Friday, August 29, 2014

Isaiah's Spine

The last day of Pam went well; Isaiah and I watched a movie and the time went rather quickly.

When it was all done, Dr. B stopped in to see us and talk more about Isaiah's back.  

I had seen the radiologist's report.  "There is a midthoracic dextrocurvature and lumbar levocurvature.  There is kyphosis at the thoracolumbar junction."

I didn't know what the heck any of that really meant, but I saw the word curvature and could take a guess.  I saw the word kyphosis and pictured a brace, as that's what has caught my attention with other OIers and the word kyphosis was involved.  My heart had been in my throat since seeing the findings and since my brief meeting with Dr B.  

Dr B. knows me too well and knew I was upset.  Upset with the findings that confused me and upset thinking this was all my fault.  I have been pushing Isaiah.  Pushing him to get head control.  Pushing him to sit up.  Pushing. Pushing. Pushing.  Pushing him to do these things helps him develop muscles.  Developing muscles is key to help protect those bones. 

But do you know what you get when you push a spine...when you have it in the sitting position before it's ready....when it has a heavy head, that's so big that it is off the charts, pushing on it?  You get curving.  You get "wedging".

Do you see the lines drawn on the the x-ray?  The bottom vertebrae look great but that mid-lower area is wedging...curving...(ignore the very crooked thing in the picture...that's just the tubing hanging down from Isaiah's port).

We believe one of the problems is the seating I've been using for Isaiah since we came home from the hospital in September of last year.  I thought soft seats were the way to go but 2 of 3 chairs are hammock-like a when Isaiah sits in them, he kind of hunches.

Not good.

He needs a flatter, more stable, surface.

I showed Dr. B. how I have been holding Isaiah to practice head control.  We agreed that I need to grow a third arm in order to support Isaiah's lower back because he again hunches.

We talked about trying to give Isaiah time to let this fix itself naturally...meaning without a brace...If I stop putting him up all the time, and give him more time laying to play, he'll get there eventually.  Tummy time is important and something I've avoided because Isaiah always gets his arm stuck.

Now I am working on making tummy time possible.

Water therapy continues and that will help Isaiah develop those important, bone-protecting, muscles.

For now, when he does sit up, we put Isaiah in places that we know he is fully supported...

And the helmet? Is only happening when Isaiah's laying down.

His PT and I are afraid that the extra weight, although only a few ounces, isn't helping his spine, so it's best not to push it.

Luckily we have an awesome PT who is helping me review Isaiah's seating and giving Isaiah proper lumbar support.  Backing off kind of goes against some OI theories of keeping OIers moving...but we are keeping him moving, just in a horizontal position instead of vertical...for now.  Isaiah needs time and we are giving it to him.

Do you know the amazingly positive thing that we saw in the x-ray? When comparing it to his x-ray from when he was first born?

We saw brighter bones.  They aren't as "clear" as they were a year ago.  That shows that his "Pam treatments" (pamidronate treatments) are working...

and that is a wonderful thing.

Wednesday, August 27, 2014

Pam Party

This August Pam party has been a bit quieter. Without Dave and our buddy Silas and his family, I think we've been twiddling our thumbs more than normal.

For the most part, everything has gone well. I didn't cry when the nurse accessed Isaiah's port, and I got us all moved in to the Ronald McDonald house all by myself on Monday night! (That last part was quite the show. I should have taken a picture but imagine me pushing Isaiah in his stroller and pulling a luggage cart FULL of stuff- clothes, his breathing machine, suction, toys, play pen, food, and more.  At 6:00 at night. It was a good time.)

Nap time on our last day at the McDonald House. 

I've done a ton of complaining and yet I still have gotten things accomplished.  Gavin's wonderful family has been there to watch Isaiah when I need a quick bathroom break and pack up the car, but other than those few moments, Isaiah and I have been together 24/7 and loving the bonding time. 

We've had fun watching the boys play and talk with each other, and Isaiah has also loved Gavin's big sister.

From a medical standpoint, everything is going ok. ...yep, just ok. Pam has been flowing and you can tell Isaiah is already feeling good from it which is great. We had X-rays of Isaiah's spine taken yesterday before Pam started, to compare to last year's...and that has me worried, but not educated enough to share too much yet. I can tell you there is significant curving to Isaiah's spine already, and I was recommended to lay off of pushing Isaiah to get head/torso control any time soon.  I think I may be pushing him too hard. :(. His muscles aren't strong enough to support it and the result is a curving spine.  :( :( 

We had a helmet appointment on Tuesday as well.  (I bet you're thinking, he still has the helmet? We never see it!  Helmet-mom fail. Sort of.) I tried multiple times to get him back in it since his last apportionment but he was miserable every time. I honestly went in to this appointment ready to say goodbye, I give up.....turns out that the helmet needed some major tweeking and they took out two layers. It's so much better now!  It has to stay off for Pam (bc it raises his temperature, which alarms the nurses into thinking Pam is causing a fever) but I will be getting him back into it tomorrow!  

