Sunday thoughts.

happy Sunday....

from us.

it's been another long week...

a week of keeping close watch over my sweet boy and his breathing.

it hasn't been great.

he's had small 'suffocating episodes' pretty much every day.

but i have been able to stay on top of it and prevent any full blown 'turning blue episodes'.

you just never know.

 he's so perfect.

i love him.

so much.

tomorrow the new medication we are going to try is supposed to be flown in and arrive at my doorstep.

this will hopefully help control his constant movements, which in turn will hopefully (cross your fingers) help in some way with his breathing and all these scary episodes.

i don't know how.

i don't know if it will have any effect at all on my sweet boy. 

we've tried a 'miracle medication' before, that was supposed to calm his movements right away....

and it did not.

it didn't do anything.

i'm not getting my hopes up too high, but of course, i'll always have hope.

we'll just have to wait and see, it will take a while for medication to set in and get the dosage right.

so we'll just have to wait and have patience.

and hope his breathing can stay somewhat stable for the time being.

and just love him.

 that will be the easy part.

he's so lucky he has his sister in his corner, loving and supporting him all the way.

 she is his biggest fan, his constant cheerleader, his best friend.

i love her so much.

i'm so proud and impressed with the way she constantly handles everything like such a champ.

she is such a good girl.

i am so blessed to have her in my life, as my best friend:)

and my beautiful boy.

i'm amazed every single day at the amount of strength this sweet boy possesses.

he has to fight and struggle so hard just to breathe.

he's so brave.

and strong beyond measure.

i am so lucky i get to be their mommy.

there truly is nothing i'd rather be.

happy Sunday.

<3

long shot...

had an appointment with connor's neurologist/NP today.

basically to just discuss where we are and what our options are.

we are going to hold off on making any immediate decisions about breathing interventions as long as we can.

they are starting my sweet boy on a new medication, pretty much a trial medication for him.

it is usually only given to adults.

it helps in adults with movement disorders.

there isn't a whole lot of information on how it would work on a child.

but we are willing to give it a try.

if it works, it will help control and calm his constant writhing movements.

if it doesn't work, it will either make him move way more, or make him way too sedated.

(or one of the major side effects is suicidal thoughts and depression, hopefully i won't have to worry about that... :/ )

 

they had to get special permission for connor to be able to start the medication, since he's a child.

i signed some papers today and hopefully they will fly it in and we'll have it sometime this week.

and then it'll take a few weeks to start and get the dosage right, but hopefully we'll be able to see some sort of improvement relatively quick.

 

he had a little 'episode' tonight, just about an hour ago.

it wasn't too severe.

i hope he can just hang on until this medicine comes, and that it'll do something to help my sweet boy.

if not, decisions will need to be made, and i'll cross that bridge if we come to it.

 

for now, i will just love and treasure my beautiful little mystery boy.

he is everything to me.

<3

Sunday pics.

happy Sunday.

it's been a long week, and i don't feel much like writing.

so here are some Sunday Fancy Pants pictures, i'll let them do the talking....

happy Sunday.

<3

needle in a haystack.

we had an appointment with connor's neuro-muscular specialist today.

she met with the geneticist and head radiologist on friday to go over his MRI results.

so.

apparently, after closely looking at ALL his MRIs together, it is evident that his brain is still continuing to atrophy. (shrink)

there hasn't been a significant change since his last MRI, but there is still a small change.

so there's that.

now they are just trying to figure out which route of testing to do next.

they are pretty certain there is a specific gene that is causing all this, they just have no idea how to find it.

she said it's like trying to find a needle in a haystack to even know which gene to test.

they think it's probably a metabolic disease.

it is still being labeled as a degenerative brain disease, unspecified movement disorder with chorea.

she is going to try to get connor on a trial medication, one that would hopefully help with his movements.

the medication isn't usually given to children, so she's going to have to see if she can talk to some people to try and get it for my sweet boy.

she said that it is possible that if this medication could help with his movements, it might help with his breathing issues?

she doesn't know.

 she said if it was at all possible, she would recommend waiting on making any decisions about breathing interventions until we could try this medication.

but that could be weeks or months away.

so i'll just have to see.

i meet with his other neurologist nurse practitioner on monday, and she will be the one who will be able to help walk me through all our options and hopefully help guide me to the right decisions for my beautiful boy.

so.

for now, i will just keep an extra close eye on my sweet boy, try to keep him as safe as possible and pray for his peace and comfort and guidance in making good choices for his future.

he's a complicated boy, a beautiful beautiful mystery.

and he's perfect.

i love him so much.

