Another busy day for Brayden. I got a call from his school, Brayden was not acting quite right...seizure like, not really with it, very flush. I rushed to school and he was not acting quite right. I brought him home for a lazy day, staying around the house.
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.
After the roller coaster week we had last week, I was spent. Not only stressful but way too busy, running to and fro with already scheduled things each day and throw in the things we needed for Brayden...trip to the ER for not breathing during a seizure, the frantic trip for blood work, the waiting for the results,...
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.
I just spoke with the neurologist...Brayden does not have this disorder. The neurologist and neurogeneticist were surprised his blood work for this disorder came back normal, very normal, especially since his MRI showed a "classic case." If he did have this disorder, the blood work would clearly show it.
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.
I am using a lot of self control and not stalking Brayden's neurologist...I have her email and I know that she has a blackberry (or something like it) by her side. The neurologist told me she would call as soon as she would know something. Tomorrow is Monday and I will start the stalking then.
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.
Still waiting to hear from the doctor. The neurologist emailed yesterday to let me know the results would be available today or over the weekend.
Seriously, don't those lab people know we are waiting : )...hurry up, stat or whatever.
My cell phone has not left my side. I carry it to take out the trash, lay it by the shower, bathroom, where I am, it is there. Even today when I was out running errands, I did not put it in my purse for fear I could not get to it fast enough if/when it started ringing.
Brayden is not stressed by it at all, in fact yesterday he went for a drive in his attendants convertible. Enjoying that gorgeous weather. It was Brayden's first time with the wind in his hair like that. When he came back he was thrilled, wind blown hair and all.
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.
Seconds after I posted the previous blog (check it out, it is a cute video of Brayden and Luke), I received a phone call from Brayden's school. He had a big seizure on the school bus and freaked out the bus driver and bus attendant. Once he got to school he was extremely uncomfortable, then they called me to come in to the school. Luke, who does not have preschool today, and I jumped in the car.
Luke and I arrived at the school to find Brayden still in a seizure. They said he had been like that since he came off the bus. This seizure is kind of new. It is almost like he is trying and trying to break out of a seizure; squirming up and down, legs tight and seemingly agitated as if he is trying to sleep but cannot. I gave Brayden his rectal dose of Diastat (med for prolonged seizures) and loaded him in to the car. He was still seizing but I assumed he would come out of it soon, just as he has in the past. We were barely a mile from the school when Brayden started having breathing troubles.
He has NEVER had breathing problems with any seizure. Never, ever had breathing problems.
He was gasping for air and his color was changing.
I hardly ever freak out about Brayden's medical things. We can manage most of them and even if we cannot and need to go to the hospital, we know the routine and what Brayden needs. It doesn't freak me out.
This FREAKED me out!
My conversation with myself, in my head...
"Ok, he is not breathing. I am freaking out, really freaking out. Can I drive safely to the ER? Should I pull over and call 911. Ok, you are only a couple of miles from the hospital, you can get him there. Freak out later."
We drove straight to the ER and as we pulled up a nurse was walking in. I yelled, "I need help my son is seizing and having problems breathing!" She rushed over and scooped him up. Luke and I followed her right into a room in the ER.
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.
He was tested for some viruses, flu, etc. And they monitored him for a couple of hours. Everything came back fine and he was discharged. The ER pediatrican spoke with Brayden's neurologist and the neurologist made changes to two of his medications. Of course we will be following up with the neuro doctor soon.
Jeremy came and picked up Luke, who is thrilled to be hanging with daddy. I drove Brayden home. Brayden has been all smiles and quite happy since coming off of the medication. I on the other hand feel like I need a good cry.
I just never freak out with his stuff. This really rattled me. Pray that this breathing problem was a one time incident. Seizures with breathing problems is a huge problem, one that we do not want to deal with...at all.
Here in Northern VA the rain has been around for too long. Long cold, rainy days. 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.
We are in the process of making our first home modification for Brayden.
