Day Nine: Between Siblings

Day Nine of the "31 For 21 Challenge" Down Syndrome Awareness

There are times that I truly wonder if my children are just going to fight with each other forever.  Especially, the girls.  For Heaven's Sake they were just fighting over who was turning off the light in their room the other night.  And if you listen closely, you can here them fussing at each other over who is using which sink in the bathroom...I mean there are two sinks for the Love of Pete!  Can't we just pick the sink that is not in use and have at it?  No, apparently, we cannot.  For whatever reason they each have the perfect sink to use and no other sink will do.  And it's not that they want this same sink every time they go in there, nope, the sink preference changes.  I mean how are you supposed to know who is where and who wants what when they change preferences.  When I want a sink I relegate them into the same sink and quietly chuckle inside as I see them struggle to figure out how to share the sink or else get domination without mom hearing or seeing any fighting. Ah good times indeed!

They fight about where they sit in the car - middle, or window?  Front seat or back.  And no one wants to ride all the way in the third row until we have to use the third row, then it's only okay if one of them wants back there, then they will fight over who actually sits back there.  They pick at each other over who is singing what and dance moves....seriously, I kid you not. If one touches the other in the midst of dance moves...prepare yourself for an explosion...but you have to wait until the song is over because if it is an easy song to sing too, then they won't interrupt the singing to explode...when the song is over, then the fussing commences.

Sometimes when the yelling and tears start I try to redirect, sometimes I intercede, and other times...I sit back and let it run its course.  Like tonight, I let them fuss at each other until the tears came, which sounds bad, but honestly, anything can bring a tear these days and in my defense, it is virtually impossible to predict the water works.  I mean really, one minute everything is Fine and they're singing along to "Shake It Off" and then some look passes between them and now they both are fussing and one is crying and I haven't even realized the song is over yet!  I'm still watching Bradley tapping his lap and clapping his hands because he loves the beat of that song.

Do they fight with their brother?  Not really fight, more like disagree.  They get tired of trying to play with him, they have their own ideas about what and how they should play, but Bradley has his own agenda, they just don't want to listen.  Arguing with Bradley is rough though, he starts waving arms, pulling hair, and sometimes biting...though that seems to be easing away again now, thank God!  But still, he can make it very uncomfortable to not play as he wants to play...I'm not saying he's a Mafia Don, but there are times he dresses like Tony Soprano for a reason!  ;-)

For the most part, the girls fight over him.  They want his attention and will compete for it, like he's the grand prize or something.  And maybe he is in a way.  For them, getting his affection is the coolest thing ever and being connected to him is so important.  I always worried that I would somehow set them up in competition with each other and they would hate each other because of it.  I think I might have by default when I delivered Bradley.  But it turns out it wasn't created by me, it was created by Bradley, and he isn't even trying either, he's just being.  But they love to make this kid laugh, and he has these big belly laughs, so I mean, who wouldn't?

So my hope is that they will continue to love their brother and want to work to remain as close to him as they can throughout his life,  And somewhere in there, I want them to love each other.  That's probably my biggest wish for the three of them, I believe that as they get older they will see each other as allies and not worry so much about the petty nonsensical fussing that they do now in an attempt to drive their mother bonkers.    They are going to need each other and their brother is going to need them.  They will have plenty of tears, a lot caused by each other, more caused by life itself, so they will have to learn to lean on each other.  They also better find a way to keep laughter in their lives, because if they aren't making each other laugh on down the road, life will be even tougher.  And they are going to need their brother, the lessons and the love that he is going to bring them will enrich their lives and help them to grow into the people they want to be.  At least I hope so!  For now, I figure that I will just keep laughing with them whenever I can and hoping that at some point the fighting will stop or if it doesn't stop, maybe subside and they will feel the stronger love at the base of everything.

Day 8 - Hospital Free???

Day 8: The "31 For 21 Challenge" for Down Syndrome Awareness Month.

A Day without Balboa?  Now that's a Challenge!

