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.

Annoyed

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.

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.

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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.

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Brayden immediately took to Karyn, showing off all of his tricks. He was extremely comfortable with her.

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Brayden was happy. Mommy was happy. Karyn is a nurse and has had experience in pediatrics. I felt comfortable leaving Brayden under her care.

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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.

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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.

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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.

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We are so thankful for the lovely Karyn.

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.

#1
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!

#2
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.

#3
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.

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!

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.

Give me Kisses

Sit up
And say
Give me kisses.

Brayden is attempting to sit up with support and trying to find the confidence to hold his head. He cannot roll over, let alone find his way to a sitting position so we prop him up and he acts like such a big boy. He is not always aware of how his body moves but has these moments of wonderful coordinated effort. Months ago he would not even bend and now he actually enjoys being upright. It requires a lot of effort, it exhausts him and still he wants to sit up.

It is remarkable to find that he is understanding our words. He cries if we say "bed" and he does not want to go, he braces when we say "up, up" to pick him up and he kisses when asked...

The kisses are open mouth, a bit messy and we love them.

We taped this yesterday; snow here in Virginia, today ice and two days of no school. The boys and I were camped out in the basement after a long day of playing in the snow. The cleaning ladies were upstairs and we needed to stay out of their way, thus the basement. Trying to find something to occupy the time (instead of video games), I brought out the camcorder. The boys watched their sledding skills taped earlier in the day and then we decided to get Brayden on camera. Carter and Luke did the videotaping. Luke got bored with it and you can hear him playing skee ball in the background.

Surrounded with Prayer

This past Monday night the elders (leaders) of our church, Reston Bible, came to pray with our family. We felt so blessed to have them surround our family with support and prayer. Some of the elders we have known for years, others we have just come to know recently.

After some small talk and discussing Brayden’s needs, they asked what we would like prayer for. Now, we knew that they were coming to our house for several days, you would think that I would know how to answer the question. But in that moment, my mind was swirling. Where do I start? I have big things, little things, mostly things that I cannot articulate… If I had to give my top five things to pray for, I just do not know. It changes moment to moment. I guess that is me praying without ceasing. Many of my thoughts and breaths are sighs of prayer but saying them out loud…I was stuck.

The elders gathered around us. They prayed. It was hard. My heart was beating faster and pretty sure my palms were sweaty but you would have to ask Jeremy since he was holding my hand. They prayed for our marriage; Carter and Luke as big brothers; and Brayden, his protection and healing in small or big ways. They prayed for the doctors, therapists, and helpers that have all become a part of our life. They prayed for our family, our circumstances, our strength,… The night was an encouragement. There is nothing like the support and prayers we have received.

Jeremy and I sat in bed talking about the evening. We both felt emotionally exhausted. We go through each day mostly optimistic and not always discouraged about Brayden's circumstances but it catches up with us. Jeremy shared that this past week, he was driving along, felt overwhelmed and just sobbed. I have those moments too. We obviously need prayer for strength.

As for Brayden that night, apparently someone asked (not really), “Show me whatcha workin’ with!?” In the short time the elders were in our home. Brayden was hooked up to his feeding pump, vomited blood all down the front of Jeremy and had a couple of seizures. Jeremy and Brayden required a wardrobe change. Brayden took it upon himself to show them his needs, in a nutshell. He was ready for prayer.

But what is prayer?
Prayer is a relationship, wherein we humbly communicate, worship, and sincerely seek God's face, knowing that He hears us, loves us and will respond, though not always in a manner we may expect or desire. Prayer can encompass confession, praise, adoration, supplication, intercession and more.
Focus on the Family - Robert Velarde
Please read the entire article Prayer and the Difference it Makes.

What are my prayers? I will have to save that for another today…it is too long.

Just one last thought. I was given a book shortly after Brayden was born, Praying through the Tough Times. I am not sure about our tough times because this is our life, not a moment in time we are trying to get through. One prayer in the book resonated with me and it often comes to mind: Almighty God, sovereign of all and personal Lord of my life…You love me, give me security and replenish my hope. My stress and strain are healed by your peace, my worries are resolved by trusting You, my burdens are lifted off my back, my soul is replenished by Your indwelling Spirit.

We cannot do this without prayer.

Children's

We spend many hours looking at the bear. The bear, the symbol for Children's National Medical Center. The bear is even in the ceiling tiles.

Today we visited the neurologist at Children's.

Brayden's neurological issues have been on the back burner lately because of his vomiting/GI issues. His seizures have changed and increased. We knew it was time for a visit with the neurologist.

Brayden and I headed into Children's today, the Children's satellite office in VA. My heart always races before the visits. Half because of the actual doctor visit and half because of the parking. The parking situation had brought me to tears before and that is not a good way to enter a visit to the neurologist. Thankfully we found a good handicap spot and headed in.

I am never quite sure about the outcome of the doctor visits. Brayden's is still some what of an enigma. Not one thing to describe Brayden and his medical conditions; things are constantly changing when he gives us more pieces to his puzzle.

As I said, Brayden's seizures have changed and increased. I came to the doctor armed and ready with pictures and video. We have learned to document everything so the doctors can see what we are seeing at home. This is a picture of one type of Brayden's seizures. We lovingly refer to these as the iron cross. His arms and legs go straight out, we could not bend them if we tried; he does a crunch, almost lifting himself up and seems to disappear until the seizure is done.

