Pam + OI Clinic

Right before Isaiah officially turned 3 years old, we had a quick trip to duPont/Nemours for Isaiah's pamidronate treatment.

We made our way to the Ronald McDonald House on Sunday, since we were expecting to be at the hospital bright and early for treatment.  We actually spent a lot of time enjoying what the McDonald House has to offer this go round....usually we stick to our room, dinner, and the play rooms.  This time we checked out the library, did a craft one night, visited with some therapy dogs, celebrated Isaiah's birthday after the monthly meeting....we made lots of fun memories this trip!

Isaiah decided to torture us party all night Monday night (from about midnight to 4am)....and yet was still in ok humor for his first day of pam treatment....it was a long morning (especially for Dave and I) but was made so much fun by getting to hang with our pal Gavin, his family, and our new friend Maddie and her parents.  She was so sweet with Isaiah! After pam was done for the first day, we headed to OI Clinic for x-rays and discussions with Isaiah's geneticist, his orthopedic surgeon, the PT we've worked with since Isaiah left the NICU, and more. 

Isaiah fell asleep in my arms for some of the discussions, but ended up waking and showing off how he can scoot when laying on his back and how he can sit up on his own.  His x-rays also did some showing off for him....his bones look beautiful.  They are looking better than ever before.  Guys, his body is looking ready for rods!!!! Last year, his bones just weren't ready; if rods would have been surgically placed in his bones, they would have likely migrated right out, which would have meant more surgeries.  But now, his bones are longer, stronger, and should be able to hold those rods...and he is showing interest in getting moving, which is something he wasn't showing last year.  

We're expecting to schedule his first rodding surgery (his orthopedic surgeon does 2 bones at once, so it'll be a few surgeries over the years) for the spring, unless Isaiah fractures badly before then.  If he does, it'll be done asap.  Those little leggies will be straight before we know it!  Until then, we're going to continue to push Isaiah to develop muscles in his legs by having him weight-bearing in his new gait trainer (that finally came!) and continue to give him incentives to get sliding and scooting on the floor.  His arms have really developed some beautiful muscle thanks to pushing himself in his chairs, so if we can help develop his leg muscles?  

The rest of our trip went very smoothly and quickly....Isaiah had an adorable therapy dog and his owner come and visit us during day 2 of pam and Isaiah just loved petting him.

I spy Gavin! :)

He thankfully napped and slept well Tuesday into Wednesday which helped all three of us really enjoy the rest of the trip...

Sitting next to the August birthday cake! Isaiah was the only birthday kid there for the month of August....and he sure enjoyed that cake!

Working on a craft after dinner on Tuesday at RMH

And now we are switched to the 12 week dosage schedule since Isaiah is officially 3!  This trip was so positive and full of good news!  Hopefully they can all be this good. :)

An Update

Where has this summer gone? Oh I know, to doctor's appointments, therapies, and chasing after Isaiah.

I wanted to share a big detailed post about our Disney trip but time has been flying and my ability to sit down anymore (without falling asleep) is so limited.  I did however wake up at 3 am the other day and couldn't fall back to sleep for the life of me thanks to pregnancy-induced carpel tunnel (I didn't know that was a thing! but now I can tell you it is and it stinks) which enabled me to finish putting together a photo book on Shutterfly (with my left hand because my right is out of commission thanks to the carpel tunnel)...

Click here to view this photo book larger

Photo books are the perfect gift for any occasion.

It was an amazing trip!

Since our trip, we've had a lot going on! Isaiah had another pam treatment (directly after we came home from Disney. not sure what we were thinking scheduling like that!) and sleep study.

Dave took him to his sleep study which gave me an opportunity to get a good night's sleep over at the Ronald McDonald House.  The study went well...so well that Isaiah's pulmonologist told us that Isaiah no longer has obstructive sleep apnea. WOOOOT! It could definitely reemerge at some point, but for now we celebrate....and call the oxygen company to check if the doctor discontinued our script for everything so they can come take the backup cpap that we've had around "just in case".

