Brayden's Hand, Daddy's Face

Brayden had a rough day yesterday, a fever and too many seizures. The seizures seemed to be non-stop. We gave him a dose of Diastat (the emergency rectal seizure medication). He pooped just a few minutes after giving it. Oh great, did it do any good? We called the Children's on-call neurologist, for fear that we may be heading into the ER. Thankfully Brayden settled down and slept well last night.

Then today...
After his morning bath, he found his favorite resting place, daddy's lap. I went into the kitchen to get breakfast ready. Jeremy called me back into the room, "You have to come see this."

Brayden has been working hard to explore with his hands, trying to find his mouth or feel things around him. His left hand is used more often and becoming more useful to him. His movements are not necessarily intentional or coordinated but slowly getting better. His occupational therapist started working with him on reaching. She also suggested that we name what Brayden is doing. We say, "Getting in your chair, in your bed, washing your face..." to let him know what is happening. This can facilitate his learning and understanding, especially since his vision is extremely impaired.

The video is Jeremy asking him to do something and he responds! His hand movements are intentional. We have tried this several times today with great success! Our little one is doing big things. We wait and pray for moments like these.

My Sorority

I attended college at Taylor University. Where is it you ask? Indiana. Take a right by a farm, left by another, pass several more and soon you will find the campus. Taylor University is a small college, no fraternities or sororities. Students were grouped pretty much by their dorm, sports or activities.

I never thought that later in life I would be a part of a sorority. I do not mean a traditional sorority with Greek letters, rush and parties. I never wanted or ever thought I would be a part of this sorority. It is a group of moms; some I have met, others just by email, moms that have special needs children.

I have been surprised and blessed by connecting with these women. There is an instant bond and understanding. A few weeks ago, I sent out an email with a desperate plea for information about a J-tube and some medication. At the time, I did not know anyone that had a J-tube. That email was forwarded and forwarded some more. Soon my inbox was filled with emails from families that have dealt with similar issues. They offered us advice, questions to ask, their experiences, Bible verses and even just an email “We have been there, we feel for you and we are praying for you.” I have enjoyed reading the emails about their children and looking at pictures.

It is not just emails that have been helpful. We have several friends that we have known for years, who have special needs children; all very different circumstances but a deepened friendship as a result.

The bond is something I have come to appreciate. My questions, concerns or fears are understood. Just in discussion about the fear of sending Brayden to school. Many moms have dropped off their child or sent them on that special bus off to school. My eyes well-up with tears even thinking about it. There is some humor in sharing our experiences with the not-so kindness of strangers, doctors or crazy hospital adventures. There is comfort and safety sharing these things with moms of special needs children. No explanations, apologies or misunderstanding, they know.

I felt it shelter to speak to you. – Emily Dickinson

This is my sorority. The rush has been painful. The connections are helpful. The bonds are priceless.

Hello. How are you?

How many times a week do we say hello to people and ask "how are you?" Do we really want to know how they are doing or have the time? Do we just ask out of courtesy?

How am I? I would say, “We are doing okay. Busy morning for Brayden, got the other two off to school. They had a wonderful time at school while I was running some errands. And I am loving this weather and ready for fall.” I am pretty sure those words came out of my mouth several times today.

Inside my head I am really thinking. Today has been rough. I have cried a couple of times and been ready to cry several times. I woke to find Brayden had vomited…again. It was so acidic that it literally burned his skin, the backs of his arms from elbow to shoulder and half of his back. I tried to bathe him but the sting of soap and water caused him to scream in pain. I could not get him to calm down. I finally took him out of the bath, wrapped him in a towel, sat on the floor and held him for about 20 minutes. Meanwhile Carter and Luke are not dressed for school and we should have already left the house. Luke is upset about being late. I am on the phone with the doctor and still trying to calm Brayden. His skin was bleeding and burning. The doctor called in a prescription for burn cream (thus my errand running). I decided to just leave the house with breakfast plates on the table, Brayden dirty sheets on the bed (I am still washing them everyday because of vomiting), pajamas on the floor and probably a dirty diaper next to them. If you know me, I like to have the house clean and tidy before I leave so walking out the door with the mess was hard. We finally made it to school. I was not sure that I even brushed my teeth. That was the first two hours of my day.

How am I? Grouchy and frustrated. Aren’t you glad you asked?

Questions? Only some answers.

Is Brayden’s new G-J tube working?
Brayden is getting his feedings through the J-tube portal. The food is going directly into his small intestine; which means he is not vomiting his food anymore. We have been able to get the correct amount of calories in him. Before his new tube we were only able to get in about 400-500 calories a day. The past couple of weeks he has been getting around 900-1000 calories day.

Is Brayden still vomiting?
Yes. The vomiting is no longer his food (because it is not in his stomach). It is horrible retching of stomach bile, which looks incredibly painful and burns his skins on contact. Once he starts, it takes him some time to calm down. We do not know why this is still happening.

Could it be because of seizures?
Possibly, but one of his seizure medications has been increased. The seizures have been doing better but not the vomiting.

Could it be severe reflux?
Possibly, he is taking Prevacid and Zantac. We have no idea if these medications are doing much good.

Anyone have any good insight or thoughts about any of this? Are there other reflux medications? Could a nissin help (Brayden does not have one)? Are there any questions we should be asking?
Brayden is scheduled to see the GI doctor at Children’s on Thursday, we want to be informed as possible and find a resolution to the vomiting. If the vomiting does not decrease, the plans for Brayden to eat orally or to have things put in his stomach becomes a harder goal to reach.

How is Brayden doing?
Other than the vomiting, Brayden is doing great. Last week his occupational therapist, Ms. Pam, came for his weekly appointment. He was thrilled to see her. Brayden has been working with her since he was about 3 months old. He grinned and pulled out all of his tricks that afternoon. She brought toys that make noise and things for him to bang on. He gave it his best effort. In his somewhat random/coordinated movements, he was able to bang on a little piano. If he hit a key, he squealed with excitement. The moment Ms. Pam walked out the door, Brayden slept for the rest of the afternoon. He was wiped out.

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Feel free to ask us questions, we do not mind answering.

PC

PC, or politically correct. How does that apply to Brayden? I was talking with a friend yesterday, whose daughter has special needs. She just went to a workshop for disability advocacy (I do not remember the official title). One of the topics was language and changing the language we use to describe disability or handicap.

To be honest, I have no idea what words to use. Sometimes we say Brayden is handicap, special needs, developmental delay, severe and multiple handicaps. It always depends on who we are talking to. I have no idea what is PC to describe my child. Frankly, I am not sure I care. I am aware that it could be an issue but for right now, I do not know what to think about it. Brayden’s conditions are not easy to describe and that random person in the store just wants a quick answer not his medical history. His medical history is barely understood by doctors.

Sometimes I need people to know that Brayden is handicap and he requires extra help. We have a child with special needs and we need special accommodations to make his world work for him.

Many words can be harmful but it seems more about the context in which they are used. “My son is handicap.” “Oh, look at that handicap!” Same word, different context.

Speaking of PC, I saw an interesting segment on TV this week. I would have never paid a bit of attention to until we had Brayden. A large shopping center here in Northern VA, is Tysons Corner; a mecca of shopping. The mall is trying to promote “green” living and created spaces for hybrid cars. Priveledged parking for those driving the “green” vehicles. Sounds like a great idea. The reason it made the news was not because of promoting “green” practices it was because of the location of these new parking spots. Several of the spots were clearly once handicap parking spaces. You can see where the painted handicap sign on the pavement was covered. Some of the spaces are closer to the handicap ramp to get up to the sidewalk and closer to the mall entrances. Interesting…I know that being “green” is great but over the handicap? Which is more PC?