A wheelchair lift is going in the garage. We have about four steps from the garage in to the house. Brayden's wheelchair (especially with him in it) is hard to carry in and out of the house. With him catching the bus at 6:50 a.m. we need to get him in and out of the house with ease; and any other time for that matter.
The company came out yesterday to look at what we should have done.
Before our families freak out or I freak Jeremy out...we are not having any more kids. I have no, I mean no, desire to be pregnant again. Pregnancy is not fun for me, I do not enjoy quality time with the toilet or an IV bag.
So what is this post all about then?
How did you know when you where done having children?
I go through purging moods every few months. I clean out the house of things we no longer use, need, want, or grown out of. I have a rule of...If we did not use it this past year, it's gotta go.
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.
It all made me sad.
I cannot believe we are done having children.
Very early on, Jeremy and I talked about adoption, usually international adoption. This may be a surprise to some of our family because we only talked about it with a few people.
We thought that adoption might be something we would do to grow our family. At various points in our marriage we talked about it, then about it more seriously, then not for awhile. All the while still a possibility.
This past winter Jeremy and I went to dinner at a little restaurant in Purcellville called Magnolias. Jeremy and I talked about adoption again. He told me that the door on adoption had closed for him, meaning not something he could see us doing. Practically I agreed with him but my heart had not settled on it.
I just really thought that God had special plans for our family and that included adoption, especially since it had always been a part of our discussion on having a family.
As time passes, Brayden's long term needs are becoming more apparent and we are settling in to our lives having three busy boys, I realize that adoption is not something that is going to happen.
The morning I finished up sorting through all of the baby things, I sat on my bed and got a little weepy; sad that we will not be adopting and we are done having children. I said a quick prayer for those who are and the children that need to be. Then I checked my email, a friend announced that they were adopting from Rwanda. I shed some tears in excitement for them and some because it wasn't us. I am thrilled for them but it really made me realize as I was reading her email the day that I was getting rid of our baby items, adoption is not our path.
God had a special child for us. I thought it would be through adoption instead it has been through Brayden (and of course Carter and Luke).
I honestly cannot imagine having four children. I just cannot help but think how do you know when you are done having children?
However sometimes it is hard for us and others to see him as a toddler. For me, he will always be the baby of the family, being the youngest. Yes, I baby him because I think he needs extra TLC.
Because his developmental skills are within the newborn to six month range, he is very much like a baby. However, he is NOT a baby. He is a toddler, on his way to being a big boy.
The past several months we have been moving towards making his life less baby. Of course the big move was school and the bus. But we have tried to change things in little ways. He will be getting a twin sized bed soon, he wears shoes, we took off the canopy on his KidKart so that he is exposed more to the world and it looks less like a stroller, and we talk about him like we would a toddler, not a baby.
This past Sunday we tried something else as well. Sunday school class.
For the past two and a half years Brayden has attended church with us. Our church has a room in the back of the sanctuary called the "cry room". A room where parents with little ones can sit and still be in the service but not be in the service (by the way, every church needs this). Thankfully we had this as an option, we could all go to church and Brayden could sit with us. Sometimes, we actually put him in the nursery, if we knew someone in there and they were comfortable with him.
This has been working, however I need out of the cry room. While it is great...I cannot sit in a glass box during church anymore. I do not need to hear myself sing, it bounces back at you from the glass. I do not need to see my reflection in the glass anymore, apparently I have some serious dark circles and fluorescent lighting in this room is not a good look. I have no attention span sitting in the back, I had no idea how many people get up and down during an hour and half service.
And Brayden needs to be out of the nursery, he is not a baby.
Jeremy and Brayden went to the 2 year old class on Sunday. It felt strange to wheel him into this room with busy tw0 year olds and realize they were his peers. Brayden seemed to do pretty well, enjoyed the music time but got a little rowdy during story time. The next few weeks Jeremy or I will stay with Brayden in the two year old Sunday school class to get him acclimated and the teacher comfortable with him being there; then we have some friends/volunteers that will be Brayden's "friend" during church, hanging with him during Sunday school wheeling him to music and story time, just helping him out.
