Thursday, December 31, 2009
The doctor asked, "Your other two children, did they have large or small heads?"
Me, "Their heads are big...really big."
Case in point: the boys needed helmets for their new ATVs. We headed to the store this week. We tried on the Youth Small, then the Youth Medium...not even close. Then the Youth Large and Youth XL, not even budging. They ended up with Adult helmets for their big heads.
Do they look like bobble heads with their skinny little bodies and giant heads (with the helmets)!?
Tuesday, December 29, 2009
With all of the hustle and bustle he did great. Seeming to find a nap whenever he needed it.
While he did great, it is still hard to not have him fully participate in Christmas. One of the best things about Christmas is having kids...all of their excitement...their anticipation of everything Christmas...their joy. Brayden is there, being good but no riping into the presents, squeals of joy, excitement about Christmas or running around with cousins.
I want him to know how exciting Christmas is and be in on the action.
He was in his own way. Some sweet moments:
Brayden's cousin, who is the same age as Brayden (only a couple of weeks apart), offered to push Brayden. She did great and he really like it. I loved it.
And Brayden with his Great-Grandmother, my Grammy, getting some snuggles by the Christmas tree...they just looked so cozy.
Thursday, December 24, 2009
Friday, December 18, 2009
Wednesday, December 16, 2009
A hospital like bed, that doesn't look quite so hospital.
This is what we are trying to get.
It was denied in insurance and Medicaid...they say it is not a medical necessity. They said that maybe something like this would work (cheaper for them is my understanding).
It does not work. Part of the reason is that Brayden's arms and legs currently get stuck in the rails of his crib, even with a bumper. When Brayden is at the hospital, they put up big protective things around the bed rails to protect him when he has seizures. Not to mention, his head needs to be elevated, we need him to come up high instead of us bending over (hurting our backs) to tend to him, especially as he gets biggger...I could list many more reasons but I won't.
My big reason for wanting the first bed and not the latter is quality of life. Who wants a hospital bed in their house? Hospitals are not fun, we do not need to bring it into our home. The bed we want has all the features of a hospital bed and looks more like furniture.
The plan is to appeal the insurance and Medicaid. Add a physical therapist and doctor's letter of medical necessity...hoping that we get it.
Monday, December 14, 2009
Getting kids ready for school is a challenge. At least they can help get themselves ready.
Getting Brayden ready for school is a challenge.
Brayden needs to have his stomach suctioned for about 30 minutes. Then we do meds...I am measuring things out to the .25 ml and cutting little tablets into 1/4. Some medications go in the G-tube, others into the J-tube. Flush with lots of water.
I make his formula for the day. Fill to 13 oz of water, then 1 scoop of formula, 2, 3, 4...I am tired, what number was I on? Oh, 5, 6, 7, 8 and 1/2. Shake and shake, it doesn't seem to mix well. Set up the feeding pump and ready to use once he is at school.
Wash his face...he does not like it.
Saturday, December 12, 2009
We finally made it back. Talked with the dietitian and then one of the neurologist that heads up the ketogenic clinic. We went over Brayden's medical history. They talked about the diet. It requires 3-4 days in the hospital. Once home, weighing and measuring liquids to put into he feeding bag. Checking his blood sugar and urine.
Then we headed upstairs for lots and lots of bloodwork as well as a urine sample (oh that is fun).
The goal is to decrease Brayden's seizures...Brayden's neurologist is hoping that a by product of it could be to help decrease the vomiting if it is coming from some unknown neurological cause.
The ketogenic team did not declare Brayden a candidate for the ketogenic diet. Since he has had pancreatitis from an unknown cause and his chronic vomiting, it could make it worse but they do not know. They will talk with Brayden's neurologist and give us a call sometime next week.
It was a long day.
Thursday, December 10, 2009
We have talked with most of Brayden's doctors about this diet...no one is sure if it is good to try or not.