I have probably offended the PC people of the world.

Talking

This morning Carter was talking with Brayden. I was in Brayden’s bathroom preparing all of his morning medications. I was listening.
Carter said, “Brayden what are you going to be when you grow up? I am going to be a zookeeper. You can be something like a zookeeper. Mommy, what do you think Brayden wants to be?”
I replied, “Well Carter, I am not sure what Brayden will be. He is probably going to spend a lot of his life with mommy and daddy. Since he cannot see very well, sit up, walk or talk. It might be hard for him to leave home.”
Carter looked at me with a face of disagreement. “Mommy, Brayden talks all of the time.”
I asked, “What do you mean?”
Carter went on to demonstrate several of Brayden’s noises, of which he can perfectly mimic. Sometimes so well that I have to ask who made the noise. “This noise is his happy noise…This one is when he wants you…He cries when he is sad and tired. Brayden knows how to talk.”

I said, “You are right buddy, he does have his own way of talking and he loves that you know that.”

Handicap on top of Handicap

Brayden is almost 17 months old. For the first twelve months of his life, I felt like we had it pretty easy with him. Brayden had no huge medical concerns. Of course he is dealing with seizures but we have come to accept them as part of his daily life and know when an adjustment in medication is needed. Since his first birthday, his handicaps seem to become greater.

As Brayden grows, his limitations and abilities become more apparent. I spoke with the neurologist for a long time last week. We have discovered that his basic function of controlling his body temperature is not working. Throughout the winter Brayden’s hands and feet would become red and extremely swollen, his body overcompensating to keep his extremities warm. Then come spring it has not happened once. Then we noticed this summer that Brayden does not sweat, not a drop of perspiration on his body.
His basic function of digestion is not functioning properly. He just had his G-tube was replaced with a G-J tube; his stomach was not digesting properly (G-tube) and needed a J-tube to go right in to his small intestine.

The decision for Brayden is get the G-J tube was some what difficult. I said to Jeremy, “How can Brayden be more handicap?” Having his food go into his small intestine instead of his stomach, that seems like a major set back. He is going to be hooked up a machine, the feeding pump, around 20 hours a day. What kind of life is that? There is some comfort in knowing that he is getting nutrition and not vomiting it all up, giving him the best growth opportunity.

It seems as though every couple of months we add another aliment to Brayden’s medical issues. As he gets older handicaps become more apparent, like his seizures. When a baby twitches no one seems to notice, when a toddler twitches it looks more dramatic. The past couple of months, he vomits after some seizures.

Each month passes and we are adding handicap on top of handicap: unable to hold head, sit, talk, walk, see, eat, etc. We do not expect much from a baby so we were not aware that Brayden maybe dealing with more and more. As he is becoming a toddler, issues are coming to the surface that may have been there all along but we are just learning to recognize them. As a baby he used the same baby gear his older brothers used. Brayden grows and he needs more handicap equipment: KidKart, bath chair, feeding pump, etc. We are grateful for the equipment because it makes life easier and more comfortable for Brayden but it makes things feel more handicap.

Handicap on top of handicap and we adjust.

Tolerate

*Update Sept 11
Brayden was able to tolerate his feeds so he was discharged. He is home and doing well. This is his new hardware.
Gastric - into his stomach
Jejunal - into his small intestine
Bal - checks the water balloon that helps hold it in from the inside
He will be on 20-22 hour continous feed.

Anyone that has experience, advice or comments about this please pass along. We have only come across a couple people whose child has had one. Post in the comments or email, thanks for your help
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Brayden had his G-tube removed and received a G-J tube. The hospital stay has been/will be about 6 days. Starting with IV fluids, scope to see his digestive system, placement of the J-tube and some feedings to make sure he can tolerate the feedings going into his small intestine.
I cannot even begin to describe G-J tube. It is much bigger than the mickey button he had for the G-tube. We have requested a full tutorial on the new tube. We want to know all about it.
Brayden is doing amazingly well and tolerating everything with flying colors. I mean that he is tolerating the hospital experience, the constant vital checks, nurses & doctors poking at him, not eating for a few days, sleeping in the hospital crib, noises of having a roomate, etc. He is tolerating it all, even making his happy noices and smiles this morning, despite what his body has gone through.
The next couple of days he will be watched to determine if he can tolerate the feeds.

A visit

Jeremy brought Carter and Luke to the hospital this evening. It was the first time they have been at the hospital with Brayden. Carter and Luke sometimes attend Brayden's doctor visits, they are home when the therapists come to work with Brayden but they have not been a part of Brayden's hospital adventures. You wonder what they will think of it all. Of course, they were completely fine. Carter and his little enquiring mind asked what each machine did and how it helped Brayden. Carter immediately stood up on the chair next to Brayden's bed and gently patted him, saying "Hi Buddy." Luke asked to be picked up and give Brayden a kiss, of which Brayden does not always enjoy but did not mind this time. The boys talked to Brayden, sang some songs, dined in the cafeteria, watched a little TV and did it in 15 minutes.

They miss him and want him to come home. Driving back to the house tonight, Luke sat in the back and whined every couple of minutes (it took us 75 minutes to get home), "I want Daddy and Brayden home." All I could say was, "Me too."

Bad Brain

The list of Brayden’s aliments and medications is long. I have all of them memorized. I regurgitate the information a couple times a week to doctors, insurance companies, on medical forms, etc. In emergency I have to pass on the information to the EMTs, ER nurses and doctors, admitting physicians, floor nurses, head nurses, medical students, on call doctors, residents, attending physician…the list goes on and on.

After our last hospital stay, I created a card that contained Brayden’s information. All of it is there, spelled correctly, proper diagnoses, medicines and doses written, ready for anyone to read. Then I could concentrate on Brayden, comforting him. It looks something like this:
On Sunday, we were in the ER at Children’s and in the process of being admitted. We handed the card to the doctors who were seemingly impressed that we had everything right there ready for them to read. We waited and waited in the ER for Brayden to be transferred to his room. The admitting physician came in to get Brayden’s medical history. He asked a few simple questions about Brayden’s development, I did not hand him the card. Then he asked the big question; “What is his diagnosis?” I never really know how to answer that question. Brayden has so many things and no real label that would describe him. I pulled out the information card I created. The doctor started reviewing it, asking a few questions about his medications. Then he reached the part listing the brain abnormalities. He read each word. Then tried to make a joke and said, “I used to work with a doctor that said this and I am going to say it now. BAD BRAIN. He has a bad brain.” He chuckled. Jeremy and I were a bit shell shocked that he said it. We know that Brayden has a bad brain but have never had someone say it with such little tact.

Bad brain but a good baby. Bad brain but a loved baby. Bad brain but my baby.

Again

Brayden is in the hospital again. Again, it is a waiting game. We are waiting for him to be scoped to see if there is any explanation as to why his stomach is not digesting. The vomiting has been happening the past several weeks again and again.
Again, we do not have any easy answers. Again, we have doctors, nurses, med students asking tons of questions.
Again, we wait.

Below are our emails leading up to this adventure.
Aug 31
Well, I thought this summer was going to be pretty smooth and uneventful…I was wrong. Brayden needed to shake things up.

He is 16 ½ months old. He is still struggling with seizures and that is just going to be part of his life. But the seizures are not why I am writing this update. It is about the vomiting, it has been all about the vomiting this summer. Since the hospital stay, the vomiting has decreased in frequency but it is still happening. Every morning he vomits. I have to wash his sheets, crib bumper, mattress and him. Thankfully he loves the bath. The past week he has been vomiting 2-3 times day. We continually adjust the amount of food he gets through the G-tube to see if we can find a happy place where there is no vomit…We have not found that place.

