March 23rd - 30th

March 23rd

Was a quiet rainy morning which was spent lounging around. Me and Trevor took off to the mall for the afternoon and ran some errands. I finally dropped off my wedding ring to be resized.

March 24th

We had a morning appointment in Orlando with Dr. Nykanen, Trevor's cardiologist. He was pleased with how everything was going and his O2 sats which were 92 (83 prior to surgery). He took him down to only the morning dose of Lasix and Enalapril! **So happy!!** We were changing sheets pretty much daily and up to 4 diapers and outfits at night because of the Lasix. Trevor now sleeps even better thru the night!! After 30 days we can stop Lasix all together as long as we don't notice any swelling. We followup in 90 days and he will determine whether or not we will stop Enalapril at that time.

After this appointment we had an afternoon appointment in Orlando with the Helmet Clinic. We got a call stating they were going to do it Pro Bono! Insurance does not cover it do it being an "elective" procedure. Because Trevor had such a rough start and spent so much time in the hospital, they knew that the flatness of his head was not from lack of care or neglect but due to being intubated and in the hospital bed for so long. We are very grateful for everything they are doing!

They took the mold for his helmet, which Trevor hated and it should be ready in 2 weeks.

Me and Trevor went to the mall after we got home to have his picture taken with the Easter Bunny. I will have to post the picture after I have a chance to scan it. He was sleeping when I handed him over to the Easter Bunny and when he woke up and realized I wasn't holding him anymore, he looked up saw the Easter Bunny and then started crying. The picture looks like he is smiling but he has his hand in his mouth.

We had some deliveries (medical supplies) and Trevor played in the boxes.

**VIDEO**

Trevor has started belly laughing and below is a video. I was blowing at him making a "Poof" sound and he thought it was funny.




March 25th - 30th

Was a quiet week. Worked on the house etc.

March 16th - 22nd

This week was a busy week! And it's now a perfect rainy Monday to lounge around and catch up with myself.

Monday March 16th

Me and my Mom spent the day at the new house painting. We finished the guest bathroom and the master bathroom. The colors that were previously there matched the colors we had in Vero so we were able to just touch it up and it looks brand new.

Tuesday March 17th **Trevor's 1st St. Patty's Day**

We had an appointment scheduled at 9:30 am with Dr. Ajayi for Trevor's Synagis injection. His office is in Viera which is about 30-45 minutes north of here. We arrived at the office at 9:00 am and the door was locked. We stood around and at 9:30 am I finally called the office and they said "We open the door when we see someone at it"... so I went back to the door. No one was in there. I called back and the lady said "I'm standing outside and I don't see you".

Now we have been going to this doctor once a month since October so I knew we were in the right place. They put me on hold and looked up Trevor's name. They had him scheduled in Winter Park which is 90 minutes from home! I guess Dr. Ajayi in only in Viera on Thursdays... so... we went back home.

We had another appointment scheduled at 3:30 pm in Orlando with Dr. Figueroa, Trevor's GI doctor. We hung out at home for a little while before having to leave for that trip. Trevor was laying on the floor in the living room watching a movie. I was cleaning up his room and I heard him start crying. I went out and he was laying on his stomach! He rolled over for the first time! He hates laying on his belly because of his G-tube, but while reaching for a toy he rolled himself over.

We headed out for our appointment and arrived an hour early. We got in right away but then sat in the room until our appointment time. They decreased his feeds during the day (time and volume) and increased his feed over night. So instead of 90 minutes on, 90 minutes off the pump, he is on for 70 minutes and off 110 minutes. The 20 minutes really makes a difference.

Trevor weighed 13 lbs 7 oz. They also increased the concentration of his formula as they were unhappy with his weight gain.

When we got home we celebrated Trevor's 1st St. Patty's Day with corned beef and cabbage and Mommy had some Guinness :)

Trevor thought the silly headbands were so funny. He kept looking at them and pulling it off of my head. When he would try to chew on it, it would tickle his nose and he would throw it.

Mommy and Trevor

We put the Headband on Grandma's head so he would look at her.

"Grandpa! What is growing out of your head!?"

"I don't know who these people are!"

Outfit from Aunt Ashley

He is getting so big!

Wednesday March 18th

I had an appointment at 9:00 am with Early Steps. This is a State funded program that assists with underdeveloped children. They work with children who are 25% or more underdeveloped for their age. With Trevor's diagnosis, he is automatically approved for this program. I met with the care coordinator and went over all of his medical history and then had to fill out forms answering whether or not he can do this or do that.

On April 2nd, we will have Trevor's 1st evaluation. They will have a Physical Therapist, Speech Therapist and possibly 2 others on site to evaluate Trevor. I'm worried about it as it will be held in their facility with them all standing around. Trevor is best in his own environment and I know he is going to be looking around at everyone and not being his normal self. The physical therapist and speech therapist will more then likely be working with us, the other 2 will be there to determine if he needs their help too.

Thursday March 19th (Mom's Birthday)

Let's try this again... we went back to Viera at 9:00 am for Trevor's RSV Synagis injection. And guess what?.. they were there this time. He got his injection and we were on our way back home. Usually this would be his last injection for 3 months as the RSV season ends 4/1 but with his condition they want to do one more as they think Insurance will cover it. Each injection is over $3,000! Ack!

Me and my Mom went to the new house after and painted Trevor's room and primed the guest bedroom.

We then celebrated my Mom's birthday. Trevor was in a rare mood and just did not want his picture taken. Trevor made my mom a flower pot with his footprints to put in her garden.

"Happy Birthday!"



Helping her blow out the candles.

I love this one!