I had been planning to stay at the McDonald house until tomorrow morning, but i am itching to get back home, so we'll be headed back after treatment today.  

We miss daddy, our beds, and Carl Marl. :).  We'll catch you on Friday. :)

Monday, August 25, 2014

Isaiah's First Birthday Party

Yesterday we received the photo cd of Isaiah's birthday party pictures from the wonderful photographer, Rosie, from Capturing Time Photography.

Um, did I tell you we had a photographer at the party?

My friend has known her for some time, and Rosie takes phenomenal pictures of her 3 girls.  They were planning to do a beach day of photos and I was bummed we couldn't make it and jokingly/seriously asked my friend what Rosie was doing on the day of the party.  Well she asked her and Rosie was free so she came!

And I'm so grateful.  I went the entire party without whipping out my phone for photos.  (And we know I tend to do that.  Constantly.)

So this post will be picture heavy.  While Isaiah and I are driving to DuPont for Pam (and cross your fingers a room opens up for us at the McDonald House for us or we'll be driving back and forth from Lancaster), you can have fun checking out some pictures.

First, the decorations.  I seriously started making these in June.  (Yes, I am a nerd.)
 Isaiah's First Year:

 Mickey ballon wreath!
 Easter Mickey, birthday-fied!
 My pride and joy, the hanging Mickey heads.

Isaiah had a wonderful day.  He was full of smiles for most of it.

 Dave was stationed on the deck grilling away...he had to feed eighty people, after all.


Isaiah's BFF Gavin and his family even came! (Gavin was like a little celebrity.)
OI Buddies for life!

The only time Isaiah got really grumpy was during his cake time.  He was due for his bottle and nap, and I was hopeful that he'd go right to town on his cake since he was hungry (his cake that I made because only one bakery was willing to take it on and was charging $70...psh, I got creative.)....I was mistaken.  He made it through everyone singing to him...
 Even some pictures...

And then lost his mind.

It's ok, we all know he attacked that Mickey hat cake on his actual birthday. ;)

It was an amazing day.  The weather was perfect.  The company was fantastic.  And we are oh so grateful....for your support, generosity, and most especially your love.

Thank you to everyone for helping us celebrate Isaiah's first birthday...whether you were there in person or in spirit, thank you.

Friday, August 22, 2014

Almost Pam Time

Isaiah and I have enjoyed our quiet week together.

We did a little consignment shopping...

Seriously, I need a onesie intervention, but could the message on this one be any cuter?

We explored a new texture in a bag...

I chose to introduce Isaiah to shaving cream in a ziplock bag since the shaving cream isn't edible, but it's so much fun to play with.  (Always monitor your kiddo when handing them a bag of anything.)

He had minutes of fun.  He's a baby, with a baby attention span. ;-)

We've built towers with foam blocks (well, I built, Godzilla Isaiah knocked them down. and continued practicing sitting UP and trying to work on that head control.

Next week Isaiah and I will head to the McDonald House by ourselves, aka without Dave, for his next Pamidronate treatment at DuPont (since it's for 3-4 hours for three days, it's easiest to stay near the hospital).  I'll be bringing a number of brown bags to hyperventilate into....I'm just kidding... I'm nervous but it will be ok.  Dave will be "working from home"...yes, I am sure he'll be working, but I predict he'll also be prepping for his fantasy football crap season and will be happy to be wife/child-free.  I picture him like Tom Cruise in Risky Business, running around talking to himself about football and sliding around the house in his underwear.

Visualizing it?  You're welcome.

Wednesday, August 20, 2014

Table Foods/More Outside Time

We're continuing to work on table foods.  One day Isaiah steals my steamed green beans from my plate and feeds them to himself and the next day....

We have a battle of the wills that lasts a half hour.  

After that half hour, I cleared the green beans, held him for a moment to calm him down, and fed him his pureed carrots with some rice.  Obviously that's what he wanted...

I'm such a sucker. 

We've been working on sipping from a straw as well.  We found a great cup at Toys R Us that was recommended by an OT on her blog; you can squeeze it and the water will go into his mouth.  Our OT had recommended getting some juice boxes (so that we can squeeze it in) but Isaiah likes water and I'd prefer to leave it at that and milk.  I know he is already too much like me with that sweet tooth and I'd rather not introduce him to sugar through liquid form.

