August and Back to School

After we returned from our mini vacation to Houston, we tried our best to get back into some semblance of a routine. The kids were going to bed at the same time every night to slowly get them rotated back to a school schedule. Grayson was doing math and reading every day, and I was working with Jackson on writing his name in preparation for pre-k!

Addie saw a neurologist for the first time ever on August 10th. The appointment was suggested by the NICU on her discharge papers but Dr. George had always said we didn't need a neurologist unless she started having seizures (which Thank God so far she hasn't!). But in March when we were realizing she did have a definite CP diagnosis, I had called to get in with a neurologist and it was  5 month wait to get in as a new patient! Holy Cow! So we kept the appointment if for no other reason than to get our foot in the door. I feel like a kid that has abnormal brain anatomy and CP needs a neurologist on their medical team!

I'm happy to report that Dr. K was extremely impressed with Miss Addison's development. He did say that she has some white brain matter damage (which we knew...it's what the fluid and pressure "washed away" but the good news is she doesn't have any grey matter damage. The way it's been explained to me is that the grey matter stores the information and the white matter transfers the information around her brain. In a baby, the brain has time to learn to get information around her brain by going another route. So we feel like this explains a lot about why Miss Addison is doing well. He also said she has partial agenesis of the corpus collosum not complete which was good news. Dr. K said since her hydro was a secondary complication to her arachnoid cyst that it also explains why she's developing so well for a child that has technically severe hydrocephalus.

The best news: He doesn't want to see us back !! We can always go to him if we need him, he said whether it be 4 days or 4 years but he didn't require a follow up! It was a GREAT appointment!!!

She crawled up in her little chair and sat down looking at my notebook.

Miss Addison has a thing for paper... she is her mother's daughter after all and I have a thing for notebooks and pens and anything do to with scrapping or planning! And apparently Addie follows in those footsteps. She always wants my notebooks or my planner. 

And here she's playing with my old planner that I keep in that basket specifically hoping she'll leave my current planner alone!

Addie and Jack in the tub together!

Waiting for her ENT follow up. Ears look good and she passed her first full hearing test! PTL!

Chuy, our chihuahua waits patiently hoping Addie will drop some food or feed him a bite.

Back to school shoe shopping for Mr. Jack!

And a back to school hair cut!

Jack requested Torchy's tacos after his haircut and then ordered a breakfast taco at 5pm! lol

Miss Addison on her 15 month birthday and a pile of laundry (the normal around here) in the background.

Aunt Missy bought Addison the cuuuuuuuuutest pair of sparkly TOMS Mary Janes!

Waiting for Dr. R, her ophthalmologist. The doc feels like her eye is improving and that she's not crossing as often so we have increased patching (which is nearly impossible because Addison rips it off) and are going back in October after we get back from Duke.

FIRST day of FOURTH Grade!!!!! My baby is getting so big!! He is loving fourth grade and his teacher and is kicking butt on his school work. He started meds last April  to help him focus and they are making such a difference. Kicking myself for not getting him on them sooner.

Jackson had pre-k orientation at his school! He was really trying to be a brave boy while I had to go to the parent orientation meeting in a different building.

Look who's walking!!!

Addie all the sudden took off this past weekend. Since her first steps, she's taken a few more steps, always 2 steps, always during PT and then she was done with it. But on Thursday August 9th, she took several steps, more than once for her developmental therapist. I think I counted 7 different times, 2-3 steps each. She did it again on Friday for her OT. On Saturday, we were able to get two steps on film, so it was becoming more of a sure thing that we could get her to walk a few steps. Then on Sunday, the 12th, she walked from the loveseat to the opposite end of the rug. I counted 12 steps. I cried. Sat on the couch with tears streaming down my face. I have always gotten excited at my kids' firsts. But this was something more. Something beyond a milestone. It was amazing! A walking miracle in our house!

Addison has since decided that walking is kinda cool. I'll catch her walking behind the couch when no one is watching so she's no longer doing it for us to clap for her. She's figured out that she likes to move that way. Very similar to how she started crawling on all fours v. commando crawling. I still am trying to get it on video... but I did get a picture of her walking down the hall, like it ain't no thang!!

Her PT arrived on Thursday after this was taken and she nearly cried. We are watching her left leg for weakness. She is locking her left knee some to compensate for the weakness. We may be looking at a brace in the future but for now we are letting her go and watching in awe and wonder! Thank you LORD!

Houston Trip

As we were driving home from Florida, Adam got an email from his boss asking if he could work at another restaurant in Houston for a few days so another general manager could take vacation. Adam emailed back that he'd be glad to as long as he could bring his family with him. So that's how we ended up taking one last little summer getaway to Houston the first weekend in August.

