Monday, August 30, 2010

Did I mention that I am a control freak?

Yes, I like control and I am a perfectionist (not a healthy combination). My house is orderly. I like my closet to by organized by season and color (the boys too). I like food labels to be facing outward (still working on the spice cabinet, it drives me crazy). I am particular with the way I like things to be. I know every square inch of my house, including storage.
I would rather be the organizer of an event than an attender. I like to manage rather than be managed (Jeremy says this is his favorite trait of mine - seriously sarcastic). When packing for vacation, I am in control...I pack everything for everyone and usually pack the car as well.
I like control.

Having children, you obviously loosen that grip on control. This summer I tried to let the boys pick out their own clothes.
Brush their own hair.
Make their own beds.
It took a lot of strength not to make them change, for me to brush their hair and make the beds myself. Some days I did. Some days we had little tutorial on getting ready in the morning.
I not only feel the need to have control but to do things with a bit of perfection. If I cannot do it just the way I like it, then I would rather not do that at all. I have blogged about this before.

I like control. Funny thing is, I am NOT a control freak when it comes to Brayden. Yes, his medical supplies, closet, room are all meticulously organized but when it comes to Brayden, my little boy, I know I have no control.

I can easily hand over control of Brayden to God but everything else, I am white knuckled, holding on tight to it all.

I was sharing this with a friend quite a while ago (shout out to Kim R). What she said to me...well it hit the nail on the head. It was something like this...

It is easy to hand over control of Brayden to God. It is SO big and SO out of our control that there is nothing else to do but hand him over. Everything else we just fake that we have control when God really does. How much easier could things be if we handed everything over to Him?

Friday, August 27, 2010

Kidney stone, where did you go?

Brayden had another renal/bladder ultrasound this week.

When scheduling for it, the tech went through the things to do for the procedure. She asked how old Brayden was; I told her three. She proceeded with the instructions of two glasses of water right before the ultrasound and do not go to the bathroom.

Hmmm, I interrupted and told her he was only J-tube fed and in diapers.

She said never mind and just to bring him in...for once we had it easy.

Brayden did alright for the ultrasound, rolling him back and forth to get the appropriate pictures.

Then he and I waited in the room. The tech came back to say that the preliminary reports show little sign of a kidney stone but the doctor needed to look more thoroughly.

I have not heard the final report yet. I am wondering where that 9mm kidney stone went...

Wednesday, August 25, 2010

Good time at the Children's Museum

Brayden joined his brothers and cousins at a Children's Museum.
Brayden handled the day fantastic. All the noise from the children, a new place, touching and trying new things...he was such a big boy.

His little piggies liked the shredded tires (for fall zone at the rock climbing wall).

And he made friends with a frog.

Tuesday, August 24, 2010

Favorite place to be

is in his bed. Brayden loves to be in his bed.

On a rainy day, a string of Christmas lights can be such fun (his eyes are looking different directions when he may be trying really hard to look at something). He was having a blast hanging out in his bed. I walked in to find him all smiles.
Here's the thing...yes, he does love to be in his bed but I do not want him in his bed all the time. He would spend the entire day and night in there if we let him.
Some days the only place he wants to be is in his bed. He will cry and fuss; put him in his bed and he is content.

I do not want him to be a little boy who only spends time in his bed. He is a three year old boy. We have tried to keep him up and out during the day and only in his bed for nap and bedtime. Many days he would rather be in his bed and he lets us know.

Monday, August 23, 2010

Baby can Read

The advertisement for this product is on TV constantly, Baby can Read.

I have no opinion on it what so ever. However, Carter and Luke want us to get it. They suggest it all the time.

Why, you ask?

They want us to get it for Brayden. To help him talk and read. They are convinced that Brayden can use it.

I haven't explained to them that it is not really for him.

Thursday, August 19, 2010


This morning Brayden had an re-assessment for his waiver (something VA provides to those who require respite and/or nursing care).

The assessments are questions about diagnosis, medical needs, medications, developmental skills, etc.

Filling out the form, his diagnosis section is very full (since he does not have one diagnosis but a list of items)

Medical needs, full.

Medications, full.

Developmental skills...nothing. He got no marks for developmental skills. I consider his crying as communication but for the assessment it does not count. I consider him kicking his legs when he is mad as movement but that does not count (they are looking for rolling, crawling, walking, etc.).

