Thursday, December 31, 2009

Did I mention head size?

After Brayden was born, one of the biggest clues that things were not quite right was the size of his head. His head was little, not even on the chart, little.

The doctor asked, "Your other two children, did they have large or small heads?"

Me, "Their heads are big...really big."

Case in point: the boys needed helmets for their new ATVs. We headed to the store this week. We tried on the Youth Small, then the Youth Medium...not even close. Then the Youth Large and Youth XL, not even budging. They ended up with Adult helmets for their big heads.

Do they look like bobble heads with their skinny little bodies and giant heads (with the helmets)!?

Tuesday, December 29, 2009

Christmas for Brayden

If you think getting a gift for someone is hard...try finding something for Brayden. All of our great ideas we gave to family who got him some great things, anything with lights or music is good. We got him a soothing noise machine for his room (he loves the sound of the ocean).

With all of the hustle and bustle he did great. Seeming to find a nap whenever he needed it.

While he did great, it is still hard to not have him fully participate in Christmas. One of the best things about Christmas is having kids...all of their excitement...their anticipation of everything Christmas...their joy. Brayden is there, being good but no riping into the presents, squeals of joy, excitement about Christmas or running around with cousins.
I want him to know how exciting Christmas is and be in on the action.

He was in his own way. Some sweet moments:
Brayden's cousin, who is the same age as Brayden (only a couple of weeks apart), offered to push Brayden. She did great and he really like it. I loved it.

And Brayden with his Great-Grandmother, my Grammy, getting some snuggles by the Christmas tree...they just looked so cozy.

Thursday, December 24, 2009

The Unexpected Gift

Let me tell you about one of the most memorable Christmas presents I ever received (my parents will remember this one and get a good laugh out of it).

I was in high school. Just like many of us (if you are truthful), I survey the gifts under the tree days before Christmas. As an experienced gift looker, I kind of knew what was clothes or certain things that I asked for that year.

This particular year there was a gift...that I was obsessed with...I picked it up...It was heavy....About the size of the brick. Everyday I would take a look at that gift. What in the world could it be?

Growing up my dad NEVER, EVER, let us open gifts until it was actually Christmas day (or our birthday). For some reason, that year my dad let us pick one gift to open on Christmas retrospect I think it was to torture me.

Of course I went for the brick...dying to know what was inside.

I tore in to that gift...
Guess what it was...
It was a desk top set of dictionaries and thesaurus. Just what every teenager wanted. Boy was that a let down, a disappointing Christmas present (not to sound ungrateful mom and dad!). Dictionaries and thesaurus?! Really?!

Till this day, my parents still laugh about the brick.

As I was sitting down to write a "Christmas" blog, the brick came to mind and got me thinking. Brayden was certainly a gift that we obsessed about before he was born. Getting all the baby things ready, trips to Target or Babies R Us, digging out all of the baby gear and setting everything up. I would stand in the baby room surveying what we needed and what needed to be done.

Then came our gift. He was born and we were hit with a ton of bricks...not at all what we fact we were disappointed and hurt. All babies are a gift, right? What happened?

We have moved far past our disappointment, into being absolutely grateful for the gift of Brayden and everything that comes along with him. He is such a joy. His little life is shaping us, refining us and the same with his brothers. We are becoming completely different people because of him...better people...much more than we expected.

God sent us a gift that was unexpected but He knew exactly what we needed.

Christmas time is all about celebrating and of course the gifts. Most importantly the gift of Jesus. I pray that you find many gifts this season, ones that are not under the tree.

Even the unexpected ones can be amazing.

Friday, December 18, 2009

Luke sings

Luke is middle child but he finds his way to shine.

One of his favorite past times in singing...he loves to sing to Brayden especially in the car.

Check out our family blog for his recent preschool performance.

Wednesday, December 16, 2009

Quality of Life and Insurance

We have been waiting several months for Brayden's bed.

A hospital like bed, that doesn't look quite so hospital.
This is what we are trying to get.
It was denied in insurance and Medicaid...they say it is not a medical necessity. They said that maybe something like this would work (cheaper for them is my understanding).

It does not work. Part of the reason is that Brayden's arms and legs currently get stuck in the rails of his crib, even with a bumper. When Brayden is at the hospital, they put up big protective things around the bed rails to protect him when he has seizures. Not to mention, his head needs to be elevated, we need him to come up high instead of us bending over (hurting our backs) to tend to him, especially as he gets biggger...I could list many more reasons but I won't.

My big reason for wanting the first bed and not the latter is quality of life. Who wants a hospital bed in their house? Hospitals are not fun, we do not need to bring it into our home. The bed we want has all the features of a hospital bed and looks more like furniture.

The plan is to appeal the insurance and Medicaid. Add a physical therapist and doctor's letter of medical necessity...hoping that we get it.

Monday, December 14, 2009

The morning is not my favorite time of day

I am not a morning person...never have been and may not ever be.

Getting kids ready for school is a challenge. At least they can help get themselves ready.

Getting Brayden ready for school is a challenge.

Brayden needs to have his stomach suctioned for about 30 minutes. Then we do meds...I am measuring things out to the .25 ml and cutting little tablets into 1/4. Some medications go in the G-tube, others into the J-tube. Flush with lots of water.

I make his formula for the day. Fill to 13 oz of water, then 1 scoop of formula, 2, 3, 4...I am tired, what number was I on? Oh, 5, 6, 7, 8 and 1/2. Shake and shake, it doesn't seem to mix well. Set up the feeding pump and ready to use once he is at school.

Wash his face...he does not like it.