Just to give you an idea of his feedings (30 ml = 1 ounce)
8 p.m. – 7 a.m. continuous feed, 11 hours he is hooked up to the feeding pump getting 35 ml per hour
10:30 a.m., feeding pump - hooked up for 1 hour and getting 50-75 ml
2:00 p.m., feeding pump – hooked up for 1 hour and getting 50-75 ml
5:30 p.m., feeding pump – hooked up for 1 hour and getting 50-75 ml

If you add all of this up, he is not getting enough calories, several hundred less than he should be getting. He is really under weight for his age; did not make the growth curve for his last check up.

Brayden has been doing wonderful with spoon feeding. We are able to get about half of a small baby food jar in him (not on him). This helps with him getting additional nutrition. We try to spoon feed him 2x a day, some where between the tube feedings and vomiting (FYI when yogurt is vomited, it is the smellist thing ever, I do not wish that on anyone).

We talked with the doctor this past week and we are going to add a high calorie powder, DuoCal, to his feeds. This will help get a little more in him, not enough but more. Over the next couple of weeks we will be trying to figure out what to do and hoping to see the GI specialist at Children’s.

A new thing to add to Brayden’s list, no sweating. Brayden does not, in any way, perspire. This summer we discovered that in the heat, Brayden does not sweat/perspire. Any one with little ones knows that the summer time and car seats makes a child sweat. Their little backs are usually damp with perspiration from sitting in the car seat even if the air conditioning is cranked. Jeremy and I have been watching Brayden the past month to see what happens when Brayden gets hot. Well, he gets hot, red and hot to the touch. He gets a fever but no perspiring. It seems as though Brayden’s body does not know how to control his body temperature.

This answers why Brayden’s hands and feet would be red and swell during the cold weather. During the winter, Brayden’s hands and feet would be red and extremely swollen. It seems as though his body would overcompensate for his hands and feet being cold and pump and pump blood to them making them red and swollen. Since we have had warm weather it has not happened once.

We just started talking with the doctors about controlling his body temperature and have no idea where this may or may not lead. Just another thing to add to Brayden's ever growing list.

Ok, that was the heavy stuff. Now some good things about Brayden. He is developing in his own way. Smiles are coming more often. He is a people person. He likes for people to be around, especially his brothers. He is doing really well with therapies. He is relaxing his tight body and trying to discover that his has two sides and a bottom half. He little hands work hard to discover things around him and trying to make a somewhat coordinated effort. Brayden is easy going and seems to continually surprise us with things he can tolerate (vacations, parks, his brothers, etc.).

We are turning the corner into Fall and starting new routines and activities for everyone in the family. Please pray for us as we try to juggle school, activities, doctor visits and therapies. Please pray that we can find a solution to Brayden’s vomiting and body temperature issues.

Sept 5
This week has been a rough week in our house. Brayden has not been keeping much food down. All of his food is through his G-tube. When we try to spoon feed him, it seems to come up as well.
Basically Brayden's stomach does not seem to empty very fast as a result we can not give him much food. The quantity is about half of what he should be getting. Even if we change formulas and change things around it still would not be enough change because of how slow his stomach empties. The GI doctor wants Brayden to be hooked up to the feeding pump for 22 hours a day and getting a very slow drip hoping that we can get some food in him. If we cannot make this work in the next few days. Brayden will be admitted and possibly getting a J-tube. The J-tube goes directly into the intestine and bypasses the stomach completely. Even if Brayden gets the J-tube he would have to be hooked up for something like 18 hours per day to get enough food since it is not holding it like a stomach would.
For the next few days we are trying to get the vomiting under control and get enough calories in him. The GI doctor gave us a prescription for Reglan. Reglan is supposed to help with gastric emptying but is known to have neurological side effects. I told him that I did not like the drug and was against it. The doctor found that it is one of the last options. I am waiting to hear from the neurologist about the medication. I am not going to give it to him until I hear something about it.

I want to ask anyone and everyone about Reglan and a J-tube. If anyone knows anything about Reglan please email me. Also if anyone knows much about a J-tube please email me. I do not know anyone who has a J-tube.
It seems as though we will need to be making a decision in the next few days.


Sept 7
We have been laying low this weekend partly because of the weather and mostly because of Brayden. We have been trying the 22 hours continuous feed and Reglan (with the okay from the neurologist). Things are looking a little better but still vomiting. After at 3:00 a.m. giant vomit, bath, change of clothes and bedding, we decided we cannot delay the J-tube any longer. It seems that this is the best option for Brayden right now.
We are heading into Children's of Washington DC this afternoon and will probably be there at least a few days. We are not sure yet about the details.
Thank you to everyone to passed on our plea for help and information. We received tons of emails, of which I will respond to at some point. We received emails for doctors, therapists, parents with disabled children and people just offering support and prayers. Thank you for taking the time to send us all of the information. It was extremely helpful and helps me feel more informed about this next step.

My love hate relationship

I have a love hate relationship in my life. A relationship that started off as an always positive experience but the more and more time I spend with it, the more I cringe when I see it. I am talking about the washing machine.

I love the results of my washing machine. Put in the dirty clothes of my boys, with food, dirt, grass and whose knows what else on it, and out comes clean clothes showing no evidence of the previous mess.

I hate my washing machine. I tell the boys never to use the word hate but I am making an exception for myself. I am spending too much time with the washing machine. It is constantly running. You would think all of the clothes in the house would be smelling fresh and clean but that is not the case. If you lift the lid you would find Brayden's clothes or sheets or chair covers.

In Greek mythology there is a character, Midas, that has the ability to turn everything he touched into gold. If only that were the case here; anything that Brayden touches turns into dirty laundry. Yesterday, he went through three sets of sheets, three outfits, two baths, one seat cover, four towels and one blanket. The smell of the his dirty laundry is too much for my nose to handle so it is immediately placed in the washing machine. It was running non-stop yesterday.

The vomiting has to get under control. I feel terrible for Brayden and what his little body is going through. We will hopefully find a solution soon but for now I am turning my frustration towards the washing machine.

My love hate relationship.

One year ago today

AUG 31

One year ago today we sat in Children’s Hospital waiting for Brayden’s MRI. The test of all his tests. The test that showed us in black and white that Brayden’s brain was extremely abnormal. Before the test, we hoped his brain was well developed. We had fuzzy ultrasound pictures that showed some problems but maybe he had a chance at leading a somewhat normal life, of course with some limitations. The test showed us otherwise. The test results came. The doctor gave the awkward pause and then the hard to hear explanation of the findings. Brayden’s brain did not develop is several areas, some parts he is completely missing…

One year ago today, Brayden was a newborn with developmental milestones to be reached. One year later, we are still striving for developmental milestones, creating our own milestones and celebrating any milestone that comes Brayden’s way.

One year ago today, we had the test of all tests. Not realizing that each day of Brayden’s life would continue to be a test. A test in understanding, trust, hope, patience and love.

I actually said it out loud

Have you ever had someone say something to you that was just rude and inappropriate? You get flustered and cannot get you wits about you to say something back. Then you find yourself replaying that moment knowing exactly what you coulda , shoulda, woulda, said.

Well, I had one of those moments but I actually said something back.

Today, I took the boys to the most amazing park in McLean, VA. It is designed to be a fully handicap accessible park and has an actual carousel that the children can ride, including ones in wheelchairs. I was excited to go and let Brayden try out few things. We arrived first thing in the morning. We pushed Brayden's KidKart all around the jungle gyms and he got to follow his brothers around. Carter and Luke were excited to show him all around. I really wanted to have Brayden try the handicap swings, designed for child that cannot sit up. Much to my dismay, everyone else was using the swings and we just had a brief moment to try it out. I am pretty sure that Brayden was the only actual handicap child in the entire park. We will have to go back another time for a good try.

