Rare Disease Day

Did you know that there are nearly 7000 rare diseases?  Osteogenesis Imperfecta is just one of them.

Rare Disease Day takes place on the last day of February each year.  This is the first year that we are joining the cause.  "It's a day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives."

The theme for this year's Rare Disease Day is Living with a Rare Disease.

Through our blog and social media pages, I believe you get a good glimpse of what it is like to care for a child with a severe form of Osteogenesis Imperfecta.

But there are many types of Osteogenesis Imperfecta.  Each individual's OI is so unique to them.  Some are affected so severely that their bones deform as they heal after a break (like Isaiah), but there are some people who live with OI who don't even know it.  Some rarely break bones and some break so frequently that they can't keep count.  Some walk, some get around by wheelchair.  Some dance, play basketball, or do karate!

You can learn more about OI by visiting oif.org.

Tomorrow is Rare Disease Day.   Tomorrow, we celebrate our rare boy, and this year we'll do so simply by wearing jeans.  (And actually, that's a feat for me nowadays. I live in sweats. HA.)

Please join us in celebrating all of those who live with a rare disease.

Alone we are rare, but together we are strong.

Surgery Date Set

I called and scheduled Isaiah's shunt surgery...it's set for mid April.  Unless doctors advised otherwise, I wanted to wait until after Easter, after his next Pam treatment, and after his scheduled sleep study.  I already had things worked out for them and didn't want to have to reschedule them if I didn't have to.

I also spoke to Dr. C's PA (physician's assistant).  She answered a lot of my questions that pertain to the shunt itself (but I do also have an appointment scheduled for during Pam to meet with Dr C in person).   At DuPont, there's not multiple surgeons involved in placing the shunt (in some hospitals, placing a shunt like this involves both a neurosurgeon and a pediatric surgeon...if that was the case here, I wanted to talk to the pediatric surgeon.)  Both of Dr. C's PA's will likely be assisting him, and all will be well-versed by the time surgery happens.  

They better be.

Let's distract ourselves from this serious conversation with Isaiah discovering a Vanilla Wafer, shall we?

I'm still nervous, but less about the shunt, and more about the "the big picture" for Isaiah during this surgery...within the conversation, I had to repeat myself about Isaiah's fragility and what it means.... It means no blood pressure cuffs (yes, I know that means he'll have to have an arterial line placed to monitor his blood pressure.  Better than a broken bone due to the cuff repeatedly squeezing his curved bone, amIright?).  It means extubating him can break bones (he will be intubated for surgery, which is standard procedure) so they need to do so carefully.  It means that even just rolling Isaiah can crack a bone so my prepping the staff on positioning him is vital to his all around safety.  It means my (over)involvement is not to step on toes but to ensure my baby's safety.  I trust the DuPont staff because they have (almost) always listened to me.  

It means I need to talk to the anesthesia team.  I will be insistent about this.  I also need to talk to someone from the PICU (PICU stands for pediatric intensive care unit) as that's where he will be post-op.  I WILL NOT go through what I went through after his first surgery.  NO WAY NO HOW NO THANKS.  I have learned since then.  I will be sure that I have a long video of Isaiah's breathing while at home so they can see what his "baseline" breathing looks like... so that his post-op breathing doesn't scare the staff like it did before.  

Vanilla wafers are almost as good as chocolate everything, mom!

Can you tell I have feelings about all of this?

I am so hopeful that all of this worrying that I am doing will be for nothing...just like with the MRI.  For now, I am going to take a deep breath and push it all out of my brain because a stressed mama isn't a fun mama.  When I come up with new questions for my meeting at the end of March (Pam time), I'll write it down and do my best to forget it.  

Time to enjoy life with my wafer-loving boy.

Happy Friday!

We Got the Call

Yesterday, I called the Neurosurgery department to check in on if they got the cd of ultrasounds I sent.  They still hadn't received them, but apparently I called at the same time that a meeting was going on to discuss the plan for Isaiah as Dr B had brought some of my ultrasounds to Dr C to look over. 

I was a bit nervous for the next few hours, knowing that the doctors were trying to formulate a plan and I wasn't involved in that discussion.  I get it but he's my baby.  But I really do get it; in that office, he can't be an adorably handsome baby boy with big beautiful eyes and a heart-melting smile. ;-) In that office, he's a complex 18 month old male with hydrocephalus.  They needed zero emotion and 100% focus on what is best for his body.

