Monday, June 29, 2009

Brayden's first sleepover

Jeremy planned a little get away this past weekend. We simply went into Reston Town Center, stayed at a nice hotel and dined at a nice restaurant. He knew not to travel far from home because we had not left Brayden before.

Just one night.

I just had to pack up the boys. Carter and Luke with my parents and Brayden with my sister. The amount of gear I packed was crazy for just one night. Brayden requires a few too many things, I packed the minimal amount.

I have never left Brayden for a night. The most had been 5-6 hours at our house. My stomach was in knots and at the time I would not admit it but I was nervous about leaving him. I left my sister 4 page of notes; all about his medications, feeding pump, etc. I called a few times and talked myself out of calling a few more.

Brayden did fine, as did Carter and Luke. Jeremy and I had a wonderful time. It was nice to have uninterrupted conversation, eat dinner and dessert. Jeremy even took me shopping, I picked up a few things...it was relaxing.

I cannot forget to mention that Gander, our lab, stayed with Jeremy's parents who own one of Gander's sisters. Apparently they had a nice time too!

Saturday, June 27, 2009

School and new Doctor

I am a little behind with blogging. Things have been busy around here.

Brayden had his first IEP meeting. The IEP meeting is to establish goals and plans for Brayden attending special education preschool in the fall. The meeting was at his school with his teacher, vice principal, therapists and us.

Here are his plans:
  • Attending Catoctin Elementary School in Leesburg
  • 3 days a week, half day
  • Riding the bus to and from school - the bus will pull right up to our house
  • Receiving physical, occupational and vision therapy, he will also be evaluated for speech
  • Goals for the school year include things like spending time in a stander, using switches, looking at objects for a period of time, etc.

The planning of the school things are fine. The IEP went well. Things that I felt were missing, I brought up and were immediately added. We also meet briefly with the school nurse. He is the first child at the school to have a G-J tube and it will be hard to keep him running for 20-22 hours a day. The school will run the food but it will be turned off for the bus ride and therapies. Brayden also must come to school with a seizure plan. The plan for seizures is a bit hard to articulate. He has seizures, how many is too many? I don't know. How long is too long? I don't know, I tend to go with my gut and wait things out...that doesn't not leave the school nurse feeling so comfortable, thus we need to make a plan for the school to follow.

On to another doctor this week. Brayden had his first appointment with the orthopedist. The concern and reason for him is see this kind of doctor is because Brayden is non-weight bearing and seizure medications, when taken for a long period of time, can cause issues with bone density. The doctor was pleased with Brayden and found that at the time he did not have any issues and in fact said he was better than she expected. The doctor will be in communication with Brayden's school to help plan for devices that could assist Brayden's standing and sitting. So we will check back in with her in the fall.

It was nice to walk out a doctor's office with good news for once. Not that Brayden's doctor visits are bad, they are just not usually very encouraging.

Sunday, June 21, 2009

Brayden is home

Brayden came home this morning.
How does he feel about being home?
video
In case you are wondering, those are his happy noises.

Most of the diarrhea and vomiting is gone. Still waiting for the virus to be completely gone. He is acting much more like himself. I pray he stays healthy for awhile. A virus sure does him in (and us too).

Saturday, June 20, 2009

Hospital Day Two - Carter and Luke's adventures

Brayden is doing much better after many hours of replenishing him with IV fluids. He was started on J-tube feeds with Pedialyte through out the afternoon and then started his formula in the evening. If all goes well then he will be discharged tomorrow. We have learned the rule for leaving the hospital is to pee, poop and eat. If those are accomplished successfully, then the papers will be signed to go home.

For once the excitement was not with Brayden...it was all about Carter and Luke today. Jeremy picked them up after they spent the night with their Grandma & Papa. They started their day with a trip to their cousin's swim meet, they were excited to cheer her on. After that it was off to the river for some outside time with the dog and a chance to get dirty (apparently Luke accomplished that quite well). They went home for a quick clean up, ran some errands and came to the hospital.
Carter and Luke came to say hello to Brayden and then Jeremy treated them to lunch in the cafeteria, which they loved because they were allowed to get a bag of chips. While they were at lunch I set up the Play Station in Brayden's room for them to play video games. They were thrilled. A little bit later, Carter, Luke and I headed out to catch the movie UP at the old Tally Ho Theater in Leesburg (and yes the floor is unbelievably sticky and gross, the place is a mess). They both laughed and laughed at the movie, it was cute. Meanwhile Jeremy and Brayden were attempting a nap.