The kids all loaded up and ready to go.

A quick 2.5 hrs which seemed even quicker after our long drive to Florida so fresh in our minds... we arrived! The kids were excited to be in the hotel.

The first night we were there Adam was off so we wanted to do something different. Adam and I have both been avid Food Network watches for a long time. When we were dating we'd both watch Food Network while talking on the phone. lol And we love Diners, Drive Ins and Dives!! I checked to see if any locations were around our hotel and Bob's Taco Station was 20 mins from our hotel. Score!!

Grayson showing me where we were.

A fuzzy but yummy tamale plate! If you look close at the refried beans you can see where Addie helped herself as the server was placing the plate on the table. Thankfully they weren't too hot!!

Guy Fieri's head was on the wall.



Part of what put Bob's on the map was their Snoballs. They started out as a snow cone place and added the Tex Mex & Taco business as an expansion. So we had to try a snoball!

The boys were excited as we waited for our choices. Gray had tiger blood, Jack had cherry, Adam ordered a dreamsicle and I had the strawberry cheesecake.

We all agreed, BEST Snoball (or sno cone) EVER! The texture of the ice was awesome!

Back at the hotel the boys watched Michael Phelps' last Olympic race.

Breakfast at the hotel the next morning -- pretty bad even for hotel breakfast.

Going swimming in the hotel pool. Addie's 12 month suit was a bit small!!

Addie didn't want to go to sleep... any of the naps/nights we were there. She didn't want to miss anything! I finally got her to sleep after rocking her in bed and singing to her.

Breakfast at Cracker Barrel the next morning.

Thank goodness for iPads and free hotel wi-fi. The boys spent most of their time watching Netflix. Adam had to work two closing shifts so we spent a lot of the time hanging around the hotel.

The boys wanted to swim again the next day. Addie and I sat this one out. It was a heated indoor pool in the middle of summer in Texas. It was like a sauna in there. Once was enough for this momma!

By our third night, I was pretty much doing whatever I could to entertain Addie. Including letting her pull out every single wet wipe. I picked them up and put them in a ziploc to salvage them when she lost interest.

The next morning Adam was off again and we packed up and left by 10am. Stopped for breakfast at McD's and were home by 1pm. It was a nice little last summer hoorah. I came home and ordered school clothes for Gray and Jack online. Summer was officially coming to an end!

July in a nutshell

Yikes! So much for blogging more during the summer months! We got back from our Amelia Vakay and hit the ground... walking. It was nice! We were busy-ish but not crazy busy. In July, we celebrated the fourth at home, very low key.

We attended the July Hydro Angels support group meeting.

Figured out why the car was leaking....

We traveled to my hometown for part 2 of my dental work.

Taking by my mom, at my parent's place

I saw my OB again which was awesome!! (and yes I realize I just !! a gyno appt but seeing the doc more than made up for the unpleasant part) She was super excited to see Addie and it was great to talk to her about the whole experience from diagnosis to delivery with a year's worth of hindsight and clarity.

Waiting in the waiting room with me for my appt

Grayson went with his dad and step mom on a 12 day trip to Disneyland in California. Lucky duck!


While Bubba was gone, Jack and I went on a movie date... except Jack insisted I call it a movie hang out cus in his words "we're not married!". Apparently only married people are allowed to go on dates.

We drove to San Antonio to meet another hydro family  (find their blog here) before they moved to DC ! It was so great to meet you Ashe Family!!

and to  tell my brother and his family bye before they moved to New Mexico.

Addie saw Dr. Rainey who wanted us to do drops again and start eye patching... yeah right. Addie can't stand the patch and half the time, won't leave it on!!

My niece Raychel and her mom came in to do some back to school shopping. Raych is now a freshman in high school and Jacob's a senior! Crazy!!

We finished up July by sitting glued to the TV watching the Summer Olympics. I've always been a fan of the Olympics and it was nice to share that with Grayson now that he's old enough to appreciate it. He really enjoyed watching the swimming competition!

Of course all of this was mixed in with our normal therapy appointments! I managed to watch several seasons of Grey's Anatomy on Netflix and Adam and I started watching Mad Men. Love summertime!

And of course... Miss Addison took her first steps on July 19th as I already posted here !

Pretty big July for us!! And what a wonderful difference from our last July when we found out Addie had been exposed to TB in the NICU and was overdraining and had to have a revision. Was that really ONE year ago??! Seems like just yesterday yet forever and a day ago.

Amelia to New Orleans and then home!

We woke up fairly early by our vacation standards, had breakfast and loaded up. We said our goodbyes to MiMi :( and were on the road by 10:30am.