I got a call around 4:00 that the decided a shunt needs to be placed.

It's official.  Isaiah has surgery in his future.

I need a drink too, buddy. :-P

I went into a bit of a panic after I hung up the phone.  I know this is what's needed and what's best but the what if's immediately starting swirling in my head.

I won't get into them on here right now as I've mentally put them on the back burner  (for the sake of my sanity)...I wrote a list of questions last night and let it go.  I plan to call back today to not only schedule the surgery but to schedule a consult for before it.  I want to discuss my questions with the doctor in person.  I plan to ask if it's possible for others involved in the surgery to be there as well as you have to remember, this surgery won't just affect where they put the shunt...he has to be intubated, which opens a whole new can of worms...I have questions for everybody that will be involved. 

In my dreams, Isaiah's surgery can wait until April, aka after flu season is over and after his sleep study is complete.  I really want to avoid having him inpatient in the hospital during flu season and I don't want to reschedule the sleep study (which I imagine we'd have to since they put all that goop and those wires all over the head and Isaiah will have a gnarly healing scar on the right side).  I also am hoping to schedule the consult for when we are there for Isaiah's next pam, just so it's a bit more convenient for me.

Some of you might be wondering why I am not looking into a second opinion...well, you know I love DuPont; I trust them.  They have worked with Isaiah since he was 5 days old...actually Dr B has worked with us since before Isaiah was even born...what, 28 weeks in utero?  They know Isaiah.  There's something about taking him somewhere else that just scares the daylights out of me...mostly because of his respiratory history and his OI.  

Anyways, we'll continue chugging along here, trying to feel some kind of normal (and less "impending-surgery-panic").  Some OI parents say that when their kids with OI are little, they hit milestones after each pam treatment.  Right after his last treatment in December, Isaiah started sitting up from a reclined position in all of his chairs.  After this latest February treatment, Isaiah is now refusing to put his head on our shoulders when we're holding him.  Goodbye cuddles (SIGH), hello inquisitive Isaiah!  Even when I go to burp him when he is half asleep before nap, he holds his head up and reaches like crazy for the rocking chair cushion behind me.  

Look out, Isaiah has a whole world to check out!

Winter Fun

This weekend we forgot all of our troubles and enjoyed times together as a family.  We went out to lunch, enjoyed water therapy together (I'll share pictures from that later), and once Dave was home safe from work on Saturday, happily watched the snow fall.

We knew from a past snow that Isaiah was not so much a fan of going out in it, but does love playing with it, so we brought some more in and even tried to make Snow Ice Cream.

Spoiler alert: it was disgusting.  I went with a 4 ingredient recipe (because we had all of the listed ingredients), but may try another in the future (do you know a good one? Does it depend on the consistency of the snow? This snow was light and fluffy so I wonder if that's why it was more slushy like....or maybe I put too much in?  Oh well...)

After that ice cream fail and a nap, we decided to try taking Isaiah out to play.  I know he loathes his heavy winter duds, and they are hard to get on him, so instead I opted for multiple layers upon layers.  I know his head control isn't strong enough for his awesome infant sled, but another mom from TN had posted pictures of her son sledding in a laundry basket and I just thought that was brilliant.  I wanted some serious head support, so I decided to use Isaiah's adaptive chair, called a Tumbleforms Feeder chair, that he received from members of our OI family.  Guys, it fit inside that laundry basket like a glove!  It was meant to be!  We added in some blankets for warmth and cushion, threw on his hat and mittens, and away we went!

We had so much fun!!  Whenever we'd stop, Isaiah would yell "GO! GO!".   It was just perfect.  It felt normal.  Because Isaiah was so well-protected, we did so much less worrying about bones.  Because Isaiah was used to that chair, he was happy because he was sitting in something familiar but doing something new.

Yup, this will be our mode of sledding for winters to come.

If you are in the US and experiencing this crazy winter, I hope you have been able to get out there and enjoy it when it's safe.  And if you are far enough south that you're avoiding it all....can we come live with you? :-P  We are making lemonade slushies with our lemons but man oh man, what I wouldn't give for tulips bulbs coming through the mulch, starting our vegetable garden, and warm sunshine on a spring day...

Emotional Roller Coaster

Yesterday.

Yesterday was a rough day for me emotion-wise.  I feel like I am back to my roller coaster days of my pregnancy...all the unknowns...all the waiting...I am trying to learn, trying to understand, trying to communicate with doctors...trying not to allow anyone to put Isaiah on the back burner...and I'm surrounded by new terminology and feeling like I'm drowning in it.