The boys and I arrived back at the hospital. They played more video games, I sat with Brayden and Jeremy headed out to grab a bite to eat and get some fresh air (not really fresh, it was so humid here in NoVA that you could hardly breathe). Jeremy came back and we hung out some more in Brayden's room. Carter requested bedtime prayers with Jeremy before we headed home. Luke cried about leaving daddy and Brayden.

Carter and Luke crashed together in Luke's bed seconds after their heads hit the pillows. And yes Carter sleeps all wrapped up like that and Luke sleeps with two old blankets that need to placed a certain way.
Brayden was happy to have his brothers around today. He has not slept much but once his brothers arrived he had a nice long nap, with them as the back ground noise.

Friday, June 19, 2009

Staying at the Ritz (Hospital)

Brayden has been admitted to our local hospital, INOVA Loudoun. We went through the ER and a few hours later he was placed in his room.

More blood work was done...no results yet. Another chest x-ray...clear again. The IV...a difficult find but eventually got it.

The pediatric wing at this hospital is great. It is quite posh in comparison to our rooms at Childrens (sorry Childrens but you need to hurry up with those renovations). This room is big, with two TVs (one for the child, one for the parent), a Play Station, a pull out couch (not the sad little pull out chair) and most importantly the private bathroom!

Brayden seems to be doing better already. They did a big push of IV fluids and he had some nice wet diapers. The local hospital is great. Jeremy's sister works there and she seems to know most of the people so we are being treated great. Our only problem is with Brayden's medications, the hospital pharmacy does not have them. It seems to be a difficult order for them. Jeremy had to drive home at 10:00 p.m. to pick up Brayden's prescriptions from home.

The plan is for Brayden to be on IV fluids through the night, try his tube feeds sometime in the morning and he could be discharged by the afternoon, if things are looking better.

Thursday, June 18, 2009

The doctor visit that kept on going

Today, Brayden was scheduled to see his GI doctor. I have been concerned that his G-J tube was loose and this can lead to some problems. We left the house at 6:30 a.m. for a 7:45 a.m. appointment at Children's (Fairfax office).

Brayden saw the GI doctor about his tube and things looked good. The doctor continued to ask about Brayden's health. I told him about Brayden's problems with the coughing, vomiting and diarrhea for the past week. It has been pretty bad the past 24-36 hours. The doctor listened to his chest and drilled us with questions about Brayden's output (urine and stool). He was not pleased with how little Brayden has urinated and how much he has had diarrhea.

The GI doctor then ordered a chest x-ray, blood work, urine and stool sample.

Oh boy, here we go. A simple check on the tube turned in to quite an adventure.

The chest x-ray was pretty simple. Brayden did not like being held down.

Then came time for the urine sample. They will not use a catheter at Childrens (I have no idea why) so we have to do the little urine bag (that is not fun). As we were putting on the urine bag, he had diarrhea all over the table. It was not pleasant. So then we scooped up that for his stool sample.

The bag was on so we wait for him to urinate.

Meanwhile Brayden has blood drawn, which thankfully was pretty smooth. In the past he has proven to be a very difficult stick.

Then we are back in the waiting area. Waiting for him to urinate. An hour goes by...nothing. Another hour goes by...nothing. I ask if we can leave; keep a urine bag on him and start heading home but stop at the pediatrician to try again for a urine sample. The doctor says we can go.

We leave Fairfax and head for the pediatrician. Of course in the middle of a huge thunderstorm with rain so hard you could barely see or hear anything.

