Not feeling good

Brayden is still sick. Lots of vomiting and today it is coming out the other end too.

Never sure which doctor to call...the pediatrician, keto clinic, GI doctor?
I talked with the pediatrician and keto clinic. The plan:
He is not on his regular feeds (keto diet via J-tube for 20+ hours). We started him on Pedialyte and tomorrow try half Pedialyte, half keto formula.

If he is awake, he is gagging and vomiting. Thankfully he is sleeping most of the day but he looks oh so pitiful.

It coming out

Brayden is back to vomiting several times a day. It started on Sunday.

Several seizures a day, mixed in with the vomiting. He is wiped out and wants to spend most of his day in bed. He could be tired from all the seizures and vomiting. He could also be sick.

This may not sound great but I hope he IS sick. A little bug is something that will pass. If he is falling back into the vomiting and several seizures that is not good.

Lots of baths and bedding changes. His skin is a bit burned from the acidic vomit so the bath is not enjoyable when the soap touches the tender skin.

Now is he sleeping. And I am off to wash the sheets.

Brother on the sidelines

We have been busy with football and soccer. Brayden is there cheering for his big brothers.

Can't you tell he is thrilled?!

He puts up with all the cheering parents, rowdy toddlers running around, whistles blowing, noise makers/shakers, (mommy screaming), etc.

Not bothered by much but certainly not cracking a smile.

No pain, No gain

A little medical update on Brayden.

No pain:

Kidney stones seem to not be a problem. Not sure what is going on yet but at least Brayden is not screaming in pain.

Seizures are under control. He typically has 1-2 major seizures a day (he probably has several little disappearing seizures but it is hard to tell). Since starting the ketogenic diet his seizures have gone from 5-10 seizures a day down to 1-2. He has also not been to the ER or needed any extra medication/intervention for large, out of control seizures since May. This is the LONGEST period of no ER ever for him! I am starting to miss the EMTs and ER staff...ha!

Pancreas seems to still be a problem. His lipase levels are still extremely high without much cause or reason to point to. He is now officially diagnosed with chronic pancreatitis. The good thing is that despite the high lipase levels, he does not seem to be in pain.

Vomiting is at an all time low. We are suctioning/pumping his stomach 3-4 times per day via his G-tube and it helps.

No gain:

Brayden is still NOT gaining weight. He has been weighing in at 27-29 pounds for several months. No clue as to why he is not gaining weight but everyone is concerned and want him to get more calories.

He is fed through his J-tube (intestine) at 42 ml/hour over 20 hours in a day. They want us to increase the calories and the mls/hour to 50 ml/hr. We have NEVER been above 47 ml/hour. This might not seem like a big deal but his GI system cannot handle much. In the past, increasing the flow/hour has increased the vomiting and increased our visits to the hospital.

We are slowing moving our way up to 50 ml/hour. Adding one more ml per week to see how he handles it.

We are constantly adjusting his ketogenic diet...a little bit of this, a little bit of that...to help him get the proper nutrition.

In a nutshell, things are looking good...just not the weight gain and pancreas.

Make-a-Wish

The first Make-a-Wish meeting happened today. We met Brayden's wish grantors (the volunteers that facilitate the wish process).

The grantors came bearing gifts for all the boys. Sticker books for Carter and Luke. And a toy for Brayden...the kind of toy he likes!

Went through the paperwork. Brayden granted them a few smiles.

Talked about the wish for the Brayden.

Wanna know what it is!?

Disney World.

We have heard amazing things about the program set up for Make-a-Wish with Disney World. The kids receive the royal treatment.

Why we decided on Disney: The Make-a-Wish in Disney World is a well oiled machine. It maximizes the Make-a-Wish opportunity. I have talked with other families that have done their wish at Disney and they said it was magical, exceeding all expectations. We also wanted something that Carter and Luke could enjoy. They go through just as much as Brayden, their life is turned upside down on too many occasions. We wanted something we could enjoy as a family. Too many times, one of us is with Carter and Luke and one with Brayden.

Disney World is a good fit for our family. We can do it together.

We are aiming for February/March to go for a week.

Carter and Luke are so excited. And I am sure Brayden is thrilled too.

A purse and not-so-good memory

I have been on a quest for jeans this week. The boys are in school and I have few hours of me time.

I was in a dressing room yesterday trying on dozens of jeans (yet to find what I like) and I heard some store employees arguing. I finished up, came out of the dressing room, looked up and saw a familiar face.

A face that put a pit in my stomach and brought back a not-so-good day for me.

Let me take you back a couple of years...

Brayden had a really rough few months, my spirit was low and Brayden's needs seemed to keeping growing and growing. To cheer me up, Jeremy ordered a designer handbag as a surprise for me. It was delivered in a big box right to my front door.

Carter and Luke were in school so Brayden and I headed out for some shopping (the best way to break-in a new purse). Brayden was heading to the hospital the following day for more tests so I needed some retail therapy. I was headed to check out and I realized my new purse was gone...not hanging on the back of Brayden's wheelchair. I panicked. Not only was the several hundred dollar purse and my wallet gone, but Brayden's medical papers, test orders, etc. were in that bag.