(Oh hey, does this post confuse you after Wednesday positive post?  Imagine being Dave! HA)

And just when I think I am starting to understand, I hear new terms and I am back to my mind fogging up and my eyes are consumed by tears.  I should have paid better attention in biology class or something.

I swear, the only difference between now and my pregnancy is that at least I can turn and see this face:

Baby, I don't know what to do.  I don't know if I should continue to patiently wait for the doctors to come up with a plan or if I should say "Hey guys, if everybody agrees that a shunt would help alleviate the fluid in Isaiah's head, WHY isn't this surgery scheduled? Why are we waiting for these ultrasounds? WHY WHY WHY?" 

Yesterday I realized that while we wait for the cd of my ultrasounds to be sent to DuPont, I've had a CD of some of them all along.

Face palm.

They are from CHOP when Isaiah was just 25 weeks in utero, but it's something.  Since it was past post office hours, I went onto the computer, downloaded some software, and exported every one of the ultrasound pictures that involved Isaiah's head onto my computer and emailed them to Dr. B (I don't have Isaiah's neurosurgeon's email).  I mailed them to DuPont this morning as soon as the post office opened.  (I actually really wanted to drive them so that I could hand-deliver them but Isaiah's neurosurgeon isn't going to be at the hospital today.)

It is so hard having to just sit and wait.

I've tried focusing my energy on the wheelchair confusion.

Dealing with insurance and DMEs and wheelchair companies and MORE WAITING.  More reasons that my head feels like it's going to explode.

I feel like I'm never going to figure this out.

I remind myself that I used to feel this way about NG-tubes, oxygen saturations and respiratory rates, splinting arms (truth be told I am still overwhelmed by splinting legs), ordering supplies for Isaiah's C-PAP.....and now I'd say I am confident in dealing with those things (with Isaiah).  I'm not overwhelmed by them anymore and soon enough I won't be overwhelmed by hydrocephalus or wheelchairs.

We can do this.  We can do this.  We can do this.  All of this.  I can learn what I need to learn.  Isaiah will get the help he needs.  I need to be patient and open-minded. (Anyone that knows me knows that the word "patient" wasn't really in my vocabulary until Isaiah was born. ;-) )

Last night, Isaiah wasn't in the mood to go to bed.  Dave had put him down (because I was on the computer trying to get the ultrasounds) and when I came up a half hour later, he was still partying in his crib.  I have never been so happy that Isaiah refused to go to sleep.

I needed his cuddles and giggles.  I needed story time.  I needed him.

I needed him to remind me that I can learn and fight for him because it's all for him.  He's worth it.  All of it and more.

Fun While We Wait

My posts lately have been too serious for me.  I hope you know I am not completely consumed by all the worry and waiting (yep, still waiting for those ultrasounds to be sent to Isaiah's neurosurgeon)...how can I be when I take care of this handsome boy?

Thanks for the Valentine, Cousin Marissa! I <3 you!!

We've been spending lots of time playing (and apparently avoiding naps.  Yesterday was nap-free.  For the love of Fruit Loops let that just be an off day!) and making awesomely hilarious "thinking" faces while doing so... 

WHICH ONE DO I PLAY WITH? WHICH ONE?!?

We've been working on tummy time and left-side lying.

He's starting to do it on his own, guys!

We've been repeatedly singing Old MacDonald Had a Farm because hearing Isaiah try to sing "E-I-E-I-O" is the greatest ever.

and we've been enjoying life.  Seriously, how can we not with this guy?  Especially when he shows us how strong he is-  he can sit up without the support of a tray in front of him! (Did you notice that in the video above?) Woo hoo!

Everyday this kid gets stronger and more amazing.  Yes, we have had a few set backs (like the latest diagnosis), but who doesn't experience set backs here and there?  Instead of letting them consume us, we're accepting them and preparing ourselves to fight through them along Isaiah's side, and hopefully Isaiah will always do it with that smile of his.  Hopefully he will always choose joy...and without flipping people off like he looks to be in that last picture. ;-)

Another Day, Another Diagnosis

Osteogenesis Imperfecta.

Chronic Restrictive Lung Disease.

Kyphosis of the lower back.

Last week we added Hydrocephalus to the list.

Another day, another diagnosis.