Brayden is the youngest of three boys. His life is busy but so are his brothers. Thankfully we have Carter and Luke is keep us living the "normal" life, not consumed by the medical, therapy, special needs world. Brayden has learned to go along for the ride, as I think many of the youngest siblings have to do.
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.
We do not get many (exciting) firsts in Brayden's life. So I considered this to be a first worth documenting. Brayden's first school picture. I wanted a behind the scenes look at what they do for the kiddos in special ed.
Brayden's is in special education preschool at a public elementary school, so they do school pictures. I was a little skeptical...because I remember my school pictures and some can be pretty bad.
The photographer, special teachers, aids and therapists are out there helping the children. For the ones in wheelchairs, they drape their chairs with a big dark cloth. Then everyone tries to get the child to look some where close to the camera and a smile is a bonus! They are all so patient and really give the children an opportunity for a good picture.
Brayden did great. I came with him to school for pictures because it was not a day that he goes to school. I got to see how he is getting comfortable with his surroundings in school and he seems to have really taken a liking to one of the aids.
When it was his turn for the pictures, he actually smiled. They got a couple of him smiling so we will see what comes!
Yes, the fair was an adventure (see previous post below). So many tidbits to blog about.
Here is another.
One of our first stops at the fair was a silhouette cutting booth. I am a sucker for getting take-aways from any fair.
I thought it could be fun to have Brayden's done (although a little curious to see what his little microcelphaly head would look like). I asked the people if they would be willing to do Brayden's. They said yes but thought it would be best to come back when he was awake. I responded kindly with an explanation that he cannot sit up on his own so sleeping would be no different than awake, other than his eyes.
The women politely asked me what was wrong with him. I responded the best I could with my typical answer of "brain abnormalities and cerebral palsy". The women seemed to not know what to do with my answer to her question. As she finished up and handed me Brayden's silhouette she tried to offer me kind words of "Maybe he will grow out of it."
She did give him a nice round head (his is actually quite small and a bit flat) for his silhouette.
Luke, Brayden, Brayden's attendant and I headed to the Waterford Fair. Carter was there with school for the day.
The Waterford Fair is full of old time crafts, civil war reenactment and touring historic homes. I knew that fair and location was not suited too much for Brayden. All of the buildings are historic, rough roads and big hills...not the best for a wheelchair but we were going to make the best of it.
But first the parking. Before I go on with this story, let just say I rarely behave like this (thank goodness) and it is clearly not my most mature moment.
OK back to parking.
I live in Waterford, just outside the historic old town. I knew where would be the best place to park for Brayden's wheelchair and the people directing traffic were helpful...that is until we came across an overzealous volunteer. I was following the fair traffic down the main road. I had my window rolled down. When we came up to the volunteer, I asked for handicap parking ahead because that was where I was told to go.
The women came back at me with a "NOOOOOOOOOOO!!!" With a mean face and her face so red from yelling and she was only standing 5ft from my window. I said that I was told to go ahead. She again screamed, "NOOOOOOOOOO!!! YOU HAVE TO GO IN HERE! NOW GO, GO, GO!"
I cannot remember in my adult life when I have had someone yell at me like that. I was so flustered that I drove in to the lot she "told" me to go into.
OK, here comes my not so great moment...
As I was driving in, I was hanging out my window yelling back to this volunteer, "YOU DO NOT HAVE TO YELL AT ME! And I was not finished yet, I came back out my window as I was further in to the parking lot, with a "YOU CAN ASK ME TO DO SOMETHING NICELY!"
Yes, I know, mature.
We went into the lot and found another volunteer who sent us back out of that lot to another one where we could park for handicap accessibility.
After the parking fun, we went down to the fair. It was wonderful. Luke spent most of his time making things like a little broom, stamped leather and made a leaf ornament. He was fascinated with a mime who was doing silly things and playing silly music. Luke wanted to sit and watch every performer that was around. Brayden slept for the majority of it but was awake enough to enjoy some music.