“If ever there is tomorrow when we're not together there is something you must always remember, you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart I'll always be with you.”

~Winnie the Pooh

1.19.2015

all good things

first of, let me say that andrew and i are beyond blessed to have such wonderful family and friends.  we are so thankful for all of the prayers that carson received over the last few days.  we felt every single one of them.  carson did such a great job over the last few days and we couldn't be happier with our decision.  he may look like a baby deer learning to walk for the first time right now but we know that in a few short weeks we will see some amazing results.  all good things!

we got into galveston on thursday morning after a bright and early flight out of atlanta.  we had to get there so early because our appointment with dr. yngve was at 2.  we could tell carson was a little anxious about going somewhere with just the two of us.  he spotted a big olaf and nearly had a break down when we told him we couldn't buy it.  this kid never breaks down.  he usually lowers his head and says a pitiful "ok."  but this time he lost it.  he really wanted that olaf.  so when i went to get my bottle of water they had a smaller version of our little friend olaf.  how could i not get him, he did provide us with our quote for the year.  so...


he was super excited to see that olaf had found him and he eased his sweet little mind for a little bit.  well worth it.  


once we made it we had to get a wataburger.  duh, we're in texas.  you have to go there when you're in texas.  


after a hearty lunch we met with dr. yngve for the first time.  we were anxious to hear what he had to say about our carson and which areas he wanted to do and how he thought carson would do post surgery.  here is a video of how carson walks before surgery.  i love those skinny little legs!  you can kind of see in the video how carson walks on his toes.  his hamstrings are so tight that he physically cannot straighten his legs enough to walk flat footed.  he also has several other muscle groups that are so tight from him over compensating for his hamstrings which adds to his labored "gait" which is the way in which you walk.  he may seem like he's doing pretty good now but as he grows this would only get worse.  in fact, it has gotten worse over the past year or so.  he was getting so tight it was hard for him to do things he could previously do which was very frustrating for carson.  the SPML surgery was a way to release those muscles and loosen his legs to allow him to learn to walk with a smoother gait. 


after meeting with dr. yngve, who we really liked, we were all set.  he felt like carson looked pretty good already but his hamstrings were really tight.  he was only going to release those and his adductors (the inner thigh muscles) and an alcohol block.  i'm still not 100% sure what that does but to my best guess it stops the nerves from receiving the signal to tighten up.   he did not think that his heel cords needed to be done which meant no casts which was great news!  we were all set for 7 am the next morning.  now just to kill some time in galveston while we anxiously waited for carson to get "new" legs.  we got some recommendations for dinner, picked one and went out to celebrate carson and also andrew's birthday which just happened to fall on the same day carson was having surgery.  all good things! 

what do you do when your kid has to have surgery on your birthday?  get every dessert the restaurant offers the night before!  we figured we'd get the sampler platter thinking it would be a little sample of each.  um, not so much.  it was six full size desserts.  it took two waiters to deliver our feast and they were laughing at us.  obviously we did not finish all the treats so we had them all boxed up to take back with us to our hotel.  

this was out front of our hotel on thursday.  it was really cold for galveston so nobody was outside except us.

friday morning came super fast and we were headed to the surgery center with starbucks in hand (thank you farroh, schultz and habas families!)  we checked in and waited.  carson got a dose of happy medicine and was good to go.  he was all goofy and smiles till he saw some pictures on my phone from home.  then he got real weepy and sad.  he wanted to go home.  he missed brooks and his toys.  i had some buzz and woody puppets on hand for a surprise so once he saw those all thoughts of home were forgot and he was putting on a puppet show for everyone in the room.  he didn't even blink an eye when it was time for him to wheel one way and us go the other.  all i could see were buzz and woody up in the air.  i swear that is the worst feeling in the world, watching your baby go with strangers while you go sit and wait for the news he's all done and doing great.  and really, before i could get myself too panicked (or even eat the chicken biscuit andrew got me) the doctor was coming out with a smile on his face.  he had done great!  his hamstrings were really tight but now they were loosey goosey.  it took him longer to wake up from the anesthesia than the whole surgery did.  the doctor was very pleased with how it all went and thinks that this will do wonderful things for carson.  thank you, god, for bringing this option to our attention and for pushing us to do a little more research so that we could do what is absolutely best for carson.  

with our buddy waiting to be wheeled back.  i wish they had some mommy happy medicine to give so it's easy on me when he goes.  but again, all good things...all good things.

 after about 2 hours in recovery we were ready to head back to our hotel.  carson was awake but still totally out of it.  he rode the whole way back with his buzz puppet in the air while sound asleep.  