We've spent the summer doing lots of summery things like swimming whenever we can, playing in the water table, and blowing bubbles...but as it's gotten hotter, it's gotten tougher for me to be outside, so we're also getting crafty and finding ways to have fun inside.

I've also spent a bit of time trying to get Isaiah's gait trainer.  We ordered it two months ago and now finally have an approval from insurance! There was quite a bit of miscommunication that I had to figure out once I had all the information on the company that Isaiah's PT had gotten the ball rolling with...but once I had the information and touched base with Isaiah's doctor, the approval came less than a week later. (If only I hounded two months ago?)

And we've just been getting ready for Isaiah's baby brother to arrive and get Isaiah ready for preschool! Details on that in the near future (I'm attempting to get some posts written over the next few days so I can stop being so neglectful. ;)

Pam

Last week, we headed down to Delaware for Isaiah's most recent pamidronate treatment.  Once Isaiah turned 2 back in August, we were able to switch to a 10 week schedule (as compared to the 8 week schedule we were on previously).

We spent quite a bit of time at the Ronald McDonald House playing as we only had one extra appointment on this trip: a visit to the ENT on Tuesday.  

Back in January, Isaiah battled a terrible ear infection in his right ear...this was supposed to be a follow up for that.  That ear looked great this time (yay!)....but his left ear had an issue (BAAAAAH).  

He had tubes surgically placed in his ears when he was 6 months old.  Because of the shape of his ear canals, the tubes don't have a chance to fall out naturally like they do typically.  This isn't totally a problem, except the tube in his left ear is clogged.  We had to add in an extra appointment over at audiology where they did a hearing test.  Isaiah's hearing is in the normal range, but just at the edge of that in the left ear.  After the unexpected hearing test, we headed back to the ENT, where we were told to give drops of hydrogen peroxide in his ear for 2 weeks and then come back for a check of how things are going.  If the tube is still clogged, Isaiah may need surgery to replace the tube(s).  If not, we've bought some more time before needing another surgery....we'll keep you updated on how that check up goes!

Beyond the ear surprise, the trip was uneventful medically...thank goodness. ;-) We had lots of fun playing solo and playing with Isaiah's buddy Gavin! All that fun makes the trip fly by...

This dose of pamidronate really gave Isaiah a ton of energy.  He typically sleeps his entire ride home, but this trip he was a chatter box.  When we got home, I laid him in his crib for a nap, only to have him yelling "get up!" in minutes....it was a beautiful evening so we ventured outside to enjoy it.

Soon enough we'll be spreading out our breaks between Pam trips as Isaiah is soon THREE! (well not till August but when you're talking in terms of 8/10/12 weeks, that's pretty soon!  We're scheduled to go in 10 weeks again but his next treatment in August just may be in 12 weeks! We'll see though, we have quite a bit happening then (more info on that soon) so it'll depend on that. :)

Our Recent Pam Trip

In mid-January, we had our most recent pamidronate treatment.  Isaiah and I were lucky enough to have daddy come along!

The first day is always busiest since the nurses need to weigh Isaiah, get his port accessed, get blood work, etc...but he handled it all like such a champ this time!  Even after waking up ridiculously early...

Once his Pam was flowing, we saw Dr B and his PA, gave them the run down of everything, and entertained ourselves with our buddy Gavin and his dad.

Once we were finished at the hospital, we spent time napping in our room at the Ronald McDonald House (fun fact: they just finished renovations and we got to stay in a new room! Funner fact (I know funner isn't a word but it just flows, ok?): We stayed in the same room that Dave and I stayed in when Isaiah was first born and transferred to DuPont after he was born.)

and by napping, I mean I got to nap while Dave and Isaiah cuddled and played on the iPad because WHO NEEDS SLEEP? Not this crazy two year old.

We "rested" and had fun in one of the play rooms at RMH until it was dinner time and it was there that Isaiah rode this way cool rocking horse!!

I've eye-balled that thing every trip, but was always too intimidated to put him in...but with Dave's help, we successfully got him in and he loved rocking and yelling "giddy up!") ...and I even put him in again the next day by myself!  Woot woot!