I talked with the doctor, expressed our recent concerns and even broke out the video camera to show his recent seizures. The doctor concluded that Brayden's current medications are not doing the trick. He is currently on Keppra and Trileptal. The plan is from us to bring Brayden off the Trileptal over a month and gradually introduce Topamax. As we are transitioning the medications, Brayden will be extremely drowsy (he always is with any change in his seizure meds and takes a few weeks to adjust). Then plan is for his seizures to be much more controlled. He will more than likely never be seizure free. We have to decide between how many seizures is tolerable and him being completely snowed by medications.

Sometime this spring Brayden will be scheduled for an MRI. His only other MRI for his brain was done at 3 months old. Having a MRI when he is two years old will provide a better picture of his brain since it has grown (only a little bit but we count every centimeter). It will probably not change any of his treatment or therapies but still be useful information in understanding Brayden.

More quality time with the bear...

Is she okay?

Our good friends just had their third child. A precious baby girl. Our boys are good friends with their oldest (when they are together...watch out). We have not really had the opportunity to visit with them and love on the new baby girl so we invited them over this coming Tuesday. I was telling Carter and Luke last night about the plan, they were obviously thrilled. They think every moment of their life should be a play date.

After discussing what they wanted to do; play games, have snacks, maybe a movie... I told them that the family was going to bring the new baby and it will be exciting to see her!

Then Carter asked, "Is she okay?"

I looked at him, puzzled, and asked, "What do you mean?"

He replied, "The baby, is she okay?"

I said, "Yes, she is just fine."

Carter was not pleased with my answer, "I mean is she okay or is she like Brayden?"

I was a bit taken back.

Carter went on to ask, "Can she see and stuff. Is she sick? You know, like Brayden."

I just replied, "She can see and is doing great. She is a healthy, happy baby."

That seemed sufficient enough for him but my head was swirling a bit. Wondering how he processes the idea of Brayden in comparison to other babies. Do they realize how different Brayden is, how different our life is? Does it effect them? Do they worry?

We do not really speak to Carter and Luke about how Brayden is different than most babies they know, although things are a becoming more obvious as Brayden gets older. We address some things as the boys bring them up. They know Brayden sees many doctors and has many needs. But how do they compare that to other children?

I have no idea.

This is their life. They have a baby brother with many special needs. Is he okay? I don't know.

Two months and counting

It has been two months since Brayden was started on the formula Elecare.

It has been two months of no vomit.

I am singing the Hallelujah chorus from the hills of Waterford. Can you hear me?

It seems as though the new, ultra-sensitive formula is doing the trick. With in the first twenty four hours of using Elecare Brayden stopped vomiting. The only times that he has vomited were seizures related. He was uncomfortable when the formula was first started but in retrospect probably was him not sleeping well and some serious teething, which by the way takes forever when not eating or putting anything into the mouth to help get those teeth out.

Since the end of last April Brayden had been vomiting and over time the vomiting got worse. He started with a G-tube, then moved to a G-J tube. Only receiving food and medications into his J-tube (that goes into the intestine and bypasses the stomach completely). He was still vomiting all of the stomach juices and that quickly turned bloody.

Brayden was tested for allergies, had milk studies (he has very delayed gastric emptying), scooped a few times and many medications. After 2 911 calls, 2 hospital stays, several hospital outpatient procedures, too many doctor visits, too many panic phone calls to any doctor that would talk to us...there were NO results. Nothing to stop the vomiting. One doctor actually suggested that this might be something Brayden had to live with.

I am learning to be okay with many of Brayden's conditions but the vomiting...I was not okay with.

Everyday we walk a fine line when dealing with his seizures. How many is too many? When do we give the heavy duty medication; when is it time to increase his daily meds?

I could not do that with the vomiting. How many times to too many? We were up to at least 6 times a day of vomiting. How much is too much? He was vomiting stomach bile and blood. How many medications should we try? He was on four (in addition to his seizure meds) and tried some others.

Our last visit with the GI doctor he just suggested we try this formula Elecare. We walked out of that office feeling like the formula was not the answer, it was just one last try before another surgery. The GI doctor fully expected to see Brayden in a couple of weeks.

Once the UPS delivered the Elecare, Brayden's life has changed. He is happier. Mommy and Daddy are much happier.

Brayden is still receiving his formula through the J-tube. We have not tried his stomach for anything other than his reflux medications. The hope is that the GI doctor will let his tummy be reintroduced to things. Brayden seems ready.

Hooray for Elecare and lots of prayers!

At the White House

I must direct your attention to our family blog, click on The Jenkins Family. Yesterday we were at the White House, for probably the last time. Check out the family blog for lots of pictures.

It is a surreal experience to have the President of the United States know a lot about Brayden and he asked how he was doing.

Where am I?

I forget sometimes about Brayden's needs. Not the apparent feedings, medications, diaper changes, bathing, etc. I forget that he is not sure about himself, others and his surroundings.

We honestly have very little idea what he understands. We get little glimpses every once in a while but not enough.

This past week we attended my father's portrait unveiling (to understand all about that, click portrait unveiling). Throughout the day we were surrounded by family, friends, EPA staff and others. Jeremy and I enjoyed talking with others, the boys enjoyed the attention from all of the adults (they were on their best behavior, thank goodness). Brayden was sitting in his KidKart off to the side.

I forget he needs us. Once the room was filled with people. Voices filled the room. Brayden cried out, almost in fear. If he could talk it was like he was saying, "Where am I?" He heard nothing familiar. Jeremy and I had wandered away from him but quickly came to his side. Brayden needed someone around him that he knew. Once he heard a familiar voice and felt a familiar touch, he calmed down immediately.

