is this really how the New Year is starting out? It can only get better from here, right???
Accepting prayer donations...
-oh and my hubby (and his sister)are doing well.... still no idea when he will be discharged- but he reports the pain management has improved.... now that is good news!
Please keep them in your prayers... and please pray for Ty as he is not well- and almost had to go to ER at 4am, but we are trying to hold out till a now scheduled bowel disimpaction for Thursday -
otherwise it's through ER and that is way more intense and traumatic for him..... I hope he can wait till then...
so please continue to pray for all of us.... this is a pretty crappy situation at this point ( I mean bad timing )
And what can top all of this, really nothing... but still is a pissy situation- someone stole my oldest daughters bike from school yesterday!
Really..... to say she's upset, well it's more like mad and sad- why do people do things like this.. and I think it's worse because it's on a day that her dad is in the hospital donating a kidney... Come on people.... have a heart! Oh the stuff we get challenged with ..... I"m ready for some sunshine please!!! Even on this cloudy day.... and I miss my hubby.. and can't be with him because Ty is so miserable. I wish I was cloned... not to mention, I just need Brian's love and support right now- this is not easy on my own.... as I was on the phone with the oncall surgeon at 3:15AM trying to figure out what we should do, I didn't have Brian there with me helping come up with a plan or just hold my hand.
That's the first time EVER since we've had children .... and I know he wants nothing more than to be here with us..... and Brian I know you are going to read this at some point...... you take care of you right now... so that when you are better- you are better! I can do this... I just miss you doing this with me! Can we go to Hawaii when this is all said and done? Oh wait, I forgot we don't leave the house....... well crap... how about a nice glass of wine to share!!!! Sound good :) So you get better, I will do my best over here.... and know that we are missing the heck out of you... do you feel it??? virtual hug and kiss when you read this!!!
Oh and in case I haven't said it lately, I am so so so proud of you.... you really are the most amazing person I know.... I guess that's why we are a good TEAM!, right!!!
Please say a prayer for Brian, the kidney donor, his sister Beth, getting a new kidney- and both of our families. And for Ty, who is severely impacted, cannot keep solids down at all- and will need to go in to hospital this week for bowel disimpaction...
but we are trying to get through one critical moment at a time....
And the 4 or 5 hour surgery time is going to kill me with anxiety!!!!
..thought he was going to throw up, wanted his tummy rubbed, was tired, and just couldn't fall asleep
So his throat hurts because he is refluxing so much, which is directly caused by being backed up and full ofmpoop.. Where he gets blocked up is in the part of the large intestines that is almost at the connector point of the small intestines, which means no room for food, feeling full all the time, and lots of pressure on sphincter causing more reflux
Not to mention his appetite is very very low, and these days that is very very unusual
As brian snuggled up next to him on the living room floor, rubbing his tummy, I was next to him just trying to keep,him calm Brian and I shared the look
The look of - oh my gosh, it's this bad and what the hell are we going to do Brian is going in for a major surgery ~he is donating a kidney and Ty is having his own major health issue that requires intervention What are we going to do?
How are we going to manage this? And I know Brian is thinking, how is Jennifer going to manage this on her own. We share another worried look at each other, we are both thinking, really this now?
Why not 2 weeks ago, why not 1 week,,, anytime but 2 days before Brian has surgery!
How many days can we let Ty feel this uncomfortable? Can we just get through this next week?
we will step up even more measures to help, even if just a little bit, we can add things to the irrigation, but it can also backfire....causing terrible cramping without positive results, and more vomiting since it just can not get through What goes in, must come out.
One way or another
I just hope we can get through this week, Know Brian is on the healing path, and next weekend we can tackle this bowel issue....please..thats all we want rigt now...
.one crisis at a time please ...
I only have so much reserves....and lately I am feeling tapped out. ..
...and those moments that only Brian and I share, and we have so many,of them....
..they are an amazing bond we have and gives us both strength when things get tough and things have been really tough these past 9 years
It is only something that is between us, a secret world of parenting a child with special needs. I know this is hard for him, I could see the worry in his eyes.
A helpless look because for the first time EVER he won't be available when Ty needs him, when I need him
And I know he is worried about me and handling all this on my own,
even if temporarily But I will be fine, doesn't mean I won't cry, I won't be stressed, that I will handle ALL things with ease
But it does mean..I will do the best I can,
I may not be available the way I would like to be, especially to the girls, but I know they will be okay!
We will get through all of this, even if it feels like we won't at times!
We will! We always do- some how
So Brian, I know you will read this at some point....we will be okay!
So your job is to take care of yourself, you are doing a good thing, a most unselfish thing- an incredibly brave gesture - one of many reasons why I love you
And we need you to get better soon by resting, by not worrying, by doing everything you need to get betterbecause we will need you when you are better. You know that ;)
But until then, we will be okay!
New Years, check
Brian's pre-op appointment, check
get shopping done early, plan meals,
check
Make back up arrangements for next week in case, well, in case it's necessary because as they say Sh** happens
And if it's gonna happen
It's gonna happen to us ......
Have Monday morning details ironed out for Brian getting to the hospital at 5:30AM
Get oldest off to school that morning
littlest is not going to go to school- too complicated of a day
Behaviorists will be here
Sister in law will come over
I will hopefully be able to go to the hospital to support my husband during and after his surgery
And then the rest of the week-
we will just have to wing it..... and pray for the best!