After dinner, Isaiah was worn out (thank goodness...), and slept like a rock.  Day 2 of Pam (Isaiah's infusions last a few hours a day for 3 days) went off without a hitch.  We actually made record timing and were out of the hospital before noon that day! (Seriously, it was a record.)

We had lunch over at the House...

And then treated ourselves to dinner out at TGI Fridays (yay gift card!).  Isaiah was so cute at dinner, playing happily with his Captain Hook toys....acting things out, saying "tick tock tick tock..."

Showing us that he is really growing up!

After dinner, we cleaned up our room and got it ready so that we could check out of the McDonald House in the morning before headed up bright and early to the hospital and then it was time for the last day of Pam!

Isaiah spent time playing with his toys, had an echocardiogram done to check his heart (still waiting on the results but the tech saw no abnormalities...woo hoo!), and before we knew it, the morning was over, they were de-accessing his port, and we were out the door and on our way HOME.

The next few days required a certain someone to catch up on sleep.....even in the grocery store. haha :)

This week we've been dealing with a suspected tibia (lower leg) fracture.  His doctors know and we're caring for it at home thus far, splinted and giving medicines prescribed by his OI docs....the nights have been tough but his days are happy.  We're hoping to avoid X-rays on this one and praying for continued healing. <3

Oh, and Mr Isaiah turned two and a half yesterday!  I can't believe it's only 6 months until he turns 3! Time sure flies when you're a parent...



Happy Valentine's Day! <3

Pam Time and MRI

The older Isaiah gets, the tougher it is to get a moment to sit down and post to the blog! Sorry to those that only follow the blog, we're doing fine, but last week was a BUSY one!

Isaiah and I made a trip to Delaware for Pam (pamidronate- the medicine he gets to help his bones).

Honestly, it all went great!  He was such a big boy and handled having his port accessed (basically got an IV going but instead of in a vein, they use the port he had placed when he was 6 months old) like a champ...his medicine was flowing before we knew it and he was rolling around Day Medicine like he owned the joint.

"Can you show me where the door is?"

Pamidronate is done a few hours each day over 3 days for kids Isaiah's age at DuPont. (That varies by doctor and protocol).  We normally stay at the Ronald McDonald House across from the hospital but since they are renovating right now, instead they helped us get into a local hotel about ten minutes away!  It was super convenient for us and the same rate as staying at the McDonald House.  They even had an amazingly generous welcome pack for us at check in at the hotel.  We were still able to have meals at the house if we wanted to and play in the playrooms...we had dinner and playtime both Monday and Tuesday night.

Here's a little collage of Isaiah at dinner, playing pretend in the Pirate Room of RMH,
and opening his Welcome box at the hotel.  He loves his new teddy bear named Steamer.

I think the only tough part was that the hotel didn't have any cribs available, only play pens...and King Isaiah does not sleep in a play pen...apparently....he had very rough sleeps when I tried to have him sleep in the play pen so instead he joined me in my bed.

Basically taking it over.  HOW does such a tiny little boy take up a whole queen size bed?  Like that. (Picture above.)

Day 2 is usually our easiest day (since he's already accessed and doesn't need to be deaccessed), but it proved to be a rougher day than normal...we had a late start due to some technical issues with the pump and I had a mini heart attack at the end of his infusion but it all worked out.

To make up for a later exit than expected, we grabbed Isaiah's very first Happy Meal through drive-thru...

He loved it.

Our third and last day in Delaware started EARLY (6:45. at the hospital for breakfast.), we had an early morning MRI to check on Isaiah's shunt and hydrocephalus.

This was Isaiah's third MRI.  His first he had sedated, and it helped diagnosis his hydrocephalus.  His second was an unsedated fast MRI; I actually went in the tube with him. He handled it better than I did! This third one was similar to the his last MRI, unsedated and and fast....but he's older now, more observant...more nervous.  this time he cried and jumped whenever the MRI made noise and I ended up having to hold his chin so he didn't move his head all around...this time it felt a bit like torture....putting Isaiah through these things is so tough sometimes....I know it's our normal, but it doesn't make it easy.