  

i bought myself some bracelets to remind myself of some important things.  i think they helped out.


the rest of friday carson and i spent in the bed watching all his favorite shows on my computer while andrew hiked all over galveston trying to find a pharmacy that had all the medicine we needed.  once we had all that we settled in and ordered room service and rested.  carson had a hard time coming off the anesthesia and was pretty sick and puny the rest of the day.  the poor thing was starving but every time he tried to eat it all came back up.  just about every time i closed my eyes and was just about to fall asleep i would hear the tell tale sign that he was going to throw up and since he has no idea how to use his newly loosened legs i had to pick him up and run to the toilet.  i'd do it a thousand times for him though as long as he could get some rest.  after a dose of some serious pain medicine he zonked right out and so did i.  it was a long day but we made it through and are on the other side now.  all good things from this point on!

hanging out in the bed with our knee braces on.  he has to wear these at night for a few weeks to keep him from curling up in the fetal position while he sleeps.  we definitely do not want his legs tightening back up after all that we've done.

this is the face we woke up to saturday morning.  i could squeeze this face it's so sweet.  he was just laying there between me and andrew waiting quietly till one of us woke up.  what a doll baby.  

saturday carson had no restrictions (using our common sense) and the doctor said we could explore galveston some if we wanted to.  so we loaded up our little guy in his wheelchair and did just that.  he wasn't too excited to leave his comfy bed and toys but we pushed him a little bit and he had fun.  

we went to bubba gump shrimp co.





we had lunch at a neat restaurant 

we saw the water

and we went to the pier

we had a great day walking around getting some much needed fresh air and sunshine.  but it was time to get ready to come home.  carson asked no less than 100 times if it was time to go home yet.  i think someone was ready.  

on the plane ready to go.  let me just say that for once delta was really on point.  as was both airports that we traveled through, which is saying a lot for atlanta.  we were treated with all kinds of kindness (i think the small kid in a wheelchair helped but his sweet little smile and thumbs up when asked how he was doing helped too). 

and when we got home we were greeted with a driveway full of our family waiting with balloons and welcome home signs.  the best one of all was sweet little brooks.  he was so worried about his brother having surgery.  his face was beyond priceless.  he was so excited to see carson come home and was so concerned about him.  that just melted my heart.  of all things i want my kids to be it is kind.  through all that we have been through and will have to go through i have learned that being kind to everyone is the most important thing we can do.  you never know what kind of day/week/month/year or life someone is having to live.  a kind smile or word can make someone's day.  i want my kids to know that they can make a difference and it can start with each other (and yes, i know that they are brothers and they will be at each other's throats most of the time but when it counts i know they will be there for each other and for their sister).  i wish this was a video but i was frantically pulling out my phone and could only get a picture.  once again, tears in my eyes.  we were home.  we had done something out of the box for our kid that will make his life easier.  we have an amazing support system that stands behind every decision we make (and who will help out in any way possible).  we are lucky.  parenting is not easy but it is by far the best thing we have done. 




