Wednesday, August 31, 2011

School Schedule

This year Brayden will be going to school Mon, Tues and Thurs at Catoctin Elementary in Leesburg, which is not our community school of Waterford where Carter and Luke attend.

The bus ride is about 20 minutes.  His bus arrives around 7:00 a.m. at the end of our driveway.  Only one other child is on his bus (who is not in his class).  Then in the afternoon, his bus arrives home around 12:15 p.m.

Brayden is in the same class as the last two years.  But a bit of a change this year.  There are only three children in the class so far this year.  A new teacher, who was an aid in the classroom.  A returning aid and a new aid, who is came over from the room next door.  3 adults and 3 children (all boys).

Brayden receives physical therapy and occupational therapy once a week.  And has speech and vision therapy as consult.

Our goal is for Brayden to go to school on Wed as well.  We will see how he does for the first semester then discuss adding the fourth day.

I like the routine of school for all my boys (and myself).  Brayden gets to participate in fun activities that bring out a different side in him and help him mature and learn in his own way.

Second day of school:
1.  Major blowout diaper, came home with different clothes on.  I opened his backpack to find out why...and it was not pretty.
2.  He had art!  Did a little finger painting.  Oh how I love it!
You can see how tired his eyes are when he arrives home.

Tuesday, August 30, 2011

Brayden's thoughts on school

First day of school went pretty well despite the chaos of the morning.  The report from the teacher was that he did just fine.  He did cry all the way home on the bus.  I wheeled him into the house to find out his thoughts on his first day.

I did not get a good reaction to asking about the bus but I did to asking if he wants a nap.
from Carrie Jenkins on Vimeo.

Monday, August 29, 2011

First Day of School 2011

A bit of a chaotic start to the first day of school but Brayden made it there and seemed to be handling it all in a stride.
We made it outside for some pictures.
The bus finally arrived and Brayden was loaded onto the lift.  He closed his eyes if in denial that he was going on the bus yet again. 
I met him at school, he did fine on the bus, was in the auditorium for the entire school first day assembly and then back to his room.  Not quite awake yet but seemed fine to be back at school.
I was already missing him last night.  Having all my boys at I got some extra cuddles before bedtime.  I cannot wait to find out about their days.

Friday, August 26, 2011

We had Ice Cream

Carter and Luke's Ice Cream for Breakfast party was a hit!

We had a wonderful time with friends in our wonderful community of Waterford.  Lots of ice cream was scooped.  Lots of toppings.  Lots of fun.  One little boy confessed to me that he had 4 bowls of ice cream!
Carter and Luke spent many hours preparing for the party.  They sat with our photo book looking through pictures to hang up at the party to share about our time with Give Kids the World.  They went to the craft store with me to find decorations. 
They decorated a box for donations. 
Carter helped prepare most of the food, rolled a lot of crepes.  Luke was in charge of getting the candy ready (wonder how much he ate...).  Then they both worked on a menu.
They selected items from Give Kids the World to give away as prizes.  They set up lots of games in the backyard to play with their friends.
We had many, many friends come.  It looks like over $2,000 was raised for Give Kids the World.
It did rain that no outside, no pool...everyone inside.  Still having fun. All of the kids playing in the basement (which was not a total mess, maybe so many kids there was no room to get things out).  All of the adults in the kitchen.  Brayden in a side room, where it was quiet out of the chaos handing with some of his special friends.

Monday, August 15, 2011

Ice Cream for Breakfast

Here is how we are having Ice Cream for Breakfast.

What to do with the kids all summer long?  Clearly a question that any mom asks herself.  I try my best to find fun and new activities to do with the boys.  On those days at home, we all try to find creative ways to play.

One morning, while I was working at the computer, I saw Carter and Luke running up and down the front stairs.  Each time carrying something out to our great room.  They kept it a secret until everything was complete.

Then I was invited in.
They set up a store.  Carter, meticulously organized things into categories while Luke gathered the items.  They even set up a computer and "money machine" (as Luke said).  Both boys insisted that we invite over friends to purchase items in their store.
They gave me a tour of the room.  Then it came time to show me how they were collecting the money.  They had a box.  A box for the money to help "sick kids like Brayden".  They wanted to sell the items to help others.