I just wanted one day of no stress. It seemed like we were going on months and months of stress with Brayden.

I immediately went to customer service. I explained to them the purse and even drew them a picture. The store manager and a couple of workers were on the floor with me looking for my bag. NO bag to be found.

I left that store and ran to the one I was in previously. At that customer service desk, I frantically explained my lost purse. They did not have it. A woman in line approached me. She had turned in my purse at the other store. I asked her to walk there with me and she did.

We walked into the store. She said that she turned in the purse to the woman at the customer service desk...the SAME woman I drew a picture for. We walked up and asked for the purse again.

The customer service woman's reply, "Oh, I did not know you meant that purse." And she pulled it out for behind the desk. Clearly she did not intend to give to me...aka she was stealing it.

I hugged the stranger that turned in my purse and helped me get it back.

I grabbed my purse, incredibly flustered...the kind of flustered where you are going to scream or cry. I spoke to the store manager and he did not show much concern.

I stormed out of the store.

Flash forward to this week. I am coming out of the dressing room and there is the customer service woman who tried to steal my purse.

I left the store (without a good pair of jeans).

As a side note, the week that the purse went missing, I did call the district manager for the store a few times and nothing ever came of it.

Grace

Jeremy is out of town. The boys woke me up early Sunday morning because our church was having a carnival for its grand opening weekend. I bathed, dressed and loaded up everyone for church, always a "fun" task.

When we arrived, the church smelled of cotton candy and the boys were thrilled. I dropped them off at their room. I wheeled Brayden around to his three-year-old classroom. It was busy, too busy for me to put him in.

I decided to take him into the service. I wheeled him over the to handicap seating (in the back isles of the church). Someone moved the signs to reserve spaces for handicap seating and decided to sit there with their toddler and other friends. My attitude was not great. I parked Brayden the isle behind. Problem was his chair stuck out too much on that isle and everyone who walked by bumped the back of his wheelchair. This he did NOT like. I put him in my lap...almost asleep until the cute toddler in front of us made some noise and apparently that bothered Brayden. He cried and I scooped him up and headed out the door to the foyer.

Once out in the foyer, I was pretty determined to have a pity party. I just wanted to enjoy the service for once. I plopped down next to a family friend. At first I was not sure why she was in the foyer and not in the service. She is a beautiful woman, inside and out. She has MS and she was having a bad day.

She and I sat in the foyer and talked the entire service...all about God's grace. Despite her circumstances and when things were not going well, she felt covered in God's grace. She was blessed by God's grace.

So much for my pity party. I got a lesson in God's grace.

God's grace is there, always there. I needed that conversation. Many times I am just getting through another day, not really having a bad day but not really having a good day. Am I acknowledging God's presence, His grace for me?

Grace is stunning. It is breathtaking.

God's grace shows up in all our circumstances if we would be recognize it...He gives us more and more grace when the burdens are greater and greater.

Imagine that God is seeing me covered, smothered, and smoothed over with extravagant grace. All my rough edges are rounded in grace. All my imperfections are hidden by grace. All my frayed ends are tied up with grace. All that I'm lacking is filled up with grace. How can I allow myself to fret and to worry...when I realize that in God's eyes I find grace upon grace?

excerpts from Women of Faith, Extravagant Grace

2nd day of school

Brayden had his 2nd day of school (remember he only goes Mon, Tues and Thurs).

I must say my heart was beating a little faster today because today was NOT a day that his nurse goes with him to school.

Would he be okay? Will he scream and cry? Will the school remember all of his medical needs and his personality quirks?

As we were loading for the bus in the early morning, he decided to vomit all over the place. Yellowish green stomach bile covering anything around and then a few minutes after that settled down he went into a nice seizure. I was worried the bus driver would not take him but she assured me he was in good hands. They loaded him up and off he went.

The phone did not leave my side from the moment he got on the bus until I saw him this afternoon.

A couple hours into school the phone rings. My heart pounds out of my chest and I am ready to grab my car keys to head to the school.

No problem at school, just that his feeding pump was not turning on. I told them not to worry about it and we would figure it out at home (the battery was low).

Brayden arrived home in different clothes (guessing a bit more vomit). His report was good, only a few moments of crying. He even participated in circle time...his favorite part of the day last school year.

He did great but I do not think I will ever stop being a hyper mom when he is at school. I am keep telling myself not to stop by the school until invited...

First day of school

Brayden made it through his first day of school with flying colors. For the big day, you have to put up with lots of pictures!

Of course, he is showing his excitement, can't you tell by his face...













But there was no crying, fussing or screaming (from him or me) .




















He seemed to enjoy being at school. His nurse texted me a picture of him at school (love that she did that). She goes with him on Tuesdays. Thankfully that happened to be the first day of school so I did not follow the bus and hover around the room this year.

I was sooo concerned that he was going to be miserable at school. Not a cry until the afternoon bus but he was just tired.

His nurse set him up in a chair outside and he was sound asleep recovering from the day.

Will you cry?