Get ready for a roller coaster ride.....
I think the deep pounding of my heart in my chest may be a bit of panic attack... seems to happen every time I start to think about next week.... ay yay yah..... but denial won't get me anywhere... I need to plan... plan plan plan
and plan some more... because that's how things will roll, right???
According to plan... but please someone give that memo to my children- especially Ty.
If it's not part of the plan, forget it... these next few weeks- it has to go according to plan- or else !!!! :)
because solo parenting my children- well pretty impossible, especially when you can't leave the house- and you have very severe behaviors with one that well, is really hard and difficult to say the least.
You know how they say you don't really appreciate your spouse for all that they really do do around the house... well, I already know how much Brian does for the family, the kids, for the house, for me...
There is no way this could be done by one parent... and I know we both know that... we really really rely on each other for our sanity, when the other is about to crack, to get things done around the house, and to be the other half that holds the family and this house together... it really is a two person job, and I will desperately miss my partner in crime.... my shoulder to cry on, my person to make me laugh, to call me short, to banter back and forth doing our secret messages and sarcastic humor inside jokes...it's what we do....
and I'll miss that! I'll miss him, and I will worry about him- and I hope I can be there for him during his recovery the way he needs me to be......
I'll just have to the best I can and look forward, not back!
The sound of the blender, cereal being poured, lots of movement in the kitchen.
Then I hear Brian say to Ty, oh Ty I"m still sleeping, can you put that in the kitchen until I wake up?
The boy made a milkshake with peppermint ice cream, milk, cereal (yes I said cereal). Yep, a very interesting way to wake up to the New Year!
I"m feeling a bit worried right now for my little guy. You know how as a mom, or a parent, you KNOW your child
I mean KNOW Them so well
so when one little thing is different or off, it's noticeable (especially a kid on the spectrum where things have to be the same)
Anyway, I made 2014 Chocolate Chip, GF/DF of course, pancakes for brunch (because that's the way things were rolling this morning)
We sat down as a family, enjoyed our pancakes... and Ty, who usually has eaten his first serving before I can even finish serving everyone, stated he was simply done. He didn't want anymore, he was full, and he only had 2.
And this is where you know your kid... only 2... are you kidding me... he's usually begging for more- can't wait, becomes crazy and impatient until he gets more
and he's done after 2?
Then it's dinner time, and he simply doesn't come to the table. He couldn't be bothered with food right now... he was playing a crane driving game on the ipad.
And it's normal for him to not eat what the rest of us eat, and he simply asks for a sandwich.
But not tonight- now I know he did eat 2 potato bars earlier, after he woke up from a nap....
That's typical when he wakes up , it is either 2 potato bars or instant oatmeal.
But he still usually eats dinner no matter what- he may not eat the greatest of foods, especially from the fruits and veggies dept., but he eats food! When you have a kid who literally was starving himself to death- because he just couldn't stand the sights and smells of food- all foods, and was literally wasting away- losing weight so fast- oh and when you are 5 and 7, you not supposed to lose weight-
and yes we did have to remind the doctor's of this... he lost 4 lbs when he was 5 in a matter of 2 1/2 months- and trust me he did not have 4 lbs to lose.. he was, well, just so thin and sickly looking. It broke our heart because there was nothing we could do...
Anyway, so our experiences are - yeah, he's eating- who cares what it is.. he's eating!
So it gets us to the next question
is he getting back up?
Is he in need of a clean out- which of course he is now 8months out from the last clean out- which is record breaking.
It's usually about every 6months or so, and we are going into the 9th month since his last clean out. And this is not a home procedure- it has to be done in the operating room under anesthesia
even with his mickey button in his colon for nightly irrigation, his bowels still get blocked- and it gets blocked up high where it affects well, everything. Reflux increases, vomiting occurs, because he is full way up high so food doesn't even have a chance to get through.
So that's where we are-nine months since the last clean out, Brian going in on Monday, that's 5 days from now to donate a kidney to his big sister. Then his recovery, and Ty is showing signs of being backed up.
I just pray all things can hold off, for about a month.. that would be good!
A month will give Brian some time to heal a little bit, because let me tell you it is more than hard to get him to the hospital for the clean out. And even with all the pre-meds, his ability to struggle is super human, and I'm just physically not able to do it anymore with him- he's gotten to be so big! So, have no idea how things will play out... I wish I had a magic 8 ball, but when he gets backed up, it will just be where he can't wait one more day- it's that urgent!
And that sucks... it's hard, and some prior notice would help me out ALOT!
But for now, one day at a time with Ty, Brian will be going in in 5 days, we'll have our world as we know it turned upside down, and no way to predict how Ty will handle all things that will challenge him to his core.
Unfortunately, he doesn't have a good track record of "tolerating" things well... I guess now is a good time to put away a few breakables I am brave to have out right now! :)
And I just pray that I am wrong and that there is a depth to him that is able to take over in a positive coping manner that helps him more appropriately handle this situation of constant change and routine upset.
That he will help take care of daddy and bring himself to this plane of empathy that he struggles so much with .
I pray we get through this time, that Brian heals and recovers without too much pain and discomfor; that his sister begins to recover and feel better; and that our family will continue to heal and make progress together.
We will continue to experience happy moments, despite the struggles that will come our way.
But it's gonna be scary!
