Wednesday, April 29, 2009

Birthday Festivities

Brayden's 2nd birthday was April 17.

On his actual birthday we were with some family for dinner. Luke was quite perplexed about the party. He thought Brayden's party should be on the day of his actual birthday. So Carter, Luke and I went to the store to pick out a cake.

This past weekend we had the party.
Could you guess the theme?

Turtles. How did you know?

Family and a few close friends joined us on a hot April day in the 90s. We loaded up on food and fun. The kids bounced in the most adorable moonbounce.

Brayden was not too sure about all of the commotion or singing happy birthday.

We attempted a family photo at the end of the party. Everyone a bit done from the day.

And Brayden was wiped out.

This is the song that doesn't end

This is the song that doesn’t end
Yes it goes on and on my friend
Some people started singing it not knowing what it was,
And they’ll continue singing it forever just because
This is the song that doesn't end...
by Lambchop (click to experience the song)

I was just singing this song with Carter and Luke last night. I have no idea why I ever taught it to them. The song gets stuck in your head and yes it goes on and on.

Well this week I felt like Brayden was singing the same song, just his own version...with the vomiting. I thought that song had ended but not the case.

I talked with his GI specialist this afternoon. He wants us to try Prevacid with his other medications to see if it could make any difference. Also to decrease the calories in the formula for his J-tube. If this sounds familiar, you are right; we have tried this many times before and it barely took the edge off the vomiting. The doctor did not sound too optimistic about trying these but wants to try it before discussing other options. We are to give it a try through the weekend and check back in with him.

This song has to come to an end. It cannot go on and on my friend.

Tuesday, April 28, 2009

It's back - the vomiting

Anyone watch those old scary Poltergeist movies? And the little girl, "They're baaack!"

Well we have our own little scare...It's baaack!

The vomiting.

It is back with a vengeance. Shortly before spring break Brayden was sick, everyone else in the house got sick. Everyone got better, including Brayden. However, his vomiting did not go away. Over the past week it has gotten progressively worse. Several times he has vomited blood, the brown old blood. Yesterday and this morning was the worst. He vomited a lot of stomach bile and blood. It burns his skin to the point of bleeding. He looks terrible (even though he is so adorable). The sides of his ears and the back of his head are raw from laying in it in his crib, even just for a moment. The corners of his mouth are red and bleeding. It has to hurt but he doesn't cry about it much.

I really thought the vomiting was a thing of the past. We are waiting to see what the doctors say. I am not sure what options are out there at this point. The last round of this we tried so many things. Ugh.

Friday, April 17, 2009

It is his 2nd Birthday! part 1

Today is Brayden's Birthday. Today he is 2 years old.

I have to break this birthday post into parts. With birthdays come a time for celebration and reflection, so this post is going to be about the celebration of Brayden's life. All the good things.

Brayden is a sweet boy. Our little turtle that moves at his own pace, is two years old. He is taking his time, revealing what is under his shell little by little...

Brayden's life has been a bit hectic but we are starting to get the hang of things. Here is a little about our little turtle.

Brayden's life:
  • Sleeps well and always has, although napping has never been part of his day. When he feels the need to sleep during the day he tends to take a cat nap no matter where he is that moment. When in bed he finds the exact same spot in his crib, there is even a dent in the crib bumper where he places his head. After being on vacation last week and being in a pac-n-play, the moment we got home I put him in his crib. I went to the bathroom to get his medicines ready and when I came back he was already in his place sound asleep.

  • Eating is not much a part of his life. The past month we were able to give him tastes of some baby food and he could not get enough. He loved it! However the doctor said enough. Since the vomiting has returned the baby food has not. He is still feed by his J-tube of his G-J tube for about 16-18 hours a day.

  • Playing is something he is learning to do. Brayden loves to be around other people. He likes the noise of his brothers playing in the same room. Brayden enjoys looking at objects that sparkly or reflective. He prefers things that are red or pink. His looking lasts about 3-5 seconds, takes a break and then tries to find it again. The toys he enjoys the most are ones that have simple lights and/or sound. How do we know what he likes? His eyes get bigger or he gets still, trying to make sense of it, or he tries to play with it by moving his arms to try and find it. Every once is a while you can see his little hand stroking whatever toy maybe in his lap.

  • Brayden loves music. In particular he likes some of the boy's pirate songs (courtesy of a friends birthday party). When these songs play in the car, he makes some noises like he is singing along. Every evening for bedtime, he listens to a Baby Einstein CD. This CD travels with us and goes for hospital stays for a familiar sound.

  • Speaking of noises...Brayden is able to vocalize his needs. He cries when uncomfortable or overwhelmed. He fusses when he is grouchy. He talks, in his own way, when he feels the need. His talking sounds like little lion roars.