At one point in the day, we were sitting in large hall listening to my father's speech. Brayden broke into a seizure, it lasted a long time. But what do we do? We normally do nothing just wait it out, count how long it lasts and make sure he is breathing. I look at him, I look at my father making a speech, I look from the corner of my eye the room filled with people and cameras. Where am I? What do I do? It is as if I cannot believe that it happens...I cannot believe I am watching my father in this position; I cannot believe I sit here with my children and one is having a seizure.

I had a dream the following night that I was back in college. It felt so real. I could feel that cold Indiana breeze, smell that dining commons smell and hear the sounds of the dorm. I woke and thought "Where am I?" I quickly came into clear consciousness and laid there thinking. How did this happen? I am an adult, married with children, a house, responsibilities and a severely disabled child. I swear that I was just in college. My actual life felt more like a dream. Do I really have three boys? I never thought I would have all boys (I would not trade it for anything). Do I really live in Waterford? I never thought I would live in the country, where there isn't even pizza or Chinese delivery. Do I really have a baby that cannot talk, walk, eat, see...? I never, in my wildest thoughts or nightmares, imagined I would have a severely disable child.

Early in Brayden's life I woke many times thinking that maybe, just maybe all of this was just a nightmare. Or at least maybe it is not as bad as it seems? Right?

His life is not a nightmare, nor is mine. It is a blessing in so many ways and ways that I may never discover.

I love my life, my family and even grew to love the country. It is just that sometimes I sit back and think...Where am I?

Just me, myself and I

Today was a big day for me, not really for anybody else in my house. Just me.

This week a women, Karyn, from church started helping out with watching Brayden. It has been fantastic. Brayden seems comfortable with her (he really just met her for the first time this week). In fact, I think he might have a little crush on the lovely Ms. Karyn.

I have rarely left Brayden. It might be for a couple of hours here and there. My sister watched him for several hours a couple of weeks ago. That was the longest and it was with family.

You must know that I really do not have problems with leaving my children. No problem the first day of preschool or kindergarten. No problem with babysitters. I have never had a problem leaving Carter and Luke. Brayden...well that seems to be a different story.

Brayden cannot see the world around him or understand it. He is improving greatly with understanding his world but he has to rely on what his knows and things he is comfortable with. I want him to be comfortable and not wondering where he is, where his comfort is.

Today I needed to run lots of errands and the weather was nasty in VA (the oh so lovely sleet and rain combo). Karyn came to watch Brayden. I was going to leave Brayden with her from 9:30 a.m. - 2:30 p.m. The longest I have left him, other than with my sister.

The night before I had a little anxiety about it. I know that Karyn is fully capable of handling Brayden. She is a nurse by profession, she knows the feeding tubes, seizures, etc. But still I was nervous.

I headed out this morning. Dropped Luke off at preschool then Carter at the bus stop for kindergarten. Then it happened. I was alone in the car. Complete silence. I actually felt like I was forgetting something. I caught myself looking in the rear view mirror at the empty car seats.

As any mom knows, it is such a blessing just to hop in and out of the car without your children. It makes running errands so much easier. No seat belts to worry about, strollers to shove in the car or in our case the wheelchair; it was just me, myself and I.

Did I enjoy it? Sure. Did I miss Brayden? Terribly. How many times did I call Karyn to check on Brayden? None.

I came home. Brayden did fine. He really does like Karyn. Although she said he had moments where it seemed like he needed his mommy.

Maybe she said that to make me feel better...and it did.

Give me cuddles

Brayden gave some good cuddles today. If cuddles where a therapy goal for him these past 20 months, he might be falling short. However the last few weeks have brought moments like this.

This afternoon, Brayden nestled into daddy's shoulder and was fast asleep.

It might not seem like a big deal but to us it is moments we have been waiting for. Brayden has spent most of his life in an awkward arch with tight muscles, making it hard to hold him and even harder to cuddle. He rarely falls asleep when someone is holding him and never (until today) would fall asleep with his face up against someone.
Oooo, bring on some more cuddles!

New Year's Resolution

I have never been one to make New Year's Resolutions. I never really understood the hype about it. If I did not do it last year, why would I do it this year?

So instead of making New Year's Resolutions, I propose my "wish" list for the year 2009, not like a Christmas wish list, more like things to aspire to.

• Find quiet. Things have been to hectic in our house. I want things to slow down, have more quiet moments and enjoy them.


• Accepting help. I have a hard time admitting when I need help, let alone asking for it. We had so many people help us this past year and I find it so hard to accept because I cannot reciprocate. They do not expect anything in return, I just want to return the favor. Although, this year will bring a respite care worker for Brayden and I need to accept all the help that can bring.


• Be thankful and express it.


• Quality family time. Jeremy and I need more date nights (we have only had 2 in the past 18+ months). We need to go back to family dinners instead of one of us tending to Brayden and the other feeding Carter and Luke. Find fun family outings that include all of us.


• Make it less about Brayden. I love Brayden and will do whatever it takes to help him. However this past year has required our lives to revolve around his needs. We need to find a balance.


• Be still. Things are busy with three kids, especially with Brayden's needs. I need to be still. I saw this quote, "My goal is a peaceful heart, a calm mind."

Be still and know that He is God

Be still and know that He is holy

Be still oh restless soul of mine

Bow before the prince of Peace

Let the noise and clamor cease

Be still and know that He is God

Be still and know that He is faithful

Consider all that He has done

Stand in awe and be amazed

And know that He will never change

Be still

By Steven Curtis Chapman

What are your resolutions? Or your wish list for 2009?