Bradley had some down time today, he seems to be healing up pretty well from the scope, but I think his throat is still sore.  I can tell by some whining in the classroom with his teacher.  We might have kept him home from "school" except he only spends thirty minutes there AND, when we said let's go to school his eyes lit up and he got very excited.  Then he tried to say "school."  That says to us, I feel well enough to go, so we took him in.  If he's going to say it, we'll take it!  Just don't tell the girls or the next word he'll be trying to say will be Disneyland and that's out of our budget for now.

As is his usual method, he brought along new signs and words to use at the hospital yesterday.  I mentioned him saying "Hi" which was just amazing!  But when the waving and playing stopped, he started to get agitated, and we started to see some behaviors coming out.  So I told him with words and signs, "no hit" and "nice hands".  In return, he signed back "nice hands" and sat down and settled down, for about ten seconds.  It was one of those reactive moments followed by silence.  I reacted with praise and then Eric and I just looked at each other.  We weren't so much shocked by the good behavior; we were, or at least I, was shocked that he listened and repeated the signs back to me. Stunning revelation that!

These come on the heels of his attempting "stop"  the day before.  Bradley's "stop" is the cutest thing ever and really destroys the lesson I was giving when he turns around and tried to repeat me.  He tries to say it as he signs it and verbally we get "op".  What he started at home, I was getting more of it at the hospital.  The hardest ones for us was the sentence, "I done!" and his continual requests for milk and water because he could have neither one.  All we could say to that is: I know, I'm sorry, not yet.  Those requests suck, but the delivery is pretty adorable.  He reaches up to cup your face, then turns your head ever so gently to make sure he has your attention and eye contact, then he signs milk, though lately only his little pinky finger has any movement.  He does the same for water.  This especially happens if he has already asked but no one complied, this is my preferred method of letting me know what he needs, others include: hitting, yelling, and biting and not necessarily in that order.  This method tells me he is trying to communicate with me to help me understand his needs.  And he is showing great patience in the fact that I am so slow.  :-).  I also think this shows some reckless abandon on my part.  He may be gently turning my head but he is just as liable to pinch me when he reaches for  my cheeks; he's mostly out of that stage for all except with Daddy, so it's less likely - but with Bradley, anything is possible.

To end on a last positive note: turns out my guy loves Swedish pancakes!  He ate most of mine this morning.  But remember, they put a couple probes down there yesterday, so even though there wasn't meant to be any stretching,....perhaps there might have been just a bit.  Either way, he ate more than I did, and it was AWESOME!!!    Want to know the downside???  Yeah, um...no clue on how to make Swedish pancakes!  Google here I come!!!  :-).  Oh, and he ate salad last night too.  :-).   Saw the Space Station  AND ate salad last night, THEN Swedish pancakes.  Talk about ending your night on an up-swing!  It was like watching the Royals win all over again, I mean it even put a little damper on the Cardinals win, but just a little.

What are we going to conquer tomorrow Bradley???  A-B-Cs or 1-2-3s...  You can now take your shirt off so fast and so often - you're driving me crazy...but maybe tomorrow the pants go, or the shirt comes back on???  Endless possibilities!!!  Amazing what can happen on a day when we don't have to spend it at a hospital!  :-).

Have a great night, talk to you tomorrow!

Day Seven: A Brief Bradley Update

Here we go Day Seven!

The EGD surgical scope went well for Bradley.  We got him checked in and then had to hang out until they finally took him back.  He was excited by his new blue pajamas, but that wore off as all the nurses and corpsman paraded through our curtained area.  Initially. he waved and once said clear as a bell, "Hi." As he waved.  My what a beautiful voice he has!  He would say it again but in his usual whisper.  After that he wanted in his stroller so we could go "bye-bye" and proceeded to wave and say "bye-bye."  When we didn't load him up and go he got very agitated with us.  We had to wrestle pretty hard to keep him on his bed and in the pre-op room in the first place.  We saw a familiar face or two, Balboa does employee Civilian nurses, so there was one there that remembered him, and us.  It was kind of nice.

Anyway, his surgeon is more than just a doc now.  He's spoken with us so many times, we've discussed and brainstormed over the years and he even was calling us from his own cell over the long Holiday when Bradley was in so much trouble with his first Hiatal Hernia.  Strange how you can get close to people.  We have with him. 