I remembered an update I received from Give Kids the World about the Ice Cream for Breakfast campaign (It really took place in July but we could not get it together by then).  I explained to the boys that the store was not going to work but we could have everyone over for Ice Cream for Breakfast to help send money for some sick children.

If you remember, Give Kids the World is the village where we stayed for Brayden's Make-a-Wish trip.  Probably one of the most precious, memorable places I will ever be in my life.

As a result, we are planning to host a Ice Cream for Breakfast party here at our house for our wonderful Waterford friends.  If you would like more information just email efcarrie at aol dot com.

Or you can give in honor of Brayden!  Give a scoop.

Carter and Luke are thrilled.  We asked for a Ice Cream for Breakfast tool kit.  Once the tool kit was delivered, the boys have gone through it so many times (so much that I had to put it up).  We want to give back to a place that gave us priceless family memories.

Saturday, August 13, 2011

Small Talk

I definitely consider myself to be an out going person.  I feel comfortable talking to just about anyone from little kids to the President (not the current one, I have not met him).  I like talking and even prefer talking rather than email or texting.

However, small talk has proven to be difficult lately and I am sometimes left feeling awkward and inauthentic.

Typical small talk...
Hello.  How have you been?  So what's new with you?  How is the family?  What are the kids doing these days?

I answer the best I can and usually divert the conversation towards Carter and Luke's activities or about school for all three boys.
A couple of weeks ago, we ran into some old neighbors, our nice neighbors, while at a local pool.  We went through the typical small talk and trying to catch up.  Brayden was post hospital just by a few days and pre more doctor visits, etc.  How can I answer those small talk questions?  I do answer them but in a very generic way.  Do people really need to hear or know all the medical things that consume our life?
I have yet to find a good answer to:  How is Brayden doing?
That is a loaded question. If they look close enough, clearly he has a lot going on.

The vast majority of the time, I make things sound as optimistic as I can muster up (enter the inauthentic feeling).  I never know if someone wants to know or if it is just questions to be polite.  I never feel quite sure how much information to give...all of Brayden's things sound so medical/technical that feels like most people could not understand and I cannot fit into a nice sound bite.

However, sometimes those small talk circumstances can turn into something great.  Last week while loading Brayden and his wheelchair into the car, I met a women who has been in a wheelchair for over 25 years and she herself was a special-ed teacher.  20 minutes later and I felt encouraged.

Another time I met another mom, while bargain shopping, who was a mom to a special needs daughter.  Just an instant connection.

Questions, never bother me.  I just want to navigate the small talk better.  And you never know, sometimes God places certain people in at the right time for a good talk.

Wednesday, August 10, 2011

Botox done

Brayden and I headed downtown to Children's early this morning, after a long night.

Had to change his feeding from his keto formula mixture to water at midnight.  Then all medications and water flushes had to be done before 5:00 a.m.

On the road about 5:30 a.m.  Brayden slept in the car and while we waited. 
The TV was stuck in our room on one channel in one position.  I watched Beauty and Beast (probably a favorite Disney movie of mine, oh if I could walk around a sing like Belle...)
Arrived for paperwork and pre-op.  Talked with doctor and answered all those questions for the nurses the anesthesiologist.  Then they wheeled him in for the procedure.  Just as they were giving him the gas for sedation, he went into a lovely seizure getting his arms caught in the rails of the hospital bed.  Seizures was done and gas mask on, he faded away into a deep sleep and I headed to the waiting room.

Great thing about the surgical center at Children's they give you a pager so the staff/nurses/doctor can reach you.  Then in the waiting area a large screen posting the status on your child; listing if in OR, what time they went in and when it is completed (Brayden is the very top number).
The Botox was done in about 20 minutes, Brayden woke up about 45 minutes later acting normal.  The nurse watched him a bit longer and then we headed home.
Botox in both hips, several in both hamstrings, a couple on the muscle on top of both his shins, one in each foot, and one in each arm.  So far he does not appear to be in any pain but lots of little red dots from the injections.