1.14.2015

brothers

we weren't really sure on how to break the news to carson that he was going to have to have surgery this friday, i didn't want to give him any extra anxiety or scare him any more that he'll probably be scared on friday.  but, after talking about it in front of him for several weeks now he finally caught on.  he was talking about it with his physical therapist and said that he would rather drive to texas than fly.  that's carson.  put him in the back of the car with an ipad and some french fries and he's good for about 10 hours.  you may hear a tiny little "can i have a snack?" once in a while but that's about it.

anyway, as we were explaining to him that we had to fly, another little boy's ears perked up.  brooks immediately asked where we (meaning him) were flying to?  you can imagine his face when we told him he wasn't flying anywhere.  he came upstairs with me to get shelby ready for bed and we had a little chat.  with tears in his eyes he asked why he couldn't goto texas.  and with tears in mine i had to explain to him that his brother needed to have surgery and that mom and dad needed to be with carson when he was at the hospital.  well the mention of surgery made brooks even more upset.  he wanted to know why his brother had to have surgery.  isn't that the beauty of kids.  brooks doesn't notice that there is anything different about carson and the way he walks.  after showing brooks how he and i can stretch our legs out all the way but that carson could only stretch is out a little he understood a little of why he needed to have surgery.  but then that brought on all kinds of questions.  will they have to cut his legs, does he have to get a shot (the worst thing imaginable to this 5 year old), will he be able to walk when he's done?  and so on and so on.  the best part was when i told him that we would need to help carson once we come back home and that he might not be able to do as much right away.  then i told him that he'd be in a wheelchair for a coulple days.  what???!!!  he "gets" to ride in a wheelchair, he's so lucky!  yes, buddy.  carson "gets" to do all the fun stuff...again, the mind of a 5 year old.  he was ok with not going with us when i told him that aunt megan was going to take him to see a movie and maybe go to chuck e. cheese.  he totatlly forgot about wanting to go with us to texas.  i guess chuck e. cheese trumps it all. 

the sweetest part of this whole conversation was at the end when brooks told me that we probably shouldn't tell carson about the surgery because it may scare him and we don't want to do that.  he told me to not talk about the "s" word in front of him so he won't hear us.  and we better not tell dad either, because he would probably tell carson.  several times he's heard me talking about going and said, "mom, remember, we're not telling dad or carson till you get there."  brooks may drive me nuts 98% of the day but he sure can be sweet.  sure the boys fight and annoy each other just like any other two brothers.  but they are each other's best friend.  i pray that lasts.  


sweet brothers.



off to clean and pack.  trying to get us all ready to go tomorrow morning.  we fly out bright and early and meet with the doctor tomorrow afternoon.  the surgery will be friday, we're just not sure of the time yet.  we will find out tomorrow.  thank you all for your messages, texts, emails, and prayers.  this will be great for carson.  all good things, all good things...


1.06.2015

back to life, back to reality

i always play that song in my head when school starts back up in january.  i love christmas break.  i love staying up late and sleeping in late, which fortunately my 3 kids also love to do.  this last week of break shelby didn't wake up before 9:30 every morning.  it was awesome!  so, this morning when it was time for the buses to come and pick up the boys i had a moment of sadness but then i realized it wasn't up to me to entertain them all day long and that moment passed and i sat down on my couch with my coffee in the quiet and i realized how much i missed them being in school.  shhhh, don't tell the boys that though.

we're starting off the new year with a quote from a favorite movie in our house, frozen.  as olaf says, "all good things, all good things"  now, he's talking about something totally different but i'm using it as our mantra for this year.  this will be a year of all good things.  and we're starting off with a bang.  on january 15 andrew and i will be taking carson to galveston, texas to have procedure done (called SPML which stands for Selective Percutanious Myofascial Lengthening) to lengthen his hamstrings and reduce the tightness and pain he feels in his legs.  at the end of the school year last year we knew something would need to be done sooner than later for him.  his hamstrings are getting tighter and tighter as he grows.  it's getting more difficult for him to do things that he could do when he was younger and botox isn't giving us the results it use to either.  so for the last few months i have been taking him to see several doctors and surgeons and getting their opinions.  the orthopedist didn't feel like carson's legs looked bad enough to do a full hamstring lengthening surgery but thought a spinal surgery (rhyzotomy) might be an option.  so off to the neurosurgeon we went.  he thought the surgery would be good for carson because it would permanently take away his spasticity but we were concerned because a) it was a surgery on his spinal cord b) it still didn't resolve the fact that his hamstrings are physically shorter than normal.  so now what?  we were on board for the spinal surgery but needed to meet with the doctor again to confirm our plans.  this is when a miracle happened. 

