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.