The nurse does a cath (instead of that dreadful bag) and nothing. Barely a drip. Hmmm, at this point we had been running his feeding for several hours, however he had 4 diarrhea episodes. They do more blood work because they might be able to get it processed faster than Childrens. The pediatrician listens to his chest and thinks there might be a little something. They went ahead and gave him a shot of an antibiotic for pneumonia.

At this point, we wait to find out the results from all of the work ups. Brayden may be admitted to the hospital for the weekend to get more fluids in him by IV, give his gut a rest and a chance to heal.

We are finally home at 4:45 p.m.

I just thought we were getting his tube checked instead he may be admitted?!

Tuesday, June 16, 2009

A bath after the bath

Brayden is feeling better. His fever has come down, the vomiting decreased, as well as the diarrhea. Still has it all but starting to go away. The worst of it seems to be late in the evening or early in the morning.

Brayden's normal routine to start the day is a bath because he usually vomits in his bed and it gets all over. Well during this sickness, the bath is needed for the vomit and diarrhea mess.

This morning was a mess. Vomit all over him, the bed, bumper and diarrhea all over too. We stripped Brayden and his entire bed. Loaded him into the bath. Bath time is one of his favorite things. He gets so relaxed.

This morning he was a little too relaxed. He had diarrhea in the bath! Do you hear me gagging? Diarrhea all over him, floating in the tub and all over his several hundred dollar new bath chair! Thankfully Brayden's attendant was there to quickly help with the clean up of him and the bath. I have disinfected every thing several times today.

This is my life, diarrhea and all!

Monday, June 15, 2009

It's coming out both ends

Well Brayden is sick...again. He has a fever, cough/congestion, vomiting and diarrhea with a diaper rash that will make anyone cringe.

Oh this is fun.

Why has he been getting sick lately? As if he doesn't have anything else to deal with.

Wednesday, June 10, 2009

Just a Wednesday

Not much going on in our house this week. We have been waiting to hear from the doctors. Brayden's tube is loose/leaking and needs to replaced. We would like to have an appointment instead of waiting and waiting around like we had to do in the past. Hoping that we would get in sometime this week, I kept the schedules light.

Today was a free day, nothing planned. Luke and I dropped Carter off at a friend's house and ended up staying for a couple of hours. Carter goes to kindergarten with this little boy. The mom and I rarely get a chance to sit down and talk so this morning was nice. She has a brother with severe disabilities. It was interesting to hear her take on being the sibling and how her family has coped and is coping with her brother's needs. I relayed my concerns about Carter and Luke being the brothers of Brayden, how their life is affected. She found that she is a better person for having her brother in her life...that was nice to hear.

After leaving their house Luke and I picked up Brayden and his attendant to go to the park. Luke has recently come to love the swings (who wouldn't, flying through the air like that!). He spent most of his time swinging away. Then Brayden got in on the action. This park has a few handicap accessible things, one being a swing. Brayden enjoyed the gentle swing and almost fell asleep. We loaded him in the swing with his feeding equipment (yes we are still on 20 hour feeds out of a 24 hour day), propped his head with his pink fuzzy pillow and he was set! Brayden has not been in a swing since the fall and could only handle it for a short period of time. It was great to see him really relax in it this time.
Of course it was the one day I did not have my camera so I had to make due with the phone camera.

Tuesday, June 9, 2009

Be Patient Tee

be patient, God is not finished with me yet!
My sister gave this to him. I love it

Dream?

I woke up this morning thinking of Brayden. But it was unsettling. My eyes were watery and crusty like I had been crying. I had a headache like I had been crying hard. I have no idea what I was dreaming, only that it was something about Brayden.
Now I just feel very unsettled and cannot seem to shake it.
Are dreams really a peek into your unconscious mind? Because if so, I have no desire to know what mine is saying.

Friday, June 5, 2009

10th Anniversary

Jeremy and I are celebrating our 10th wedding anniversary.

We have been married 10 years!

For all of the lovey dovey stuff and pictures check out the family blog. This blog is going to be a bit more real.

Has ten years been easy?

Absolutely not. Marriage is work. I would say that our first year was hard...just figuring things out. Once we figured things out, we got in a grove. Then we had kids, the grove changed and we adjusted. Jeremy worked. I stayed home with the kids. Activities on the weekends. The beach in the summer. Things were working...smooth sailing. We were happy.

