Wednesday, February 25, 2009

Take Notice

Each stage in my life…I see things differently.

I remembered when I first got engaged. I was thrilled to wear my ring. I would stare at the sparkle from the diamond. Once I had that ring, I noticed everyone else’s ring. Lots of people were engaged or married! So many different styles of rings! Who knew?! I never noticed before.

Then when I was pregnant, I saw so many pregnant women. I am sure that there were pregnant women walking around all along but I never noticed until I was there too. It seemed like every where I went I would see a pregnant woman.

Brayden entered our lives. With his medical issues, developmental delays and such, it had added an entirely new vocabulary and interests to my world. I see KidKarts that I never would have noticed before; like when we were at a fair and a group of special needs children were being pushed around in their KidKarts. I read articles that I never would have glanced at before; like an article in the Washington Post one weekend about Epilepsy. I watch more Discovery Health shows; just watched one about a child with Cerebral Palsy. I started watching those Extreme Home Makeover shows when they have a child with a disability. I see ideas about how to make a home handicap accessible.

I have a child with disabilities, specials needs or whatever you would like to call it. I had no idea that so many families had children in similar circumstances. Sure I knew that those issues were out there but I had never taken the time to notice. Just in the short time that I have been blogging, I have come across some amazing families. Their stories so touching and helpful. I come across emails, blogs, twitters about families dealing with big medical problems. I don’t just glance anymore. I stop, really read about them, really pray for them and really take notice.

I have never noticed or taken the time to notice how our body is designed. Yes I had anatomy classes, thanks to Dr. Burkholder for that. There is so much happening. It is a grand design. A design that even the best of doctors do not fully comprehend. A design that we, when we are healthy, take for granted. Do you realize how complex the brain is? Do you have any idea how complicated walking is? Or eating? I certainly did not until Brayden came into my life.

I never really noticed how much the Lord has a grand design for our lives. Sure I knew it but never toke the time to think about it. He designed our bodies. These bodies that are so complicated, yet function in the most awesome way (even when things are not working properly). He designed our lives, where we live, who we are, who we know, our experiences, joys and heartaches…all designed in the most fabulous way.

God knows the grand design. He notices us. He knows us. We just need to stop and take notice of Him. We need to know Him.

Tuesday, February 24, 2009


I am annoyed.

With insurance.

An ongoing headache for me but today I am extra annoyed.

Insurance. We have always had insurance. I have never really given it much thought. I go to the doctor hand over my card and copay then I am on my way. That is until Brayden. I spend more time on the phone and online trying to understand and make sure that Brayden is covered. Since the time that Brayden was born Jeremy’s office has changed insurance programs several times. Ugh! Every time it is difficult to switch all of Brayden’s things over. A couple of times that switching brought me to tears. The mention of switching insurance makes my stomach in knots.

Last year we were on one program. All seemed to be going well until it came time for Brayden’s therapies. The insurance company said that each insured gets 90 days of physical/occupational therapy. That is therapy has to happen within 90 days…three months. Not 90 days of therapy. His therapy had to happen within 90 days, start to finish. Brayden obviously needs more than 3 months of therapy. We argued that point. Got a doctor’s note/prescription for the needed therapy, thought we were covered. Several months later the insurance company is saying that we were denied the therapy that happened outside those three months! Back to discussing/arguing with the insurance company over something that happened last spring.

Now we are on a HSA insurance plan. Some doctors ask for copays, some do not. I don’t understand. We have reached our limit only a couple of months on the plan. After some discussion with the insurance company last night, I realized that Brayden can have up to $2000 of physical/occupational therapy. Umm…sounds good at the start but we are half way through that limit and it is only February.

So what do we do? Brayden needs therapy. Do we deny him services because insurance does not cover? We will argue for more but it is hard. The insurance company needs some serious convincing. We cannot pay for therapy out of pocket…it is way too costly. Brayden has other expenses that insurance does not cover. Do we cut back in therapy? I was hoping to add feeding therapy back into the mix but that might not be possible.

Who knows what the insurance companies will tell us. I have spent too much time with them on the phone today.

I am working on getting letters of medical necessity to appeal.

Ugh, insurance. It is great when it works and a pain when it does not.

I am annoyed.

Friday, February 20, 2009

Brayden's 1st Crush

Karyn came into Brayden's life.

The story goes like this...

Our church has a bulletin. Some one from the church has been updating the prayer requests for our family. The prayers requests from the church body are posted in the bulletin.

