Monday, January 31, 2011

No magic pill

Brayden is not gaining weight. Not one bit. We should be seeing a change in his stools since starting the pancreatic enzymes. There is no change in Brayden's stools.

In fact, some of his stools are looking a bit more alarming. One last week had about a tablespoon of blood in it. A few had these green balls (like cooked peas) mixed in his stools. I have called the doctors. The pediatrician has been giving it a lot of thought and done some calling around. We are waiting to hear from the GI doctor.

I am really getting discouraged. Brayden's little body goes through so much every moment of every day. Last night, he did not sleep (nor did Jeremy and I). Brayden screamed, not cried but screamed, on and off (mostly on) from about 12:00 a.m. until 5:00 a.m. A scream of discomfort. Jeremy said it was a scream/cry like none other he had really heard from Brayden before.

It is the hardest thing to hear your child suffer. A suffering that we cannot console or seem to help. Brayden cannot tell us what hurts or give us a clue as to how we can help him.

This evening, he had a diaper that required a clothing and linen change, as well as a bath. I was carrying him to the bath (the kind of carry where you hold under the armpits with my arms stretched out hoping to minimize my contact with the diaper explosion) and we passed by the bathroom mirror. I caught a glimpse of his body. Long and skinny. If I stopped, I could count each one of his ribs. He looked so skinny, sickly skinny. It brought a lump to my throat and tears to my eyes.
I let out a big sigh, placed him in his bath chair, gently stroked his skinny legs and prayed over him.
The enzyme was no magic pill but Jesus please give him something that helps.

Friday, January 28, 2011

Snow Days Indoors

Brayden only had one day of school this week. Some winter weather came upon Northern Virginia and school was out.

Brayden spent his snow days inside.

His nurse propped him up in bed with his switch; hooked up to lights and a vibrating pad underneath his legs. Brayden just had to hit the switch to activate everything.

Brayden did need to experience snow. Bring in a big tub of it and put his little hands right in. His first reaction was not a positive one.

Then he settled in for a bit, feeling it out. While Luke built him a little snowman.

Wednesday, January 26, 2011

A watched pot

Never boils. That is how I am feeling with the start of the enzymes for Brayden.

Brayden has officially started the pancreatic enzymes. It has been about 10 days. With every diaper change, I hope to find something is still oily, looking like he is still not absorbing. Still about 3 bowel movements a day. The true test seems to be if Brayden starts gaining weight. I must admit I want to weigh him every day. He feels so frail and skinny (although he seems to storing fat for the winter in his cheeks). No sign of weight gain yet.

This week Brayden has pink eye. Not quite sure how he got it since Carter and Luke have shown no signs and Brayden has barely been to school because of the winter weather causing school cancellations. As if Brayden does not deal with enough, let's do pink eye! Several days of eye drops, a few times a day and he should be done.
He is enjoying having everyone home for snow days. He gets to hang out with the big boys. One morning he sat with his brothers in the basement while they played Wii and he was just happy to be with them, everyone in pajamas and sweats.

Wednesday, January 19, 2011

Make a Wish Passes

I was googling this afternoon information for Walt Disney World, Give Kids the World (where we will stay), and Make a Wish at Disney. I am a planner. I like to have a game plan. And I tend to google too much. I am just trying to gather fun information (I am sure to pick up a travel book too, any tips would be great!). And trying to figure out how to fly with all of Brayden's gear.

After just a couple of google searches, I came upon a discussion group about Make A Wish at Disney. I clicked on it thinking I might find families that may have participated in it and I could find out information from the families. I was wrong. The discussion was started by a person who wrote in about handicap and Make a Wish people "abusing" lines for rides. They were frustrated that while they wait in line, these people get to go right up to a different gate and get right on. And wondering why it was okay of them to "cut in line".

Oh really?! I am naive to think that people would not have such responses to those circumstances. Trust me, outwardly, we get few benefits with this life. Going to the front of the line is the very least one can do for what Make a Wish families have to deal with on a daily basis. That is why Disney gives the Make A Wish (and handicap) families special passes.

Make a Wish

Yesterday, we received the phone call that Brayden has officially have approved for his wish through the Make A Wish Foundation.

We are going in Walt Disney World. I just sent an email for potential dates sometime in March or April.

So exciting! I am trying to keep it all a secret for the boys...they love surprises!

