Tuesday, September 29, 2009

Let me complain about Dr. offices...

We spend a lot of time in and out of doctor's offices. Today we were in one. We waited a long time so I had time to think...

I have come to know the parking areas, walk-ways, elevators, bathrooms, waiting rooms, triage (or whatever they call the room before the room), and patient examination rooms.

If I ruled the world, or at least ran of doctor's office/building here is what I would do:

1. Valet parking, everyone should have valet parking. The parking lot for us to today was terrible, it is always terrible. There is a petition circulating at this office complex demanding more attention to the parking problem. This particular parking lot has brought me to tears before, made us late many times even when we have arrived before the appointment time and even been yelled at by a "sweet" old lady jockeying for a parking space.

If not valet, need more handicap parking (and people that actually needed could use it). I need space to get Brayden in and out of his wheelchair without being in fear for his life or at least knocking another car with the door or wheelchair.

Also, for those waiting for me to back out of my parking space, be patient. It takes some time to load Brayden in, get his feeding pump situated, buckle him and load his wheelchair. Staring me down or flashing your lights is NOT going to make me move faster, it will only get me flustered and take more time.

2. Walkways need to be that...walkways, not extra places to park nor places that mean speed up. For those driving they need to let people cross the walkways, remember pedestrians have the ride of way.

3. Elevators that have the doctor office listing inside it, so many get lost just riding the elevator. And please make sure those elevators work and do not creek...I cannot handle a creaky elevator.

4. Bathrooms...hmmm. I was chuckling to myself today when I was rolling Brayden into a "handicap accessible" bathroom. The door was huge and extremely heavy. I had to prop the door open with my bum and hoist Brayden in his wheelchair, over that awkward bump in the floor transition. Then coming out, well I almost took off my ankle with that heavy door.

5. Waiting rooms are never fun. Lots of people around and waiting. Most of the doctors we visit have a very strict policy of arriving for your appointment on time, if you are 15 minutes late, they will cancel your appointment (even if you have been driving in a terrible NoVA ice storm and it has taken 2 hours to get there). They will cancel it. Rescheduling for the specialists are at least 3 months out. So why doesn't it apply the other way around? Today we sat and waited and waited 45 minutes after our appointment time. That is incredibly frustrating and happens more often than not.

6. Triage - where they do height, weight, temperature and blood pressure. I have one request...please get a scale for disabled children, ones that cannot sit up on their own, a scale that will hold them. I DO NOT enjoy standing on a scale, weighing myself, then weighing me holding Brayden to find out how much he weighs. Not fun.

7. Patient examination rooms are always boring and give a false sense of hope. Hope that is in thinking the doctor will be in soon. Finally you make it back from the waiting room and then sit in the exam room, waiting.

I am done with my complaining. I feel better. Till the next appointment.

Monday, September 28, 2009

Brayden's 1st Art Project

Brayden did finger paints at school last week. It was his first experience with anything like that...and it seemed as though he did pretty well. It came home with him today.
This has to be the best thing to ever come home in a backpack!
This will be framed for sure!
Brayden's 1st artwork...

Friday, September 25, 2009

What are you thinking?

Being a parent of a non-verbal child is hard.

Hard to know what they are thinking, what the want, what hurts, how they need help, what they want to do.

Sure we get ques from him. It might be a little head nod or a kick or even a cry. But it always leaves me wondering what Brayden is really thinking.

Is he telling daddy to hold him more? Is he telling Carter to read him more books? Is he telling Luke to be quiet? What is he telling me?

I am sure that Brayden understands much more than he lets on. While I do not think, he thinks in a completely coherent way or even the same as other 2 year olds, he does have opinions and thoughts about his world and however he processes it.

I saw the video about a non-verbal autistic girl. It is extremely different from anything Brayden is dealing with other than being non-verbal but it certainly makes you realize that these children are in there...some where, wanting to make it better and be understood.

Dare I say...

...we made it through the week. Everyone where they need to be, the right place, the right time. Everyone at school, no phone calls, no one crying (including me).

We made it through the week...without any events! Uneventful, I like that.

Wednesday, September 23, 2009

From the big brothers

Carter is almost seven, Oct 8.
Luke is almost five, Nov 30.
They will both let you know that.