So far, we're struggling.  He's got the pucker down...

but he just doesn't understand the sucking part.  I was told to model and really exaggerate, so I make all kinds of noise when I'm sucking the straw, a big gulp, and then "ahhhh".  He is so mesmerized when I model.  Lately, he's been mimicking me...except instead of sucking in, he's blowing out to mimic my sucking sound and then going "ahhhhhhhhhhhhhhhhhh".

At least he has the ending right.

He'll get it...I know it'll just come to him at some point and I look forward to that moment.

We've been spending lots more time outside.  We just received this awesome toy from Dave's aunt and uncle; they had it at their house for their grandkids but the boys are getting big and know Isaiah could get a few years enjoyment out of it.  Isaiah loves the swing!  

I have a belt coming from Little Tykes so we will be swinging him by weeks-end.  Oh, and if our family notices it looks a bit different, you know I'm addicting to using spray paint, right?  ;-)  Between that and the red duct tape we had on hand, I had some fun. :)

And we're continuing our outdoor fun, soaking up this last bit of summer.

Isaiah's making his PT proud with all of his reaching.

We're [happily] having a quiet week, getting ready for Pam, and enjoying life.  We hope you're enjoying your week too! :)

Monday, August 18, 2014

Our DuPont Trip

On Friday, we had an appointment with Isaiah's pulmonary doctor (that's the doctor that works with us on Isaiah's breathing).

While waiting to see the doctor, we realized what day it was; Isaiah was transferred to DuPont from Jefferson one year ago exactly.  Like, to the minute, people. 

 I remember because we had been told before we had Isaiah that no one would be able to ride in the ambulance with Isaiah to DuPont, so we planned to discharge as soon as he left Jeff so that he had to time to be processed into DuPont...but well, on the day of the transport, the EMT looked at Dave and I and asked us which one was coming with them.  

Oh well, it worked out.  He got there safe and sound...but you can bet that he will never ever ever ever go on a ride like that by himself again. ;-)

Anyways, back to the appointment...

Isaiah is doing well.  They want to transition him from the cannula [that he had been using for his c-pap at night] to a mask.  The switch is because Isaiah turned one, and just like that, learned how to rip the darn thing off his his face.  In his sleep.  He hates it.  So, we need to talk with the oxygen company to get that going as the mask the doctor gave us doesn't match up with the cpap machine we have and all it does is beep beep beep about a circuit leak. 

His doctor recommended Isaiah continue his nebulizer treatment of Pulmacort, as it is full of benefits and "no negatives".  I was hoping to end it so we could get a real night time routine going.  But oh well..maybe in the spring.  The doctor thinks it's best since we're coming up on winter and we want to keep Isaiah's respiratory system as strong as possible.  

Annoyingly, I forgot to ask about the sleep studies!  The only mention of those really was that, like we already knew, he has more in his future.  (Hey Dave, not it.)  The older he gets, the harder they will be.  The next one will likely be December or January.  Hopefully by then he will be strong enough to sleep without the cpap anymore.

The doctor's Fellow took a look at Isaiah and she believes he could have a canine tooth popping through soon in the top.  It's definitely possible but I'm not placing any bets on it.  Also, she and his doctor took a look in his right ear for me because it's been draining some dried blood lately.  Turns out all of Isaiah's digging in that ear caused a scratch.  I've since cut his nail lower than ever before, threatened him with mittens, and put cotton in his ear for a few days.  They said his digging is another sign of teething, again we shall see.  ;-)

I tried to get him back in his helmet this weekend, only to be met with hysterics, and I'm a sucker for them.  We'll be trying again today since he's in better humor.

We're looking forward to a quiet week this week and hope the same for you. :)

Friday, August 15, 2014

Outdoor Time

We've been laying low, relaxing, and spending so much time outdoors because the weather has been amazing!

Isaiah has had a few grumpy spells thanks to those 12 month vaccines but he's getting better.  

And well, when he's sore, he get a little medicine and lots of cuddles and raspberries (ps, he gave me raspberries back!! ha!).

But mostly, we've enjoyed our time outside.  

I updated the Adaptations section of the blog...I finally got around to cutting some pool noodles as supports in Isaiah's stroller.  They make a world of difference for his legs!  His PT will be happy. :)

(Maybe I'll get around to cuter wraps at some point.)

We have our appointment with Isaiah's pulmonary team today.  Here's hoping he frees us of the daily nebulizer treatments and has lots of good things to say...because we're feeling very good about where Isaiah is in terms of his breathing.  Maybe we'll get the official write ups of his sleep studies so I can share them with you?  That'll be nice. 

Here's hoping you're getting lots of outdoor time.  Happy weekend!