Several months ago, the insert said that we trying to find respite care for Brayden. A couple of days later, I found a message from a gal named Karyn. She saw the bulletin, called the church and got our contact information.
I called her back hoping not to sound to eager.
Karyn came out to our house (she lives around Fairfax and we live in Waterford, it is a bit of a haul to us). She offered to help out with Brayden while we were looking for our full-time person and she was searching for her perfect job.
Brayden immediately took to Karyn, showing off all of his tricks. He was extremely comfortable with her.
Brayden was happy. Mommy was happy. Karyn is a nurse and has had experience in pediatrics. I felt comfortable leaving Brayden under her care.
The past few months Karyn has been staying with Brayden a couple of times a week. I have been able to run errands, attend Carter and Luke's school activities and just not have to drag Brayden everywhere.
Having Karyn with us was fantastic for not only Brayden but me as well. I have been struggling with the idea of Brayden having a care taker. I am a stay at home mom because I want to be. I never imagined having someone in my home. Karyn was a great transition for me. Starting with Karyn we knew that it was temporary and I was able to think ahead about having a full time person with us. In just a couple of weeks Brayden's full time care taker, Shari Jane, will be starting. I am getting more comfortable with having someone here for Brayden. I know that it will be great.
Karyn's last day with Brayden was yesterday. She found a great job, close to her home. Karyn found Brayden a funky rubber ball. Brayden's favorite color is pink because it is a color that he seems to be able to look at directly. He has not let go of the ball.
We are so thankful for the lovely Karyn.

Tuesday, February 17, 2009

Catching up

We are here, nothing major going on...just busy.
So many things to talk about. I will try not to ramble on and save some things for a later date.
I will try to stick to 3 happenings.

Not this last Sunday but the previous one, I joined some gals for dinner. Two women, two amazing moms, two moms to little ones dealing with big medical issues. First, mom to Daniel. A son with an inoperable brain tumor. This mom, Laura, has been an amazing friend to me. She is such an encouragement. Her son has had more than two dozen MRIs. That's right, I typed it correctly, more than two dozen MRIs. Many chemo treatments and more doctors than they can count. Daniel so sweet. I finally had to chance to meet him. I had the privilege of reading him a book. Since he is extremely visually impaired, he does an amazing job navigating his world. He found his book, my lap and was ready to read. His sweet little hands felt my legs and would reach up to caress my face. Oh melt my heart! He sang some songs and talked to Brayden (or B as he called him). Please pray for this family. The tumor is stable, not growing but not shrinking.
A picture of Daniel, his daddy and Brayden.

The other; mom to Waverly and Oliver. Shannon and I knew each other at Taylor University only as acquaintances. She, her husband and children recently moved back to the NoVA area. I have been following her blog the past months. Her children have been diagnosed with MPS IIIA / Sanfilippo Sydrome. I cannot even begin to explain what that means so please check out their blog, Exploring Holland. Amazing story and amazing beautiful children. Please pray for this family, the disease seems to be moving fast and furious, they want to help their children in every way possible.

The three got together for dinner (Brayden tagged along because Jeremy had the other two boys out for the evening). The dinner was fun. All of us have similar but very different experiences with Children's Hospital, early intervention program, "interesting" doctors and nurses, school, questions and comments from complete strangers or loved ones, fears, joys... It was a wonderful time. We sat, talked and attempted to eat between all of the talking, for over 3 hours. We will be doing it again!

Brayden has help! Through the marvelous EDCD waiver, Brayden has been eligible for respite care. Staring in March we will have Shari Jane with us every day for 6 hours! This past Tuesday she came to help out for the day. It turned out to be a huge blessing that she was there...

Carter just left for a friends house. Luke was climbing in the car to head to preschool. Shari Jane was getting Brayden ready to load into the car and I was gathering all of the things that Brayden requires. Luke forgot his backpack and ran back into the house. Before he reached the inside, he crashed into the garage steps. Yes, he fell going up the stairs (nothing new for him, he did this a couple of years ago and pushed one of his baby teeth back up into his gums).

Luke needed some attention...medical attention. It was a gash on the bridge of his nose.

Brayden had an appointment in a building adjacent to the closest hospital. I dropped Shari Jane and Brayden off, then headed to the ER with Luke. To see the details of Luke's adventure check out the family blog.

It was a great day for Shari Jane to be with us. Brayden did not miss his appointment and I could fully tend to Luke.

Back to the GI doctor.

Brayden and I ventured to the Children's center in Fairfax. After a long wait and the power flashing on and off many times because of the insane wind in NoVA that day (I was praying I was not on the elevator when it happened), we finally saw the doctor.