But then, that's the key with Bradley isn't it?  It's not that he sticks out like a sore thumb by any means, more like in a field of roses he's a lily.  He just is a bit different from others and that makes him stick in a person's mind.  He's pretty cute, and his personality is quite engaging as well, so he's little, but makes a deep mark on people's lives.  He matters to a lot of people.  There are a few docs that move him into the realm of only a patient and forget about him once he's out of the office, and that's okay.  I don't need him to be everything to anybody but his Dad and I.  My only requirement is that he is everything to each doctor for the fifteen minutes of an appointment, for some those are double in length, but the correlation is that to some he is that everything, and fifteen minutes isn't enough.  For some, they don't need more medical time, they just want a few more minutes of Bradley.  Those are the docs that fall into the "favorites!"  They're the special ones and they come to mean a great deal to us, and they come to be a part of our Bradley Family.  We have a special Family that includes Bradley fans, friends, docs that just love this little guy.  It is ever growing, and for that we are simply, grateful and humbled by it. 

So back to the update, the good news is that this time there is no structural issue.  According to his surgeon, we don't need to see him again, accept to come by and say Hi.  :-)  The bad news, we aren't sure if any medicine can help.  Those are answers we have to wait a little longer for, biopsy results and assessments to come.  But all of that is for another day.  For now it has been a very long day and with Bradley sleeping almost peacefully, I'm headed off to my own bed. 

Night all!  Happy Tuesday.  Hug someone with a little extra something that makes them just a bit different...you're life will be better for the connection! 

Day Six: Avoiding the Unavoidable

Keeping Monday Busy 

 

Tomorrow is coming on us fast.  I can’t keep it at bay, and yet a part of me wishes it were over already. Of all his surgical procedures, this one is not that big of a deal.  The surgeon will take a scope and cruise down Bradley’s Esophagus and take a look at everything.  He’ll take it down into his stomach and turn around to look back up.  Along the way he will take a couple of biopsies in order to check for Celiac Disease.  Bradly has a weak Digestive system, and with someone taking a scope in there to look, it’s irresponsible to not take biopsies in order to cut down on future anesthetized procedures.  Besides, this is the test that they do in order to test for Celiac, IBS, and Crohn’s Disease…I say, check him while you’ve got him.  So I asked him too, he said they probably could he would talk to his GI to see how many slides she wanted.  We have a Case Manager at Balboa now, not sure why she wasn’t called in right away, we thought she was being brought in back in August with the first Peds GI we saw, but that request didn’t go through and it took a visit with the back-up Doctor to get it going because she thought it would be good idea.  Anyway, she’s trying to get Dental to mosey over and take a peek in his mouth while he is knocked out too.  Don’t know if that will happen, but we sure appreciate the effort.  And we aren’t too worried, we haven’t see the ENT yet, but we are pretty sure that the tubes in Bradley’s ears are not working well, or are out, or something…and will probably have to be redone soon, so more than likely Dental and ENT will collaborate then.  Always another opportunity will arise, oh yeah!  Grumble, grumble… 

I’ve managed to not freak out about the ramifications of this test and the results it will bring all day. I’ve worked very hard to keep my head wrapped around other things.  I have focused on my girls completely.  Sydney is coming off a mild concussion thanks to a dance with a pole at school last week; so we had a lot of catch up today.  We also had to stop in at school because while her little friend was incredibly sweet to grab all her things and bring her backpack to the office, she didn’t realize that Sydney’s water bottle was upside down and not properly closed; therefore and thusly, soaking her school IPad.  Let the good times roll!  When it rains it pours? Or at least it poured out of that stupid things case like rain, that’s for sure.  So you know, how behind can she get, it’s just an IPad, oh wait…everything is electronically taught now…curse you Technology!  Sigh… Oh well, is what it is, and like we told Sydney, accidents happen and your friend was anxious about you and to help you, we’ll take that over an IPad any day – this is why we have insurance on it!  So she’s at least back at school and getting a handle on the catch-up for her schoolwork which makes her feel much, much better.  The Yellowing bruise on her head, not so much, today it was not a favorite color, nor does it match any of her clothes…tomorrow…eh, who knows, just might! ;-)

