tissue from his surgery to open his esophagus a little wider.  He had his last one in December and so far has been doing well, even taking some solids now.  But he'll eventually have to have another series of dilations once he starts to take table food.  We also spent a week in the hospital at the end of January because he got RSV with pneumonia.  Luckily, it didn't get too terribly bad.  He was on oxygen for a few days and was able to wean off it as the virus ran its course.  Thankfully, he's been getting the synagis shots monthly.. I think that helped it to not be as severe as it could've been.  The ROP in his eyes totally cleared up around November but he had to start wearing glasses due to being farsighted.  As strong as the lenses are you would think the poor boy is blind! lol  But after he started wearing them, he began reaching and grabbing for more things in his line of sight!

Developmentally, he's doing amazing!  The only thing he's delayed on is sitting up by himself.  This is mainly due to the fact that he still has his mickey g-tube in his belly, so he HATES tummy time and will immediately roll to his back if you put him on his tummy.  But therapy started to come working with him 3 weeks ago and we are trying some other exercises to strengthen his core muscles so that he can sit by himself.  He's wanting to talk so badly its killing him.  He'll look at you while you're talking and try to mimic what you are doing with your mouth but hasn't quite figured out how to make the different sounds yet, but he will jabber your head off when he wants to!  

His next surgery is on April 12th.. he's getting his incomplete cleft lip  fixed and also finally getting circumcised.  Poor boy isn't going to know what happened to him! :o(    I'm excited and nervous about this.. I'm ready for it to be over, but I sure am going to miss his big beautiful smile..  He'll still have a beautiful smile, but it will be different from the one I've been getting each morning when he wakes up for the past 5 months.  But I know its for the best for him!

I'll try to be better about updating in the future!  Thanks for keeping our little miracle man in your thoughts and prayers! We are so blessed to have him.. he has such a happy spirit! I know he's going to do wonderful things in his life as he grows! <3