The actual full list of Isaiah's diagnoses can sometimes feel so overwhelming that I chose to just focus on those that are most severe... the ones that are the causes of the others in that crazy list.  I can't pronounce most of the others anyway. ;-)

And if I am feeling too overwhelmed by the list, sometimes I grab some chocolate.  Chocolate always makes you feel better, right?

Chocolate pudding is yummy, guys!

See? the chocolate love is hereditary. :-P

I feel a bit numb to this newest addition, hydrocephalus, right now.  I joke "another day, another diagnosis", but right now I am not quite processing it.  Maybe it's because we're still waiting for a plan?  Isaiah's neurosurgeon really wants to see my ultrasounds but there's a technical issue that's making it difficult for him to see my files from Jefferson (since Jefferson and DuPont are partner hospitals, doctors can often see medical files in if needed within their system....but there's an issue since my files are through a different office within Jefferson).  He wants to see the ultrasounds in hopes of getting a good view of Isaiah's brain before he was born.  Once he has something to compare the newest pictures, thanks to Isaiah's MRI, he can decide how he feels it best to proceed.

I know that although Isaiah's head has always been larger; it started growing rapidly around his birthday and it's only continued on that faster trend.  My gut tells me the neurosurgeon is going to want to put in a shunt (and if he isn't convinced Isaiah needs I shunt, I think Dr B is and will push him to place the shunt).  If it's decided, a shunt will be placed in his head (by drilling a hole in his fragile skull! PUKE!) and will connect down to his abdomen to drain the excess spinal fluid out of his body.

Inside my heart breaks for my baby.  Another diagnosis.  Another surgery.  Another sedation.  Another hospital stay.  Another situation that takes away the normalcy I was starting to feel after accepting the kyphosis.

Sigh.

To add to everything, Isaiah has started to hold his head throughout the day and we are starting to get paranoid about it.  I swear to you, he never did this before our appointment with his neurosurgeon.  It's like he heard the doctor ask if he holds his head (as that could be a sign that it's hurting from the pressure of the hydrocephalus) and he thought "oh man, this is going to be so much fun, making mom and dad go crazy wondering if I am hurting or playing peek a boo."

Torturing mom and dad after dinner is fun.  Don't mind the mashed potatoes on my chin, they are left overs for later.

And as much as I am afraid for the surgery, I am afraid about his not getting the surgery and then all of a sudden one day it'll be an emergency.  They say that Isaiah doesn't show the severe symptoms of hydrocephalus, but if he begins vomiting like in scenes from The Exorcist or if he seems to be struggling with a headache, we need to get our butts to the hospital.  

I worry about things I can't control.  Like, what if it does become an emergency and Dave is traveling for work?  I can't drive Isaiah and make sure his airway is clear if he is vomiting all over my backseat (not to mention, YUCK, my poor backseat!)  which means I'll have to call an ambulance.  We've done that once already.  An ambulance ride is bumpy and shakey, and scary in terms of Isaiah's bones.  Isaiah's brain and open airway win out the concerns over Isaiah's bones, but still, it worries me.  We could avoid that whole scenery with a scheduled surgery.

But surgery? Bah! I was scared enough about a quick sedation for the MRI.  I am going to need my own dose of sedating medicine to get through this one if it ends up happening.  Worrying about my baby's brain and his breathing?   Ugh.  I see a Hershey bar in my future.  King-size.  ;-)

So currently, we're waiting, and my brain is on overload over-thinking.  And I am running out of chocolate guys, this could get serious. BAH!

Let's hope my ultrasounds can get to DuPont asap.  In reality, I know it's President's Day today.  I called Jeff on Friday and the office was closed already, so out of desperation I emailed my doctor from there.  He rocks and has asked his staff members to help, but they can't just open the post office, so the likelihood of Isaiah's neurosurgeon getting his hands on the ultrasounds this week are slim...

I am really going to have to get to the store and replenish my chocolate supply.  Stat.

Pulmonary Appointment

We've been home now since Wednesday afternoon and we're thrilled to be back to waking up in our own beds. :-D It was a really loooooong Pamcation.

To end our trip to the hospital, we visited Isaiah's pulmonary doctor, Dr H, he's the doctor that keeps track of everything related to Isaiah's breathing.  I love him because he sees Isaiah.  He watches Isaiah's breathing while he's with him, but you wouldn't know it when he's interacting with Isaiah, and that just gets me...because it puts Isaiah at ease...very much like Dr. B.

