Thankful Thursday

Linking up with my girl Joanna at Baby Gators Den because it's Thursday y'all! Last week was rough as you all know... this week?  A little bit better.  Easier to find things to be thankful for.

This week I am thankful:

that I got to spend a little time with my uncle and cousin from Colorado before they flew back home (even if the reason they were here was sad).

that I have got to see my grandmother the day after my grandfather's service. All I want to do is go to her house and park my butt on her couch... but for now I'm trying to give her some time. I was so happy to see her.

that I am about to pick up another social media client (can't give details yet but they will come).

for apple cinnamon water. Yes I know how random that is. Apples and a cinnamon stick in a giant batch of ice water in the fridge. It is getting me through the week as I cut down my coffee a little and try my best to do away with soda... which I'm still working on.

that the Big Guy's headaches earlier in the week did not end up turning into him spiking a temperature (which is how it goes with him). Also thankful that he and the Doodle Bop seem to be doing better cold wise (minus whoever had the barky cough last night) and that the Bunny Bee is still healthy.

for being able to watch all three boys get on the ice twice a week. (Freezing cold aside, I think I might have just been MADE to be a hockey mom.) LOVE watching them go and I am beyond proud seeing how far the Big Guy has come with his balance. It is hard to watch his brothers out skate him, but that kid is holding his own and it is wonderful to see.

for a great Physical Therapy evaluation at Hasbro today, as well as a great neurologist appointment. They are impressed with how the Big Guy is finally hopping and skipping ... and our neurologist called him 'my miracle kid' which brought tears to my eyes. The Big Guy may not get the weight of it, but I certainly do. No botox surgery in the immediate future needed. (If only I could make him see he is doing so well because of the exercise, constant PT and sports...) Still calling today a win.

What are you thankful for this week?

Calling BS on what he can't do

How can it be nearly 8pm ... can anyone tell me? After this day (hell after this entire week so far), I am breaking out ...

the face

Nope. Wait. That noise? I hear a kid crying his eyes out down the hall.  And my husband isn't home.  Now I think I feel like this.

Yup.

That's the one.  Right there.  That's how I feel. 

Someone needs to bring me a giant bottle of wine STAT!

I have been two steps behind all week and today was going to be the glorious day that I would catch up.  It would start with dropping the boys at school, hitting the gym and then coming home and just writing all.day.long. 

You know that didn't happen.

While the Big Guy was finally feeling well enough to get back to school this morning, the Bunny Bee had temporarily fallen ill shall we say.  As in 100% fine by lunch... but he was a sweaty crying mess this morning and I was not taking any chances.  We dropped the other two off at school and he sat with me on the couch while I started with Buy-Her. 

Then came the phone call.  We were on a cancellation list for the Big Guy's neurologist to talk about Botox and they could see us today at 2pm - verses the first week of August.  I was taking it.  Picked the boys up from school, dropped lunch in front of them and took a Rescuehood conference call that I could only make an hour of.  After that hour I scrambled to get the kids ready and out the door in under 15 minutes (which is huge) and off we went.  Dropped off the twins at Al's office and took the Big Guy to the neurologist office.

Trying to pull in the lot a minivan was backing out AT me and there was another truck behind me.  I honked the horn in fear she was going to hit me and she proceeded to curse me out.  I think.  I couldn't hear her, but I could sure SEE her.  She was furious as she tried to maneuver into her handicapped spot and didn't stop gesturing at me.  We get into the office and its that awkward moment where I realize she's not only in the same waiting room but its so packed I have to sit next to her.  This woman is staring me down and it kind of started to feel like I was being talked about, in another language of course.

And then? We waited for TWO HOURS.

OK so it was more like an hour an a half before we were seen but it was an entire two hours after our appointment time (which we showed up early for of course) before we were leaving.  Good news is we all agree we are in no rush to Botox his muscles just yet and we will revisit it in the fall.  I did leave feeling like this crazy parent.  I swear to you the doctor (who I love) was ready to say we should botox before the summer when the Big Guy launched into his tirade.  It's not fair.  I don't like this.  I can make my own decisions.  I'm not doing this for the rest of my life.  I'm FINE!