Anyways, after his MRI we started Isaiah's last day of pamidronate.  We were (luckily) able to schedule a follow up with Isaiah's neurosurgeon only an hour and a half after the MRI (in the morning during pamidronate)...normally you can't leave Day Medicine when the medicine is flowing, but a nurse from the MRI area was able to help us and tag along upstairs.

What'll happen if I "push da button"?

We met with the doctor who showed us the latest pictures...I made this little collage to compare...the first is not exactly the same view as the other two but it shows you all of the spinal fluid in Isaiah's head at the time (all the bright white).

We're pretty happy with the results.  His ventricles are smaller but not too small (you don't want them to shrink rapidly from what I understand) and they are more symmetrical than they were before.  Progress.  Isaiah's doctor seemed happy with the results and this time we don't need to see him for another year (whoop whoop! no offense Dr C).

After our follow up, we made our way back to Day Medicine and finished up with Pamidronate, Isaiah was de accessed and we hit the road!

Thanks to being there early, we actually finished the earliest we ever have...and were home by 1:30!!!  We had a nice lunch and Isaiah was actually able to nap in his own crib!  Home sweet home, for sure.

The rest of the week was full of a visit from another OI family from out of state...and it was awesome!  Updates on that soon. :)

Pam Recap

Sorry for the lack of midweek posting....some things got the best of my brain and I just couldn't bring myself to open the blog.  There's some confusion with our insurance and Isaiah's care this past week...and once things are done and settled I'll likely share what happened (if that's legally allowed), but for now, let's keep it vague so I don't go into a panic attack...

This is Isaiah's "Mom, can I have a ball or maybe eight of them?" face.

Good thing this cute kid is in our lives to distract us from our worries.  

We're home from DuPont. We got home Wednesday night after what was a wonderful trip in regards to Isaiah.  Truly, Isaiah was a rockstar.

Isaiah tried to take over the magic show at the McDonald House on Tuesday night.

He was pushing himself everywhere he could...we were able to visit the NICU and see some of his old doctors and nurses.  He wheeled laps around Day Medicine while his pamidronate was flowing.  He was all over the place at the McDonald House, and it was thrilling to have people who have seen him in the past tell us how impressed they were with his progress.

He even showed off for Dr B and his PA....lifting his head like this...

and um.....even showed them how he is for real trying to crawl.  ISAIAH is trying to crawl!

The last two months, Isaiah has made leaps and bounds...but the most have been within the last two weeks that he's had his wheelchair.  He's talking more.  He's moving more.  He's pushing himself physically beyond his own boundaries.  It's amazing.

Dr B seemed pretty darn impressed with him...to the point that he mentioned a magic word...RODS.

We think maybe maybe maybe it's time to start talking RODS.  For those that are reading this and thinking "uuuuh, what does that mean?", well, you know how the bones in Isaiah's legs are bowed?  Dr K will at some point place rods in those bones, straightening them and giving him something stable to (someday) possibly walk on if Isaiah is interested in that.  They are also basically internal splints, helping to avoid more severe fractures that can occur with extra movement/weight bearing.

Dr B has signed Isaiah up for a September OI Clinic appointment. OI Clinic is basically a cluster of appointments with Dr B, Isaiah's geneticist, Dr K, his orthopedic surgeon, and a PT at Dupont.  It's there that we will talk about rodding surgery, Isaiah's progress, and more (well, I don't know because it'll be our first clinic! lol).

I'm hesitant to get too excited.  Partly because of the issues we had this week with insurance, and partly because I don't know if Dr K is really ready to talk rods yet....

but gosh, RODS! AHHH! I won't lie, when I see Isaiah start to try to crawl, I hold my breath, worrying about the possibility of a fracture...

But I suck it up and help him in ways his PT has shown me...because CRAWLING IS AWESOME.  I make sure his legs are inward so his hips are lined up correctly, and we're working on helping him get that darn right arm out from under his body....his pushing his wheelchair should help with that too.  It'll really help him to build his upper body muscles, which will help him to hopefully lift his upper body before we know it.