I was nervous for this appointment.  We may have started weaning Isaiah off of his nighttime c-pap quite a while ago. Whoops.  Isaiah doesn't tolerate the c-pap cannula or mask at all.  He yanks them off, he flips his lid if we anchor them on him, and we just honestly haven't felt like this is a necessary fight anymore because we feel Isaiah has been doing so well.

When Isaiah's pulse ox beeps, it's because he's kicked the sensor off or it's almost off.  Isaiah hasn't had a real dip in his oxygen in months.  His oxygen saturation level almost always reads above 96....the only time we've been truly concerned in recent months is when he broke his arm and leg and his oxygen level sat at 95 while he slept.  We spoke to his doctors at the time and learned it was likely due to his pain level since he was breathing quicker thus not getting as much oxygen as normal, but it was still a safe level so there were no real concerns about it.

Since the last time we saw Dr H, I've learned that Isaiah breathes a million times better when he sleeps on his side, so if I ever hear apnea signs while he's sleeping, I tend to check on him, see that he's laying on his back, and turn him onto his side to avoid anything happening with his oxygen...but most of the time he puts himself on his side so we don't hear signs of apnea like we used to.

I believe his obstructive sleep apnea has greatly improved but is basically nonexistent when he sleeps on his side- the apnea is completely positional for him, and only occurs when he sleeps on his back.  I'm actually going to talk with his PT when we see her about putting a roll under his shoulders when he's on his back and seeing if that would help while on his back.

We spoke quite a bit about my findings about his apnea with Dr H, and guess what...he is happy with everything!  He is thrilled with Isaiah's progress.  They did a test to see what his CO2 level is (normal levels are between 35-45) and it was 37!! WOOT WOOT!  This means he's been doing a fantastic job breathing efficiently on his own...he's not holding on to any extra CO2 like he did in the beginning of his life.

Dr H said to continue to monitor Isaiah's oxygen level with the pulse ox but we can continue our life off the c-pap- it can stay in the closet (unless Isaiah needs it).  He gave the ok to finally pull Isaiah's medicines!...omg am I dreaming?  He wants us to wait until the end of flu season to completely stop them, but says we can cut both Isaiah's daily Pulmacort treatment and his prevacid dose then.

He's asked us schedule a sleep study that will hopefully show Isaiah's progress so that we can officially get the c-pap out of our house....not looking forward to a night in the hospital full of wires and goop, but we are looking forward to its results.

Meanwhile, we are still waiting to hear from Isaiah's neurosugeon to find out the plan for what he thinks is best to treat Isaiah's hydrocephalus.  We're hoping to hear before the weekend but if not, I will be stalking come Monday morning. ;-)

We're pretty tired right now; it's amazing what a ride on an emotional roller coaster can do to your energy level, but we're optimistic.  We're optimistic about Isaiah's future sleep study and we're optimistic about solving his issues with his hydrocephalus.  Guys, he will be ok.  He's Super Isaiah after all, isn't he? ;-)

18 Months!

Thank you so much for the outpouring of love and support. We've been reading all of the messages and comments and they seriously warm our hearts. 

Last night was, weirdly, the best night of sleep I've had in over a week.  Isaiah slept through the night and I guess I was able let go because there no more wondering about what's going on inside of Isaiah's head. 

As I type this, we're in day medicine at DuPont, while the last day of pamidronate begins for Isaiah. I can't help but think how far he's come in a year and a half. The baby with such a grim outlook while living inside my belly is laying in front of me giggling and playing piano (and of course watching Mickey) a whole year and a half later.  

Amazing. 

___________

Today, Isaiah is 18 months old! A whole year and a half!!! This has been a BIG month for our guy.

I cheated and took this picture before we left on Sunday. There's something about watching him grow month by month in that high chair by the blue wall that just gets me. 

First off, unless you've been living under a rock/not checking out the blog, you know that ISAIAH CAN SIT UP NOW from a reclined position.  He can HOLD HIS HEAD UP.  HE CAN! HE CAN!! HE CAN!!!

TAKE THAT, HYDROCEPHALUS!

This has been something I have been dreaming of...something that I, in all honestly, was worried would never happen, (I can be pretty dramatic sometimes.) but he's doing it!  He sits up, he looks all around, he reaches for things...  He's been extending his spine, his neck, and it's amazing.

Before Isaiah was born, I remember thinking of how extra sweet certain milestones would be...and yup, that rings true with this milestone.  Every single time he sits up, we beam with pride.  I tear up more times than I'd like to admit.  I feel such extreme happiness....He's doing it!  By himself!  and he's truly as proud as we are.