The diet is a huge undertaking. It requires 3-5 day hospital stay to get it started and then constant monitoring after that.
I have lots of questions. I have not met anyone yet with a kiddo that has a G-J tube that has been on the diet so I have no idea how it would work for Brayden.
Pray that we will find some answers today or a clear decision about whether or not to do the diet.
Tuesday, December 8, 2009
I actually feel pretty good. We get a good night sleep almost every night (thank you Lord for three boys that have always slept well). Still there are days that I feel worn out.
Last week, I was having a good day. Got lots of things done, everyone was where they needed to be and I was right on task. But I had three, totally separate people ask me if I was okay. I mean really ask me with concern. One said I looked like I had been upset. Did I look that worn out? I didn't feel it.
Each time I got in the car and look at myself in the mirror. How bad are the dark circles? Are my worry lines looking more worrisome?
Have you ever noticed that when any POTUS (the official abbreviation for the President of the United States) starts their term they have dark hair but by the end of their term they are almost completely gray. The stress of it all actually ages them?
Is the stress of this life aging me?
For now, I will be stopping by the Clinque counter for some eye cream or learn how to do the smokey eye make up.
Saturday, December 5, 2009
Well this weekend we thought it would be fun to get our Christmas in the midst of our first snow of the season. It was a cold and very wet snow. All of us bundled up and Brayden was bundled so much I am not sure he could move. Worried that he might get too cold or uncomfortable we wrapped him in many blankets.
The snow came down and down. It was beautiful but how was Brayden going to do? He was in the double jogger...a bumpy ride down the paths to cut the tree. His brothers running all around throwing snowballs every moment they could. And Brayden loved every minute of it all...except his hat...not a fan of the hats. He was relaxed taking it all in.
He really does like being outside, whether by a campfire, on a boat, at a park or fair, farm, for a stroll and now in the snow.
You have to check out the family blog for all the pictures. It was fun!
Thursday, December 3, 2009
Monday, November 30, 2009
Thursday, November 26, 2009
Tuesday, November 24, 2009
One quiet morning (meaning Carter and Luke were not home and the dog was outside), I put in a Praise Baby movie. Brayden has rarely seen/heard this movie but this day he was having a blast "singing" right along with it like it was his favorite. I had to capture the moment on video.
It is one of the sweetest sounds.
Saturday, November 21, 2009
On a side note, you may notice, Brayden feeding pump pole (behind the big orange machine) is decorate with tinsel. He likes the shine of tinsel. Yes we decorate his pole, right now it is pumpkins for the fall...soon something Christmas...once I actually make it to the store to find something.
Thursday, November 19, 2009
It would be nice to know something...a label of some sort, a diagnosis.
I get several special needs publications a month. I tend to leaf through them quickly and come back to the articles that I want to read. More often than not there is some article/discussion about labeling people.
Labels are not good. Don't people people in a box. Do not define people by their diagnosis.
I get the point.
While I agree with it to somewhat...I feel like we are on the flip side of that argument. I agree with it when it comes to social interactions but not necessarily when it comes to the medical world. Brayden has no label, no diagnosis.
We have NO road map to help guide us through this. Every new doctor or hospital, we start from scratch. I have a list of at least a dozen things that describe Brayden's medical condition but not just one good label that someone can wrap their head around. No diagnosis, no idea what to do. We have no idea if things are going to get better or worse.
For many months, we have been reacting to bad events. We would like to be proactive rather than waiting around for something bad to happen and then making decisions. If we had some sort of a diagnosis then we could have some guidelines, things to look for, when to push the panic button, ways to help him...not to mention, then the doctors might know what to do.
Having a label/diagnosis is helpful. I know it does not come with step by step instructions and every child is different within that diagnosis, but it gives you something. Something to help your child, prepare for whatever needs may be ahead.
I am not asking for a ribbon to put on my car or a rally to attend, just something to help Brayden in whatever way we can.
