September

The rest of September was pretty much business as usual. Getting adjusted to our new schedule with two kids in school, plus Addison in clinic based physical therapy. We were mostly happy to be back in a routine again. A few minor adjustments with our sleep habits were a bit tricky... in other words, I miss sleep! ;)

September did bring a sad goodbye for Addison. Our developmental therapist, Kaitlyn who has been with us since Addie's initial eval at 6 wks old left Easter Seals.. We are super excited for her as she embarks on a new journey in her life but we will miss her!! Kaitlyn and I discussed it and decided not to replace the position of development therapist at this time, so we are down two less therapy sessions a month. YAY for that!

Addison tried on her dress she's supposed to wear to meet Mickey Mouse! Aunt Missy made it and she looks super cute cute in it if we say so ourselves!! We are getting ready to leave for Disney on September the 25th. Addie's first trip and the first time I've been back since the hydro diagnosis. We are all looking forward to some much needed celebratory magic! 

Meanwhile, Miss Addison is into EVERYTHING. We are having to watch her like a hawk... we don't have any child proof locks on this cabinet cus we don't keep any chemicals under the sink. And she entertains herself for hours pulling plastic containers and kitchen towels out. Fun for a 15 mth old! 

A beautiful sunset I was blessed to witness one morning as I was getting the boys ready for school.

Grayson asked if he could read to his brother one night... too sweet. Had to snap this picture! 

Addie in her new pjs for the upcoming fall (thanks Aunt Missy!) and trying on Jack's mouse ears!!! 

Addie chased Jack down for some of his sucker and pretty much wrestled him to the ground for it. She's discovered the power of her head butt... let  me tell you, that big ol noggin of hers is heavy and it hurts when she hits you with it. We call it the 'hydro hammer'. I see a future for Addie in the WWF. ;)

Addie got some PawPaw time in recently when mom and dad had to come in for a doctor's appt. We snuck over to Aunt Missy's house for dinner and to watch Monday Night Football with them. She snuggled right up to PawPaw. 

Waiting for her PT appointment in the car, I snapped this pic of Addie talking on her 'phone'. She turned 16 months old that day. 

The doggies are going to stay with a friend while we are going to Disney next week, so I gave Hannah a wash and a cut. She wasn't too happy about it. 

Addie's New PT Clinic

After Addison started walking, I talked to her ECI PT and asked her what was next as far as physical therapy goes. She said we would work on stairs, and different surfaces, plus ramps and inclines etc. All things we don't have in our house. Well, I called and talked to our insurance provider and found out that we don't have a limit on the number of PT sessions we get a year and since we have more than met our deductible and max out of pocket for the year, we can switch over to private therapy and not paying anything out of pocket for the rest of the year.


And now that Jackson is starting pre-k I felt like it was more doable to have Addison going somewhere for therapy instead of home based appointments. Siblings aren't allowed back into the therapy rooms at the clinic and I couldn't have left Jack in the waiting room by himself. So the timing of him starting pre-k just worked!

It was a bit sad to tell Miss Anna bye! I was so thankful that we stayed with ECI long enough for Anna to see Addie take her first steps and to start walking around the house. I think that is huge and we will forever be grateful to Miss Anna for all her help and hard work over the last year! Thankfully she understood why we felt clinic PT would be beneficial at this time!

We went for an eval on August 28 and met an amazing PT that we both loved! She noticed so many things about Addison that I hadn't and had never been told by therapists or doctors before. Addie doesn't weight bear on her left arm unless in a four point crawl. She will not rotate her trunk, especially not to the left. When she gets up from the floor to sitting or crawling she always goes to the right. So we have a lot of things to work on as well as continuing to work on her walking and gait. She does have a limp and hyper extends her left leg, though I'm happy to say after a month of walking she no longer locks her knee.

Sidenote: She just grew into a pair of Weesqueak shoes that were handed down by my cousin's little girl and she loves them. She squeaks all around the house and will stand in place stomping her feet to make them squeak. It is the CUTEST thing I've seen in a long time. So I have a feeling she'll be getting some more Weesqueak shoes to supplement her TOMS shoe supply.

Addie went to her first clinic PT appointment on the 6th of September and I let her go back by herself. She tends to come to me to be rescued, mainly during PT because it's more 'work' than her other therapies. I felt like she would do better without me back with her. Well, halfway through her appointment they came to get me becase she was bawling - total meltdown. I think it was a combination of how tired she was ... her nap schedule was all messed up with Gray starting to school one week and then Jack starting the next week. It was a big adjustment to all our schedules. I also think she noticed I wasn't there. So part of me felt bad for the therapist and part of me celebrated that she has stranger awareness and attachment to me!

We went back on the 13th and she did much better. Thanks to my mom, Addie has a new sound machine in her room. She has been sleeping with a sleep sheep and it only has a 45 min timer. So now she has white noise throughout the night and into the morning which is especially important with the boys up getting ready for school walking right by her door. She slept much later this Thursday than the last week and I think that alone helped the most. But I also went back with her and we let her warm up slowly and go from there. She did awesome! She swung in the tire like swing, working on her balance and core strength, and then did some trunk rotation work on a ball, then went up stairs and worked on the trampoline. With the exception of the ball, all things we would have had a hard time doing at home! So we are very excited to see what comes from her PT change!!




Addie working out in the tire swing! She loved it!



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!

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.