As I tried to explain what was happening, she kind of took over and listened to him which was great but then nodded at me and said something about how of course he thinks he's fine, he IS fine. 

I wanted to scream.

Yes he is fine.  He's great.  This is mild on the scheme of things.  I tried to explain that he doesn't always feel that way, sometimes he feels quite the opposite.  This isn't me telling him he isn't fine, that there is something wrong with him.  And he's having such a hard time learning to swim, would the Botox help with that?

She basically said that he may never be a good swimmer, or be able to be on a competitive level and that we would just need to work on getting him "to be safe in the water".  Bullshit I wanted to yell.  I don't care what I need to do, this kid is going to be breaking records on a swim team one day.

OK, so maybe that's not realistic.  Deep down inside I fear he will never learn to swim.  And not once yet have we ever been told he might not be capable of doing something.  It kind of scared the hell out of me.  All I ever tell him is that he can do anything.  He may have to work harder, but there is nothing... not one single thing he can't do.

Does that make me one of those pushy moms?

I don't know.  I do know that I am fine with waiting till the fall because I think the colder weather is when he needs the Botox the most.  I didn't however, like how it went down... with my 6 year old trying to take charge.

After that we picked up the twins from Al's office and by the time we got home I was making dinner.  I am on day 2 of My Fitness Pal trying to stick with 1,200 calories a day and it's making me super cranky as I try and get myself caught up on everything I have fallen behind on.  Like the Chobani post from when the boys got to go to Boston nearly 2 weeks ago... and the Music on the Hill giveaway that still needs to be posted.

Tomorrow...tomorrow... maybe tomorrow I will have 3 kids back in school for just two glorious hours.  Who cares that its Friday, right?  In the meantime, who is sending me that wine.

Moment to breathe

Trying to take a moment to breathe through the chaos.

Sunday night I planned out my week and nearly had a panic attack out of nowhere.  My MomAgenda is FULL for the week.  After doing so well getting back into my gym routine at the YMCA last week?  This week is all messed up and I am trying to find the time. 

Yesterday morning I had planned to get to the Y but was not able to make it after I got busy with something else.  This morning the boys are I were out the door just before 7:30am so we could make the Big Guy's 8am physical therapy/post Botox evaluation.  I have to say I was amazed we made it out the door and through all the city traffic on time.

It went well and he's looking good.  We can see that the Botox is starting to work a bit so that is wonderful news.  It will still be awhile longer before we see the full effects.  We put together a new stretching routine to do every day in addition to once a week therapy.  Then it was off to school.

A half hour late.  Traffic that early is Horrible!  I checked the boys in and went off to the library to volunteer at the school book fair.  So high tech!  Not only did I get a photo badge to wear, but we were even scanning the books into the register.  It was adorable to get to see my kids come in all excited to see me there.

This afternoon I have a conference call and tonight I'm taking the kids to see the Grinch musical at the PPAC.  NO TIME for the gym today, just can not manage to get there.  And I will be at the boys school for the next 2 mornings as well so I am going to have to find a way to make something work somewhere.  I feel like this always happens once I start a gym routine.  Solid week of being there, then Chaos.  Because of course.  I WILL make it there later this week.  I have to.

And now for a totally unrelated shameless plug for my boys.  Al entered them into a contest with Joystiq and here there are.  They are one of the final 32.  Famous kids I tell you.

Not taking no for an answer

Today was the big day.  The Big Guy was getting his first round of botox.

What went on yesterday though?  Is maybe an even bigger part of the story.

We started prepping the Big Guy for this last week.  All he knew was he was going to get some medicine at the hospital that would hopefully make his muscles move better.  Yesterday morning his panic started to set in.  When he panics, it's really hard to calm him down.  Much harder than my other two.

Coming home from school Al called to tell me there was a message that I'd just missed on the machine cancelling the botox for the next day.  And I lost.my.mind.  Hell no this was not happening.  The Big Guy was already stressing out, Al had taken the day off, I had rearranged my schedule, my mom had taken time off to watch the boys during the procedure...  Hell NO.