Grieving Perfection

This is my Christmas post. It is long; it has a point so please stick with me…

Perfection is the name of my game. I am a bit of a perfectionist. When I do something, don’t just want to do it well, I want it to be perfect. Just ask my parents about learning how to ride a bike. Or ask Jeremy (and his father) about me water skiing or snow skiing.

This time of year brings out the perfectionist in me.

I am on a mission to find that perfect gift for everyone on my list. I will search and search until I find it.

Putting up Christmas decorations takes me forever. I sort things, move them and move again until I find the perfect spot for each decoration. When it comes to the Christmas tree…well don’t mess with me. This was the first year I did not pick out the tree (gasp!). Jeremy, Carter and Luke went. Jeremy asked me many times if I should go and he stay home with Brayden but I told him to go. Jeremy made me promise that I would not be upset with their choice (in case you were wondering, it is my favorite tree ever). Jeremy suggested that we all decorate the tree together (another gasp but this time bigger). I love my children, I want to have Christmas traditions but decorating the Christmas tree…it is my happy place of perfectionism. I spend hours putting things on, I have a method in which to put things on, I stand back and adjust, I walk by, I adjust, it has to be just perfect.

Every giving birth to my 3 sons and each time the doctor handed them to me; all I could think was perfect. They were perfect. They had all had the most perfect little fingers and toes. They were breathing and crying. I love them. Perfect.

Then a few days after Brayden was born I came face to face with loosing that perfect baby. What did they mean my baby was not perfect? He was broken? How can that be, he looks perfect?

Letting go the idea of a perfect child is like grieving a loss. I am no way comparing it to actually losing a child. It is grieving the loss of the perfect or ideal child.

A book that was sent to me after Brayden was born and describes this feeling:
When our baby was born we lost something we were already in love with-our idea of what [he] would be. No baby could ever completely fulfill that idea or be that fantasy, but most babies approach or overlap our dream baby…A child with a disability was not in our picture at all, except maybe as an occasional fear. We who have a child with a disability lost not only our fantasy baby, but our reliance on having a normal baby…It makes our heart ache. - Changed by a Child

There is no manual for this kind of grief. Grieving perfection, or at least the idea of it. How do you deal with a severely disabled child? My perfect child is being stripped away little by little with each problem that arises. For months we left specialist offices with more bad news and a list of things he more than likely will not be able to do.

My grief does not come all at once and it is not frequent. It comes in those silent moments. It comes after another doctor visit, when sitting in the car trying to absorb all the information that was just thrown at us. It comes after a long day of seizures. It comes when I feel helpless. It comes when I watch him sleep. He looks so perfect but he is not. He looks like he should be a normal healthy child. He is so broken. I feel so broken.

I have my moments of grief. It hurts. Sometimes I feel like I cannot breathe but those times are rare. We love Brayden, we are thankful for him. He is broken but to us, he is perfect is his own little way and perfect for our family.

At times the idea of grieving the loss of a perfect child felt vain, almost silly. I know that not one single child is perfect. Not my other two boys. Sorry to say not any of your children are either. We are all broken. Some more broken than others; whether it be physically, emotionally or spiritually.

There was only one baby that was born perfect, Jesus. He came to this earth perfect. He came because we are not perfect, we are broken. He came to save us from this imperfect world.

For Christmas we can celebrate His perfection.

The Bible tells us that Jesus was not an ordinary baby. In fact, this baby was the God of the universe clothed in human flesh. That’s right. Jesus is actually God, in human flesh, who came to this earth because mankind had been separated from Him by their sin. Jesus became a man so that He could reunite mankind with God.
We all know that we are not perfect. But did you know that one day we will all stand before a righteous God and give an account for our lives? In that moment, we will either be sentenced to Heaven or Hell. Today, we can be sure that we are going to Heaven because of what Jesus Christ did for us.
Jesus Christ paid the penalty for our sins by dying on the cross. Three days later, He rose from the dead—proving that He is God (1 Corinthians 15:3-4). He now offers free access into Heaven to all who trust in Him and believe in His death, burial, and resurrection (Romans 10:13). That’s why He came and that’s why we now celebrate His birth at Christmas—because “while we were yet sinners, Christ died for us” (Romans 5:8).
Christmas is all about Jesus Christ. He came to this earth, was born, lived, and died in order to make a way for you to get to Heaven. - crossway.org

Fix my baby!

Our friends the Dekorne’s are still at the hospital with their baby girl. The EEG and the MRI look good. Here is the latest:
Kaiya is getting nutrition now through the NJ tube, so pray that her system will correctly process the food. They wonder if she had a little stroke, which is causing the eye problems. Please continue to pray for that left eye...Also for her breathing, that as they think about taking her off the ventilator in a few days-her body will be able to respirate properly.(this won't be too soon...but proactive prayer, right?) And of course very importantly, the fluid on her brain.

Their circumstances are different from ours but all tests have been the same and it hits too close to home for me. I tossed and turned last night thinking of them. I can feel the hospital; smell that weird hospital smell and hospital food. I know what it feels like to have tons of doctors circling around you and your baby trying to decide what to do. I know what it feels like to kiss your baby goodbye as they wheel them off to yet another test. I know what it feels like to sit and wait for each test, the EEGs, MRIs, blood work, on and on. Seeing your baby hooked up to more machines with tubes and wires than you ever imagined could be put on such a little body.

All of that boils down to two things: waiting and waiting to see if they can fix my baby.

For most of my life when someone is sick, we went to doctor or hospital. Then the doctor would prescribe some sort of treatment and we got better. Then came Brayden; we sit in countless doctor offices and hospitals. Lots of tests and tons of waiting (as I mentioned before, waiting in a hospital is like dog years, one day feels like seven).