Guys, there was a time I didn't think I'd ever be able to talk about Isaiah crawling.  And lifting himself with such strength!  Ahhhh!  He is a determined little guy, and we are very blessed parents.

Pam Time!

Yesterday we checked in to the Ronald McDonald House, our home away from home, for Isaiah's next Pam-cation ;). For those new to the blog, (hi there!) Pam is short for pamidronate, the treatment that Isaiah gets to help his bones. We come to DuPont every eight weeks for it.  It's a treatment that takes 3-4 hours a day, each day, for three days, so we stay at the McDonald house across the street to make it easier on us.  It's an outpatient treatment so we do it all together. As Isaiah gets bigger, the amount of days we do this will be less, so at some point we'll just be doing this one day every 16 weeks (can't wait!).

For now, we take advantage of having the McDonald house across the street and make a little vacation out of things. Usually when we arrive, Isaiah has a hissy fit, but this time he rolled in with pride. He wanted to check everything out.

We had a great evening with his buddy, Gavin, and headed to bed early to ready ourselves for the first day. 

The first day of Pam is always the toughest.  Isaiah has to be weighed, measured, and accessed. When I say "accessed", I'm referring to the nurses accessing the port in his chest and getting it ready so that his IV fluids (the Pamidronate) can flow. If he didn't have the port, they'd start as IV. 

We're adding to the long day with a check in with audiology late in the afternoon. 

I'll be updating Isaiah's Facebook and my Instagram (both of which you can get to, whether you are on either or not, by just clicking on them over on the right side of the blog so keep an eye out. :)

Pam, Pulmonary, and HOME!

So, seriously, didn't Isaiah's MRI look awesome!? Yep, I'm still talkin about it. ;-)

Yesterday, we checked out of the McDonald House bright and early, and headed over to DuPont for breakfast, a quick breathing test (I'll explain more on that in the future, but all is good!), and our last day in Day Medicine for Pam until July.  

We find different ways to entertain ourselves in Day Medicine. But when you have about 4 hours in one place, waiting for medicine to slowly flow, you get creative.  I brought our house a ton of toys (and a few books) each day so thanks to them and our friends, we had lots to do.

Here is Isaiah playing with blocks on Day 2.

Isaiah was rocking sitting up whenever he was up playing and eating.

On Wednesday, we had an appointment with Isaiah's pulmonologist, Dr H.  We check in with him every 4 months to make sure Isaiah continues to do well in the breathing department.  He checks his CO2 levels, listen to his lungs, and ask me lots of questions.

Waiting for Dr. H.

All continues to go well and we were reminded to schedule another sleep study for September.  (boooooooooooooooooooooooo)

Last day of Pam!

The last day of Pam went smoothly.  I helped de-access his port when all was said and done by removing the tape myself; the nurse even showed me what to do with the equipment when de-accessing him (aka taking the needle out of the port in his chest)...I'm not sure I'm brave enough to ever do that, but if I did need to at some point, it's good to know.  I know they showed me when Isaiah first got his port placed, but I was too freaked out by everything to even look at it then.... all my friends/family that know my fear of needles should be so proud of me nowadays. ha

The drive home was quick, especially for Isaiah.  He fell asleep as soon as we were exiting the parking lot and didn't wake up until we were down the road from our house! lol  

It's wonderful to be home! Now I need to get us all unpacked and back to our normal.  :)

Happy Weekend!

Pam, MRIs, and Results, oh my!

Isaiah and I arrived at the Ronald McDonald House on Monday.  We had to be over at DuPont bright and early on Tuesday, so being here the night before is a big help. 

We spent the evening getting ourselves ready for the week and enjoyed dinner in Isaiah's new travel high chair.  

We ordered this chair with our summer vacation in mind (more on the in the future), and I'm taking advantage of this trip to get us used to it.  

So yesterday morning, Isaiah and I were up at 5:30. He's such an early riser lately! It was to our benefit though, as we had to be checked in at 7:30 so it gave us time to have breakfast at the House (I bring my own bagel for him and scrounge around for myself.  They had eggs in the shared refrigerator! Yay!)  