Technically he performs at the newborn level. But I know he is a sweet and stubborn 3 year old boy. Who cries when he is unhappy, kicks his legs when he is really mad, sucks his left pointer finger and whines to get daddy to hold him.

Monday, August 16, 2010

I've Never...

Wanna play I've Never (the non-drinking version people!)?
Okay, my turn,
I've never carried around a urine sample in my purse.
Dropping off the kidney stone and urine sample, fresh from the house to the lab today. Lets just say it was not my first time (thankfully this time it did not include a stool sample).

Sunday, August 15, 2010

Great friends get their wish

Brayden and I had the privilege of joining our little friend Daniel for his Make-a-Wish party. Oh it was a treat!
Daniel has been fighting a brain tumor for several years. The tumor has brought along many challenges, like vision impairment and feeding difficulties. Since Daniel is not able to travel much, his Make-a-Wish was right at home...a special bean bag chair (with vibration and surround sound), lots of braille toys and many other learning devices.

To watch him explore his new things was so precious.

I adore this family. They love the Lord and trust Him so deeply. We pray for them and they pray for us.
I know that we can laugh together and cry together...all about our crazy, abnormal experiences. It was wonderful to be a part of his big day.

Friday, August 13, 2010

Kidneys and sleep

Brayden visited the nephrologist. Brayden kidneys are doing fine but he is having problems with kidney stones. The ketogenic diet and one of Brayden's medications could be the cause but not sure yet. Brayden will be getting regular renal ultrasounds and urinalysis (every three months or so). He will be starting medication and an increase in fluids to help.

I did keep the stone that he passed in a ziploc bag safely tucked away in his icky as I thought it was to keep it, the doctor actually asked me to bring it to the lab!

Meanwhile, Brayden's neurologist called with the results from the sleep study. Brayden has obstructive sleep apnea. The are three possible causes of this: low tone, large adenoids or large tonsils. Brayden will be seeing an otolaryngologist (the ENT). Large adenoids or large tonsils could mean surgery to remove them. If it is just low tone, they will look into other options.

Wednesday, August 11, 2010

Try to paint

Brayden has done finger painting at school. I thought we could try a paint-your-own-pottery studio. Carter and Luke would have fun and it would give Brayden something to do as well.

Brayden did not enjoy the painting. Perhaps the studio was too loud, too many people around, the paint was too cold, he does not like to paint...

Tuesday, August 10, 2010

Taking care of ALL my boys

I was reading a fiction book this week about a mom with two boys; one with special needs and the older brother. The mom promised the older brother a night out for Chinese food but their plans were derailed because the special needs brother had a major episode. After the mom helped her son through his "episode", she came downstairs to find that a cereal bowl was in the Chinese food, he had cereal.

While that might not seem like a big deal. To me it is. Brayden's needs tend to be our first priority, he needs everything. Carter and Luke are certainly understanding about it all.

Last night was Carter's first tackle football practice. Jeremy is coaching Luke's team, on a nearby field. I was home with Brayden because it was too hot and past his bedtime. Carter was at his practice by himself. We thought he would do just fine.

That is not what happened. Carter told the coach he was feeling sick. Carter ended up sitting out for the majority of his first practice, after a while he was laying down on the sideline (completely out of character for him). Another mom tended to him and walked him to Jeremy's field.

Was Carter nervous for his first practice, bothered that his parents were not there or really sick? Either way, I was not there for him. Jeremy brought the boys home. Carter was visibly upset, I took his temperature and it came up about 101.5 degrees. He was not feeling well.

Jeremy and I felt terrible that we were not there for him when he needed us. I know that it is just a little thing and he may soon forget. But there are so many little things where Brayden ends up being the priority. My heart hurt last night, I love my boys oh so much and never want them to feel alone or second tier.

I will be at Carter's practices and Brayden will make do.

Carter (and Luke) can have Chinese food, instead of cereal. I will be there for him.

Sunday, August 8, 2010

This is what happens...

...when we forget the wheelchair.
A little adventure to a Grandpa's historic farm and we made due with the car seat. Brayden looks thrilled right?