So many times I sit there crying in my head “Fix my baby! I don’t care what we need to do, just tell us and we will do it. Just fix my baby!”

Crying out to God; “Fix my baby!”

It is such a powerless feeling, when you have to wait and see what will happen. We always have to wait for the test results to come in. I can remember each conversation with each doctor after each test. Most of them list the things wrong but we always need to wait and see what will happen as he grows. Brayden’s wait and see plan pretty much entails his entire life. Will he see? Wait and see. Will he sit up? Wait and see. Will he ever be off the feeding tube? Wait and see. Will he always have seizures? Wait and see. Will he always be on so many medications? Wait and see. I could go on but you get the point.

Can anyone fix my baby?

My heart aches for the Dekornes, I want their baby to be fixed.

“I waited patiently for the Lord, he turned to me and heard my cry.” Psalm 40:1

Prayer for a baby

Friends from Taylor Unversity, Mark and Heidi Dekorne have two little girls. The youngest, Kaiya is about two months old. A few days ago they found her unresponsive with a high fever. She was rushed to the hospital.

According to their updates:
Kaiya has been diagnosed with bacterial meningitis. She is currently receiving blood, being treated with broad spectrum antibiotics, and sedated so that she can rest peacefully.
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I just left the room because they are putting in the feeding tube. This will put breast milk directly into her small intestine. (the juju-something, not bees) They will also do an MRI later today. Her eyelids are beginning to swell because of the fluid. They did an EEG this morning and the preliminary results don't seem to show seizure activity...not really sure what that means as far as the pupil, but glad she's not having seizures. Her temperature is low right now, and not coming up too quickly despite extra blankets. Hopefully that will rectify itself soon. I am absolutely floored by all the prayers from so many of you I don't even know. Thank you doesn't seem to encompass my gratefulness. It means more than you know to hear from people all over the country (And Asia :)) praying for our sweet girl.
Check out the family blog: http://www.dekorne.blogspot.com/

Stay at Home Mom?

We have decided that we need help.

Since having Carter, I have been a stay at home mom. I have enjoyed it. I chose to be a stay at home mom. I know that Jeremy would have supported me if I wanted to go back to work but I loved to be home.

Having two kids, I could handle it and still loved being a stay at home mom.

Then I had Brayden, the third.

I thought I could handle his crazy schedule and still keep up with Carter and Luke's schedule.

I cannot handle it.

We decided that we need help.

Since school started, we are juggling appointments, therapies, school, school activities, etc. I cannot juggle anymore, too many balls are being dropped.

Thus we started a full search for help. One person, full time for Brayden and one person part time for Carter and Luke. Sounds great but I have a big mental hurdle. I never thought I would be one of those people with a nanny. I am a stay at home mom because I want to be a stay at home mom. The idea of having someone in my house...it is just not what I expected to happen when raising my boys.

Having a nanny is a bit scary. Carter and Luke can tell us about the person: what they did or did not do, activities, and more. Brayden cannot do that. He has seizures, meds, feeding tube... Will they know how to handle it? I have rarely left him with family let alone someone else.

We can list all of the qualifications that would be good but how do I find that person that will love and care for them, far beyond feeding and dressing them.

I pray that we will find the right people, a good fit for our family. I know that it will be great to have a nanny because we need help.

Not sleeping

This is not really about Brayden's sleeping habits. He has always been a good sleeper. A good night sleep makes everything easier for us to handle. This is about the most common comment we get about Brayden...

With a smile,"Ahh, he is sleeping."

I heard a version of this three times today from three different moms in the same building.

My middle child, Luke, goes to preschool Tues - Thurs. Brayden and I drop Luke off and pick him up each time. Luke climbs out of the car carrying his backpack. I carry Brayden. Getting out his KidKart and assembling it, is too much effort just to run into preschool so I carry him.

Brayden is not the easiest child to carry. He offers no help, in fact some days he provides resistance. He cannot hold his body or his head so I attempt to cradle him in both my arms. He is 19 months old and growing thus he is a heavy awkward load. A load I love to carry but still awkward.

I have been carrying him in and out of preschool this year and last. I see the same moms every day of preschool.

This morning I am walking into the school, Brayden breaks into a seizure. His seizures lately have a new look. Jeremy calls it the iron cross (think arms and legs fully extended and stiff). I kneel to the ground and stay still until his seizure passes. Standing over me a mom says "Everytime I see him, he is sleeping!" My reply, "I wish he was sleeping but not today." I looked down at Brayden, his eyes are wide open, clearly not asleep.

We walk to Luke's class, another mom with the same comment. I just smile.

Then come time to pick up Luke. The halls outside the classroom are full with excited mommies and children, loading up their backpacks and saying goodbyes. I am holding Brayden while talking with another mom. Again, another comment. "Wow, he sure sleeps a lot!" Again, his eyes are wide open and not asleep. I had no comment.

I do not find it hurtful, in anyway, for someone to say that. But at some point I feel like they are fishing for an answer. Brayden is clearly not sleeping. He is clearly a toddler that is not sitting on his mommy's hip or running beside.

I just ask that they ask. I have no problem answering.

He is not sleeping.

For now I "just smile and wave." - penguin from Madagascar movie (thanks Cara).

Little change, Huge change

Brayden has been on the new formula, Elecare, for two weeks. In those two weeks we have seen a huge decrease in the vomiting. In fact, it has only happened a couple of times. That is huge in comparison to the vomiting several times a day that was happening.