Then came Brayden. I have never been so emotionally exhausted in my entire life. Brayden's life hit us like a freight train that we never saw coming. We have been trying to find the grove for the past two years. Having the extreme stress surrounding Brayden and his needs/schedule inevitably trickles (or pours) into other parts of our lives. A day at the hospital and we are grouchy, tired and short with everyone. When Brayden was being diagnosed with so many things, we felt defeated. It was hard to talk about; hard to continue with "normal" life. All of your emotions and effort put towards Brayden. And to Carter and Luke. What was left? Not much. Over the past two years, I have cried more than I have in my entire life. Cried so hard, I could barely breathe. And the stress, stress in ways I never experienced before. I lay in bed in silence for hours so exhausted that I could not sleep. Our lives felt turned upside down. How could this not effect our marriage?

Shortly after Brayden was born, they discovered his brain was abnormal. Because of this the doctors look for other midline defects and many of Brayden's organs needed to be checked. We were in and out of hospital waiting rooms. I tried to read the magazines or watch TV but when the stress is there, focus is not. However I will never forget when we were waiting for Brayden's renal test. Good Morning America had a segment about families with special needs children. Some families and experts were interviewed. The experts all agreed that the divorce rate for families with special needs children is over 80%.

I am sitting there thinking...What? 80%! That is not what I wanted to hear right now! It certainly doesn't give me the warm fuzzies. That doesn't sound too promising.

I realize this post is not sounding too uplifting about our marriage but stick with me...

The past couple of years have been hard. Harder than I could have imagined. I can say that today, we are stronger than we have ever been. We love each more.

I was speaking with some one recently about her struggling marriage and she was considering leaving her husband. All I could think was that you have to fight. Fight for you marriage, fight for your spouse, fight side by side against whatever trials come, fight for the children...Yes we fight with each other and the fighting can get ugly. However, I need Jeremy to be there, to face life, fight for our family and marriage. We are a team.

I heard a quote recently that makes me think of this fight. When the high seas are raging it is no time change ships. Dr. Leon Morris talking about 1 Corinthians 7.

When the fighting gets tough do we want to jump ship?

How do we make it through the fighting? We have love. Love for each other and our family. We have faith. The Lord is our rock and strength. Faith that He has a plan for us. The Lord planned for our family to be this way and we have to hand it over to him (a daily task). We are much more than happy these days, I feel joyful and am completely content.

I love Jeremy. I love him as a husband, father, provider, leader...I am so thankful for our ten years; for all the things that have brought us to this point and looking forward to the all that is ahead.

Wednesday, June 3, 2009

Littlest Heroes Project

We got accepted to be part of The Littlest Heroes Project!

I am so excited!

They are matching us up with a photographer!

If you do not know about this project...you have to read about. It is truly amazing.

Tuesday, June 2, 2009

Join the circle time

I had the privilege today of observing circle time.

What is so special about this circle time?

It was a special education preschool. Possibly the school that Brayden will be attending. A good friend's daughter was part of the class in which we could watch the circle time.

And let me tell you it was a treat! The circle time was started with each child (I am pretty sure all fell in to the severely disabled category) saying hello. They could not say hello with words so they used a switch - a big button like this one, that the educators can connect to many things, this time to a recording of "hello". Every child had a turn pushing their switch to say hello, some it required a lot of effort and for some it was just fun. It is something that may seem easy, pushing a button/switch, but for these children it was a huge goal that had been reached. The assistants and teacher used every opportunity for the children to participate. The children could choose which song they wanted to sing by selecting (looking or hitting) between a couple of cards with pictures on them; like The Itsy Bitsy Spider was a card with a spider on it. After some songs, movements, looking and touching, circle time came to an end. Each child said "goodbye" with a hit of their switch.

It was amazing to watch these children and the teachers. I had goose bumps the entire time. These children, who many think could not do much, are in a classroom learning. They are participating in school with their own circle time. I cannot believe Brayden will be doing it!