Tuesday, September 23, 2014

First Week Back Home (Post-Surgery)

I cannot begin to explain how happy we are to be back home with little man. We have slept better and longer in the past few nights than I could have hoped for. We are still hands on for him with restrictions on what he can do, but he is very happy to be home. Our neighbors were wonderful while we were out and did our lawn for us, which was a nice surprise to come home to...just love where we live. We began our Out-Patient Rehab this week, starting with his patient evaluation and sessions to map out his future therapy and where we need to go with it in the next 3 months. It will require lots of visits to TCH in the Medical Center; long days; long drives; but at least we get to sleep at home right? We did get to go visit Miles at the Zoo; so Bennett loved that! They set up a private feeding for him.

Feeding Miles at the Zoo between Therapy Sessions

Our new Physical Therapist

Ms. Sheila, Ms. Meri and Ms. Lori from his school came by to see him!

The pitcher from the Rice Baseball Team sent him a gift!

Made cupcakes with Mommy

Watching Finding Nemo with Maya & Mason

Mommy & Bennett made a treat

Miles the Giraffe painted him a get well soon card!

Ms. Sheryl came by to play games

Another treat with Mommy!
Our new Occupational Therapist

Friday, September 19, 2014

September 19, 2014 (Last Day of Inpatient Intensive Rehab- GOING HOME!)

Woohoo! We are going home today! After 17 days in the hospital we are finally going home. So relieved. It has been a long process and struggle, but we have tried to stay positive through all of this for Bennett's sake. He has been the true hero and has handled this all with a smile on his face, which still shocks me. He has inspired so many people with his story, and has not met one person at the hospital who hasn't loved him from the moment they meet. With the love and support of many friends and family, wonderful and skilled medical care, Bennett has come through this with gold stars. God placed this little man on this planet to do GREAT BIG things, I just know it.

We will continue with his therapy at the Texas Children's Hospital here in the medical center as an Outpatient for the next 6 weeks as we move to get him better oriented to make the transition back into his school environment. So it will be another period of hard work for Mommy & Bennett at home but we are ready to do this! Thank you again to everyone for everything you have done for us. Eternally grateful for each person who has been there for us. Will update you all after we begin our new treatments in next week. Much Love from One happy & exhausted Mommy, Brande
Our Last In-Patient Rehab Schedule

Last day of TR with Nurse Michelle

Last day of ST with Nurse Jean

Last day of PT with Nurse Robin


Thursday, September 18, 2014

September 18, 2014 (12th Floor- Intensive Rehab)

Its going to be weird not being here all day for Bennett today, but I have a surgery planned to remove a lump they found in my left breast. So I will be heading to Memorial Hermann Hospital in Katy to have them put me under and remove the lump. Luckily my mother-in-law will be here with him for the day, but I will have my father-in-law bring me back as soon as they release me from recovery. Will keep everyone posted on how that goes and let you know when they get the results from the pathology. Bennett just left with the Physical Therapist for an hour for his session, but I was able to sneak in and get a quick picture before I left... ;) Be back later- Mommy Nester

Well, I am back at the hospital with little man ;) My surgery to remove the lump they found in my breast went well, the incision was made along the curvature of the nipple, so a scar will not be noticed at all, thank goodness! They sent the tumor off to pathology and I should have the results within a week. Praying that everything comes back benign. I am resting with little man now, letting my pain meds do their magic.
In other news, Bennett and Gammy got  a visit from the doctors while I was out. WE GET TO GO HOME TOMORROW! So thrilled that we will be able to head to our own home and sleep in our own beds after 16 days in the hospital. It's been a long exhausting journey, but we are glad to see the end of the light in the tunnel. Even if we are not quite there yet (Since we will have to keep monitoring the remainder of the tumor in his brain with MRIs every 3 months); but we are one step closer. We will head to TCH in Katy Monday to begin his out-patient rehab there. For our last meal at the hospital tonight Channing and Chance have volunteered to bring us dinner. We are so thankful and grateful for all of our friends who have came by and helped us out like this. I'm going to go rest some more while he is napping. -Mommy Nester

Wednesday, September 17, 2014

September 17, 2014 (12th Floor- Intensive Rehab)

Another day at TCH...busy schedule for Little Man, but he seems to be doing well so far with all of his rehab sessions. We got up around 8am, had breakfast and then waited for the doctors to make their rounds. His incision looks a little red around the bottom portion of it, so they ordered meds to fight any possible infection brewing... ;) His motorskills and Speech are coming along well! Today in OT they had music time....I had to share... too cute! Mommy was able to get a quick jog in while they worked with him...keeping her sanity. lol. Will update later as we progress...