Watch out, mommy and daddy take the opportunity for some Brayden torture...we thought he would like it. We strapped the car seat in for an off-roading adventure. He did not enjoy it, it made he cheeks jiggle too much.

I have to be honest, sometimes I just get tired of remembering all of his gear. Sometimes it is not too much stuff and a lot of days we have his nurse to help but I have never been the mom who likes to take all of the gear. One of the things you look forward to when your kids get older is just going. Just going to the store, a movie, a day trip, a day of gear packed up for Brayden might as well be for a week.

The loading and unloading of the car, seriously the kid needs his own personal bell hop. And sometimes we forget a wheelchair, which thankfully rarely happens.

Yes, we want him to be comfortable but everywhere we go, it feels like we are moving in!

Friday, August 6, 2010

Brayden's contact list

I am sitting down this afternoon to work on scheduling things for the fall. First I am pulling my list of all of Brayden's doctors and figure out when we need to see them.

Brayden's list:

Primary ones, meaning ones we see way too much
  • Pediatrician (the file is Brayden's from the ped's office...obnoxiously huge)
  • Neurologist
  • Gastroenterologist
  • Nutritionist for Ketogenic Clinic
  • Neurologist for Keto
  • Now adding Nephrologist
  • See the people at the lab, for blood and urine work ups, way to often

Additional (meaning ones we see every 3-6 months)

  • Orthopedist
  • Orthotist
  • Opthamologist
  • Neurogeneticist
  • Radiologist (changes out the G-J tube)

Others (now, only when needed)
  • Cardiologist
  • Endocrinologist
  • Pulminologist (for the sleep study and monitoring, at least is what I have been told)

I cannot forget to mention the Pharmacist, he is a great one. We see him, on average, every other week. Brayden meds are always being adjusted.

My favorite things is when Brayden is at a new place and they ask for medical history and doctors.

Wednesday, August 4, 2010

They will be so much better because of this

is what Jeremy's Grandma Jenkins said to me last weekend.

She was referring to Carter and Luke's exposure to those with special needs. Not only with their brother Brayden but with many others in our life.

Jeremy's Aunt Janine is 50 years old with down syndrome. The boys think she is a blast! Here are Luke and Janine at the fair making their silly faces for the camera.

Later that weekend we headed to our friend's house for pizza and the pool! Not only do they have some fun kids but one has down syndrome. We have known them since the early married days.
Along the way the Lord has placed many people in our life who now have special little ones.

The Coleman family; one of their daughters is in Brayden's class at school, Jeremy has known her dad since grade school. And her mom just finished a children's book about her daughter, I am Justice, Hear Me Roar! Carter and Luke love hanging out with her brother.

All families that we see on a very regular basis.
Other families we may not see often but our boys pray for and of course partied with!

The Pfaffs, who were meet when we were young married couples.
The McNeils who we knew in college.

Not mention other families we have meet along the way through school, doctors, etc.

Carter and Luke's world have been expanded by being surrounded by so many different children. Of course my world and heart has been expanded beyond anything I ever thought...

Monday, August 2, 2010

A little thoughtfulness goes a long way

I have a friend, Laura, whose plate is incredibly full with her son who is battling a brain tumor. Yet she takes time to send me notes and little gifts in the mail. Always such a treat.

Another friend of the Jenkins family, Elena, has delivered (on multiple occasions) a little pink box with a black and white sticker. A couple of years ago, we stumbled upon a humble little bakery that I came to enjoy. She remembered that I have a love for the yummy treat inside. Want to guess what the place is? A big hint...they just got a show on TLC.

Many others have provided food, goodies, emailed us, dropped a note in the mail or called (I have mentioned before that I have the best neighbors). All mean so much.

Today, I dropped the boys off at soccer camp. One of the soccer coaches (who is fresh out of college) helps out with soccer during the school year with Luke's age group. The past year Luke was not with his age group because he was playing up with Carter. The soccer coach thought Luke would certainly be there because we hardly miss a day of soccer. This guy had always been so kind to Brayden, always talking to him. This morning when I was dropping Carter and Luke off for camp, he told me (called me Luke's mom since he has no clue what my name is) that during the season he carried around an extra soccer shirt to give to Brayden but he never saw us. I told him that I really appreciated his thoughtfulness. Soccer dude, that was thoughtful and never expected.

a little bit goes such a long way.