I called the neurologist's office and lost it on the woman who answered the phone.  She explained that the botox comes from a pharmacy that ships directly to the hospital in advance of the procedure.  In order for the shipment to arrive, that pharmacy has to contact me for my verbal approval - and they said they did not get it so they did not ship it.  Surprise, I wasn't even contacted - nor did I know I should have been waiting to be.

The staff at the office tried their best to keep the appointment for me, even tried to get it approved so we could just use the supply at the hospital ... but red tape - the insurance company said no.  I was in tears.  We rescheduled for next week and she gave me the number of the pharmacy (in Minnesota) and advised that I call to complain.

Which is just what I did.  Immediately.  After sitting on hold with them for like 20 minutes.  A woman picked up and I practically yelled 'Yeah, I have a COMPLAINT!'  And I went off on her even.worse.  I told them it was all their fault and I was not having this, that we were having the procedure the next day as planned.  More yelling and several phone calls later?

I GOT THE BOTOX OVERNIGHTED!  Overnighted people!  Which I was originally told was not possible.  I was so proud of myself.  (And a bit worried I would still get cancelled on in the morning when it didn't come in.)  Like maybe they just said it to placate me.

Last night the Big Guy had a tough night.  Once he found out he would get medicine which would make him sooo tired he would take a quick nap (because no way could I tell him he was being put under and getting injections) he was hysterical.  I hadn't expected that.  It was so bad Al promised to wake him up when he came home from work after 9pm.  We let him have a snack and sit on the couch in the dark with us and watch TV for an hour.

This morning he was furious again.  No smiles, not much to say to me ... and yelled at me outside school when I went to tell his teacher he couldn't have a snack at snack time.  She was so great with him, welcoming him in... even gave him special jobs at snack time so he felt like a big helper. 

After we picked the boys up from school early, we dropped the twins with my mom and checked into Hasbro.  I seriously held my breath and prayed as we checked in because I was sure we would be turned away.  But the next thing I knew the Big Guy was getting a bracelet and we were upstairs settling in.  I can not say enough about how nice each person who dealt with him was.

They saw how nervous he was and went out of their way to be sweet to him and get him smiling.  He got to sit in a big comfy chair and play all the Wii games he wanted thanks to the Starlight Children's Foundation.  Amazing. 

We met the anesthesiologist team, an intern and some nurses who marveled at the Big Guy's sideways front tooth as we had to tell the story of how it was knocked out.  They examined his right arm, right leg and marked both with a pen.  'Huh!  No!  You aren't supposed to write on people!', he gasped and furiously tried to get it off.  I laughed so hard.  Then it was show time.  They told him he could pick one of two vehicles and DRIVE to the procedure room.  Seriously!

Adorable.  Except for the part where he threw it in reverse and nearly took me down, but hey he's still learning to drive.  He was thrilled until he had to get off of it and walk into the room.  Al went to a waiting room and I went in with the Big Guy who was getting teary again.  We sat him on my lap and I suddenly felt like a celebrity as the people in the room started congratulating me when they realized who I was.  The mom that got the botox overnighted.  No one had EVER made that happen before.  I was a little embarrassed but also pretty proud that I did that for my son.

The Big Guy sat on my lap and got to make 'Darth Vader noises' into a cherry scented mask he picked out.  He could not stop laughing as they turned up the sound of his breathing.  When he was half out he started slow motion kicking and throwing his arms around.  That part scared me.  Everyone jumped to hold him down and they said lots of kids do that.  A long minute later he was asleep and we moved him to the table.  They tucked his favorite stuffed animal Mr. Monkey under his arm which meant so much to me and let me give him a kiss on the cheek before I went to the waiting room.

About 20 minutes later it was all done.  We got to meet him in recovery and were told he would be asleep about a half hour and to let him be.  That lasted all of 5 minutes.  The Big Guy was up and turning and trying to get the monitors off.  I held him until he was awake enough for the Popsicle he'd been dying for.  Red just like he requested.

A little while later we were on our way.  He got to pick out two brand new books and instead of a wheelchair ride, he opted for a piggy back ride out of the hospital from Daddy.  We stopped at Burger King at his request and he had a cheeseburger, apple fries and an apple juice.  They told us he wouldn't have much of an appetite but he ate the whole thing.  They also told us he would be really sleepy but that kid was fighting the tired like no other.