We had the lovely distraction of watching Madison in her third Volleyball match, and the coach keeps playing her!  So exciting for her and for us!! J Her team is quite good; for truth, they have played three matches and have won each in two games.  Same with the 8^th grade team, but they have more attitude about it.  Madison’s team is a bunch of really nice girls.  The ones that played Club well, help teach the others drills and give tips they’ve learned.  The ones that don’t play Club well, know it and are willing to be nice to the one or two girls that don’t play Club at all…cause those two are just as good as they are.  And surprisingly, there is a lot of Grace.  The girl that Madison subs in for is the best on the team, and she smiles and steps off the court, watches and is kind to mine.  I take it with gratitude.  Tonight, Madison had a big night; she passed a serve, and then spiked the ball.  Sweet!  Being as this is 7th grade, the key is in the serving, a good server can put the game away because the other team doesn’t have the passing skill to set up the hitters.  The opposing team, not great on the passing skills, our girls are pretty good.  Madison went for a couple really good serves that she couldn’t get, but a couple she did and she even chased down a few balls that she was able to pop up, and a couple she didn’t – but hit the floor trying.  She tried to keep the smile off her face; but geesh, she passed and spiked, that smile will last all week long!  Mine?  Oh very proud of her, very happy for her.  Loved seeing the coach call her to the sideline after her hit to celebrate with their team handshake.  After the game, really pleased to have him smile at us and respond to Eric’s “She’ll be smiling all week after that pass and spike!” with “How could I not have her on my team, she saves me.”  Her passion, that light in her, it can definitely do that. 

We topped off the night with an awesome, albeit brief viewing of the Space Station, this time everybody but Bradley got to see it; sadly he had already fallen asleep.  Maybe tomorrow night, right over head at 7:03 pm…set your clocks; I’ve set my alarm because my kids love this!  We have to take advantage of the next few available visibility days, my app just shows possible visibility for tomorrow, the 9^th and the 11^th, not sure when we can see it again after that, totally new at this, but loving it all the same. 

Girls had a great day; Bradley did great with his OT at the house today and his teacher at his school this afternoon, so he had a great day too.  Here’s hoping that tomorrow yields a good day for him with a hopeful prognosis.   Other than that, the girls need to have a great day at school and they both need to avoid accidents of any kind!    

Happy Monday! 

Day Five: Lights in the Sky

Day Five of the "31 for 21 Blog Challenge" for Down syndrome Awareness Month! 

What is the coolest way to end the night before bedtime?  My brother called to let me know that if I rushed my girls outside, we could see the International Space Station for another two minutes before it disappeared.  I guess I’ve been living under a rock, because although I knew there was a Space Station and have followed the news about it for almost fourteen years…I really had no idea that if you looked up at the right time, you could actually see it zooming through the sky.  So he called me, I said “Got it!” And then I ran down the hall after hanging up on him and yelled for the girls to come on and follow me.  I guess because I was grinning, they didn’t panic when I hollered at them; instead, they jumped up and ran after me. 

We ran outside and sure enough, bright as day, there she was: a bright, beautiful, shining light zooming across the night sky.  My girls were so excited.  Madison laughed and talked about how pretty it was, how exciting.  Sydney was a little quiet for thirty seconds, but then she recovered when I told her that was where she would be stopping off before heading to the other side of the Milky Way.  Then she wanted to know all about it.  Are there any people up there?  How long do they stay?  And on and on, just bubbling over, just beautiful! 

I didn’t realize till later that the Space Station is only scheduled through 2020.  I wonder what happens to it then.  In six years, Sydney will only be sixteen years old, her space craft will be what I hope is a really safe car that transports her from one planet to another, aka…school and home, maybe sports practice and a job.  Madison will be eighteen, first year of College, because Mom won’t budge on that one.  I look at these little girls that are running through the house rushing to see a Space Station zoom across the sky, and I try to imagine what it will be like to have two young women in our house.  Will they still find excitement in running through the house to see the Space Station zoom across the sky its last time?  Or will they be too busy with boys, school, and the excitement of their lives to care?  You notice I said Boys first right?  Boys have cooties and are evil…only Sydney keeps her distance, though she already knows that’s not true.  Luckily, she still finds kissing gross.  Madison is beginning to notice the boys, and they’re starting to look back too.  Thank goodness, she is not as great at noticing, which is a relief!  A perfect example, the girls play basketball on Sunday mornings, and she and her sister are two of the three girls in a group with twenty other boys.  My girl is so intent on Basketball, that she hasn’t taken notice of at least two of the boys that are taking notice of her.  Let’s hope it stays that way! 