  • Cuddling is his favorite past time these days. A year ago, he was not easy to hold. He was so tight and would fight being held. Now he calls out, in a fake cry, when he wants to be held. Every evening Jeremy comes home from work, walks in the door and Brayden cries. Why does Brayden cry? He knows that daddy will pick him up and they will cuddle on the couch. Problem; then Brayden fusses when put into bed because he was much happier in his daddy's arms.

  • Movement is something that Brayden is discovering. He cannot sit up or hold his head. His body operates on two separate sides (because of the ACC). Some how he is still able to wiggle into his spot in the crib. He kicks his legs when excited, mad or stinky. Just in the past couple of weeks he has really been going crazy with his arms. So much so that one time I thought it was a seizure. He was just moving and shaking so much.

  • He is left sided. What? Brayden's left side works best for him. He moves and uses his left hand much more than his right. He always leans to his left. He works around whatever he is sitting in to be able to lean to his left. He kicks more with his left leg.

  • Bath time is always a highlight in Brayden's day. He loves the bath. If he gets really relaxed then he may fall asleep in the tub. For bathing we have a special chair and put a pad on top for extra comfort! But when the bath is over, he is not happy. Take him out of the tub and he is mad. Getting dressed is not something he enjoys either (you would think he might get used to it since it happens all the time!).

  • Brayden is preparing for special education preschool in the fall. So this year of being a 2 year old will come with some big changes for him.

Brayden is a gift from the Lord.

He is no longer a baby but a toddler. A toddler on his own path. A path that only the Lord knows.

Happy Birthday!

Tuesday, April 14, 2009

The Rest of the Story

Remember Paul Harvey's "And now you know...the rest of the story."

Well here is the rest of the story from our Disney trip...

The previous post on this blog and our family blog was all about the fun. This a bit more real.

I have to say that my expectations for the trip were pretty low. I did not know how much Brayden could handle and for that matter how much the other two boys could handle. Six days of parks, lots of walking and not enough sleep. That could be a recipe for a serious case of grouchy and meltdowns. Each child did amazing, they were fantastic including Brayden. He even gave us a few smiles during the week.

Brayden was still vomiting a couple of times a day and we are still not sure why but for the most part it seemed manageable. We just carried more rags with us. He seemed fine after expelling whatever was bothering him (stomach bile and saliva) so we were still at the parks and on the rides!

As I mentioned before, we were able to get special handicap passes for Brayden and our family. This was key for us because we could be on the rides together. Many of the rides had a different entrance for the wheelchairs, sometimes it was the exit. We would wheel Brayden through the exit and many times a passer by would shout at us "HEY! This is the exit!" As if we were trying to cheat in some way past the lines. It feels very offensive to have someone in your face accusing you of trying to cut in line. Easy to ignore at first but after several times it starts to bother you. And how do you respond? Do they really want an explanation?

We quickly learned that the handicap pass was a wonderful blessing because we did not have to wait in the lines (word of advice do not go any where near Orlando during Spring Break time, it is a madhouse!). We only used the handicap pass for the rides that Brayden was actually going on. The other rides, we waited in line just like everyone else. However, I noticed that many groups did not abide by the same guidelines; handicap pass for when the handicap person was with you...others used this as a free pass for bypassing the insane lines and meanwhile the handicap grandmother was back at the hotel relaxing. It did not bother me much until the last day.

We were waiting at the handicap entrance to ride the carousel. A ride that Brayden could go on. We could wheel his chair right in and then unload him to some one's lap, park his chair until the ride was over. We were waiting our turn, watching the carousel go around. Behind us were three young moms with three little girls (none of which were handicap according to them). One mom asked if their girls could come up with our kids to watch the carousel. Of course we said yes. The carousel came to an end and we were ready to spring into action and get everyone on. Well all of a sudden one of the moms pushed right past us saying "Oh I am just getting my daughter" but she went in and called in her friends. The attendant stopped her and she showed him their passes. Then she called he friends through, completely going past us. Meanwhile the carousel is filling up from the regular line. The attendant let us in and I quickly found a horse for Carter and Luke. I looked around for Jeremy and Brayden, I circled around the entire carousel. I realized that Jeremy and Brayden were on the outside. There was not enough time to load Brayden and there was no room left. Boy was I mad, I could not believe that mom pushed her way through us. All of her group was on the ride and ours was split. Her rudeness and complete lack of consideration made my blood boil. There was only a handful of rides that our entire family could ride together and this was one. She pushed right past our children, Brayden in his wheelchair and seemed to have no qualms about it. I wanted to say something but they exited the ride on the opposite side.

After the carousel we headed to the tea cups. Once again, we head to the handicap entrance. There was a short line. Across from our line was another group of moms resting on a bench. They decided to have a conversation about if it is fair for us to be in a different line and get on the rides without waiting in the lines. These women stared and stared at Brayden.