When we arrived at the hospital, I had to fill out paperwork for Isaiah for his first Fast MRI. A "Fast MRI" is just that, fast. It's much faster than his sedated MRI, which lasted an hour. This one was just about two and a half minutes. I was surprised to find out that I needed to fill out paperwork as well, as they find it best to have a parent in the tube with a child Isaiah's age. I couldn't disagree, and was thrilled to be so hands on without stepping on any toes. 

We got in our scrubs and gown and hid my wedding ring in one of my bags.  We made our way to the MRI area. I placed Isaiah on the MRI table and then the tech advised me of how to hop up on my belly at Isaiah's feet.  Once I understood where I had to get my head and arms (so I didn't hit them when the table got into position for the MRI), we put in ear plugs (because it's LOUD in there), Isaiah had a cage-looking thing placed over his head and we were moved into the tube. 

I'd be lying if it didn't feel longer than two and a half minutes. We sang some of Isaiah's favorite songs, Wheels on the Bus, Old MacDonald, and Boom Boom, Ain't it Great to be Crazy. We held hands the entire time and I had my head sort of resting lightly on his belly while looking up at him. Ours eyes were locked almost the whole time and when the machine would run it was so startling but Isaiah didn't show any fear. 

The whole thing was a bit hard on my heart. Being in there with him....I am so, so glad I was there with him, but it threw the reality of what my baby goes through in my face. It's scary. It was so hard not to cry, looking into his brave little eyes.  And then at one moment, the machine made a loud boom again, and he grabbed my hands tight and said "I gah you", which means "I've got you."  Tears in my eyes, guys. It's something I say to him when we're on an elevator or somewhere new and he's nervous. I always tell him "I've got you. You're going to be ok."  We were in that MRI machine for him and there HE was basically telling US we're going to be ok.  

After the MRI, we headed to Day Medicine for day one of his Pamidronate treatment.  

I'd be lying if I told you that went off without a hitch. Our appointment was at 8am and pamidronate didn't start running until 11.  Three hours of waiting.  That was a record.  Then I went to give Isaiah his milk before a nap and I found out that I somehow forgot the nipple to his bottle.

How does one forget such a vital part of a bottle? I tried a straw, rejected. I tried a hospital-grade nipple, rejected....and then he was so set on milk from a bottle that he wouldn't eat any other snack so nap time was rough and cut short...thankfully when he woke up, he ate my peanut butter crackers which held him over until we got back to the McDonald House. 

Before heading there, we had one more appointment...one with Isaiah's neurosurgeon...that we were late for, but thankfully Day Med called up to them so they were aware we were in the building. 

One thing that happened in the morning, before Pamidronate... they take blood, measurements, etc...Dr B. measured the circumference of Isaiah's head and it came out to 50.9 cm.  Isaiah's previous two measurements were 52 cm. 

I didn't take this measurement for gold....but then a few hours later, the nurse for Isaiah's neurosurgeon measured and got 51cm with the same tool she's used in the past. A whole centimeter! This puts his head size back on the growth charts!!!!

Isaiah's head shrunk! Whoop whoop!!!!! Even though I was told it wouldn't because of Isaiah's age and how hard his skull is, it did.  

That alone had me feeling good, but then Dr C showed me the MRIs...

Do you see all the white stuff around the outside on the left picture? That's spinal fluid. The large, almost heart-shaped area is where Isaiah's ventricles are located. Huge and full of spinal fluid.

On the right you see much less spinal fluid and BRAINS! His ventricles are still larger than they should be but they are making progress!  

Even the shape of his head has changed.  I knew that, but to see it in the MRI just makes my heart smile. 

I want to sing from the rooftops and jump in the air kicking my heels.  The shunt is working! And doing a darn good job! And something is going just as it should!!!!!!!!

I want to just revel in this good news. I just want to soak it all in and feel this feeling all the time.  I have to schedule another Fast MRI for six months from now, which I will match up to our pamidronate schedule. And I hope and pray that it shows more progress. 

Now let's start day 2 of Pam! 😃