No label/diagnosis feels like you are walking in the dark, waiting to bump into something, stub your toe and then realize that was not the right direction. A label could give us a little light (even a minuscule one is better than none) to help us see.
So for now we wait...wait for that label/diagnosis...if it comes at all.
Tuesday, November 17, 2009
I was incredibly anxious about the visit for many reasons. Two of Brayden's molars finally came through and looked very gray. How was the dentist going to get in his mouth? Brayden gags and then vomits with just about anything that upsets him, let alone sticking things in his mouth.
Since Brayden does not take anything by mouth and has not for a long time. His teeth take a very, very long time to finally poke out. Going to the dentist has not really been on his list of things that needed to be done...we have been dealing with bigger things.
We scheduled his appointment with the family dentist, not expecting them to be able to do much but at least have a look. Then we could possibly look into a dentist that does sedation or get in the queue for the dental clinic at Children's (which is a really long wait list, no surprise).
We rolled Brayden in the office, did not take him out the wheelchair. I told the dentist my concerns about the teeth looking gray. The dentist went in for a look...with the little mirror and the pick. I started to sweat a little, sure that Brayden was going to start gagging...his teeth were going to be a mess...just not good.
However, the dentist used the pick and scraped out the big gray clumps. It was not his teeth that were gray but something he had vomited (old stomach bile or medicine) that built up on his teeth. Brayden fussed a little but did not get too upset. Brayden's teeth were just fine.
Then came the questions, a version of it...
Dentist: "How do you brush his teeth?"
Me: "Brush his teeth? Umm we do not do that very often."
Dentist, trying to be understanding.
Me: "Just about anything makes him vomit. He already vomits enough so we do not do much to aggravate it."
Dentist: "You should start trying again."
Me: "I know, I have just been chicken (and feeling like a neglectful mom that doesn't brush her child's teeth...who does that?)".
Dentist: "You are on well water, correct? Have you been giving him fluoride?"
Me: "I have not for awhile. His system has been so volatile that we only do important medicines."
Dentist, trying to be understanding: "You should try giving his fluoride again to make his teeth stronger."
Me: "I will."
So there is my confession/neglectful mom moment for the day. We do not brush Brayden's teeth regularly. It is like a huge therapy goal to tolerate a brushing and not vomit. We will start trying again.
Brayden's teeth actual looked pretty good, no problems, despite all of the vomiting, lack of brushing and lack of fluoride.
I promise we will take better care of his teeth.
Monday, November 16, 2009
Waverly and her brother Oliver have terrible disease called Sanfilippo, they have the most aggressive form of it. Each birthday for them is such a milestone.
It was quite a special day. Of course we went on the playground and the carousel. Since the park was pretty empty, Carter and Luke loved to push Brayden through the maze and all around. It gives me such joy to see them involve him in so much. Brayden always seems to enjoy being in on the action.
Saturday, November 14, 2009
Thursday, November 12, 2009
3. A gourd. A what? Yes a gourd. The gourd is bumpy...lots of great texture. And he painted it with assistance. What a great idea for therapy. Painting a bumpy gourd (which keeps loading sideways but I guess a gourd looks pretty much the same no matter which way the picture loads).
Wednesday, November 11, 2009
Tuesday, November 10, 2009
We sat and talked and talked with the doctor and her staff for at least an hour. They asked many, many questions and I did my best to answer them all. Brayden is a mystery.
The doctors are looking into a diagnosis for Brayden, perhaps a syndrome or something.
Brayden has many random puzzle pieces that do not fit together.
- He does not sweat.
- Not great body temperature regulation. He gets a fever if too hot. In the winter his hands and feet get purple from being too cold and then his body tried to overcompensate and turns him bright red, swollen and hot.
- He does not have tears when he cries (he is starting to but not very often).
- Pancreatitis (possibly two cases) that cannot be explained.
- Slow motility, if at all with his stomach.
- Of course the vomiting.
- The vomiting getting worse.