His vocabulary has grown this month as well.  He's all about the "bubbles" during bath time.  He loves to eat "pasta" and throw "puzzle" pieces.  When he reaches for things, he says "I get, I get, I get, I GOT!" He says "yeah", "puff", "goo" (for good), and "I di" for "I did". 

He's wearing 3-6 months clothes and weighs about 15.5 lbs.  We're still waiting on a recent length but last I checked, he'd grown a whole inch since last treatment, which is honestly pretty significant growth for isaiah. I'm hoping it'll be an official measurement later today. :)

______________

Isaiah David, we love you, kid. We can't believe it's your half birthday! We only have 6 months until you turn 2! Oh man, I better start party planning.... Haha jk! (Maybe) <3

MRI Results

First, I'm just going to cut to the chase, Isaiah has been diagnosed with hydrocephalus. 

_________________

For the first time in forever, we had to get Isaiah out of bed. Our sleepy head was trying hard to recover from his long day yesterday but we had to get this show on the road. 

Our morning went rather well, day 2 of 3 of Isaiah's bone treatment went smoothly, but when Dr Bober stopped in (as he does every day of treatment), he let us know that the MRI results were available. 

He said things weren't textbook...We've always known Isaiah is unique...but they did find some concerns. Isaiah's jugular veins (those are the main veins that carry spinal fluid out of your brain) are...blocked? Usually there are holes in your skeleton that those veins travel through; Isaiah doesn't have those holes so his body has been compensating by creating new veins all over his skull to get that fluid moving. 

Basically, if you think of it in terms of roadways, the jugular veins are like highways.  Isaiah's highways are closed thanks to road blocks.  Thankfully, his body has created side streets to detour/ease the "traffic congestion" (aka spinal fluid) but side streets still can't clear a traffic jam quickly when cars keep coming so traffic continually builds...am I making any sense?  

He has fluid build up and it's possibly putting pressure onto his brain. 

Because Isaiah is doing well cognitively and is often so happy, no one is sure how truly severe the hydrocephalus is. 

We don't have a plan yet, the doctors are taking time to think and taking time to get a hold of my ultrasounds so that they can hopefully find a clear enough picture of his brain from that time so they have something to compare this week's MRI to. 

We're hoping to have a plan by the time we leave the hospital tomorrow, but until then, please pray that the doctors can come up with the decision that is right for Isaiah. 

_______

As for Dave and I, we're saddened by the news, we're a little scared, but we're happy to have some answers. I will hopefully find some time later this week to dive more into that, but tomorrow you should expect your typical 11th of the month post because Isaiah will be officially a year and a half then!

Thank you so much for your love, support, and prayers. 

MRI Complete and Back to our PAMcation

Isaiah's first mri is now a memory! Hooray! As a reminder. Isaiah was getting an MRI to check his head for hydrocephalus.  There is some concern due to the the fact that his head has grown off the (growth) charts, and although isaiah shows no other signs, we just want to be sure we're not missing it. 

The MRI lasted about an hour.  Amazingly the team did wait to get him off the the MRI table so that I could do it.  How fantastic are they? So I moved him from the MRI table to his recovery bed.  And let me tell you, my kid is HEAVY when he's sedated/coming out of sedation. Dead weight.  

Isaiah took some time to wake up, but he made it through the entire MRI without needing any breathing support besides an occasional mask of oxygen, just like any other kid? Woah! Go Isaiah! I recovery, he spent a lot of time sleeping...it was nap time after all! But before we knew it, he was awake and drinking water...

Once Dr B came in and saw him, he gave the all clear to give Isaiah his pamidronate so we moved to day medicine! Woooooot!

This is where Isaiah got to play with his new toys....yup, of course we bought him some fun stuff at the gift shop while he was getting his mri...

We're as surprised as you that they aren't Mickey-related. 

Pam went off without a hitch!  Everything was normal. As the treatment went on (about 4 hrs a day for 3 days.  Today was day 1), Isaiah's appetite increased and by the time it was over he had a few crackers, some nutrigrain bar, and an ounce of milk...progress! We grabbed dinner for him in the cafeteria before headed back to the McDonald house and he ate quite a bit hot dog and almost a whole yogurt! Hooray appetite! He headed to bed after a bit more milk and we're happy. 

It was A LONG day, but we feel lucky and so blessed. 