Botox is done now the concern is his right hip.  Even under sedation and after the Botox, the doctor could not get his hip in the proper place or straighten his right leg, not even close.  So in a few weeks Brayden is scheduled to see the doctor would did the Botox (a Physical Med and Rehab Dr) with the orthopedic surgeon to really understand what is happening with his hip.

Thank you for your prayers.  He handled the sedation great and the Botox seemed to go smoothly.

Sunday, August 7, 2011

I am okay and Brayden

Yes, I am doing fine.  Last week was not my best week.  A summer that was supposed have only one doctor appointment for Brayden has turned into much more.  I feel overwhelmed at times but cannot even take the time to be overwhelmed because I have to be on my game at all times.

Brayden is going in for Botox in both legs, on Tuesday Wednesday.  He will be sedated.  Since he now has listed on his file, respiratory failure after a procedure (happened back in the spring), they take procedures WAY more seriously.  Although it was my understanding he went into respiratory distress because of having two procedures, being intubated for both, in a matter of a couple of days.  He has been sedated more times than I can actually count and only one time had problems.  Anyway, Brayden had to have a pre-op meeting.  Not over the phone like we have had before, this required a full trip downtown to Children's...a  2+ hour drive in traffic in which Brayden SCREAMED the entire way.  Then at the appointment he went into a big seizure that he could not shake, so we gave him Diastat (emergency seizure med) and we waited.  It lasted about 30 minutes.  We were about to take the elevator straight to the ER and then he came out...we left the hospital knowing that if he went back into the seizure we would pass two other hospitals on the way home.  I had to rush back to get Carter and Luke from camp.

Brayden was also fitted last week for a DMO suit.  This is a full body suit, like a short sleeve and shorts wet suit.  The idea is to provide much more stability to his core and help align his spine.  I cannot even begin to explain it because I have yet to see one (you can check out this link, if you are interested).  It required a lot of little tiny measurements.  It will have snaps at the legs for diaper changing and flaps on his stomach for his two feeding tubes.  The goal is for him to wear this suit all day, only off at bedtime.  It sounds like a big pain but if it helps Brayden, we will certainly use it.

Then the vomiting....honestly I am just going to get him past the Botox procedure and then really talk to the GI doctor.

On top of things, my birthday was last week, which was just another day.  Carter and Luke started their football season (practice every night), my car had big troubles and I spent quality time with the AAA guy because I could not even make it to the car shop...I felt like I was loosing myself in the chaos.  And if I had one more person tell me they were tired, I was going to loose my cool.

Being a mom is a full-time job, any mom knows is not something that ever stops.  On top of that, being a mom to a special needs guy...well, it is all consuming.  I operate at a level of stress that is just always there, sometimes it feels like it is just too heavy or times it is just "normal".

Wednesday, August 3, 2011

I am tired

I am tired this week.
Tired of dealing with medical things.
Tired of making phone calls for all of Brayden's things.
Tired of being the ONE and ONLY person to make major medical decisions for Brayden (botox, vomiting)
Tired of Brayden vomiting all day long and through the night.
Tired of pulling the car over to take care of Brayden's vomit.
Tired of Brayden screaming in the car for no apparent reason.
Tired of being the ONE and ONLY person who coordinates all facets of Brayden's needs.
Tired of coordinating between Brayden's needs and Carter & Luke.
Tired of cleaning up after people.
Tired of not being able to catch up with laundry between the vomits, pool clothes, sports, regular laundry.
Tired of coordinating every one's schedules and needs.
Tired of disciplining the boys about the same things over and over again.
Tired of being the person to not only fix the problems but have to know how it became a problem to start.
Tired of every minute of my day being dictated by someone else's needs.
Tired of feeling like I come last.
Tired of taking care of everyone, when it feels like no one takes care of me (including myself).
Tired of counting on people that I cannot count on.
Tired of asking for help.
Tired of needing help.
Tired of feeling like I inconvenience people.

I know these feelings will pass, I will continue on with everything I do and everything I need to do...just having a down week.