Monday, January 17, 2011

It's in the bag

Wanna guess what was in the my refrigerator (thankfully the one in the basement kitchen that we rarely use)?

That's right, yet another stool sample.

We have collected it and dropped it off, at a different lab. Hopefully the final one for quite sometime. No results yet but Brayden is being started on the pancreatic enzymes based upon the bit of stool lab work that was completed.

The pancreatic enzymes, Creon Lipase, will be mixed into his food/formula 4 times a day. We picked up the prescription today, starting it this afternoon and should see immediate results, meaning less stool and less greasy stool. The enzymes will help his body absorb food.

A lot of expectations for these enzymes to work for Brayden. He needs to gain weight. His little body seems so frail, bones protruding and uncomfortable.
The doctor mentioned today that perhaps Brayden's screaming and difficulties during the day and night could be to the fact that he is starving. Even though he is getting calories, many of it is coming out the other end. He may actually be experiencing hunger pains and headaches.
We are checking in with the doctor on Friday to let him know how the week went on the enzymes.

Friday, January 14, 2011

On a Curve

Brayden went to his orthopedist. We have not been to this doctor for a while. She prescribed him the AFOs and those have been great.

Brayden was there today for his spine and hips. Brayden has always leaned to his left, partially because of his disposition, seizures and comfort. Since the fall we have started to notice his spine was curving too much. We position him, prop him, etc. to help but without much progress.

His sternum is protruding too much and starting to cause pressure sores. Because of his weight loss, his hip bones are sticking out the back (it also does not help that Brayden had no bottom to start with)

Then Brayden's hips/legs have been extremely tight for the past several weeks.

We went to the orthopedist ready with questions and a note from Brayden's physical therapist explaining the concerns. Talked with the doctor and she ordered x-rays, which thankfully are done right in the office.
Once the x-rays were ready, we reviewed them and could clearly see the curve. The orthopedist talked about it but not enough to my satisfaction. The solution the Dr offered was a better wheelchair with more support and wrote prescription for a new wheelchair. However, Brayden does NOT spend his days in the wheelchair, nor do I want him to. He still leans in bed, when held or any other time.
As for his legs, the Dr. immediately (and rather insistently) recommended Botox. Botox is often used for children with cerebral palsy. However, I am not convinced this is an option for Brayden. The tightness in his legs has only been happening for a couple of months and we can relax them with effort, although the legs do not stay relaxed. Botox is temporary, lasting for 3-6 months, and would possibly need to be done with growth spurts or additional tightness. Also, in order to get Botox the children must be sedated each time.
This orthopedist is well known and well respected. However, she is an orthopedist...if things are broken then it is to be fixed...very black and white...problem to a solution, and Brayden is not a black and white case...things are very gray.
Needless to say, I left the appointment feeling frustrated. I called around to some friends with special needs kiddos to find out more and spoke to Brayden's pediatrician, who helped us set up an appointment with another orthopedist, this time from Children's, whom we will see in March (long waiting list).
Brayden has enough things to deal in a day, adding spine and leg problems is something we are trying to avoid.

Wednesday, January 12, 2011

Brayden's Spa

Brayden's hands are usually a mess. Purple from lack of circulation or red and swollen from too much; fingers chewed and cracked, sometimes cracking so much that they bleed. The winter is rough for Brayden's hands.

What is the solution?
Brayden's nurse lotions up his hands, wraps them, set for a while, then the plastic wrap comes off and he gets a hand massage. Definitely a highlight for his week.

Friday, January 7, 2011

The Nightlife

Remember those care free days of a late dinner, night out with friends, sleeping in the next day...

Well those days are a very distant memory, as any parent would tell you. Now, dinner is early, bedtime for kids is usually a long drawn out process (not matter what you do when they are little); after the kids go to bed, you go to bed shortly after because you are wiped out, and the kids will be up bright and early the following morning and you have to start it all over again.

Our boys have always been pretty good sleepers (my mission in life was kids that napped and slept well). That is until lately.

First, lets talk about Brayden. He had been having difficultly going to sleep. Crying and screaming some nights for over an hour. The harder we tried to console him, the more agitated he got. We started him on a low dose of Melatonin (1.5 mg) a few months ago. Give it to him a little before bedtime and he would surrender to sleep rather than fighting it. The melatonin has been helping him go to sleep.