- Lots of brain abnormalities, parts are missing and others are abnormal.
Did his brain not develop or was there something that has happened to cause damage? At first they thought a trauma happened in utereo that stopped development and damaged things. Now they are leaning towards it did not develop at all/developed abnormal.
We are looking for some answers because we have always been reactive...waiting for him to vomit blood and then we take action. He looses too much weight...then we do something. We go to the hospital, adjust medications, formula...all a result of something bad happening.
If we have an idea what Brayden is dealing with then we can be more proactive...possibly doing the ketogenic diet...rather than waiting for something bad to happen only do a temporary fix.
Lots of blood work was done yesterday, looking into metabolic disorders, gene and chromosomal abnormalities. It will take a couple of weeks to get the results.
Brayden is a puzzle.
Saturday, November 7, 2009
God has blessed Brayden with a thick head of hair, over compensating for his little head. He needs a haircut more than I care to do. We tried doing them at home...resulting in Brayden screaming/crying and Jeremy and I doing the same...a disaster. Then we started trying an actual barber shop. He would cry. Then the past few times he would squirm and fuss but at least no screaming. His attendant holds him because I cannot handle making him uncomfortable or cause him stress so it stresses me out to hold him for a haircut.
Well yesterday, he did this...
No his eyes are not just closed during the picture. He is asleep, really asleep and he slept for the entire haircut. The easiest haircut he has ever had.
He could have been tired because the night before he was partying it up at Chuck E Cheese. A place that has been sensory overload (for me too) was fun for him. He loved staring at the lights.
He could not have been too tired because some how he slept there right in the middle of Chuck E Cheese with all that noise.
He woke back up and had a grand time with the robotic Chuckie. He loved the music, the swirling lights and he sang right along.
Friday, November 6, 2009
Wednesday, November 4, 2009
After that we loaded the car for an adventure filled morning of driving an hour to the hospital just to pick up Brayden's brain MRI so the neurogenetic clinic could review it further (the MRI was done at another hospital instead of Children's). Not once did they complain about their day off from school being spent in the car for Brayden. We got to the hospital and they took turns pushing Brayden because, according to them, he likes it better when they push him.
Monday, November 2, 2009
Carter and Luke had a big soccer game (Waterford vs. Waterford). They won 3-1 and Carter scored 2 goals. However during the game Brayden was in an intense seizure. I gave his Diastat, med for bad seizures. It did nothing, in fact the seizure was getting progressively worse. Jeremy was coaching, Carter and Luke playing. I watched the game, watched Brayden. After the game, we quickly rushed home and called the neurologist on call.
Here is my conversation.
Me: "Hi, my 2 year old son, history of seizures, is having a bad seizure. We gave him Diastat and it did not do much."
Neuro: "How much Diastat? How long ago?"
Me: "He is on a low dose at 5 mg and we gave it to him about an hour ago. For a total seizure time of about 1.5 hours. Not a seizure that he is coming in and out of, a seizure that has lasted that long. Can we give him another dose of the Diastat?"
Neuro: "You need to hang up the phone with me and call 911. Since he has been in a seizure that long."
Me: "Really? We cannot just give him another Diastat? He has seizures all that time."
Neuro: "With a seizure that last that long, Diastat is not going to pull him out of it. He needs heavy medication. Now hang up with me and call 911."
Me: "Ok, thanks."
We call 911. They arrive, we know them, we know that medic. They take him to the hospital. We know the doctor, the nurses and the techs.
Jeremy rode with Brayden to ER. I stayed home with Carter and Luke got them ready for trick or treating.
At the ER Brayden was given an IV of Ativan and some oxygen. His o2 levels were not so good and he got the little nose of oxygen. This seizures lately have been effecting his o2 and they have not in the past. The Ativan quickly took affect, Brayden slept and when he woke he was much better.
I got the call Brayden was ready to be discharged. I dropped Carter and Luke off with some friends for trick or treating. I go the hospital pick up Jeremy and Brayden bring them home. I then head out to meet up with Carter and Luke.