I must admit that I was a bit sceptical about the Elecare and a slight change in medication. After the countless tests and doctors with no answers, would a little change in formula and meds really make a difference? It sure did.

We are thrilled that the vomiting has almost gone away (also thrilled not to be doing laundry and baths every minute of the day).

Although, Brayden seems to be in pain.

Pain from what we do not know. Many times this past week he has been screaming in pain. He is not really a crier so we are not sure the best way to comfort him. A few nights he just cried himself to sleep.

It could be the new formula/meds or teething. Since he does not do anything orally, teething can be a bit of a pain. It takes longer for the teeth to come through. It looks as though he has 4-5 teeth trying to make an appearance. We are hoping that his discomfort is just the pains of teething.

If only he could tell us...

Not so generic anymore

This time of year, many people sit around a table full of food and share things that they are thankful for, Thanksgiving. I would have to admit that in years past my list of things I am thankful for, has been pretty generic; a list of things that many people probably have said or heard. “I am thankful for my faith, family, good health…”

This year is officially different for me. I have come to appreciate and be thankful for many new things, small things and even some hard things. Beyond my generic list of being thankful for my faith, family, good health (sort of)… here is my not so complete, not in any particular order, list for this year:

I am so deeply thankful for Jeremy. His love and love for our boys. This year has been hard, he and I have done our best to get through it and rise to the challenges.

I am thankful for my boys. I could blog about them for days.

I am thankful for amazing friends. We have new friendships, built up old ones and come to rely on so many. Jeremy has amazing college friends that pray for us and call on a regular basis. I have some amazing moms that I talk with regularly about anything from serious medical issues with Brayden to the serious discussion about the Hills (don’t even ask).

I am thankful for the countless people that have lifted up our family in prayer. People that we may or may not have actually meet. I am thankful for each email, comment and phone call. So many have helped us with information, guidance and support in ways that I never imagined I would need but did/do.

I am thankful for Waterford, yes Waterford. A long time ago, God knew that we would be here, a sweet little community that is nestled in Loudoun County.
This community has a top elementary school where Carter started Kindergarten and loves it.
We have wonderful neighbors that have become wonderful friends, friends that help us more than we could ever repay them.
Waterford has beautiful sunsets and open spaces that we enjoy everyday.

I am thankful for the countless doctors and nurses that continue to help our family. Doctors that we trust and trust us. Brayden has some amazing doctors that not only treat him but make Carter and Luke comfortable (the sticker drawer has been raided many times).

I am thankful for the hard times this year has brought upon our family. My relationship with Jeremy has been strengthened. We have learned not to take a “normal” day for granted. We love our boys more and more. We have learned God’s complex design for the human body and come to appreciate the idea of good health on an entirely new level.

I am thankful for a smile. I treasure a smile.
Smile from my children. Carter’s sweet smile. Luke’s adventurous smile. Brayden’s rare and precious smile. We do not take a smile for granted in this house.
Smile from friends and strangers. Smiles of love, understanding and support.

What things have been added to your thankful list?

Here is a smile passed your way, wishing you a very Happy Thanksgiving.

Toddler Tantrums

Brayden is not talking, “normal” talking is not in his near future. However, he has sounds that are all his own. The past few weeks he had become louder, making sure that he is heard. He wants someone to talk with him, he demands attention.

I started to notice that his cries are becoming more distinctive. He has never been much of a crier. I guess he has enough big things like needles, tests, doctors, nurses, etc. to cry about so everything else seems manageable. This past week he has been crying more. Tuesday night he screamed for 2 ½ hours. Any parent knows that non-stop screaming from your child is the hardest thing to hear. It is drains you like nothing else. This night Brayden was miserable. It seemed as though he was in pain and it was unbearable. We did not know how to comfort him or take care of whatever was bothering him. We had no idea what to do having tried a little bit of everything, including more medication. Jeremy and I took turns rocking him. He eventually cried himself to sleep (we almost did the same thing).

The next day he was in a pretty good mood and even did great with his OT on a therapy ball. Then came the evening, he started to cry. Jeremy swooped him up and settled into our big comfy chair by the fire. It came time for bed and Jeremy gently placed him into his crib. Brayden started to cry. We left the room hoping that he would calm down. He did not. I went back into his room and picked him up, he stopped crying. A few minutes later I put him back into his crib, he started to cry again. I listened to him. I realized this cry was different. He was not in pain like he was the night before. He wanted to be held and he was having a temper tantrum that he was not getting his way. The crying lasted for only a few minutes when he realized that he was in the crib to stay. I peeked at him to make sure he was okay and he was just laying there, awake, no problem.

Last night the crying started again. He screamed in the car for 40 minutes while I drove the boys to their grandparents house for dinner. Jeremy was meeting us there so I called him to let him know that Brayden and I were dropping off Carter and Luke then heading home. Brayden cried/screamed on and off for the next few hours. Having no idea how to console him, I wrapped in him in a blanket, sat in a dark room and held him tight. He cried himself to sleep again.

I actually wish he would just have a toddler tantrum.

As I type this he is screaming/crying again.

Can I have a tantrum?

Babies R Us and Rainbows

I realize the title of this blog may seem a bit strange but those two things were markers of my day.

First let me go back a bit….
The first time Jeremy and I entered Babies R Us was shortly after discovering we were pregnant with Carter (our oldest). We walked in and our jaws dropped. A store packed with anything and everything a baby could need and they convinced you that your baby needed every bit of it. I loved that store, registering for things, picking out exactly what I wanted, oh, I mean what the baby needed.

Brayden, being our third boy, I rarely venture into that megastore. To be honest, my experience there with Brayden leaves me with a heavy heart.