 About an hour into the trip, Jack had to use the restroom. Then by Tallahassee we were hungry for lunch so we decided to find a Zaxby's... and eat inside. An HOUR  later we were back on the road. The food was good but Zaxby's during lunch hour on a Saturday is insanity.

Adam decided to use the Distance to Empty gage on the minivan to make it to the next gas station on the interstate. Which was 10 miles away according to the interstate exit signs and we supposed had 25 miles left til empty. Yeah.... those gages aren't ACCURATE. We coasted into the gas station with 1 mile left on the gage....

We stopped at a truck stop somewhere in Mississippi and I pulled Addie's diaper back to check if she was dirty and red lava poop came oozing out. It was disgusting. And it got all over her, her outfit, and her newly cleaned up carseat. It took Adam and I both holding her down while I changed her diaper, wiped her up, changed her outfit and we wiped down her carseat. Lesson learned: no pasta with red sauce the night before a road trip!

Lake Pontcharatrain at sunset

Coming in to downtown NOLA

We made it into New Orleans at around 7:30pm. Checked into our Priceline Name Your Price 3 star hotel in the French Quarter and were told we had a room with one king bed.... uh ok we'll deal. Oh and we're out of rollaways. Um ok... and we're out of extra bedding. Seriously? That's what we get for naming our own price I guess!


We made it up to our room... changed clothes and then headed back out for dinner. As luck would have it, my best friend from high school was also in New Orleans on her way to Florida and we were supposed to meet up somehow.

We made our way via foot on a Saturday night through the French Quarter to the Acme Oyster House. It was hot and humid and stanky and nasty and crowded with people. We passed elderly women dressed up in Playboy Bunny costumes and people making out (that's putting it nicely) in alcoves, and drunks passed out sleeping upright on the sidewalks. And my boys mouths were gaping open. Addie was in her stroller oblivious to it all, thankfully. It was about that time that I thought..... yeah... this isn't Disney World!!

We made it to the Acme Oyster House and stepped to the back of the line. It was about 20 people deep. Bless Addie's heart, as tired and hungry as she was, she was high fiving people in line and smiling at everyone. The boys were really good too!!

We finally make it into the restaurant, after about 20 mins standing in line, and were sat a group table (I'm sorry to the party of 5 we joined.... my kids were as good as they could be after being in the car for 10 hrs!)

Carol called (my high school BFF) and was outside the restaurant coming in to say hi really quickly!! A quick hug, a few pics and a food recommendation (they had just eaten there earlier in the evening) and she was off to have fun with her travel companions!

Addie chowed down hard... she ate nearly an entire adult entree of rice and beans (Adam ordered a side order but they brought us out a full order, which turned out to be a lifesaver!). I had the fried shrimp plate and shared my fries with Addie, Adam had a po boy and the boys split a burger.  All good! Though as tired and hungry as we were, we probably would've eaten sawdust at this point. We all drank a ton of WATER because of how hot and humid it was.

We finished up dinner and headed back to the hotel... pushing a baby in a stroller at 9:30pm at night a block away from Bourbon Street was pretty funny. There was this group of drunk frat boys walking towards us on the very narrow sidewalk and we hear them yelling at each other "Dudes.... look out! There's a baby coming! Make room for the baby!!!" LOL It was pretty funny. Everyone was super friendly. We were definitely in the deep south!

We made it back to our room and crashed... we put the boys on a doubled over comforter on the floor and we slept with just a sheet.

None of us moved until 8:30am.

Addie crawled into between the boys to help wake them up.

When we woke up, we had wanted to walk over to Cafe Du Monde but it was too far away.... and when I called and asked for a late check out, the latest they could do was noon. So we found (thanks to Yelp!) another beignet place that was much closer and we walked over to have breakfast. It was a great decision. They had more than just beignets so the kids were able to eat eggs and bacon too... and we all shared the beignets that were as big as Jack's head and incredibly good. We sat outside in a very traditional New Orleans style courtyard while someone played live music on the other side of the iron fence. Great memory!!

We had to speed walk to get back to the hotel in time, but we made it to the room with 10 mins to spare. Thankfully we had kept most of our stuff packed so it was a quick clean up! We walked out of our room at noon on the dot. We retrieved our car from the mandatory $26 a night valet (yikes!) and were on our way. We drove around the French Quarter some, taking in some of the sights our whirlwind 12 hr visit has missed and then got back on 1-10 and headed WEST!

About 8 hours later and a pit stop for Tex Mex in Houston later...

we were home!!! Aunt Missy was waiting for us with the dogs. :) It was a great vacation!! But we were so glad to be home!