The special handicap lines were nice despite the inconsiderate people. We had the opportunity to talk with other families who had children in a wheelchair. We talked to a couple of people on their Make A Wish. And of course it was nice to not wait in all of the lines and ride together.

Now on to our big Brayden adventure for the week...

A week or so before the trip I noticed Brayden's feeding pump was making a strange noise, kind of like a creaking door when the pump was running. It was still working so I did not think much about it. The first few days in Orlando the feeding pump was not pushing any liquids through the line, not the formula or water. After some tweaking the pump would end up working. Then came Thursday morning, our day for Sea World, a place that Carter has been waiting his whole life to go (that and Africa). We were getting ready for the day in our room. I was packing up Brayden's feeding equipment and I could not get the pump to work. I tried and tried. Turned it off and on, tried new bags...nothing was working. I panicked and in a not so mature moment threw some bags across the room out of frustration. The pump was done.

We immediately called the medical equipment company. They had an office in Orlando! Our local office in Alexandria had the order processed and ready to go in a matter of 15 minutes. A new pump and bags would be delivered shortly! Huge sigh of relief. The feeding pump is the only way that Brayden gets his food and water. We try to give him things in to his stomach but that does not go well. The J-tube part of his tube requires a very, very slow drip and it is close to impossible for us to feed him without the feeding pump.

Well a few hours past, no new pump. Our local office in VA called to check. Nothing. I finally called an office in FL, spoke to three offices and countless automated systems. Nothing. Where is the feeding pump? At this point it is 3:00 p.m. The last food that Brayden received was 7:00 a.m. We were pushing him limits. We were worried, it was after 3:00, most offices close at 5:00 p.m. Jeremy got on the phone and did some "gentle" persuasion with the Orlando distribution office. All of this taking place in the middle of Sea World while trying to have fun with the boys. Jeremy convinced the office to let us pick up the pump at their location because if we did not get it soon, we were going to the ER for Brayden. The Sea World day was cut short (Carter still had a good time). Then we rushed off to the other side of Orlando to pick up the pump. We arrived at 4:54, their office closed at 5:00. They handed us a new pump and supplies. Huge sigh of relief. Thank you Lord.

A few bumps in the road but still an amazing time. We are so grateful to even be able to travel to such a wonderful place. Grateful that Brayden withstood all that was thrown at him from rides to lack of food. The Lord protects us and provides for us. For that we are always grateful.

And that is the rest of the story.

Monday, April 13, 2009

Where wishes come true

We are back from our first trip to Disney World. The car ride was long but everyone did great. Each day was magical and more fun than we expected.

My concern before going to Florida was for us to do things as a family. Amazingly, Brayden was able to join us on many rides. We were given a special handicap pass. This pass allowed us to go to a different entrance with no line and get right on the ride. We were a bit worried that the rides would be to much stimulation for Brayden but he seemed to do fine. Although there was no spinning on the tea cups.

Brayden got his first official real haircut in the Disney World's Barber Shop. Brayden's hair has only been cut by Jeremy and me attempting to hold him, let just say it is not fun. Jeremy entered the barber shop and asked if they would be up for cutting Brayden's hair. They were up for the challenge. Jeremy held Brayden and off the lady went! Brayden screamed and used every bit of his strength to make it stop but they finished. The haircut was great, even and with a little fade in the back. As part of the first haircut he received a little ear hat and the back says first haircut.

We had an amazing time. Brayden did really well. He rarely fussed and really did just go along for the ride. For more photos of the family trip check out our family blog.

Friday, April 3, 2009

Packing up and Heading out

Heading out - Brayden's snot. He is doing better. He sounds better. However the drainage is still an issue for him, still causing him to vomit. The vomit has been burning his skin (something we have dealt with in the past). This morning his was crying in pain from his skin burning. Thankfully we already have the burn cream and that seems to provide some comfort.

Packing up and heading out - we are leaving for Disney World. Who knew this day would actually come?! The boys have been counting down the days...not so patiently. I finally made a countdown to Disney calendar. This trip will be memory making. We are driving to Florida. Please pray for our safe travels and patience for everyone in the car! We are staying at my parents timeshare in Orlando.

I have been in full on planning mode this week. I have lists all over the house, making sure I do not forget a thing. I have talked to anyone and everyone about their trips to Disney. I talked to a mom who has a son in wheelchair about how we can get the handicap accessible pass for Brayden.

I know that going on rides is not something that will thrill Brayden (although he does enjoy elevators, the older the better), however this is a family vacation. I want to do things as a family. So many times, Jeremy and I split up. One of us with Carter and Luke and one waiting with Brayden. I want us to experience as much as we can together.

Any Disney tips would be greatly appreciated as well as prayer for the trip!