Shortly after Brayden was diagnosed (more or less, in many, many terms); we left a doctor’s appointment and had a few minutes to spare. I pulled into the parking lot of Babies R Us. I sat in the car for what seemed like hours, really was only several minutes, and watched moms hurry in and out of the store. I was angry and envious, here I was with my new baby dealing with gigantic medical concerns and they were fussing about which diaper was best for their precious one’s bottom. I really wanted to roll down the window and yell “If you only knew!” Instead, I sat in the car and cried.

Since that day I have been to Babies R Us only a few times.

Today, I went.

I pulled into the front handicap parking space, pulled out Brayden’s KidKart and feeding pump, hooked him up and headed in. I was there to look for a new pac-n-play since Brayden had done some irreparable damage to the previous one from a large vomit incident. Just walking in the door, one couple stared, stared hard but not making eye contact with me. Now I am used to people looking a bit but walking into the baby world people are curious not just about Brayden but everyone around them. What stroller do they have? What cute shoes! Why did they pick that bath tub? Where did they find that? So on and so on.

I proceeded towards the the pac-n-play displays. I walked past tons of baby items that Brayden could never use (but for the most part I am emotionally past that). Then a lady ran into Brayden’s KidKart with her shopping cart. She said “Sorry.” Then glanced down at Brayden’s contraption and looked back up at me. “Oh, Oh, I am so sorry,” seemingly extra apologetic for not just running to my child but a handicap child. No harm no foul. We went on. Then another pregnant momma passed by looking down at Brayden with such a look of concern I wondered if she might say something, then glanced at me with a pitiful smile.

I did not find a pac-n-play with a price I was hoping for so I headed towards the clearance section, my favorite place in any store. A sweet woman bent down, smiled, waved and waved at Brayden. He had no response. I did not have the energy to tell her that he could not see her. I appreciated her effort but no dice. I went on to the clothing section to look for buttoned one piece pajamas. Brayden needs the buttons so we can use his feeding tube through the night. But I found no pajamas.

At one point, I felt like the store was spinning, kind of like the storm in the Wizard of Oz, with mommies and daddies all around holding their healthy, developmentally on track babies. And I was standing in the middle with my nineteen month old who is developmentally close to a 3 month old and in his wheelchair. I was in the middle of the swirling storm.

I bought Brayden a little toy that giggled thinking he might giggle with it in one way or another and we left.

One more store and then I headed home. I could see up ahead a gigantic storm but the air was completely still. I had to go right toward the storm to get home. I drove a few miles and was then hammered with rain. Rain so hard you could barely hear a thing or see the car in front of you. It stopped raining a few minutes before I arrived home (it is a long trek from Waterford to the nearest Babies R Us).

I was standing in the kitchen asking Carter how his day was and I looked out the window towards our barn. There it was; a big beautiful rainbow. Carter and I ran out to the deck to marvel at the colors in the sky. I grabbed by camera. The picture does not do it justice.

I just stood there and thought: A beautiful rainbow as a result of a storm. There is a rainbow in this storm, my storm.

I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Gen 9:13 NIV

Crossing things off the List

Brayden was back at the GI doctor today. He still vomits 2-3x a day, mostly saliva and stomach bile. Several times it has been bloody but no blood since last week. We have definitely crossed many things off the list that could explain and help the vomiting problems.

Just to recap:

• Allergies – tested many times, allergic to nothing
• Reflux – has reflux but none of the medications seem to be helping much
• Seizures – sometimes seizures will induce vomit but for the most part seizures are controlled and the vomiting is not
• Stomach problem – it was found that he has delayed gastric emptying which was resolved by going from G-tube feedings to J-tube feedings also added medication to help his stomach digest the saliva and bile
• Stomach irritation – he has been scoped, looking for possible ulcers, sores, etc but nothing has been found.
• Hormonal imbalance – had an ECTH test to look at his pituitary and adrenal glands and the test came back fine
• ENT – looked for a possible irritation or problem that may have caused the bloody vomit. He was scoped and everything looked great, smooth and looking good.
• Medications – always adjusting and increasing. Also tried Zofran which should take away the urge to vomit but it has not done much good.

Now we are trying:

• New formula – was on Peptamen Jr. and will be trying Elecare (which is crazy expensive, approx $500 a month, we are hoping that between insurance and his new Medicaid, it will be covered)
• Adjusting the meds again – increasing a bit
• Haircut – ok, not really but I had to slide that in there some how. Haircuts are just as traumatic as some of his procedures. Jeremy gave him a haircut last night. I never like haircuts on any of my boys but Brayden needed it. When it gets too long he gets a bird’s nest in the back from always being on the back. Thank goodness he is not Samson and he still has his strength. It certainly accentuates his yummy cheeks.

We are praying that the new formula and a slight change in the medications will help. Brayden will be trying this out over the next few weeks. Since we have crossed many things off the list, Brayden could possibly be getting another GI scope and exploring the idea of a nissen. The nissen is:
the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal. – webmd Click here for a full description. The nissen requires some hospital time and down the roads has complications. The nissen is not something happening now, the doctor gave it as a possibility.

All of this just could be a neurological problem. Brayden's brain is abnormal in so many ways, the doctors do not know how things play out for him. We may just be waiting for him to out grow the vomiting, waiting to see if his brain can take care of it.

Does anyone, anyone at all, see something that needs to be added to the list? We are always looking for suggestions.

Tough

Brayden is tough. His little life is tough. Watching him go through all of this is tough.