They are wonderful big brothers to Brayden. We get lots of comments, thoughts, questions from them about Brayden. Usually at times that we are not expecting them.

Carter hits us with the big questions.

Sitting around the table in a local Chili's with some family, over some chips and dip, Carter whips out this one...

Why did God make Brayden blind?


Luke, well you never know what is going to come out of his mouth because whatever thought he has, he speaks it. One of our recent conversations:

Me (with a loving scream):

Luke (in a very calm inquisitive voice):
Which hospital? The one with video games!? Is it the one with the big cabateria (how he says cafeteria)!? You know that they have ice cream and chips there?

These are glimpses into their personality and how they interpret Brayden's world.
There will be much more of this to come!

Monday, September 21, 2009


During a weekend nap on a family room couch, Jeremy dreamt that he looked up and saw Brayden standing at the top of our back staircase landing.

When he told me about his little dream, my stomach turned. It just seemed unsettling to me. I feel like the Lord protects my thoughts in even letting my mind wander to if Brayden was a "normal" two year old, running/walking all over the house. I rarely think about it. Even if my mind starts down that road, I try to put it at a screeching halt. It does us no good. Brayden is who he is...who God created.

Although I did try to imagine what image was brought to Jeremy's mind in that dream.
Brayden is one long, lean little guy.

Thursday, September 17, 2009

Easy in, Easy Out...not so much

Yesterday morning, we realized Brayden's G-J tube was cracked. His G-J tube is the only way he gets food/fluids. Having a crack in it is not good. We immediately called the doctor. They got him in with the Pediatric Radiologist that works with the G-I doctors.

Brayden's G-J tube has been changed out many, many times. We know the routine. Brayden on the table. Large wire into the tube. Deflate the water balloon that holds the tube in. Old tube slides out with wire as the guide. New tube slides on with the wire as the guide. Water balloon is filled. Tube fixed in place. Done.

This time....as they were pulling out the old tube, the realized the new tube was not the correct length. It was almost 6 inches shorter and that is a big difference. Brayden laid on the table, with a big hole in his stomach, for a bit, while they got the proper tube.

The new tube was put in to place but was having some difficulties, then more difficulties, then more difficulties. His intestine did not want the tube. Once it started to go in, it would shoot back out. And I mean shoot out. The tube would come shooting out of Brayden's stomach on to the table. Or it would coil up into his stomach. Not good.

A 5 minute procedure (if that) was probably 75 minutes and that is only when I started watching the clock.

The radiologist worked and worked to get it to stay in place. He was actually starting to sweat! Several times, he said he did not know what to do and may need to stop. Yikes! I was concerned that Brayden was going to be admitted to the hospital. Things were not going well.

I just prayed over and over, Please get it in, please get it in, please get it in. I do not want him to be in the hospital again.

Finally after a very, very slow placement of the tube, his intestine and stomach were fine and the tube stayed in place. Brayden laid on the table for a bit more for the doctor to watch the tube and make sure it would stay. It did and we were sent home.

That was the most stressful tube change we have ever had.

Amazingly the tube being shoved in and out of Brayden's stomach only upset him a little bit and actually slept the last half hour of it. I, on the other hand, was a bit more upset than him.

Tuesday, September 15, 2009

All in School

Today it happened.

For the first time ever, all of my boys were in school. Carter in 1st grade, Luke in preschool, Brayden in special ed preschool.

I was alone. All by myself for a few hours.

What to do?

I went out for a coffee. A pumpkin spice latte from Starbucks was calling my name.

I had no one calling my name. No, Mommy? Or MOMMY!

No school calling me to get Brayden, huge relief.

Just me, a coffee (oh and a slice of pumpkin bread, I love anything pumpkin) and silence.

I missed my boys.

Monday, September 14, 2009

I tried not to go but...

So I tried not to go to Brayden's school today but that did not happen.

After being at school for just over one hour, I received a phone call. Brayden was having too many seizures for their liking.

Choice: I could come pick him up immediately. Or they would give him medication and call for an ambulance. Hmmm. I rushed to the school no need for an ambulance.

I arrived at the school to find that they just started their first fire drill for the year. I waited (with Luke) out by the flag pole with other school staff. Brayden was some where on the other side of the school. Finally the fire drill was over and everyone was filing back in to the school. I headed to Brayden's classroom to find him in yet another seizure and looking completely wiped out.