Update (3pm): We had more visitors today...Mommy's Old Work Friends from Johnson Law Group stopped in to visit and bring Mommy her favorite dish (SUSHI) ;) Super nice of them to come by! Love them! We also had a visit from Daddy's old friend Thomas and his kiddos. The therapy and visits exhaust Bennett, so he is now napping. Been a good day so far. We should be meeting with the doctors to discuss when we will be able to go home on the 23rd. Fingers Crossed that he has progressed enough for us to do that. One month in the hospital is ENOUGH. lol... Mommy won't be with Bennett tomorrow b/c she has to have a lump on her breast removed, so Bennett's Gammy will be here to stay with him at the hospital while I go have that removed. I swear, when it rains, it POURS. If God is testing how much I can handle right now, he is pushing the limit. To top it all off, we found out that Bennett's insurance only covers $400 per day of his In-Patient Rehab. So that means we will have a HUGE hospital bill to deal with once we are discharged. Trying to now let it all stress me out, but its a lot to try to deal with all at once. But at least I can have one good thing on my plate through all of this. Bennett's tumor is almost gone. For that I am thankful. ;)

Mommy & Bennett are solo at the hospital tonight, so Ms. Monica Hachey stopped by to watch a movie with us! It was hard trying to get little man to let us put anything besides "Finding Nemo" on TV, but we managed! ;) It is so nice to have so many friends that love and support us, this whole ordeal would have been a lot different without them.

Tuesday, September 16, 2014

September 16, 2014 (12th Floor- Intensive Rehab)

Great Day so Far. :) Rehab went well this morning..so well infact that they moved his "alert" assistance from Hands On to Hand Assist. :) So he only needs one hand of help when walking, etc. now instead of 2! ;) He also got a nice surprise visit today by DJ Swagg from the Texans Football Team. Big thanks to Gammy and Granpa for stopping by with Donut Holes and Suckers, and also Ms. Jackie for visiting and giving little man a new remote control car! I'm sure once he gets the batteries in it the nurses will be running! He is resting now for nap time...about to wake him up for afternoon Rehab. Will update you all later. -Mommy Nester

Pretty uneventful afternoon....we finished with our rehab and then walked downstairs to grab an Ice Cream Cone. While we were out we ran into Ms. Carli so that was a nice surprise! After, we headed back to our room to get ready for our evening. The Radio Lollipop gang came to our floor with a coloring contest, and Bennett won! ;) Ok, off to bed....busy day tomorrow. -B

Also....Bennett recited his favorite thing to say this evening...the Preamble. He may have just had major Brain Surgery, but it didn't hurt his memory at all! ;)

Monday, September 15, 2014

September 15, 2014 (12th Floor- Intensive Rehab)

Today began with a new entry for once...Daddy sent Mommy home last night so that she could have a day of relaxation today and get a good nights sleep...so to begin this post...I'll enter what Randy wrote in Bennett's Journal:

" Lots of Rehab Today and you did great! At One Point you walked into a room full of 15-20 nurses and told them all HAPPY BIRTHDAY! Needless to say you were the center of attention. Brandi Goss stopped by to visit and brought you a gift too! You have new Batman PJ's and you loved the Drawing Board she brought as well! Once you get better you will have a playdate with Kyli soon! You are napping now and have more Rehab this afternoon..." Love, Daddy

Mommy arrived back at the hospital this evening around 7pm to relieve Daddy so he could head home. So it's just Mommy and Bennett tonight. Rehab starts early tomorrow, so we are off to bed. Good Night! -Mommy Nester

September 14, 2014 (12th Floor- Intensive Rehab)

We had NO therapy today...we get Sundays OFF! ;) Woohooo! So Mommy & Bennett woke up around 9am, had breakfast and stayed in our PJ's all day ready to have a comfy cozy time in our hospital room. Ms. Jaclyn came by to give little man a much needed haircut so that his hair would not get stuck in his eye patch, so nice of her to do that for him....then she and mommy spent the afternoon catching up on girl talk. ;) Ms. Mary also stopped in for a visit to see Bennett and brought him some "Cars" toys! He loved them!
Around 5pm Daisy, Rico, Brandon and Dylan all came by to play! They played catch, took a car ride around the 12th floor, and pretend to be pirates. ;) Then Daddy came by to relieve Mommy so that she could go home and get a good nights sleep....yea right, like she will actually do that. lol.