By lunch time, the park was packed. Every square inch was covered with eager children. The spaces in the parking lot are limited and many people have to use satellite parking down the road. We did not. We have that wonderful handicap tag. I love it because I have enough room to set up Brayden's KidKart and load him in with ease.

We set up for lunch at the picnic tables. The boys were sitting with their Aunt and cousins while I went to the car to get the cooler. I was reaching into the car when a woman walked behind me. She said, not so quietly under her breath and with a lot of sarcasm, "It must be nice to get such nice parking space." She said it loud enough for me to hear and was definitely nasty. It seemed as though she thought I was not justified to be using one of the front parking handicap spots (there are a lot of handicap spaces at this handicap accessible park). I turned around and said, as nicely as I could, "We have to have some perks for having a handicap son in a wheelchair." Her faced turned white and she quickly walked away.

I actually said it out loud. I was still flustered because I said it.

Check out our family blog for pictures of the day.

Left Out

Carter, my oldest, is starting kindergarten next week. I know that he will handle this new step in his life with ease and excitement. He has always been able to step in to new situations without much concern. He might be timid at first but that quickly fades and he will be comfortable with new friends. As his mom, this makes me more comfortable with him starting kindergarten. Of course I have normal concerns about taking the bus, adjusting to a new teacher, new school and new friends. I was talking with a neighbor, whose son will be in Carter’s class. We both agreed that we are concerned about our children fitting in, making new friends and not being left out.

Isn’t that everyone’s concern; for ourselves and our children? No one likes the feeling of being left out.

My heart aches when we are at the playground and I see a child being left out. I never want my children or any child to feel less important and left out.

This past week we joined the Jenkins families at the lake. I was concerned about going weeks before we went. I did not know how Brayden was going to handle the situation and I did not know how I was going to handle Brayden handling the situation (did you understand that?). The first couple of days were a bit rough for him. He seemed overwhelmed with being in a new place and all of the noise that comes along with cousins playing everywhere around him. He vomited several times and threw in a few seizures to start off the week. One vomit was so big that the entire pac-n-play was covered and required a huge scrub down, yuck! Immediately I was feeling left out. I knew that I needed to stay at the house with him instead of heading out on the boats. Brayden needed to settle and adjust. I was concerned that once we are able to take him on the boat, things would not go well for him. Then we would have to have someone drive the boat back to drop us off and we would disrupt everyone’s fun.

Over the summer we have discovered that Brayden does not sweat. He does not seem to have the ability to control his body temperature effectively. Instead of sweating his gets a fever. Just by touching him, you can feel how hot his little body is but not a drop of sweat to be found. The doctors are finding that Brayden’s autonomic nervous system does not seem to function properly. Yet another reason, the boat might not have been a good idea for him.

I always want Brayden to be a part of the action. He actually is a people person. He likes for the noise (not too much noise) of people talking and playing to surround him. We found that he seems to call out for people to come and be around him.

The weather at the lake was marvelous. Cool in the morning; cool enough for Brayden to join everyone on the boat. After a rough first couple of days and my worries, Brayden loved the boat. He did not mind the life vest, the boat ride or the kids playing around him. When the boat was parked by the shore for the children to play, we placed Brayden in his KidKart and he was happy just being there.

This summer has been difficult for Brayden. He had so many doctor appointments, more tests and hospital stays. I have been feeling left out because not being able to go to bible studies, play dates, parties or just popping over to a friend's house. My time has been consumed with taking care of my boys, a bit of tunnel vision. I talk with friends and neighbors; the world continues to move on with or without me being there.

As least for the lake we were there, in the action. No reason to feel left out.

Look into my Eyes

My brown eyed boy, my blue eyed boy and my hazel eyed baby boy.

Have you ever heard that the eyes are the window to the soul? You begin to understand someone, who they are, by looking into their eyes.

I truly enjoy looking in to my children’s eyes and finding that connection, a special bond. Just one glance and they know what I am thinking; whether it is a glace of “I love you” or the glare that “you are in trouble”.

I can tell what they are thinking. You can see in Carter’s eyes that he is very contemplative, pondering anything that comes his way. Luke’s eyes are searching for fun and adventure.

Brayden’s vision capabilities are extremely limited. His optical nerve, the connection from the eye to the brain, is abnormal. The occipital lobe, the part of the brain makes sense of what the eye is seeing, is extremely abnormal. Imagine high school biology class, the brain has ripples and is wavy; Brayden’s occipital lobe completely smooth and small. We found that he may see something but very little. He prefers to “look” at motion from his peripheral view; straight on is too much for him to process. He will glance at reflective objects, like the back of CDs or shiny balloons.

Discovering that Brayden’s ability to see was extremely impaired was devastating for me. My biggest fear is not having a strong connection. I want him to know me and for me to know him.

Seeing is an enormous learning tool that was never given to Brayden. Seeing a parent smile, the baby can smile back. Seeing the parent coming to get them, the baby feels safe. Seeing an exciting toy, the baby may try to reach for it. Seeing the food coming, the baby can learn to open their mouth in preparation.

I tend to forget that Brayden is visually impaired (that is PC for blind), he has other medical concerns that require more attention. When coming in to his room in the morning, I try to remember to talk softly before I reach in to his crib. If he does not know that I am coming, he is startled and tends to get upset. I forget to mention at new doctor visits or hospital stays that he cannot see. His other problems are usually why we are there and the vision impairment is not at the top of the list. I forget that Brayden's lack of seeing is a large hurdle to his development and learning. He has to learn to compensate, as do we.

I stare into Brayden’s eyes, longing for that connection. I stare into his eyes wondering what is behind them, what he can see and understand. I stare, he stares. He stare is mostly vacant. I know that he is in there and we get small glimpses of him in his noises, cries and just nestling into our arms. We have to find ways to compensate for him not seeing, find ways to connect.

Help Wanted

*Disclaimer: this blog is not about me asking for help it is just me venting my frustrations.

There are not enough days in the week. Brayden averages 4-5 appointments a week; thankfully Brayden’s occupational and vision therapist come to the house but we have other therapies and a hand full of doctors to see on a regular basis. Having several appointments is our typical week. Living about 30 – 60 minutes from most of the offices he goes to, we spend a lot of time out of the house.

School is starting up in a few weeks. Carter will be going to afternoon kindergarten from 11:30 - 2:30. Luke will be going to preschool (which is 30 minutes away) T, W, Th from 9:30 – 1:30 p.m. Some how I have to manage getting Luke to preschool, Carter catching the school bus, picking Luke up from preschool and picking Carter up at the bus stop; all the while finding time for Brayden’s countless appointments. I have no idea how to do this.

From the start, we have struggled finding help with Carter and Luke. It is not a consistence time that we can schedule with someone; it is all based upon Brayden’s crazy schedule of therapies and doctors, which can be very last minute. Carter and Luke have been dropped off at so many places. I desperately want to find a good system for them when school starts. I am tired of disrupting their lives and not knowing who will watch them.

I have a hard time asking for help, admitting I cannot handle all of this and I do not have it together. Many people have offered help but it is hard to know how much to ask of them and sometimes it is not that kind of help that is needed. People that I thought could really be of help have turned out to be no help at all.