Brayden coming off of Ativan has not been pleasant lately. He screams and screams. He screamed himself to sleep after coming home from the ER.
Some where in the midst of Jeremy getting him in bed and me giving Brayden's meds...his J-tube was not plugged in properly. We did not realize this until, oh, 4:30 a.m. The feeding pump had been running all night, not into his intestine but all over his bed. And since his J-tube was wide open, all things in the intestine leaked out. Not good (we have been trying to catch up with his fluids since).
We gave Brayden a bath and settled him back in to bed. Jeremy left for a trip.
A few hours after that I loaded the boys in the car and left for church. Brayden decided to vomit 2x on the way there. Enough that I had to stop the car 2x on the side of the road and take care of him...in the rain. We finally arrived...I was volunteering that morning and was late and flustered.
Oh it was a memorable Halloween. Brayden did have an adorable Halloween shirt that glowed in the dark. Only the ER staff got to see it.
Carter and Luke did make it for trick or treating and had fun (Thanks to the Colemans for helping them have a great Halloween). Check it out.
Friday, October 30, 2009
Thursday, October 29, 2009
This afternoon I heard this song.
Many months ago someone sent this to me. I recently emailed to a friend and we talked about it a bit (her son has cancer) and her story with this song.
As a parent of a child with big health/medical issues we spend many hours praying for him, others pray for him...we have learned to pray for many others dealing with similar circumstances in an entirely new light.
This song...well just listen, grab some tissues, you will need it. I have yet to make it through the song without some quality tears.
Wednesday, October 28, 2009
During all of that I kept my head on straight, going through the motions just as I do with most of Brayden's things. Being cool, calm and collected.
I have to say that last week, outwardly (other than to Jeremy) I looked cool, calm and collected. Really I was a mess. Seeing Brayden having such difficulties breathing during that terribly long seizure, shocked me back to reality of realizing the severity of what Brayden deals with on a daily basis. We are so used to it. Lately, we have heard people use the term to describe him as "medically fragile". I did not really agree with that...until the whole not breathing thing.
Then talking with the neurologist, reading the articles that were sent about that metabolic disorder, seeing in black and white..."early childhood death", too much to handle. While we do not really think about the longevity of Brayden's life, the potential of being diagnosed with such a disorder made it undeniable and no way to avoid it.
The doctors can only do so much since they do not really know what they are dealing with, they can not tell us much. Are things going to get better for him or worse? Can a doctor answer that question? I did ask them...all of them...not one of them could answer that...they did say they would work with us to improve his quality of life. And it so ways things have gotten better and in others it has not.
We just do not know.
Only one knows.
Waiting on the Lord.
If I did that better I would not have ended up in bed this past weekend sick to my stomach with a ferocious migraine from being stressed.
Monday, October 26, 2009
The plan is to see the neurogeneticist to review the MRI further and to possibly look at other metabolic or genetic disorders since there seems to be a "pattern".
We are also talking with the GI and neurologist about a ketogenic diet. Scheduling a visit with the ketogenic clinic. This diet is used for many reasons (extreme vomiting, seizures, possible disorder), we may try Brayden on it. One of which could have been because of this metabolic disorder.
The neurologist was pleased that Brayden did not have this disorder since it is degenerative (as are we) however she could not quite answer my question if Brayden's brain is getting worse or staying the same. Her answer was that he has such little white matter and very thin, as well as missing parts, it is hard to tell.
For now, prayers answered that Brayden does not have it. We are still looking for some answers and adding more people to see to Brayden's list.
Sunday, October 25, 2009
For now, trying to enjoy the weekend.
I found a much better article about the disorder, it uses words most of us can actually understand. Check it out, Pyruvate dehydrogenase complex deficiency (PDHA).
I am not one to usually be concerned much about what the doctors say, more the manner in which they say it. This is one of those times.