<3   

blue.

it's been a long, hard week.

it started out well, with my brother and his family visiting.

i got to spend time with my brother and his wife and my cute nieces.

love.

but then the next morning connor had another one of his 'suffocating episodes' where he can't breathe and starts to turn blue.

he's had these episodes periodically since he had his surgery and pneumonia in june.

it happened a couple times in illinois, but wouldn't last very long and didn't happen all that often.

but in the last couple weeks it has started happening more and more frequently.

and in the past 3-4 days it was happening at least once a day.

i have always been able to eventually get him to come out of it, by pounding on his back and changing positions, doing anything i can think of to get his airway to open up so he can breathe.

but that morning, it was a pretty severe episode, one i really didn't know if it would stop.

so i took my beautiful boy to the ER.

we got there and they took us back to a little partitioned room.

and we waited.

they examined him, took his history, did some chest and upper airway X-rays.

and then we waited.

and then we waited some more.

we waited for over 6 and a half hours in that room.

just sitting and staring at the wall and thinking.

and listening to the little boy on the other side of the curtain puking all over the floor.

:(

the X-rays didn't show anything.

i was hoping he had pneumonia.  isn't it sad when you hope your son has pneumonia?

he did not.

i just wanted there to be something there that made sense of all these blue episodes.

i wanted there to be something there that they could treat.

i wanted there to be something, so i could help my sweet boy.

they didn't feel comfortable sending us home, so they admitted us.

connor was uncomfortable, to say the least.

he was really agitated, and especially hates those hospital beds!

he cannot be comfortable in them.  no matter how hard i try i can't position him to where he can breathe well.

he either slides down, rolls, or works his way into a position that pushes his neck forward, making it almost impossible for him to breathe.

:(

it was a loooooooong night.

this was how we sat for most of the night, into the wee hours of the morning...

i love him.

our feet match.

i noticed we both have a little scrape on the exact same place on our right foot.

<3

when he finally did fall asleep, it didn't last very long, and it wasn't very sound.

he kept moving and jerking and thrashing.

his oxygen saturation kept getting really low.

the nurses kept coming in and freaking out.

i kept telling them it was because of the stupid bed, he couldn't get a good position for his neck so it kept coming forward and blocking his airway.

oh, how we missed his bed from home!!

my dad and i built him a bed, carved his shape out of foam, and it fits him just perfectly so he can breathe and not move or slide down.

i didn't sleep at all that night.

i just climbed into bed with my beautiful boy and spent the whole night repositioning his neck so his O2 levels would come back up.

he's such a strong boy.

we 'woke up' the next day and just waited for connor's ENT doctor to let us know what the game plan was going to be.

we are not a fan of waiting.

but that's all we seem to do once we enter the hospital realm.

 eventually his doctor came in and spoke with us.

he wanted to sedate connor and take him in the OR for a bronchoscopy.

he would look down his throat with a scope to hopefully find something visible that was obstructing his airway, something he could possibly fix.

i love him.

so we waited.

and waited some more.

finally, around 4pm they said they were ready to take him down to the anesthesiologist to get ready for the scope.

i was so hopeful they would see something, something they could laser or fix right there in the OR.

something that would explain these episodes.

something.

they did not.

well, they didn't find anything they could fix right then.

there are a couple different issues going on in his throat.

his tongue is really falling back into his throat, possibly obstructing his airway.

and his trachea is narrowing, at his last surgery in june it was at about 70% open, and yesterday it was 30%.

so that's a problem.

there are only a couple options left for us to do.

neither of them are good.

neither are easy, or what i want for my sweet boy.

but it is what it is and i have a couple different appointments, one tomorrow and one on monday with his differet doctors, that will hopefully help me make the best decision possible for my beautiful boy.

 

the didn't really want us to come home last night, they wanted us to stay another night to observe connor.

mainly because of the way his oxygen kept dropping the night before, but i felt he would sleep much better (and safer) in his own bed.

so they agreed to let us come home.

 

 

so we left the hospital knowing exactly what we knew when we came in.

not a whole lot of anything.

just a lot more confusion and frustration and decisions to be made.

he still struggles with his breathing and episodes, luckily he hasn't had any that severe since we've been home, but it's always a likely possibility.

hopefully these upcoming appointments will help bring some clarity and direction as to what we should do.

 the only thing i'm absolutely sure of is how much i love my son.

i will do anything for him.

i just hope whatever decisions i make will be the right ones for my beautiful boy.

he is so perfect.

<3

Sunday love.

Happy happy Sunday!

it's been a long week.

a rough week for my beautiful boy.

lots of breathing issues.

very unpredictable and hard to figure out.

lots of stress, lots of worry.

some tears. (mostly from me)

 i'll for sure be calling his doctor this week, hopefully he can help us figure out some sort of solution.

i love him.
i hate when he struggles.
i hate rough weeks.


BUT, today is Sunday.
our fancy pants are on, and we have an extra special treat.......

my brother and his family are here!!!!
they are in town for a few days and we get to have them stay with us!
we were excited to have someone to keep us company at church.

i love my brother.
and aubrey loves having her little cousins here to play with and love.
yay for family!!


they are a much needed bright spot to our less than stellar week.

who wouldn't cheer up after looking at this sweet face?

cousin love.


happy Sunday.
it's been a good day.
<3