Today, I requested a VBS camp to accept Luke, even though he is too young. He would really enjoy VBS but the truth is that I need childcare for him. We have five appointments that week. Carter is going to the VBS so I needed a place for Luke. I felt uncomfortable asking this church to make an exception for my child. Why should I be an exception? I asked the therapy center to change our appointment time in the fall so I could get Luke and Carter to school. The center had to call a few other families to move around the schedule. I felt uncomfortable asking. I had to make an appointment with the pediatrician, whose schedule is full for weeks. I asked if she could squeeze Brayden in just a few days because we missed his 15 months check up due to the unexpected hospital stay.

I have a hard time asking anyone to help or make an exception for our family, especially when I cannot reciprocate. They have their own lives, with busy schedules and do not need my ever changing schedule disrupting their day. The next couple of weeks I will be making those humbling and uncomfortable phones calls asking neighbors (who are wonderful) and close by friends to help with school pick ups and drop offs. Maybe we can hire someone for random hours.

I just sat in the car today and cried. I am trying to make everything work. It is a puzzle that I am trying to align and fit all of the pieces in to but I have not figured it out yet. I do not want Carter and Luke to feel this chaos and feel like Brayden’s life is first priority. I do not think that they feel this way but I am always concerned. I have no idea how to get everything done; school, appointments and possibly squeezing in some actual fun activities (even if it is a drive threw the McDonald’s to get the boys a milkshake).

I saw this in one of my “disabled child” books: Contrary to popular belief, help is not a luxury, a self-indulgence, or a sign of weakness. It is a necessity.

It is difficult to ask others to switch schedules, make exceptions, drive to our house to help and try to understand our circumstances. I do not want to inconvenience people. I really do not want to inconvenience people. I do not want people to help because it is out of obligation (we know when they help out of obligation, the attitude behind the "helping" is not well hidden).

I do not know who or how to ask for help.

I need help.

Back to the Future

An 80s classic movie is Back to the Future. It was one of the first "grown up" movies I was allowed to watch. Michael J Fox, time travel and the Dolorean, could you ask for a cooler movie? The whole idea of going back in time is an interesting idea…

I just celebrated my birthday this past weekend. My grandmother always told me that as you get older, birthdays become more nostalgic; pondering the days of the past...she was right. With each birthday, time goes by faster and faster. I cannot believe that I am many years out of college, a wife and mother to three boys. How did this happen so fast?

I started thinking, if I could go back in time and talk to my college self, what would I say? Tell myself about my life to come; the places I will live, friends, Biffs to watch out for, my husband and children. Would I talk about the joys and hardships of the coming ten years? Would I tell myself about Brayden? If I did tell myself about Brayden would or could it change anything?

This time last year we could barely understand Brayden’s conditions. I thought that if I could fast forward the year then we would be in a place that we could handle the idea of having a special needs son. We would know what we needed to do for him and his limitations. We are not there yet. I really thought that this past year, things would be getting easier for Brayden and our family. The truth is things are getting more complicated. As he gets bigger, his problems are getting bigger. The blessing is that we love Brayden more each day and we are learning more goods things about him.

Part of life is not knowing what the future may bring. We cannot go back and change things in the past (I would not change anything). We cannot see in to the future.

It makes us trust in the Lord.

They love him, they really love him

I was getting the boys ready for the day. Brayden was in his room with his feeding pump, he was set for an hour. Brayden’s first feed in the morning is sometimes ready before he is. I place him in his little chair, turn on the feeding pump, soothing music and close the door to his room. Many times he will go back to sleep. I was contemplating Carter and Luke’s clothes selection for the day when I saw Brayden’s bedroom door open. I was ready to punish one of the boys for bothering Brayden. I walked in to the room and found Carter sitting beside Brayden. Carter pulled over a stool and put the fish light (the only thing we have seen Brayden glance/try to look at) next to his little brother. Then placed a kick toy in front of his feet and a rattle toy by his hand. Carter brought in one of his workbooks because thought Brayden might want to learn phonics with him. The two of them sat in the room for an hour, just hanging out.

Later that evening, Carter asked if he and Brayden could watch a movie together. Carter asked if Brayden could sit in his lap instead of in his chair.

They love him, they really love him.

Dear children, let us not love with words or tongue but with actions… 1 John 3:18

Wonder not Worry

Do you ever sit and think about the future? About your children’s future?

Trying to see or predict the future is a big money maker. Remember the infomercials for Psychic Friends Network (if you had a TV in the 90s it was hard to miss)? You could call Dione Warwick’s personal psychic for a reading. The majority of magazines and newspaper have horoscopes, ready to tell us our future for love and life. Have you seen a crystal ball or magic eight ball?

Planning for the future is marketed across the country, especially now with so many families in financial trouble. Every morning talk show has segments about establishing ways to save your money for retirement, homes, or a child’s education. Stay up late and watch TV, every other channel has infomercial about planning for you future.

I find it fun to look at my boys and think about their future “What will they look like as grown-ups?” “Who will they be?” Some days I wonder about a list of things: schools, sports, activities, friends, dating, occupation… It is exciting to know that their whole life in front of them and anything seems possible. I have read Dr. Dobson’s Bringing up Boys a couple of times. The first read had an idea that really resonated with me. We are raising our boys not just to be good little boys but good, no more than that, extraordinary men, husbands, fathers and men of God. We are planning for their future by how we are raising them.

Last week the boys and I stopped to visit a friend who just gave birth to their fourth child. The kids were playing and we had a few moments to sit and talk, a rare and not often granted moment. She has a toddler son with Down syndrome. We were talking about our handicap children and how much they change and shape our lives. They change our thinking. We both found that we think about the future for our children but not Brayden and Peter. We do not think about ten years from now or even a couple years from now. Of course we plan for things but not too far ahead. When we first found out about Brayden's brain abnormalities my thoughts, concerns and worries were all over the place. Thinking about the here and now, the future, the future of our family. That quickly settled but sometimes comes back with an ugly appearance. The Lord protects us for thinking and worrying about it. Honestly that part of my thought process is shut down. I know that it could be too painful to even start heading down that path.

It is fun to wonder about the future but not worry.
“Do not worry about tomorrow, for tomorrow will worry about itself…” Matthew 6:34

Makeover

One of my favorite types of TV shows is anything about a makeover: What not to Wear, Extreme Home Makeover, any talk show doing makeovers. I rarely tune in for the entire show. I only watch the show for the moment they show the before and then…Wow, the after!

We had our own little make over tonight. Brayden’s haircut. This is not his first haircut, it is his third. He has a lot of hair. When it gets long, the hair on the back of his head turns in to a little bird nest. He shakes his head back and forth because he does not know what else to do with it. The result is a knotted mess. The front gets on his face and he cannot push it back.

His before
The haircut is a process. Stress levels are high for Jeremy, the daddy/barber, and Brayden. Brayden fights, fusses, cries and shakes; he tries any tricks he knows to get out of the haircut. I sit him in my lap and attempt to hold him steady. We put him on his side, back, belly and sit him up to try and get all the sides of his head. Let just say hair was flying! Carter and Luke stood by as cheerleaders. “Brayden, it’s okay.” “Brayden hold still.”

His after

I thought makeovers were supposed to be fun. Brayden did not enjoy his make over. But some how after the madness, he settled down and smiled for his after picture (in case you did not know, he smiles do not come very often).

One Year Anniversary

Brayden just “celebrated” his one year anniversary for being in the Early Intervention Program. The early intervention provides services to Brayden like the in-home occupational and vision therapy. We have been working with Ms. Pam, the occupational therapist for one year. Brayden has really learned to trust her and for the most part cooperates with the therapy (occasionally falling asleep right in the middle of it).