Just this morning I sent a note in to the teacher with a chart requesting her to document his seizures and vomiting so that we were better informed and could keep Brayden's doctors informed. She handed me the chart...he had 10+ seizures and one vomit since being at school. He arrived at 7:50 a.m. and it was now 9:40. I would say that is a lot of seizures in a short amount of time!

I brought Brayden home and gave him some medication. He is sleeping heavily and will hopefully wake up refreshed and back to his baseline.

Sunday, September 13, 2009

Shake it off

Brayden's seizures have been really bad the past several days. He usually has 2-3 seizures a day that last about 10-30 seconds. He has been having 7+ seizures a day that are lasting way too long for my liking.

I feel absolutely, positively, HELPLESS when he has a seizure. Nothing I can do to make it go away, snap out of it, shake it off or comfort him. He is completely lost in his seizure.

Several times this week, I have broke into a sweat over one of his seizures. They look worse and are lasting longer, not to mentioned happening more times in a day.

Not sure why...could he be sick, tired, growing? I do not know.

Back to the neurologist...oh those visits are always fun.

Thursday, September 10, 2009

Second day of school

Brayden attends school on Mon, Tues and Thursday so today was he second day of school. He did much better on the bus today. Although when I was telling him the bus was coming, especially when he would hear the bus and they started loading him, he had this look on his face like he was perturbed about the bus. His brows were furrowed and his bottom lip out a bit, with a look of concern about this whole bus thing.

He did not cry on the bus and when he arrived at school, he slept for the first hour. They woke him with a song and noise makers during the class circle time. Today he worked on sitting in a new chair (not sure what the chair is yet, I did not see it) and he did some work with switches. He did start to cry on the bus during the drive home, once him came inside the house he stopped. Then toke a long nap.

Yes, I did go to the school again today. I promise I will not go everyday, even though I want to.

Yes, it is was still hard to see he ride away in the bus.

It is hard for me to adjust to this. My thought is that is has to be overwhelming for him. He cannot see so he relies on his other senses. Do you think the smell of a bus is comforting? Or the sound of strangers, the bus driver and aid? Then going to school, still a new place with new noises (and probably smells). Asking him to trust these complete strangers. Who knows how he processes all of this.
I know he will get the hang of it soon, as will I.

Tuesday, September 8, 2009

Brayden's 1st day of school

*Warning this post is filled with lots of photos!

I cannot believe today finally arrived. After all of the emotions, planning, paperwork, meetings, etc. Brayden started school today. He is in Special Ed Preschool at a local elementary school. He attends Mon, Tues, Thurs from 7:50 a.m.-11:50 a.m.

I did not sleep much in anticipation of today. I checked through all of his gear several times, his personalized backpack.

Jeremy stayed home this morning and fixed a big breakfast. Then we headed outside (in the dark since the bus comes at 6:58 a.m.) for pictures.

The bus came to the bottom of the driveway and we loaded him in. I gulped down the sobs welling up inside of me just long enough to talk to the bus driver. Brayden is the only child on this bus in the morning. As we watched the bus drive away, Jeremy and I let the sobs flow. It was really hard to see him drive away (he has only ridden with one other person, once). Here it was, our reality, the special bus going to special ed with our special little guy. Jeremy and I held each other, sobbed some more and then got Carter ready for his first day of 1st grade.

Luke (who starts preschool next week) and I headed to Brayden's school. I needed to show them how to use his G-J tube and feeding pump. When I arrived they told me that he screamed the entire bus ride and for a while after arriving at school, they called the nurse who came and ended up hooking up his feeding pump (from my printed instructions that I put step by step with photo for each step of how to use...obsessive I know). He calmed down. I did not stay too long because it seemed as though when he heard my voice he started fussing again.

I headed home and waited for him to come home.

When the bus arrived, he was sound asleep and on the bus with his friend Justice. I think his first day of school wiped him out. He had the best nap he has had in a long while today.

Sunday, September 6, 2009

911 to church

Sunday morning is usually hectic for those families heading into church and attempting to be on time. Running around making sure everyone is clean and feed always seems to be more of a task on Sunday mornings.