Get Brayden dressed...he does not like getting dressed. He cries and screams. His arms and legs are tight because he doesn't want to get dressed. I fish the shelves on one arm and then another. Fish his pants on. Jam his socks on, then his shoes...he curls his toes. Then try to put on his coat and hat. There is no hurrying to get him dressed, it is tedious.

Put him in his wheelchair. One buckle on, the other buckle on. Got backpack, feeding pump, rags, blanket.

Off to the bus at about 6:45 a.m. Ride the wheelchair lift down, wheel him down to the bus...all the while I am barely functioning cause I am not a morning person...trying to focus and get all the things done...still in my pajamas, large sweatshirt and shoes, hair a mess, old is a good look.
I come back inside and get myself together. I cannot forget to get Carter and Luke ready for school...and the dog is always in the mix.

Saturday, December 12, 2009

At the keto clinic

Our day started off slow...meaning slow moving traffic...we were on the road for 2.5 hours. My dad joined Brayden and I so it helped with the long ride. We were late for the appointment and then the front did not have Brayden on the schedule, so he needed to be cleared before going back. We ended up being about one hour late for the appointment.

We finally made it back. Talked with the dietitian and then one of the neurologist that heads up the ketogenic clinic. We went over Brayden's medical history. They talked about the diet. It requires 3-4 days in the hospital. Once home, weighing and measuring liquids to put into he feeding bag. Checking his blood sugar and urine.

Then we headed upstairs for lots and lots of bloodwork as well as a urine sample (oh that is fun).

The goal is to decrease Brayden's seizures...Brayden's neurologist is hoping that a by product of it could be to help decrease the vomiting if it is coming from some unknown neurological cause.

The ketogenic team did not declare Brayden a candidate for the ketogenic diet. Since he has had pancreatitis from an unknown cause and his chronic vomiting, it could make it worse but they do not know. They will talk with Brayden's neurologist and give us a call sometime next week.

It was a long day.

Thursday, December 10, 2009

Keto Diet

We are heading downtown to Children's for the morning. Brayden will be evaluated by several people to see if he is a good candidate for the ketogenic diet.

We have talked with most of Brayden's doctors about this one is sure if it is good to try or not.

The diet is a huge undertaking. It requires 3-5 day hospital stay to get it started and then constant monitoring after that.

I have lots of questions. I have not met anyone yet with a kiddo that has a G-J tube that has been on the diet so I have no idea how it would work for Brayden.

Pray that we will find some answers today or a clear decision about whether or not to do the diet.

Tuesday, December 8, 2009

Worn out

I am a person that prefers to be busy. I am much more productive with my time when I have much to do. I had no idea that life could be as busy as these last couple of years have been...and there is no end in sight.

I actually feel pretty good. We get a good night sleep almost every night (thank you Lord for three boys that have always slept well). Still there are days that I feel worn out.

Last week, I was having a good day. Got lots of things done, everyone was where they needed to be and I was right on task. But I had three, totally separate people ask me if I was okay. I mean really ask me with concern. One said I looked like I had been upset. Did I look that worn out? I didn't feel it.

Each time I got in the car and look at myself in the mirror. How bad are the dark circles? Are my worry lines looking more worrisome?

Have you ever noticed that when any POTUS (the official abbreviation for the President of the United States) starts their term they have dark hair but by the end of their term they are almost completely gray. The stress of it all actually ages them?

Is the stress of this life aging me?

For now, I will be stopping by the Clinque counter for some eye cream or learn how to do the smokey eye make up.

Saturday, December 5, 2009

Snow or not snow much

We take Brayden everywhere not really expecting him to handle things well. We go into many things ready to bail if Brayden becomes upset...he always does better than we expect.

Well this weekend we thought it would be fun to get our Christmas in the midst of our first snow of the season. It was a cold and very wet snow. All of us bundled up and Brayden was bundled so much I am not sure he could move. Worried that he might get too cold or uncomfortable we wrapped him in many blankets.

The snow came down and down. It was beautiful but how was Brayden going to do? He was in the double jogger...a bumpy ride down the paths to cut the tree. His brothers running all around throwing snowballs every moment they could. And Brayden loved every minute of it all...except his hat...not a fan of the hats. He was relaxed taking it all in.

He really does like being outside, whether by a campfire, on a boat, at a park or fair, farm, for a stroll and now in the snow.

You have to check out the family blog for all the pictures. It was fun!

Thursday, December 3, 2009

The young and old

This is Brayden with his Great-Grandmother. She just turned 91.

On Thanksgiving day, she was parked in a chair (since she needs assistance getting around) and Brayden parked next to her in his wheelchair (since he needs assistance getting around). Everyone around was busy talking, laughing and snacking on some before dinner treats. No one in the room where Brayden and Great-Grandma Sommerfeld were sitting.

Neither one of them talking...not much to say.

I looked in the room and saw that Great-Grandma had gently reached over to hold Brayden's hand. They sat there like that for quite some time.

I do not know how much Great-Grandma understands about Brayden but it doesn't really matter. Her sweet gentle touch, reaching over to Brayden...touched my heart and made me tear up.
It reminded me of a poem from one of my absolute favorite children's books, A Light in the Attic.

The Little Boy and the Old Man (for this blog we will say woman)

Said the little boy, "Sometimes I drop my spoon."
Said the little old [woman], "I do that too."
The little boy whispered, "I wet my pants."
"I do that too," laughed the little old [woman]
Said the little boy, "I often cry."
The old [woman] nodded, "So do I."
"But worst of all," said the boy, "it seems
Grown-ups don't pay attention to me."
And he felt the warmth of a wrinkled old hand.
"I know what you mean," said the little old [woman].