Friday March 20th

Back to Orlando we go! When Trevor was in the hospital the 1st time, he was there for 10 weeks. He favors one side of his head and had developed a flat side. The doctor's call the turning of the head Torticollis and the flat side Deformational Plagiocephaly. We had a consult with a Neurosurgeon in Orlando. She said we could try reshaping his head by positioning him on his tummy or side more. Trevor loves to lay on his side but refuses to lay on his tummy. We bought a Boppy pillow to try and raise him off of his G-tube which he will lay on for a minute and then freak out.


The doctor wanted to have him wear the helmet http://www.orthomerica.com/ for 3 months to reshape his head. The only thing is insurance doesn't cover it as it is considered an elective procedure. We told them we would get back to them about it.


Saturday March 21st


Me and Jay spent the day emptying the storage units. We were able to empty 1 unit completely. The 2nd unit has only our bikes and Jay's toolbox left to get.

I spent the rest of the day putting boxes in the right rooms and going thru everything for a Garage sale, which hopefully we can have this coming weekend!


Sunday March 22nd

We got up and me and Trevor went with Jay to the pool store for him to get more chemicals. I then worked more on unpacking while Jay did yard work and worked on "his" room. I left at about 5:00 as it was time for Trevor to eat and I didn't have any more formula there. Me and Trevor watched a movie and went to bed early.


In the car at the pool store. Daddy got into the stickers




I'm hoping this week will be a lot less chaotic. And I think it will be. We only have one appointment this week, Tuesday in Orlando with the cardiologist.

March 12 - 15

March 12th (continuation)

At our appointment with the Pediatrician, she wanted us to start putting Trevor in his highchair and letting him taste stage 1 baby food and cereal. She wants him to be used to having something in his mouth and associate his highchair with feeding time, so that when the GI doctors finally "OK" food by mouth he will be already use to it.

I had a jar of Pears in the closet so I started with that. We have already had him in his highchair before. He likes to sit up high so he can look around and see whats going on. I usually put him in it when I am working in the kitchen. He loved the pears and actually swallowed it without choking. We only gave him little bits at a time just to see how he would react.

"Mommy? What are you doing?"

"Mmmm... that was tasty"

"Ok... give me more"

"No Mommy. This is how you do it"

"He did really well."

March 13th

Trevor's Great Grandma and Grandpa Glunt have been in Sanibel Island for the week (west coast of Florida). On their way back to Ohio they stopped by with good friends Jane and Don. This was Trevor's first visit with them and it took him a little getting used to having so many people around him. After visiting at the house we all went out to Cracker Barrel for dinner. Trevor slept most of the night and woke up as we were getting ready to leave.

Waiting for Great Grandma and Grandpa

Checking Great Grandma over.. not so sure
Trevor and Great Grandpa

4 Generations

Me, Trevor, Jane, Don and Ashley

Family

Sleeping at Dinner.. It was so hot in there, that is why he is so red

Great Grandpa, Mommy and Trevor

Mother and Son

March 14th

Saturday was my Grandma's birthday. They planned to head out for Ohio early so we met them for breakfast at the Denny's next door to their hotel. Trevor was in a better mood and actually handed out some smiles for everyone. He is always so content and was so good at breakfast. He is always too busy checking everything out to get upset.

Trevor and Don playing

Saying bye to Great Grandma
Family

When we got home from breakfast, Jay attempted to feed Trevor again. After the pears the other day, I attempted with Bananas and oatmeal. He didn't like either. I mixed the oatmeal with the pears and he loved it.

I mixed the oatmeal with sweet potato's and Trevor gave Jay a hard time but he did eat some. Jay kept tricking him by giving him a toy (which he would put in his mouth) and Jay would sneak in the food.

I had to take pictures from around the corner because he wasn't paying attention to Jay.
Sneak attack

March 15th

We spent the 1st part of the day at the new house. Jay ran wire for fans and put up the fan in our room. I cleaned part of the kitchen (needed a chair to stand on so quit) and 1/2 the guest bathroom floor. With all the chemicals, I quit to take Trevor home as I was feeling dizzy and he was getting fussy. He was on the other side of the house so he probably didn't feel the effect, probably just bored, but I will finish the cleaning when I don't have him.

Ashley came down, as it was my Dad's birthday. It was such a nice day. 84 degrees! Jay and Trevor hung out on the hammock.

Swinging

Father and Son

Family

We grilled out and played some horseshoes. Daddy pulled Trevor around in the wagon, until he broke it. He went to push him backwards, hit a patch of grass, and snapped the handle off. There goes Trevor's 1st driving lesson.

**VIDEO**

Aunt Ashley and Trevor watching Mommy and Daddy play horseshoes

Giving Daddy that look

At breakfast Saturday, Grandma asked if me and my sister would be doing cartwheels down to the water in April at Treasure Island, as we did when we were little. I hadn't done a cartwheel in years so...

... I did one...

...Which started my Dad...

Whoops!

And Ashley....

Nope

**VIDEO**

Trying a Roundolf

Trevor didn't know what to make of all of this...

He stole the glasses right off of his face

The shuttle was scheduled to go off at 7:43 pm. So we all hung out before eating dinner.

Waiting for the shuttle.

Trevor's 1st Shuttle Launch

Shuttle Discovery

Beautiful day... Clear launch.

Trevor and Aunt Ashley

After the last surgery, Trevor stopped talking like he used to. But now he has started again.

**VIDEO**

After dinner we celebrated Dad's/Grandpa's Birthday.

Trevor giving Grandpa his gift

New mousepad for work

Blowing out the Candles

Trevor going for a ride... Pulling Aunt Ashley's hair