For now, I just downloaded the ISS Watch app on my phone with alarms set to make sure I know when we have the best chance to see it go zooming across the sky.  Because right now; my little girls, at ten and twelve, still find it exciting to hang out with Mom and look at the sky, I know it won’t last forever, the Space Station has the same time constraints that childhood suffers, but until the time comes…every moment, every chance, every way I can make a connection with them that will live in their memories and hearts…that’s my plan. 

Day Four - Puzzles of Puzzles

Day Four of the "31 For 21 Blog Challenge" 

I feel like I've moved Bradley under microscope.  It's as if I believe I can unwrap his puzzle and somehow make sense of what is happening with him.  Poor kid, he can't sniffle without my head coming up and I swear my ears are perking...perhaps you can picture a dog getting the scent of something impossible not to chase...yeah, I probably look like that.  I'm back to counting every single calorie and spend more time than I choose to admit here or anywhere, trying to decide approximately how many calories he got out of that tenth of a tenth of a graham cracker he ate.  His last Neurologist suggested he take B6 to help with his mood because his anti-seizure med can make him cranky.  Yeah!!!  Guess what, she was right on that one!  Cranky is a mild term for what we get from Bradley.  So I am now constantly trying to calculate how much Vitamin Water will help him get all he needs to hydrate plus get the suggested 50mg of the B6 she suggested.  Although I have to say, that is a science I am determined to perfect, because this cranky kid is a stranger to me and I would really like to return to that little boy I had before March 12, 2014.  Just selfish I guess. 

And it gets worse, I find myself staring at his ears now...constantly wondering why he just rubbed that one on the left...and then ten minutes later he goes after the one on the right.  I know that in theory he is not truly messing with me, I mean he's almost five...he really isn't that savvy that he can mess with me by playing with his ears and my mind.  That being said, I think of that irritability issue from his anti-seizure medicine and have to wonder if he is feeling the effects of that and it makes him mess with his ears or if he still has an ear infection.  He has suffered from four of them since our move in August.  He likes to get them while he is on antibiotics as well; apparently, the sheer challenge of defeating an antibiotic is more than he can pass up.  So far, he is winning in a purely I am beating the antibiotic which is not curing the pain in my ear kind of backward way...I guess you could call it a backward victory if you can use the word victory at all.   I like to think of it as completely hard headed and pretty near as stubborn as one can get, but hey...my boy is nothing if not stubborn.  I want to say he gets that from his Daddy, but I am also pretty sure he gets it from most of his grandparents, and maybe a pinch from me. :-)

All humor aside, the resistance to antibiotics is a constant concern.  We wait till the last possible moment to introduce an antibiotic, start with the mildest and then quickly run the ladder to these ones that they start using terms like Class three or something... to which my head starts jumping in with stupid stuff like: "Sophomore Drugs? Really?"  Or, "Isn't that JV, maybe we could try the Varsity to start with?"  Clearly, my knowledge in this area is quite lacking to the extent that I could put what I know through the eye of a needle and still have room for thread.  The good news here, I never say these things out loud.  Don't get me wrong, plenty of other stupid stuff jumps out before I can stop myself, like when Bradley's pediatrician looked at me and said: "How's his hearing?"  I replied, "Selective."  Well, he did ask and I do believe in honesty.  Then later he asked me if I had his emails, I replied, "No, I always figured you'd be afraid I'd use them."  Followed by that little grin, the one that says, did I just say that out loud?  Ah, by the little grin I am getting back I'm guessing yes.  Look out world, someday I will be old and the tiny filter that never works on my mouth will fall off completely and then oh boy, is all I'm going to say for now! ;-) 

Proof, Bradley is driving me around the bend!  Give a mom with Dyscalculia ( I get numbers backwards - you might want to write any numbers you have for me, just a warning), the job to keep track of all kinds of caloric numbers and the odds are good she will be sent quickly around the bend. But even from my place on this Express, I am tracking and calculating, just trying to keep his weight at 35 pounds and not letting it drop.  I'm not sure how to put all the pieces in place as yet, I may never figure it out; but I will keep plugging away until I can try to make some sense out of that which makes no sense.  I figure if I keep taking in all the doctors know, and I put that all together on paper and in my head - someday, I might see an answer.  I swear they are giving me the tools to do it, I think I just need them all in one place at one time to brainstorm, with us.  Talking without us in the room is important and necessary...but keeping things clear about Bradley requires a parent in the room to set the record straight.    