This past week when Brayden's neurologist called at 1:30 p.m., I told her that I just missed her at Children's we were in the area for Brayden's GI doctor. She asked me if I could bring Brayden back down that day for blood work. She knows that we live an hour from the office, it was 1:30 in the afternoon...I was getting concerned. Then she gave me the direct phone number for the lab technician to make sure we could be in first thing the following morning for the blood work. A direct phone number!? For those of you who have dealt with any Children's knows that the phone system is a very tangled web of options, voicemails and hardly ever talking to an actual person and if you do they are no where near the doctor. They never give you a direct phone number. Again, getting concerned.
Then she went on to explain that she showed Brayden's MRI to the neurogeneticist shortly after she reviewed it. The neurogeneticist compared Brayden's MRI to a child with this disorder and they were almost not able to tell a difference. They called Brayden's MRI, a "classic case" of this disorder, as she described in the email she sent me...oh, with other doctors cc'ed.
See all those things little adding up to more concern!?
Despite my rambling on, I am actually much more calm today about it all. But still calling/emailing/messaging the doctor tomorrow morning.
Friday, October 23, 2009
Wednesday, October 21, 2009
They called us and asked for us to bring Brayden in immediately for blood work.
Brayden went in for blood work today.
Now we wait for the results.
The doctors think he has metabolic disorder called pyruvate dehydrogenase complex deficiency.
I cannot even begin to explain what it means and how the treatment will, should, could go. It is degenerative...it could be an explanation as to why his vomiting has been getting progressively worse as well as his seizures.
We just don't know yet. It may be a long 24-48 hours waiting for the results.
Monday, October 19, 2009
Brayden was starting to settle down shortly after arriving. We figured he had been seizing for about two hours. Thankfully, his breathing was getting better and the seizure was fading away. Thank goodness.
What to do when it is raining?
Luke in his bean bag chair, Brayden in his tomato chair, watching the movie. Actually Brayden could care less about a movie, he just likes to be around his brothers.
Luke trying really hard to watch the movie, wanted Brayden to be quiet. I was in the other room listening to them.
Luke, "Brayden, let's watch the movie. Time to be quiet."
Brayden, "Umm, rahh, rahh," (Or however to spell out his sounds)
Luke, "Brayden, quiet. Time for the movie."
Brayden, "Umm, rahh, rahh."
Brayden, loving that Luke is talking to him, would make more and more sounds back to Luke. Luke continued over and over to tell him to be quiet. The more Luke would talk, trying to get Brayden to be quiet, the more noise/talking Brayden would do. I was laughing to myself and tried to quickly grab the video camera.
Friday, October 16, 2009
Wednesday, October 14, 2009
This month, I tackled all of those clothes. Tubs and tubs of clothes. Having three boys is great for hand-me-downs. However I still have had all of the clothes Brayden has grown out of. I sat for a few days sorting through all the baby items, feeling extremely nostalgic. I seem to have an emotional attachment to some of these clothes. I kept several outfits: their coming home from the hospital outfit to the outfits from our visits to the White House. The rest I sorted to pass on to a family in need and to Salvation Army.
Tuesday, October 13, 2009
Saturday, October 10, 2009
The adventure this weekend...
A corn maze (Carter and Luke looking over the corn maze from the bridge in the middle of the maze).
Carter and Luke love to do this. Brayden is going along for the ride. A ride in a double jogger stroller. A double jogger that I had from when Carter and Luke were little. I have not moved to a single jogger...well because I cannot find one to fit Brayden properly. I am trying to order him a special wheelchair/jogger stroller, which is a long process. His wheelchair that he uses everyday is not so conducive to the outdoor terrain. (Any stroller/wheelchair ideas are welcome).
So he sits in a double jogger. One seat for him, one for his feeding pump bag.
We all had a good time. And Brayden, well I think he just tolerated yet another outing. For more family pictures, check out the family blog.
I am always amazed at how well he does being toted around to just about everything.