Brayden takes us a while to get ready. A half an hour on the suction machine, getting and giving medicines, bath, getting him dressed and making sure we have the proper gear packed for him, all adds up to a serious amount of time.

We all load in the car and headed to church this morning. Brayden seemed uncomfortable for most of the ride. He seemed to be squirming. We thought it was the sun bothering his sensitive eyes and he wanted to sleep. When we arrived at church, Jeremy pulled him out of the car and Brayden did not change positions; left arm and leg curled up, shaking them up and down. He was having a seizure. We assumed it would pass but it was not. I then administered his Diastat, a rectal dose of anti-seizure medication. Of course he pooped right after giving it, some was absorbed but not much. And he was still seizing.

Trying to assess what our next step should be we decided on a call for an ambulance. I called 911, Brayden seemed to come out but then quickly went back into the seizure. I asked the 911 dispatcher to have them not use the sirens in hopes that it would not draw to much attention to the situation or disrupt the church service. Apparently, they have to use the sirens.

So the firetruck and ambulance came blazing in to the church parking lot. Brayden was loaded, seemed to come out of the seizure but then went back in. The closest hospital was only 5 minutes away and a small local one that Brayden has not been to.

Brayden seized for the ride and when getting him situated in the ER. Shortly after arriving though he broke out of the seizure.

The seizure lasted for about 45-60 minutes, his usually last 10-30 seconds.

The ER staff seemed a bit nervous and we were too since they needed blood work and an IV. Brayden veins are shot from being in and out of the hospital the past few weeks. After a couple of sticks, they go the blood work and IV. They gave him a dose ativan (something similar). Brayden was doing fine. The doctor ran some blood work, chest x-ray, talked to Brayden's neurologist on call and everything was fine.

Brayden was sent home. Right now he is just tired from a long seizure and the heavy medications. Thankfully those prolonged seizures do not cause he much harm and he quickly recovers.

Our Sunday was much more hectic than just rushing to church, Brayden was rushed to the hospital. Oh boy.

Seriously, an ambulance to the church?! Really?!

Saturday, September 5, 2009

School Open House

It was time for Brayden's school open house. His school is a local elementary school (not the one Carter attends) that has classrooms for special education preschool. We visited the classroom. The teacher and two teaching aids spent time with Brayden, holding him, talking with him and finding items in the classroom that he might be interested in. Brayden did really well and even showed off a bit.

On Tuesday morning, a bus will arrive at our home at 6:58 a.m. for Brayden. There was a mix up on the bus so for now he will have his own personal bus in the morning, he will be the only child on that bus. School starts at 7:50 and ends at 11:50. It will be a long day for Brayden but sure that he will quickly adjust.

Carter and Luke came along. The teacher and aids were great with them asking them to help pick out things in the classroom that Brayden would like.

Brayden has his little tote tray and other things ready for him in the classroom. I cannot believe school time is here, my hands are sweaty just typing this! He will be a big boy on September 8, his first day of school!
Of course me trying to prepare him for school dropped off several things with the school nurse (still unsure about his G-J tube feeding and his vomiting at school). And we put together pictures and notes about Brayden for the teacher and aids to understand him a bit more.
We are ready (or at least trying to be)!

Thursday, September 3, 2009

A day at the park

I have been promising Carter and Luke that we would go to this park all summer. With everything going on we have not had much time. Since Brayden had a good day yesterday, I called up some neighbors and asked them to join us at the amazing Clemyontri Park, a handicap accessible park with ramps and swings that Brayden can use. It also has a carousel in the middle of the park that we can roll wheelchairs right on.
It was a beautiful day with great friends.
Brayden even granted us with some smiles. I had a chance to run in to someone from church and meet her adorable boys (HI!).

For more pics check out the family blog.
Brayden is doing better and we are working on the suction machine. Of course I had help today with Brayden's respite care worker!

Tuesday, September 1, 2009

The big orange machine

Today we waited around for the suction machine to arrive. The delivery tech came to the front door with a large bag.

I said, "Wow, I cannot believe the machine fits in that bag."

He said, "Oh no, it's not in here. I could not bring it to the front door, it would be easier to bring it through the garage."

I opened the garage door and gasped. It is huge. I am not sure what I expecting but this thing is huge and extremely heavy. We are used to his feeding pump and now we have this machine. I think it needs a name.