I may not like the outcomes, but it's time to start the Bradley Meetings.  We all need to be on the same page and we need to do this quickly! 

Day Three Challenging Bradley Update

If only there were easy answers.  I can't even imagine what that would be like.  Turns out, it would be even greater if there were answers.  Any answers would work at this point.  It's exhausting living in this skin,  the simplest things become work and the work becomes heavy.  A simple trip to the park is quite an endeavor.  We have to have the backpack, because it carries Bradley's spare button, his tube, and his vent cup and supplies.  We keep diapers, wipes and extra clothes. Add to that, sterilized water for flushing his button.  Lastly, I have all of his MRI's and all imaging on DVDs.  Sometimes his Diazepam is in there, but usually I carry that in my tote bag.  That one I have to have available at hand if necessary, I also carry his IPAD, in that tote too.  Bradley can get overwhelmed by crowds and noise, his IPAD can help calm his world down.  Sometimes Bradley won't eat when we are out, so his IPAD keeps him occupied so we can eat.  And it allows Bradley to hide a bit and still eat.  It's a busy IPAD.  And surprisingly heavy once you put it an a heavy duty survivor case so it can survive Bradley!  ;-).

Going to a hospital appointment has become an all day affair.  You have to carry along extra of everything, especially the food side.  He is just as likely to need four cans of Pediasure at the hospital as he is to want nothing.  Or he'll decide he's not in the mood for his beloved Lemon pudding and the one day I don't bring it...good night!  Let the panic ensue, mine not his!  Well, at least a little bit on his part.   We used to have meals where he wanted everything on my plate, now I'm ecstatic if he eats Lemon Pudding,  diced  peaches and a Fiber One Lemon Bar...on a great day, he'll go for two of these.  And then some days, he'll astound me and jump into old favorites or eat salad or devour the turkey off my sandwich.  I really don't mind.  :-). Those are the best days, watching him trying it all, enjoying it all!  Those days I see him bite, I see a dimpling of his cheek and I know he's chewing.  And I see all these years of hard work, the tears from frustration and fear that he and I shared, I see the potential for a life without a g-tube.  Too bad the docs don't see the same future.  Bradley's had a Esophageal Motility Study that told us his Esophagus spasms...  We knew that.  And then Tuesday he had an Upper GI that told us there's something wrong in there and a surgeon has to do an EGD, there's thirty letters in this term so I'll just tell you it's a scope of his Esophagus (E), Gastro (G), and Duodenal (D) - get the idea?  A surgeon has to do it, and the one that did Bradley's original wrap...he's doing this one too.  I guess theoretically, you can go home again.

And so we are preparing for another surgical scope on Bradley, we have to consider the potential that the results will be life changing.  If the test tells us what I am fairly certain we will be told, the surgeon will not be able, or willing, to try to correct the problem.  That reads for Bradley to have an increase in tube feeding and a decrease in oral feeds.  We are greatly concerned that Bradley's Fundoplication is slipping and sliding up and down on his Esophagus, and would explain why sometimes he chokes on his food.  Overall, this does not bode well for him.  There are only so many times that a Fundoplication wrap can be taken apart and re-wrapped...Bradley is on number three...with a second try only having a 75% chance of working well, a third and the odds drop to 50%, and well....the world gets dim from there. 

So this is the Challenge that we are facing here in October.  We're fighting the same fight on a new battlefield and we lack any of the secure ground we thought we knew.  Bradley has always had his challenges, but he's still a pretty awesome kid.  He's a fighter and we are so proud of how far he has come, which means we are loathe to have him start sliding backwards in any area.  But this month, this is a game changing month for him...and I guess I am dragging you all along for the ride.