i was watching something that was taped on our tv and got board with it and turned on the regular tv.  the show "the doctors" happened to be on and it was just coming back from commercial.  the next story was about a 7 year old boy with cerebral palsy who needed to have a procedure done to alleviate pain in his legs and to allow him to become more mobile.  um, are they talking about carson?  i was literally on the edge of my couch with tears streaming down my face.  they showed a much less invasive procedure done to this little boy who reminded me very much of carson.  i was meant to see this show and this very moment.  why else would i have turned off some dumb housewives show?  i never turn those things off!  then a last minute late night phone call from our PT of a type of surgery she had just heard of from a colleague the day before we were going back to the neurosurgeon to schedule the other surgery we found one of two doctors who performs this less invasive, out patient surgery on kids with cp and are seeing amazing results.  we did some research and made our decision.  our tickets are booked and we are scheduled for surgery on the 16th of january, andrew's birthday.  we feel really good about our choice (although I'm a bit anxious) and are ready to go.  we will be in galveston through the weekend after the surgery to make sure everything is ok then we get to bring him home.  he will be a little uncomfortable and possibly have casts on his feet depending on if the doctor wants to do his heel cords or not.  if not, then he will just have to wear knee braces for a few weeks.  he will have some serious rehab in learning how to use his newly loosened legs but will be back to his old (slightly improved) self in no time.  he will miss less school than with the other two surgery options and will be up and running in no time hopefully with that same sweet carson smile.  

so, if you have a free moment around january 16 send up a little prayer for our carson.  he is far and away the sweetest kid i've ever known and andrew and i are beyond lucky that God chose to give him to us.  all good things for 2015, all good things...


12.30.2014


we are recovering from yet another wonderful christmas.  the kids got just about everything they asked for and then some.  we have officially run out of room.  time to clean out the old to make room for the new.  for me the best part was watching carson open up his gifts.  with each one he would say, "oh, it's my very own..."  he truly was so excited to get whatever it was that he was opening.  he's the sweetest little soul i've ever met.  another great moment was watching brooks look for his #1 gift that he wanted, the wii u.  we kept telling him we weren't sure santa could get one for him.  i know it's mean to mess with kids but it was a really good way to keep him in check.  we hid the coveted wii till the end.  well, actually till he walked around the corner and found it himself.  he started refusing to open the smaller gifts knowing that the wii u had to be big.  that kid.

now just to enjoy this last week off, or if your me, count the days till school is back in session.  i kid.  but not really.


rudolf!

keeping someone busy is not easy

this kid and his eye lashes kill me



church on christmas eve.  we actually made it this year, all 5 of us!  


santa hat hairbow

my favorite ornament

checking out the tree

santa came!

 

 

12.25.2014

merry christmas

from our little family to yours we wish you a very merry christmas and a very happy new year.  2015 is going to be the best one yet.  good things are going to happen!



12.17.2014

she loves to swim

i love this little video from our trip to florida for thanksgiving.  we had been in the car for 9 hours and the second she saw the pool she jumped right in.  the girl loves the water!


12.10.2014

santa!!! i know him!

this year we were lucky enough to be at a birthday party with the real santa!  thank you john henry for being born on christmas day!!  the boys were super excited to learn that santa was invited and that he was able to come celebrate.  thank you to renata and kc for helping us skip the mall santa this year, much appreciated.

one person who was not too excited to see the big guy was miss shelby.  she was not having it, not one bit.  we tried three times to get a picture without the look of pure terror and fear on her face.  she wouldn't even let me walk past the guy without sticking out her bottom lip.  we did finally sneak one picture with santa on one side and shelby on the other just as he was about to leave.  it was pretty funny though.  hopefully we haven't scarred her for life.

brooks was in awe with santa at the party.  he saw him pull out his iPhone to check something and said to me, "mom, santa has an iPhone???"

and then the real fun begins...

nope.

get me out of here now!

still crying

i'm ok as long as that guy doesn't look at me