Tomorrow we should find out the results of the MRI. We'll let you know as soon as we can.  ❤️ thank you for your love and prayers!

MRI in progress

This morning went rather smoothly. Isaiah woke a little before 8 so we gave him a bit of water before his official cut off time. Before we knew it, it was time to head to the hospital...

Thank goodness for the iPad! It saved us all! ;)

We spent a lot of time in Isaiah's anesthesia room prepping the staff that would work on sedating him. They were WONDERFUL. Full of thoughtful questions and allowing us to do as much as possible. 

They even brought the MRI table into the room and WE positioned him.  The plan is for us to be the only ones repositioning him so when the MRI is complete, we should be the ones who will move him to his recovery bed.

Isaiah handled the beginning sedation very well and we are hopeful he hasn't needed to be intubated. His oxygen saturation level did quickly dip to 80% right in front of us but was brought back up to healthy levels just using a mask of pure oxygen hovering by his face. The nurses assured me this is typical, scary none the less. Reminded me a bit of when he went into respiratory failure...but let's not go back there!

The sedation meds made isaiah very happy....and now we wait to see him. Continued prayers are appreciated. We so love you for them. <3

MRI day!

Today we are getting ready for hopefully a full but uneventful day. 

Good thing Isaiah slept pretty well! If you count a 9:30 bedtime at 2am wake up as "sleeping well". Whomp whomp.

That's ok. We just gotta get through today. At 10am, we head to Isaiah's first mri.  Well, for him to get sedated. We're expecting for him to go on the MRI table at 11:30 and be there for approximately one hour. If all goes well in recovery, he'll start his bimonthly bone treatment there and then they'll wheel him to day medicine (where we normally go for treatment).

Please pray that today goes smoothly. I didn't sleep the majority of the night worrying too much about the what ifs. I'm scared for the sedation.  I'm scared for them to see that he has something wrong in that noggin of his. I'm scared he's going to get sick from intubation since he'll be sedated.  Because my brain goes to scary places sometimes, I'm scared he won't wake up. Gah.

Today is going to be a long one. I hope to update here, but definitely will on Facebook.  Definitely expect an update here by tomorrow night as we'll meet with Isaiah's neurosurgeon tomorrow afternoon...aka we'll be getting the results of the MRI about 24 hours after it and set up a plan if it's needed. Ahhhh! 

Oh prayer warriors, we appreciate you. ❤️

PAMcation

Isaiah's next pamidronate treatment is next week.  Already? Yeah, I can't believe it either. Time is flying.  Next week also marks 18 months for Isaiah. AKA he'll be a whole year and a half. Wow!

I sent the above comparison to Dr. B. So much change! Look how much longer his legs look now.  No more cannula or pulse ox during the day so no more wires and tubes to contend with during daylight hours. Plus, check out that head shape!

Speaking of that head, Dr B is still very concerned about the size of it.  I think I've just gotten used to it; I feel like he's grown into it. Either way, in all honestly, I was stalling on scheduling the MRI, waiting because I'm afraid to do this during flu season, and figuring we'll be there next week for Pam, so I thought we could just schedule it in person then. 

But reality is that the sooner we do this mri, the sooner we find out if Isaiah has hydrocephalus, and if he does, the sooner we get the shunt surgery and stop the rapid growth of his head and possible pressure on Isaiah's brain. 

But he lit the fire under my butt. I spent way too much time on the phone and email yesterday, but it was to Isaiah's benefit. 

Isaiah's MRI is now scheduled for Monday.  This Monday.  Yup, 3 days from now.  If it goes well, we'll start his Pam treatment in recovery and then he'll be moved to the day medicine unit (where we normally hang out for treatment) for the rest of it that day.  If he has a tough go of it, but he's ok on Tuesday, then we'll do pamidronate Tuesday-Thursday.   We're hoping that after Monday, it'll be a typical pam week...as I recently started calling it, a "PAMcation", vacationing at the McDonald House and DuPont?  Sure, why not...Disney World would be better but we can make this fun.  We (almost) always do!

I've also worked out a formal appointment with a neurosurgeon for Tuesday.  So that means that we'll find out the results of the MRI about 24 hours after it's completed. Whoop whoop! 

We'll round this trip out with a check in with Isaiah's pulmonary team on Wednesday. 

We'll update as we can next week.  For now we are asking for prayers for Isaiah's good health, for things to go as smoothly as possible, and for us to get some answers.  