Saturday, September 13, 2014

September 13, 2014 (12th Floor- Intensive Rehab)

Day 10 in the hospital....up early today for our therapy sessions starting at 9am...luckily we only have them til 12:30; so we get the rest of the afternoon to cuddle and watch movies in this rainy weather....its actually a really nice view from our hospital room. :) His allergic reaction from yesterday is almost gone...will keep everyone updated on his progress today. -Mommy Nester

So far he had a wonderful morning...great progress in therapy, we are now walking by ourself, we have to have a little help at times, but we can do it! SO PROUD of him! For lunch The Evans Family stopped in for a visit to bring us lunch and Surprise Bennett with yummy cookies to eat while he played with his new toys! So grateful for such wonderful friends.

But....the AWESOME part of our day was having our little SUPERHERO getting a visit from SUPERHEROES! ;) TOO COOL! Thank you Crissy Gilbert for setting this up for him, he loved it!
Tomorrow is our off day, looking forward for Daddy to come spend the day with us and to just relax...since we will be in the hospital, we may try to get a day pass to take little man over in his wheelchair to the zoo if weather permits. ;)
We had a quick visit from BJ Farmer and his girls this afternoon, but Bennett was so tired he slept right through their visit. :( But he was so excited to wake up and find his new "Queen" Bed Buddy and cool poster for his room! Thank you BJ! Mommy & Bennett are having a solo night...so it's bed dinner; bath; and Rio Movie and then bed. ;) Night Everyone! -B

Friday, September 12, 2014

September 12, 2014 (12th Floor- Intensive Rehab)

It has been such a LONG week. I didn't realize how mentally, physically & emotionally draining this all would be on me. I can't even pretend to fathom how Bennett is dealing with all of this with a smile on his face...but if he can do it, Mommy can too.
I tried get myself out of the hospital today for 20 minutes...just to walk in the rain while they did his OT Therapy...even a little exercise is something... ;)  He had fun in OT though....they made Rice Krispie Treats today to learn to use his hands...

We haven't had any visitors today besides Gammy & Granpdpa, which was kind of nice to have a small break from all of the hustle and bustle...His therapy is going good so far, we are finished or the day...not sure if he did extremely well, but this is what they put on his progress board today at 3....

...hoping he will be able to walk on his own soon. Thank you everyone for all of the help and support you have given us.

On another note....Little man hasn't had a bowel movement in 9 days....despite their help with fluids, Miralax, and Generlac...it hasn't happened...we don't want him getting impacted, so we will be giving him a suppository in a bit to try to help....that should be fun.

On another fun note...I am waiting on the VAC team from hemotology to come look at his port line in his neck...it is red, raised and he is itching it...I hope it isn't infected.

Update (4:30pm)- Nope...And....now we are having an allergic reaction to one of the medications that they gave him last night to have a bowel movement...awesome. Hives, Scratching...does this EVER End????? Waiting on Benadryl now...
Finally got the swelling to go down...after 2 doses of Benadryl and another steroid. So...he's fast asleep now. He finally able to have a bowel movement as well! So after a bath and a bedtime story, he is out like a light. Mommy and Daddy were treated to a Pizza for Dinner compliments of Courtney! ;) Thank you Lady! I also got a nice surprise in the mail that Randy brought from home...a new journal from Sam to keeping writing about Bennett in... & Comfy clothes from Cassandra to wear at the hospital ;) You both are so sweet to do that for me! Thank you ladies!
Also, big Thanks to Aunt Pam, Uncle Judd, Nate & Aunt Gretchen for stopping by to see him! ;) We love you guys!