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?