Well lately, he has been waking in the middle of the night. Many a nights it is because of a messy diaper. While it is impressive that he is fussing and crying because he has a dirty diaper (in fact amazing that he is letting us know he wants to be changed), his dirty diapers are an event. The diapers are explosive. Last night (2:00 a.m.) for example, required a full change of clothes, linens, diaper and a sponge bath. After he is clean, he goes right back to sleep.

However, most nights he has been waking a few times, screaming and crying. Jeremy and I both try to console him without much success but we try. We are going to add in another dose of Melatonin if he wakes in the night.

Then we have been told that Brayden has mild sleep apnea. After several hospital stays, the monitors were showing Brayden's oxygen saturation dips into the 80s. We did a sleep study and we finally saw the ENT doctor today. Brayden has tonsils that are a bit large but not something that would cause any major problems. He does not snore and those brief moments of apnea, he recovers on his own. The ENT doctor told us that we could try and have the surgery to remove the tonsils but with Brayden's level of neurological and other conditions (he has hypotonia) having the surgery would probably not make a significant difference. We are NOT putting him through surgery. We will monitor his sleeping at home. If it becomes an issue, he could have another sleep study and re-evaluate.

As if Brayden is not keeping us busy enough during the night, Luke has been sleep walking; starting sometime in December. We have found him, in the middle of the night, sitting in the family room...just sitting on the edge of the couch, in the dark. Or he wanders into our room mumbling something. One night, he went into Brayden's room, turned on his light, swiped one of Brayden's stuffed animals and put in by his own bedside. Another night I found him with two sets of pajamas on...the feet pajamas but his arms were in the feet and one leg was in the arm hole. He woke up that morning quite confused.

Last night, Luke was up and at it. He came into our room. We put him back in bed, he was up and in the bathroom. Finally he was back in bed to stay...then a couple of hours later was when Brayden needed a full changing.

Looking forward to bedtime is party time here around the clock.

Thursday, January 6, 2011

The books on my shelf

If you are like me, then you might be trying to find places for the new things you received for Christmas...which means cleaning out what we already have. This morning I was putting away some books and stepped back to see what was on one shelf.
Interesting, no?

I like to read. I tend to have about 3 books on my night stand. Usually one fiction, one biography and something requiring deeper thinking/education. Over the years the book shelves have collected the phases of reading I have gone through.

This particular shelf, got me thinking.

1. Books about child rearing. I must admit there were other ones that once sat on this shelf but I tossed out in frustration during the first year with Brayden (i.e. What to Expect the First Year). Many of the pregnancy and baby books were gifts from people when I was pregnant. Bringing up Boys, when we first found out we were having boy number one.

2. Children's poem books when Carter first started showing interest in reading. Plus, they are some of my favorites.

3. The car wash book...there was a time when Jeremy and I thought life was settling down a bit. We had two boys. I wanted to start a business. We researched opening full detailing car wash. I researched, talked to small business programs, we talked to potential investors... We found out one was already being planned for our town of Leesburg (if ever in Leesburg you MUST go to the Auto Wash, love it) and we had an opportunity to talk with the owner and since, Jeremy has come to know him well. We put the car wash idea to rest and thought that maybe something would come up in the future. Clearly, that was long before Brayden came along. God certainly knew we had something bigger than a car wash coming into our lives.

4. The books about having a child with special needs. These books did not start coming right after having Brayden. In fact, one was given to my mom for me and she kept it for awhile, not sure if I was prepared to be in "that" category yet, let along read about it. I have come to appreciate and some what enjoy reading other families' experiences. It is not light reading, I tend to cry through many of them but it is comforting knowing that my feelings, thoughts, reactions, concerns, etc are very similar. Some books challenge how I view parenting child with special needs; I might not agree with their outlook or how they handle situations...all still helpful to me as we try to navigate this life God has given us.

What books are on your shelf?

As time passes, the books are changed around. We now have shelf for Carter's chapter books. A shelf that holds books done through Bible studies over the years. A shelf with our school yearbooks and starting to hold the boys' yearbooks. A shelf that holds my "smart" books, the books that requiring more time, more thinking...I have not touched that shelf in awhile.

Monday, January 3, 2011

New Year's

After a great New Year's party at a friend's house (thank you D. family), we spent the weekend resting. Gearing up for the new year...

Brayden's New Year's resolutions:
1. Gain weight (less messy diapers)
2. Less seizures and vomiting
3. Better eye gaze/looking at objects
4. Participate more in life and enjoy it - who knows what this will look like but we keep trying