We started the program when Brayden was three months old; we had very little understanding of Brayden’s brain abnormalities and his capabilities. To start the early intervention program you create outcomes and goals that you would like to see reached over the year. That first session of writing goals, we wrote down “Brayden will sit up and play with toys by 12/07”. One year later, Brayden is 15 months old and we have barely taken steps towards that goal. It is hard to look at those goals and not feel discouraged or defeated in some way. At least there have been small (and I mean small) steps forward and not backward. He is still unable to hold up his head. His newly discovered hands are just now making their way in to his mouth. Sometimes he cannot get fingers in to his mouth and he gets extremely frustrated. His entire right side is not very active so he works more with his left hand and leg. He is starting to explore things with his left hand. He will sit and stroke things with his little fingers.

Now we are given the task write new goals for the next year.

It is a strange task to sit and discuss goals and outcomes for your child. I find it difficult to articulate what we want him to do. The goals I want met are for him to sit up, crawl, walk, be able to feed himself, start talking… All of those are unrealistic. What can I write down? How can we set goals when we have no idea what we are working towards? It has become a task of creating a completely new path that is only Brayden’s. It is really looking small steps; like the new goal is for him to bring his hands together.

I have no idea what can be expected. What is possible? What is Brayden’s potential?

Other parents play with their babies; we do learning programs.
Other kids have brothers and sisters; ours has sibling relationships.
Other babies start to talk; ours is developing his expressive language.
Other kids go to school; ours receives services.

Other kids play and exercise; ours has therapies.

10 Things I Learned from Brayden's Hospital Trip

1. People do not move for ambulances.

After calling 911, the EMTs arrived quickly and stabilized Brayden for the ambulance ride. At this point Brayden was still having seizures and vomiting. I was instructed to ride in the front of the ambulance not in the back with Brayden. The ambulance lights were flashing, sirens were blaring but the cars were not moving. People move! Just think of it as if it was your child or loved one trying to get to the hospital.

2. Medical students start in July.

Upon arrival at Loudoun Hospital, Brayden's room was filled with eager nurses, doctors and medical students. The doctor later told me that they do not see many "complicated" children at Loudoun so many of them wanted to see the process. Then at Children's Hospital we had daily greetings with medical students. Three doctors with four medical students came in each morning for presentations and questions. They love to ask questions.

3. Children's Hospital transport team is cool.

Loudoun Hospital is not equipped to handle "complicated" pediatric patients. We were scheduled for transport to Children's in DC. Children's Hospital handles their own transport. When they arrived, it was like a scene from the movies. Hear the dramatic music and imagine them moving in slow motion. Four people arrived dressed in red and black, some dressed in transport team jumpsuits. They had their own medical gear and stretcher. They looked very official. People stopped what they were doing and turned to see what was going on. It seemed to be the big excitement for the morning. They loaded up Brayden. Their ambulance is fully equipped not with just medical necessities but a TV and DVD player for children to watch movies during transport.

4. Need for Hospital fund

We put money aside for vacations, home improvements and big items. Who knew that hospital stays require so much. Between the gas from Jeremy and I driving back and forth, daily parking garage fee, cafeteria food (which we could have eaten at Morton's by this point) and snacks, we probably could have gone on a little vacation.

5. You get Hospital slime

Have you ever noticed after a long car ride or flight we just feel a little gross and slimy. Being at the hospital you seem to get the same thing.

6. Sharing a hospital room is no good.

If only we were Brad Pitt and Angelina Jolie and we could rent out the entire hospital wing. Brayden was assigned a room with a roommate. Not only did we have a roommate but the bathroom was shared with the rooms next door to us. That's right, four patients, one bathroom. After hearing some of the sounds coming out of that bathroom, Jeremy and I opted for the bathroom down the hall.

7. Hospitals are void of time

Being the hospital for hours upon hours you loose sense of time. We have no clocks in the room. The tiny bit of sunlight is through a fogged window and overlooks the roof. Hours seem to go by and it has only been minutes. Most hospital stays are all about waiting.

8. I understand too many medical terms

Hearing the nurses and doctors discuss Brayden's condition, tests, blood work was always a blur of big words that I could never understand. This time around, I understood the majority of what they were saying. I had no idea I could retain this kind of information.

9. Blessed to live in Northern Virginia

Living in Northern Virginia, we have options for health care. We have several choices for doctors, specialist and hospitals. People travel to this area for medical needs. We have it in our own backyard.

Jeremy and I have been able to be at Brayden's bedside, someone is there at all times. Many families are unable to be at the hospital, possibly because of location, jobs or other circumstances. Their children are sitting in a room with no parent for comfort or advocating for them. Brayden's roommate was a tiny two month old. His family is unable to be here. They came every few days for just a short time. The nurses do their best to help but it can never be the same as a parent.

10. Blessed to be healthy

Children's Hospital has some of the best specialists around, people come from many different places and walks of life . This hospital is not an easy place to be; just walking the halls or going to the cafeteria you see children hurting, struggling and battling some big medical problems. A child next to Brayden's room would cry out in pain for hours upon hours. It seemed as though the child was in so much pain that he would start screaming and vomiting. It is difficult to hear a child in that kind of pain. You see so many extreme cases. Brayden may not be the bouncing toddler that we thought he was going to be but he is healthy and thriving in his own way. Even this hospital stay was just a small incident in comparison.


Just a few things that we have learned. We are learning more and more each day.

Quiet moments

Some one asked me the other day if all of this was hard. I must admit that for the most part it is not that hard. I definitely have days when I feel like I cannot take all of the appointments, medications, therapies, etc anymore. We love Brayden. As a parent you do what you have to do and quickly adjust. Having seizures, going to the hospital, riding in ambulances are all stressful situations but I can get through those. I get in to a mode of doing what we need to do, not a time for panic, worry or tears. It is the quiet moments that are the hardest; watching him sleep, sitting silently in his room, he is so helpless. It becomes a moment to breath and take in what is really happening. The past few days have definitely been on the top ten list for Brayden’s adventures. The hardest time has been driving home alone, without my baby. Jeremy is staying with him (I am a little nervous about staying during this hospital stay…a story for another time). I get home, my older boys are with family, Jeremy and Brayden are still at the hospital. The house is quiet and still. It is not a quiet and still when I can rest. I pace the house, read magazines, watch TV, blog but I cannot rest in this silence. The quiet times are the hardest.

Brayden at the Hospital

Thursday, July 17 - Brayden is home!

Brayden is home! After fours days of the hospital we are happy to be home. Brayden is doing extremely well. It was determined that Brayden’s stomach does not empty at a normal pace. It empties much slower (another reason he is our turtle). We are changing the formula he receives via G-tube and doing very small quantities; during the night he will be getting a very slow feeding (from 9 p.m. to 5 a.m.). The seizures are under control. The seizures became a problem because he was unable to keep the food and medications in his stomach. We tried the new formula, new amounts and medications at the hospital. He seemed to tolerate it just fine. We have added two more medications to help his stomach and two more specialists to add to his ever growing list.
All in all, things went as smoothly as a hospital visit could go. Once again, Brayden is a real trooper and does not let any of this bother him.
When we pulled up to the house Carter sighed, “It is good to be home”. I could not agree with him more.

Thank you for all of the emails and phone calls. A big thank you to my mom for taking the boys for the week; the Pavolics for rushing down and taking the boys to their house the morning the ambulances came to the house; Emily Jarvis for watching the boys this afternoon; Heather and Brian for watching the boys this evening (especially the ice cream treat) and a big thank you for everyone’s prayers. We have wonderful friends, some we have actually met and others we have not met yet; friends that we can count on for support and prayers. It is a wonderful blessing and very humbling.