After another scope, this time by an ENT doctor, we still do not have answers. We were hoping the scope would possibly show where the bleeding was coming from. It is great that the vomiting has not done damage to the throat area but we are still left with no answers. Maybe this time around the GI doctor will have some.

We came home from the hospital and I sat down to email an update but I found an email from my brother-in-law (I hope he does not mind me sharing).

We read this devotional this morning and I immediately thought of your situation with Brayden and how it relates to this devotional. We have experienced this same type of thing while waiting for an answer with Anna’s health problems...It is hard to NOT focus on WHAT we are waiting for, but HOW we are waiting. We are praying with you that the Lord reveals an answer to you through the doctors as to why Brayden keeps vomiting. We also hope that we find an answer as to why Anna can’t get rid of her sinus infections/bronchitis when she gets it. I know I personally find myself focused on the answer more than what he is trying to teach us while we wait.

It was a devotional from Our Daily Bread, that happened to be for that day. Click here to read.

A tough day and I needed some guidance, a little pick me up.

I read the email and the devotional. It applies to exactly where I am and it is tough. So, I read the devotional a few times, sat back and thought.

My reply to his email and the devotional:

Thank you for passing this on...

Waiting is hard. Suffering is hard. Waiting while your child is suffering is even harder. Patiently waiting feels impossible some days. Patience is not really a word I would use to describe myself (or Jeremy). It is difficult to be still and patient when you feel like your world is constantly moving, ever changing and throwing you curve balls.

I just assume that the Lord will take care of things. My problem is assuming the timing and/or the outcome, then I get impatient. I tend to put my nose down and plow through things, glancing up to the Lord. Then realize I need to look to him constantly not just glance once in awhile or look toward out of frustration/desperation.

As my (friend) says; take in the journey not just focus on the destination. Although I feel like our journey is filled with speed bumps, flat tires, broken engines...

Still just waiting and trying to wait patiently, not with my own strength but His.
Thank you for sharing,
Carrie

Brayden is tough. I am getting tougher just by waiting and learning to wait patiently.

Mother at the Swings

We went to the Clemyhontri Park in McLean, VA. again. If you remember, our last experience there was interesting (click here for the story and here for pictures). This time Brayden made it to the swings. This swing is one of many swings there for handicap children. It seemed to offer him just the right amount of support. He seemed to really like it and he even fussed at me when I put him back into his KidKart.

Uploading this picture, I remembered an article that I stumbled upon. I appreciate this women's feelings and conversations that she was willing to have. Conversations that I dodge because I do not know how to answer some questions.

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Chicken Little

Last night we went trick or treating. Carter and Luke were Batman and Robin. When we went costume shopping they picked out a chicken costume for Brayden. Not sure why but they thought he would like it. When it came time to get ready last night, I just couldn’t torture Brayden with a costume. He had a rough day and I (with Jeremy’s persuasion) just put a sweater on him, no costume.

I was putting the chicken costume away and I started thinking…

I feel like Chicken Little.

Who is Chicken Little you ask? This comes from an old fable about a chicken that believes the sky is falling. She was sitting under a tree and an acorn fell on her head. Convinced that the sky is falling, she runs around telling everyone and tries to prepare for disaster.

The past two weeks have been rough. Brayden’s vomiting has not gotten any better, in fact it seems worse. Last Friday night he vomited blood (not the first time this has happened). The blood was fresh. I panicked, thus one of my Chicken Little moments. Jeremy was out with Carter and Luke in DC. I was home alone with Brayden. It was about 8:00 p.m. or so. Who do I call? Any random on-call doctor will immediately send us to the ER and I could do most of what they do in the ER, right here at home. Brayden’s GI doctor is out of the country so I called our pediatrician. I did not call the office or the on-call phone number. I called her personal cell phone. Who does that? Anyway, she answered, recognizing my number. She talked me through a game plan for feeding and medicines and of course, “If he vomits blood again, take him to the ER.” I sat with Brayden, held him while he slept and once in his crib, checked him every half hour. I was ready for the sky to fall and head to the ER. He did not vomit blood again…at least for one week.

Which leads us up to yesterday morning.
I check on Brayden first thing in the morning. Every morning he vomits, so my day starts with his bath. Yesterday he did not vomit. I let him sleep because of his long day at GU hospital the day before. About an hour later, I checked on him. I could smell the vomit before I could see it. I walked over to the crib…

The sky had fallen. Brayden vomited blood. Appropriately, it was Halloween morning and I had my own bloody horror. When he has vomited blood in the past it is about 1-2 tablespoons. A couple of times the bloody vomit put him in the hospital. This time, the spot on his bed was the size of a large dinner plate; it was big and he was covered in it. The amount of blood made me freak out. I could barely figure out what to do. I called the pediatrican. Same as before, “If he vomits blood again, take him to the ER.” I wait, he does not vomit blood. He still vomits but thankfully no blood.

Meanwhile the pediatrician makes some calls to several ENT (ear, nose, throat) doctors to help figure out where the blood is coming from. Brayden’s GI track has been scoped and nothing is ever seen. Now the thought is that the vomiting and some extreme crying caused some damage up in his throat area. This is what happens to his skin on the outside, can you imagine what happens on the inside? His vomit landed on his crib bumper and sheets. His face was up against the bumper and he rubbed his face in the vomit causing the burns.

For now we are waiting to see an ENT doctor, hoping in the meantime the sky does not fall.

There are many times I feel like Chicken Little. I do not know when and what is happening, when to panic, or when the sky is actually falling. Thankfully Brayden’s pediatrician answers all of my calls (even on a Friday night) and helps me through those Chicken Little moments.