No major changes. Keep the course. Brayden will still be feed through the J-tube, into his intestine. The doctor is not ready for us to try the formula in Brayden's tummy yet. He wants us to see a GI nutritionist to help maintain the proper calories and amount of formula. The goal is to increase the calories and decrease the amount of time that Brayden is hooked up to the feeding pump. Right now he is hooked up for approx. 20 hours a day. The GI doctors says that we can work towards 16 hours a day. Hooray! That is life changing for him. Less hours to be hooked up!

Brayden's tube is looking good despite the discoloration that has occurred from medicines staining the tube and the formula making it gunky - any tips on cleaning it would be appreciated. The GI doctor said that a G-tube/mickey button could be in Brayden's foreseeable future (the future meaning a year or so from now). That means Brayden could be fed into his tummy again. The G-tube/mickey button is much easier to use.

The doctor also said that we could attempt to feed Brayden, by mouth, some very thin baby foods in very small amounts. Before all of the feeding tube action was happening, Brayden was able to eat about 1/3 of the smallest baby food jar. We are hoping that he will be able to eat orally. Think about how much satisfaction we get from eating and tasting. He has not had that for almost one year!

That is all for now.

Saturday, February 7, 2009

911 knows us

Late yesterday afternoon we had to call to 911 for Brayden.

Jeremy was on his way home from work. I was getting the boys ready to go out for dinner and run errands with Jeremy. I left Carter and Luke playing outside (not the best idea, they ended a muddy mess from the snow and ice melting) while I went to get Brayden up from his nap. I walked in Brayden's room to find him in the middle of a seizure. I continued to pack up his things to get ready to go. I looked at him...still seizing. I ran downstairs to grab something, came back to Brayden's room...he was still seizing. Just then Jeremy came home, we decided to give him the Diastat, a rectal dose of heavy duty anti-seizure medication to be used in case of prolonged seizures.

Brayden had the Diastat.
We waited.
He was still seizing.

We were told that if the Diastat does not take effect in 15 minutes to call 911. It had been 15 minutes since the dose of Diastat, seizing for 25+ minutes total, so we called 911.

The ambulance quickly arrived. A couple of the EMTs knew us from our previous calls. Sad right? The EMTs are starting to know us?! In our defense, we live in a small community and only called 911 three times, it just happens to all be in the past 9 months.

As the ambulance was pulling up to our house, Brayden finally came out of the seizure. It lasted at least 35 minutes. FYI, his usual seizures are only 15-30 seconds. Take a moment to slowly count to 30, that feels like a long time to have a seizure. Now imagine 30 minutes. There has only been two other times that he had seizures last that long and both times ended up at the hospital with heavy duty meds (Do they give parents Ativan to calm down?).

The EMTs asked us if we still wanted to take him in. We said yes for fear that the seizure might not be under control yet. Brayden and I loaded into the ambulance and headed for the hospital.
Once we were in the ER, Brayden was acting himself. They ran some tests to check for illnesses since he has been congested. Everything came back fine. The doctor seems to think that since Brayden has had a bad cold, his threshold for seizures is lowered and caused the prolonged seizure. And I am thinking that if just a cold causes a seizure like that, what happens if he actually gets sick?! We don't know yet because thankfully Brayden has never really been sick.

After 4 hours in the ER (our shortest hospital trip with him), we headed home.
Back to normal life.

Being bored in the ER, I was playing around with features of my new phone thus the photos. I have stepped into a whole new world with Blackberry!

Thursday, February 5, 2009

Including Brayden

We had a monumental moment in our house this week.

We had a family dinner.

Why is this monumental you ask? I fix dinner almost every night. We all eat the same thing. However with the chaos that has been a part of our life, family dinners have not been happening. One of us tends to Brayden while the other feeds Carter and Luke. Even if we make it to the table at the same time Brayden is rarely included. If he is then he has been in his little bouncer seat next to the table and that doesn't really count because no one can see him other than the person sitting next to him.

Back to monumental...Brayden has not been sitting in a high chair because, well he doesn't eat and high chairs do not support him very well. We have been trying the high chair out a little bit here and there. With the help of his OT, we roll up towels to help him be upright. He has been doing well so we tried it out for dinner time.

There we were. All of us at the dinner table. Brayden pulled right up to the table next to his brothers in his high chair with a toy entice him. It was wonderful to have a family dinner. I see many more in our future.

In other things happening...

I have been trying to find ways for Carter and Luke to be involved with Brayden. Brayden's fabulous vision therapist (Hi Melissa!) brought some sparkly foam board and sponges. I found some black fabric for contrast. Carter and Luke made play mats for Brayden. Since Brayden's vision is questionable. We kept it simple, only one color. So far he prefers the gold.