Wednesday, July 16 Update

Brayden spent the day strictly on IV fluids and no food by G-tube. The GI consult came to see him this morning. The doctor ordered him a milk study. Brayden was sent to Radiology. They give him the formula (about 5 oz through the G-tube) watch it for one hour. Then a couple of hours later they look at his stomach again to see how it emptys.

At this point we are not sure what the results were but the doctor said that Brayden could be started on very smalls amounts of a different formula to see how he handles it.

Brayden seemed to be feeling good today. He was moving around a bit, making happy noises and let us hold him several times for a while. He had one large seizure but that was all. If he is able to keep down the new formula, he could be sent home tomorrow late afternoon. We will probably be making changes to the formula and method/time that he receives formula once we are home. But we will know more about that tomorrow.
Until next time...


Tuesday, July 15 Update

Brayden is still at Children's Hospital. He had a better day; a couple of small seizures and vomits. He started today receiving some Pedialyte via G-tube but after vomiting he has been ordered, no food for a period of time. He will be started, sometime in the morning, with Pedialyte in small amounts. We spoke with a few neurologists today and they found that the seizures were being controlled; we agree his seizures are being managed just fine. We are still waiting for the GI doctor to see Brayden. The GI doctor will hopefully provide some answers to the vomiting problems. He is currently receiving fluids and medications via IV.

By the afternoon Brayden was starting to act more like himself and making a few of his happy noises. When I talked to Jeremy last, Brayden was sound asleep.

When we have time, I will go into more detail about this adventure. Thank to everyone for your emails, phone calls and prayers.



Apparently Brayden needed a little more attention…

Today we had to take Brayden to the hospital. The past couple of days he had a couple dozen seizures and been vomiting. This morning I went to check on him. He was having a seizure and had vomited blood and continued to do so the next couple of times he vomited. We called 911 and he was taken to Loudoun ER. He was stabilized there and later in the afternoon was transferred to Children’s in DC. We were unable to be transferred to Fairfax because there was no room. Thankfully Children’s was able to admit him.

A bit of history, Brayden has been vomiting on and off for the past 4 weeks, once or twice a day and then not at all for a few days. It has been about 10 weeks since he received his G-tube (feeding tube) so we do not know if it might be related to the formula or if it could be something else. We have been in the process of trying to figure out the reason. This weekend we were not able to get the seizures and vomiting under control so we ended up at the hospital.

He is currently sleeping with a heavy dose of Ativan and another seizure medication. He will be receiving little bits of Pedialyte via G-tube through the night to see how he handles it. We are not sure what tomorrow may bring. For now, he is resting. It looks like the plan may be to get him stabilized and keeping some food down. He could be discharged tomorrow. Then on Thursday we are scheduled to see a GI specialist (at another hospital) to discuss the vomiting.

Please pray for Brayden to handle all of this; that all of the vomiting and seizures have not caused any damage. Pray that the doctors will be able to find a cause and solution.

My parents are watching the older two boys so I am sure that are being spoiled!

Thank you for your prayers.
Sorry for the bad grammar and probably spelling, I am tired.
Carrie

Signals

When the light is green you go.

When the light is red you stop.

But what do you do

When the light turns blue

With orange and lavender spots?

Signals from A Light in the Attic

Signals, signals, signals we all watch our children for all sorts signals. We are looking for things that will make them smile. We watch them for signs of being sick or tired. The first couple of years we learn more about them and are able to tune into their needs just by a few signals they may give us. Rubbing the eyes - tired; Crying - hungry or hurt; Smiling - enjoyment: all pretty standard signs that we know and understand. Just google baby signals and there are plenty of websites and books to help you understand your baby's signals.

Brayden's signals are not so obvious and definitely not in a book. Several months ago I took Brayden to the pediatrician because he was rubbing his left ear. Of course no ear ache, he discovered he had an ear and that was his way of exploring. One signal we have learned to understand is that he shakes his head from side to side (like saying no) when he is overwhelmed or just had too much.

We are constantly looking for opportunities to help Brayden relax. His little legs and back are extremely tight. He spends many hours with the therapist trying to help him relax. Last night we tried the pool at Uncle Russ and Aunt Sandy's home. At first he did not like the cool water but then settled down. All signs point to him being relaxed and enjoying the water. He looks so relaxed but feeling his legs, they were still so tight.

Brayden's smiles are coming more frequently. However he can go days without cracking so much as grin. We have yet to understand why he has days that are full of smiles and then go for sometime without any.

He is still struggling with vomiting. The doctors have asked us tons of questions about the vomiting. Trying to understand if there is some sort of trigger or sign as to why he might be vomiting. I cannot find a consistent reason. It would be nice to have some sort of signal so we can put him in a safe vomit area (preferably tile flooring or on some towels for easy clean up). We will be seeing another specialist to discuss.

We know that red means stop and green means go. But what can we do with the spotted signals? Brayden's signals are spotted, stripped, zig-zaged... And we are trying to understand.

Expiration Date

Just as a warning, this is bit of a heavy topic. It has been something that continues to come up lately. I was not even sure if I should blog about it but I wanted to know your thoughts, so here it goes...

The past month, we have heard about and watched families grieve the loss of loved ones (as I mention these people please pray for the families). Our pastor recently lost both his parents, a family at our church lost their husband/father to a heart attack, our neighbor’s mother lost her battle with cancer and my mother-in-law’s cousin passed away because of a heart attack. It seemed as though every week we have been hearing about a family’s loss.

We pray for families that are dealing with a life threatening illness; Daniel, a sweet toddler, who is fighting a brain tumor (his parents have been a wonderful support for us, I will have to blog about later), missionary family whose wife/mother is fighting cancer, we watch my grandfather fight the effects of Parkinson’s, all of them fighting a disease that is wreaking havoc on their bodies.

These circumstances can raise many questions.

The last couple of months, I have finally had enough nerve to start reading books, articles, websites about having a child with disabilities, brain abnormalities, seizure disorders…So many families trying to find their way in all of the information that is handed to them. Several of the families have been told how long to expect their children to live. Being told “these sort of kids” live into their teen years. Jeremy and I talked about this. Not one of Brayden’s doctors has ever mentioned anything about his life expectancy. We never even considered asking the question. We know that seizures put him in danger but thankfully, for now, his seizures are not at that level. We do not know, nor do we want to know, if his brain abnormalities, seizures or feeding difficulties will shorten his life. We need to know the severity of what we are dealing with but we do not need to hear an age or time that could be Brayden’s expiration date. Do not worry, Brayden is not dealing with anything life threatening but having a child with severe disabilities definitely raises the question. I know that we are no where near the difficulty level of dealing as to the families that have experienced a loss or serious disease.

I think about Jeremy’s Aunt Janine, who has Down Syndrome. Many years ago they were told she would not live past her teen years. Well, she is now a thriving and full of life, forty-something year old.

Knowing Brayden’s life expectancy would not change how we love and care for him.

You always hear the expression “live each day as if it were your last”. Would you want to know your life expectancy, your child’s or your loved one’s? Would it change how you lived? How would it change?

Do you know where you or a loved one would go when they passed away? Please take the time to read this for more information: Focus on the Family - Coming Home or Crosswalk - The Need for Jesus

An amazing read about a mother who lost her baby, a wonderful testimony: Bring the Rain

Closed for Business

Brayden and I have made it through the first week of no nursing. I am closed for business. Brayden seems to have no problem with the transition.