It's going to be a long weekend of waiting here!

Playtime

Gosh, playtime is looking so different now!  Mr. Isaiah has been holding his head up a lot more when he's sitting up so we have been squeezing in a few extra moments sitting here and there throughout the day...

We have to watch.  We have to remember that he has a moderate case of kyphosis, which means his spine is curved.  His kyphosis is in his lower back.  It was diagnosed at 12 months.  Dr. B believes it's from the weight of his head when I would sit him up before he was ready...but now Isaiah is sitting up on his own so I am hoping that means his spine is strong enough to support the weight.

So, we usually only put Isaiah in a chair to eat, but we've been extending his time no more than 10 minutes past that to give him some play time.  We've also added in an extra 10-20 minutes sitting in his boppy chair- a little ball pit time anyone?

I have a constant argument with myself if I am making the right decision to let him sit up...if the kyphosis gets worse, it could really affect his lungs...but if he is pulling himself up from the reclined position, it should be ok, because he's doing it.  Himself.  Hopefully it's ok.  I think so anyway.

It's a good conversation to have with Dr B when we see him next...

Besides this still pretty new position, we're also working on getting Isaiah to turn to his left.

Isaiah used to have a pretty severe case of torticollis.  His head was always facing the left, tilted.  We were so very focused on breaking that torticollis and getting him on his right did that.  He rolls onto his right side completely on his own because of it.  He actually sleeps on his right side too.  It's done wonders for the bulge on that side of his head...but alas, he now has a bulge on his left side of his head, since he's never on that side, so we're working on promoting him to roll onto his left.

He's already doing great and tolerating it well.  Hopefully just a few days of forcing the position with blankets and he'll be doing it on his own.

But for now, I am on break-watch.  Earlier this morning (the reason I am late posting), he rolled onto his belly from his right side.  Completely onto his belly!  This is big!  But it scared the poop out of him (and me!). He bopped his head on a hard toy and did roll over his right arm so I am trying to figure out if he's ok.  He started hysterically crying immediately and couldn't roll back over so I had to roll him myself.  He's randomly crying but it's snack time now....so I am off to feed my big boy and hope that is the reason he's crying.  Let's avoid a skull fracture, ok Isaiah?

Bah, one day we will be able to celebrate a milestone without a fear of it affecting his bones, right?

Excuses Excuses

I think every mom has (at least) one thing they do with their kids that embarrasses them.  So, I have a bit of a secret....Like, it's one of those "I-could-really-do-that-better-as-a-parent" things...

When I post pictures of Isaiah eating, they often look something like this...

"Look at my big boy feeding himself! He's so independent and wonderful."

But the reality of his meals looks more like this...

"Oh hey, I can never post these pictures to the internet, because this is embarrassing.  He would starve without me."

Yup.  He's a king and he knows it.

It's pretty ridiculous that I hand feed him most of his foods and I know it.  When Isaiah first started eating solids, he did a great job feeding himself.  But then he broke his arm and I had to help.  Once that healed, we had to start all over again and frustratingly, he started throwing the majority of foods.  I only ever put one piece of food in front of him at a time, trying to curb his food-pitching, but I always end up just popping it into his mouth.  Once we started progressing again, he broke his arm again, and this time I felt guilty because I felt responsible for the break.

I have lots of excuses:

- He needs to gain weight, not lose it, I have to make sure he is eating. (This is residual from his first few months when I was weighing him daily...I have to let that worry go.)

- We may have to go somewhere shortly, so I do it so we can get out the door faster.

- We're at someone else's house and I don't want him making a mess there.

- He's learning how to sit up and can't balance himself and feed himself at the same time. 

- We'll get there at some point, just not today.

- I can't stand the food being thrown everywhere.  It seriously gives me hives. ha.

So basically, if I/we (because Dave does it too) don't knock it off, I'll be meeting him in the cafeteria at lunch time when he is in kindergarten so that I can feed him...and that's not happening.

So, we're back to square one.  I've pulled out the Puffs again since they are little pieces.  I've been cheering and clapping like a maniac when he gets one in his mouth and I've gone back to lots of praise when he chooses to feed himself with other stuff like cheese puffs and crackers.  He's great with holding larger stuff and taking bites of it (until he decides to drop it to the floor after just two bites), but if it's something small, he waits for me to give it to him.

If you have any suggestions for how to help Isaiah be successful with feeding himself, I'd love to hear them! :)