Tonight is the night before school starts.
School starts tomorrow...
Carter in 2nd grade, Luke in kindergarten, Brayden to special-ed preschool.

It is Luke's first time on the school bus. Brayden's first was last year.

The anticipation for tomorrow is almost unbearable for Carter and Luke. Their excitement is bubbling over. Luke has been waiting for this kindergarten and bus moment for quite some time.

One final hug from Luke before bed and he turned to me and asked, "Will you cry?"

I replied, "I am sure that I will cry a little. But it will be because I am so excited and happy."

Luke, "You will cry because you miss me?"

I replied, "I will absolutely miss you. Know that if I am crying tomorrow, it is not because I am sad. Sometimes people cry when it is a big moment."

Luke, "When Brayden got on the bus last year, you cried so bad daddy had to hug you and hold you."

Me, "Yes but I promise I will not be that out of control tomorrow."

Luke, "Okay, good night." And he marched to his room.

The conversation through me for a loop. Yes, I did sob last year when we sent Brayden on the bus. I cried so hard that I had snot bubbles and a headache. Yes, Jeremy did have to hold me (but he was crying too). I did not remember talking to Carter and Luke about it but they were there. In fact, I cannot believe Luke remembers that morning.

I forget that they are in this too. That they soak in a lot. They watch us and remember things. They see how we handle life, how we handle Brayden's life and theirs too.

That is a big responsibility.

School Orientation Special Ed Style

Brayden had his back-to-school orientation.

He is in the same classroom, with the same teachers, aids and therapists. Whom we adore.

There is still the same glaring fluorescent lights, strange school smell and noise of a special ed classroom (noises of children and adults, crying, musics, toys, etc.). Things we do not enjoy.

He is on the same schedule of Monday, Tuesday and Thursday for the morning.

His cubby is ready for him. All the monkeys.

Brayden seemed to be pretty comfortable back in the room but when the noise became too much, he had enough. Several of the children from last year are returning and there are some new ones as well. A total of 8 children...they do not all come on the same days.

Brayden has been pretty opinionated this summer. Meaning he SCREAMS and cries when he is fed up, does not want to do something or tired. He sounds like he is in pain and he holds his breath when he gets really upset. He has kicked it up a notch this summer. I want him to participate in school and the activities. When he is screaming and that upset he will not do much of anything.

Praying for a happy-to-be-at-school Brayden...

Brayden likes the aquarium

Well, we have tried many adventures this summer with Brayden. Some he liked, some he did not.

One more try...

The National Aquarium in Baltimore.

Jeremy, Carrie, Carter, Luke, Brayden and Brayden's nurse Christina in Baltimore for the day (check out the family blog for more pictures).

He liked the dark rooms with glowing tanks and the quiet aquarium since it was not busy.

.

We headed to Hard Rock Cafe for lunch...he did not enjoy that place. Perhaps too loud?

The boys showing off their aquarium stamps.

The stress of my days

As many mothers know, back-to-school time is busy. It can be stressful. Making sure your children are gear up and ready to go with their supplies and proper fitting clothes (when do they stop growing?). Not to mention the school open houses/orientations, back-to-school nights, fall activities that are starting up...for us it is football, soccer, Awana, and all the things Jeremy and I volunteer for.

The week before school starts...I am dealing with all of the above. I am also mentally preparing myself to send Brayden off to school again. My heart aches when I think about him driving off in the bus. Bonus for this year is Brayden's nurse will be going with him once a week.

All pretty typical...

But add in a extra bit for Brayden and his supplies. Last week, the medical supply company did not deliver his feeding pump bags. The feeding pump is the ONLY way he gets nutrition. The medical supply company was still trying to get us the bags at 5:30 p.m. on Friday. Finally someone hand delivered the bags late Saturday afternoon.

I call this week for Brayden's monthly supply of his formula. I have been making this phone call for 2 1/2 years. It is my routine. Yet again, the medical supply company has mixed things up and could even get us his formula because the warehouse do not have it.

Here's the thing, Brayden CANNOT take any other food. We cannot go to the grocery store or even a pharmacy to get what he needs. It is a combination of four different items that are precisely measured out to ensure his seizure (and vomit) control.

I was freaking out to say the least. The medical supply company told me that it would be at least a week until it was sorted out (between the warehouse receiving it, getting the proper prescription and authorization). Umm, I needed his supplies the next day!

I called the pediatrician's office and Children's. They were on the case. Without much progress, we still did not know if Brayden was going to get the formula in enough time. Finally, between the pediatrician's office, Children's and my phone calls to the supply company, we concluded that the formula was not coming.

I begged Children's to give us a box of it (they have it for in-patient care). I loaded up the boys in the car and we drove down to Children's, an 1 1/2 hour drive. Ran into pick it up, they gave it to us as a "donation". And we drove him another 1 1/2 hour drive with the little box. A little box to tide us over until the the medical supply company figured things out.

I come home to find a box, I mean, a case, of the formula had arrived.

I called the medical supply company to find out what happened. They did not know it was even shipped.

Really!?

Now I am worried they are charging us for the case and overnight shipping...