For Brayden's first year, we spent quality time together. By some miracle Brayden was able to nurse successfully from the beginning, in fact better than my other two boys. The first twelve months of Brayden’s life, we spent about 45 minutes together, 5-6 times a day. The only way that he could eat was nursing. He has problems with things touching his face and he tends to push things out of his mouth; bottles, cups, spoons, etc, did not work. Nursing was his only nutrition and a lot of comfort for him. We have no idea why nursing worked and nothing else. We worked with doctors and therapists, no explanation. We considered it to be a miracle, no explanation needed, a little miracle and piece of normalcy in his not so normal life.

Shortly after his first birthday, Brayden got his feeding tube. We were unsuccessful with getting him to eat or drink anything. His growth reached a plateau for over 4 months so we knew that he needed the feeding tube for nutrition and the best possible chance for him to grow and develop, as well as his brain. After his feeding tube, we went down to nursing twice a day. Then the past few weeks has only been once a day. That only lasted a short time; my body was shutting down the milk factory and officially closed for business one week ago (I know this borders on too much information).

The feeding tube, for the most part, has been going well. In about 8 weeks Brayden has gained about three pounds. The doctors are calling that catch up weight; then his weight gain will steady off. Jeremy and I are getting the hang of things. We are pretty comfortable with hooking him up to the pump. The older boys know the familiar beeping sound of the machine and let us know when the feeding is complete. The feeding pump is called a Kangaroo Joey and has a kangaroo jumping across the screen so they love that!

We are having difficulty with Brayden and projectile vomit. No, it is not spit-up; it is projectile vomit, so much that it drips down the sides of the crib. I love my children but I do not handle anything coming out of either end very well. The vomitting has been happening over the past month, 1-2 times a day. We are in the process of figuring out the problem. He has been tested for reflux several times and never showed any signs. The problem seems to be with digestion of the formula he gets through the feeding tube.

Brayden is still doing feeding therapy with a speech pathologist and showing great progress. He prefers things that are a bit heavier, like a pudding consistency. I am going to attempt making baby food for him so that we can really control what he is getting. So if you have any pointers, please pass them along.

Letting go of the nursing has been harder for me than him. I know that I complained about nursing…a lot. I spent hours upon hours sitting in the car feeding him, between doctor appointments, running errands and driving the boys to activities. I listened to more talk radio than I ever knew existed. I sat in the same chair every day feeding him and not being able to tend to my other children. No one could help me watch Brayden, not even Jeremy, because I was the only one who could feed him. That went on for almost thirteen months. Nursing was his only source of food for over a year. It was exhausting. Having the feeding tube has given us a lot of freedom. But letting go the nursing has been a bit emotional for me. It was always a time for Brayden to relax, he spends so much of his day putting a lot of effort into just being. Nursing was his safe area when I could hold him without a fight and he could just nestle in. Nursing has been the only organized activity that Brayden could do, we are working on other things. It is great oral stimulation for him to continually use his mouth, we are finding other ways to help him with this. As much as I loathed nursing him for so long, I always knew that it was the best thing for him and I was really doing something tangible for his well being. I have a bit of guilt letting it go. I also have great hormones when nursing; great skin and hair plus you use a lot of calories just sitting down to nurse. In case you were wondering, I only nursed my other two boys for about 6-8 months. I am not a die hard nursing person so for me to last this long was a miracle in and of itself.

My nursing days are in the past, officially closed and I am handing in the Hooter Hider (this really is the name of a product; if you are nursing, this is a must have). We are finding new ways for Brayden to eat. I am trying to join that super mom circle of ladies that make their own baby food!

BFF

In case you did not know BFF stand for Best Friends Forever.

Have you ever had some one placed in your life that until many years later, you did not realize why? Possibly a best friend or confidant?

Brayden has his own BFF, Justice. Justice Coleman is a sweet two year old girl, who I love to see smile. The Coleman family has become our close friends and confidants. Jeremy has known Justice’s dad, Jason, since his grade school days, they grew up at the same church and have been working together for many years. Before we had Brayden, the Colemans moved out to Waterford, just a few miles from our house. We had no idea that their move would be such a huge blessing to us! The Colemans daughter has several brain abnormalities and handicaps; some that are similar to Brayden’s.

Shortly after having Brayden we were on the phone with the Colemans trying to make sense of everything going on. Since their daughter is older than Brayden, our questions were not new to them. They helped us understand all the medical terms, what doctors to find and questions to ask. Over the past year we have come to appreciate their friendship more and more. I feel like they are our guinea pig. The Colemans spend many hours figuring out doctors, therapy, medical equipment and now school. We come along behind and ask them questions about what they have already been through and we have been using their experiences to understand what could be helpful for Brayden.

Our families have an understanding of circumstances. If we say to them Brayden had a bad day, they understand; it is not a typical grouchy kid day, there is much more to it. Sharing questions that we have, thoughts, feelings and concerns for our handicap children. There is no need for explanation. Many of our days are overwhelming and difficult to explain even to our family, the Colemans understand. I call Cara, Justice’s mom, several times week with many random questions (I even called her on their vacation, yikes!) or even just to get together. There is a entirely different level of concern and sometimes hurt when trying to get through the day with your handicap child. At the same time, small celebrations are even bigger, like smiles. The Colemans understand. This kind of friendship is priceless and one that I could not do without.

Brayden and Justice share many of the same therapists. One therapist jokingly said maybe you better check your husbands’ history; they grew up together, work together and both have children with brain abnormalities. I never really thought of it like that. I see it differently. It amazes me to think that years ago, before we knew we would have children, and the Lord always knew that we would have Brayden, the Colemans would have Justice; we would end up living very close and being close friends. Coincidence, I think not, quite a divine plan.

I do not want to forget to mention that they have a son that is four years old, Gibraltar. He has become Carter and Luke’s BFF. When they greet each other, it is in a loud scream and then they are off running. I would have a picture of them but all turned out blurry because they kept moving. I could only get a picture of the children who were sitting still, Brayden and Justice in their hot wheels. His and Her set of wheels, the KidKarts. I think they sit there and think "What are these crazy people doing?".

My own Musical

The Lion King is currently showing at the Kennedy Center. Carter and I joined some family to watch the show yesterday. The Lion King was magnificent, the best show I have ever seen. It was magical; there are few things better than musical theater. It is entertaining to watch the story unfold with songs.

I have to tell you that secretly in my mind I am starring in my own Broadway musical. I do not want to be in an actual musical, I just have one playing in my mind. For the most part, I do not start singing in the moment; almost like the songs are the background for my everyday life. Songs are playing in my mind for the majority of the day. Just about any word can set the stage for a song to start playing (i.e. driving the kids around in the car – On the Road Again, giving my kids a bath – Splish, Splash, cleaning the house – It’s a Hard knock Life).

A friend asked recently if I felt like Brayden’s circumstances have changed my relationship with the Lord. I immediately answered, absolutely. I cannot do this by myself. I have spent moments where I actually cry out loud to Him for help. I do this in the car, alone or just with Brayden. Hopefully the people next to me at the stop light think I am on my phone because sometimes I am actually yelling.

How do I hear from him? I do not get those soft whispers like in the Karen Kingsbury novels (thank you to my mother-in-law for that addiction). I think He places songs on my heart, There’s within My Heart a Melody. I am so thankful that I learned so many hymns growing up. In times that I feel overwhelmed and lost in the chaos, my favorite song His Eye is On the Sparrow is playing in my mind or Trust and Obey. I have days when I feel like I cannot move any faster, Be Still and Know that I am God starts up. The most popular one for me these day is an early 90s Twila Paris song God is in Control. Each song is comforting and wonderful reminders to focus on Him.

Having Brayden in our lives has definitely changed things. It has changed the play list in my mind and brought words of the Lord closer to my heart.
What is your music?