He spent some time at my mom's with his brothers and we stayed for dinner to see my dad after Al went to work for the night.  We didn't get home till the boys' bedtime but the Big Guy still had some homework to do.  The twins were great.  They kissed him goodnight and went to bed.  The Big Guy did his homework and then I threw him in the shower.  Figured there are all sorts of germs at the hospital so better late then never, right?  

When he was all ready for bed I gave him a big hug and told him how very proud I was of him for being such a big boy today.  And I felt teary.  He did amazing for being 5.  I'm not sure what tomorrow holds - how he will feel, if he will be sore... if we will notice any difference at all.  Right now?  I am just so incredibly grateful that we made it through this day in one piece.

Catching up

So it's been a few days since I last blogged. 

Saturday was the CVS Caremark All Kids Can Patriots Day we took the Big Guy to.  Amazing experience, that post is coming this week after I finish sorting through all the fun pictures and decide what to add to the post. 

Sunday we took the boys out to breakfast, got them new winter hats and jackets (you know, since it snowed the night before and all - in October!) and had lunch with Al's family. 

Monday was Halloween!  The Big Guy got all dressed up for his party at school, then I got the twins dressed up after school and we went to Daddy's office to show off their costumes.  That night?  The boys trick or treated till way past their bedtime.  We might just have enough candy to last until Christmas.  Seriously. 

And today was the Big Guy's pre-eval where they evaluated his current range of motion so we'll have something to go on after the Botox next week...what kind of changes, where to begin with therapy... my head is spinning a bit.  All I know right now, is that I am looking forward to getting a good night sleep tonight. 

Because today each time I turned around, there was a face like this behind me.  Times three.

Botoxing the Big Guy

No, this isn't a post about that crazy parent who supposedly botoxed her young child for a beauty pageant.  I will never understand why someone would do that.  Hell I don't even understand why adults do it to themselves.  I sure won't be one of them when the wrinkles someday start.

This morning Al and I made one of those really tough parenting decisions.  I guess it's a decision we really made last month, but today we made it official.  And I am scared.

As you know, the Big Guy has mild cerebral palsy.  While we have some wonderful doctors, we have also waited over 4 years to get an appointment with a certain specialist.  That appointment was last month.  After a long talk we decided to try botox injections for his leg, with a possibility of his arm as well.  It will never take the cerebral palsy away, but the hope is that since he is mild with a full range of motion to begin with, it will ease that tightness so he can move better.

Until a few months ago we had always been looking ahead to a surgery when he gets a little older to lengthen the muscles in his leg.  Trying the botox now will help to give us an indication if the surgery would be good for him in a few years.  The botox may or may not work.  For some kids it works for only a few months before they need it again.  For others it works longer.

We have a pre evaluation next week and the actual procedure the week after that at the hospital, where he will have to be put under.  While I don't necessarily like the anesthesia part, a part of me feels like it's the right thing so he won't know what is happening.  He's been through enough doctors and procedures over the years, he doesn't need this memory too.

One week after the botox we go back for a post eval where the doctors will decide if he needs his AFO - or boot as he calls it - back.  And what the physical therapy schedule will look like (which we had been able to stop for the last year).  There is even a chance he will need to be casted for awhile.  I think the potential of the casting is stressing me out already. 

There goes the end of soccer season, Thanksgiving, his birthday and Christmas even.  Inside I know it's better to do it now verses the warmer spring and summer weather, but the thought of what could come is killing me.  (Not to mention I don't want him to be that kid in school the other kids realize can't do as much.)  So far, he's managed to keep up with everyone.

Then again, if this works?  If it really works?  And he can move better and no longer even needs his boot?  It will have all been worth it.  It just feels like such a hard decision.  We have never kept the cp from him, he has always known.  It's really only been the last 6 months maybe where he has started to understand what it means, as he realizes there are other kids (like his brothers for starters) that have an easier time with things. 

If I could take this away for him I would in a heartbeat.  But that's not an option. 

This procedure gives us another kind of option though.  So I'm holding my breath and trying to figure out a way to explain something to him without going into too much detail.  And starting with prayers now that maybe, just maybe this will work for him.  I'll keep you all posted.