Wednesday, April 29, 2015

Follow Up Appt

Yesterday was quite a busy day for us.  We started out with Speech Therapy at our new weekly day/time, 8:30 in the morning...(he wakes up early I said.  We'll have been up for hours I said....and then this was the one day Isaiah slept in until 8. Cool.)  

After speech, we had our usual morning, followed by a little swing time on the back patio.

 

We enjoyed some lunch together and instead of putting Isaiah down for nap, he watched a little Disney Junior until it was time to head out to DuPont for our follow-up from surgery.  

We saw a lot of familiar faces in the halls...to the point that another family asked if we were celebrities. Ha.  DuPont is kind of amazing....the staff there gets to know their patients and families who frequent there, and yep, a lot of them know us by name.  

Dr C was pretty booked up yesterday, so to pass the time in the waiting area, I hooked Isaiah's Ipad to his stroller and he watched some Mickey.  (You see, my hope was that he'd pass out on the way to DuPont in the car...and he did...for 20 mins....so he got lots of screen time so that he didn't lose his exhausted mind.)


A nurse measured Isaiah's head- still the same exact measurement as before surgery.  (YAY!)  Once we saw Dr C, he felt his head, looked over his incision on Isaiah's head, and asked some brief questions.  He believes the shunt is working.  We now have a Fast MRI scheduled to see how well the shunt is working when we are back for Pamidronate (ya know, that treatment Isaiah gets every 8 weeks for his bones) and then a follow up with Dr C again to go over that.

We also heard from Isaiah's pulmonologist about Isaiah's sleep study.  Isaiah still have obstructive sleep apnea, but it's considered mild now.  In fact, Dr. H compared his sleep study from this year to last year, and the amount of issues he had have been cut in half, so he's made amazing progress; he's clearer gotten stronger.  His oxygen stayed at a healthy level the entire night.  If he didn't have a c-pap at home, Dr H wouldn't even recommend one at this level...but since we have one....we're recommended to put him back on it.  whomp whomp.  It's a bummer...but we're doing what we have to.  But Isaiah has been fighting bedtime like it's his job, so adding in the c-pap cannula or mask again.....bedtime sure is FUN! ;-) And, joy of joys, we get to go for yet another sleep study in September!  (Can I just say *#@* &#!@* &^(# &~&*!)


Still improvements.  Still smiling.  Let's just forget about that %$*@$@% sleep study until it's here. ;-)

Monday, April 27, 2015

Tidbits

Here's just a few tidbits of our last few days... :)

Do you know what's fun about puzzles?


Pulling them apart and throwing their pieces everywhere, obviously. ;-) (Good thing that puzzle only has three pieces.)  

Doing tummy time on an exercise ball with Mickey Mouse Clubhouse as an incentive.

This child will twist his body in crazy ways instead of just picking his head up...he can do it, he just doesn't want to.  (Come on kid, work those neck muscles!)

We've mastered sipping from the straw.  AHHHHHH


We stopped pushing daily (multiple times a day) straw exercises back at 13 months because we weren't getting anywhere.  I'd seriously work on squeezing his cheeks and other exercises that felt were a little crazy (but I am sure they work for some kids, just not mine).  We started with a new Occupational Therapist who was very much on the same page as us....he'll get it when he's ready, don't push, don't stress...In February, he learned to suck the top of my water bottle so we took advantage of that.  He'd been drinking from those little pureed fruit packs so that also involved sucking something like a straw....we'd randomly pull out a straw for Isaiah to try, and this past Friday, he just got it and he's been drinking from a straw ever since.  Yay!

We celebrated Isaiah's friend's first birthday on Saturday.  Normally, we bring Isaiah's high chair to friend/family gatherings so Isaiah has a place to eat...it's not quite travel-friendly, but it fit in the trunk just fine and worked for us.  We just looked like goofballs walking in with a highchair (hey, don't mind us, we'll just move right in.)  ;-) This time we tried Isaiah's Boppy chair...it's like a bumbo but more padded, comes with a tray, and attaches to a chair- perfect for traveling.


It was fantastic!  It worked out well that our friends had a padded folding chair (so he could rest his head on the padding when needed), but my trunk just got so much bigger, guys! Woo hoo!


Tomorrow we have Speech Therapy (that started right before surgery) and a trip to DuPont for a follow up with Dr. C to see how Isaiah's incisions are looking post-surgery.  We'll update on Wednesday. :)

Friday, April 24, 2015

Sitting Up

A late afternoon Friday post still counts as a Friday post, right?  It is still Friday, after all. Sorry for the delay guys, the second shipment of shirts came in and we've been busting our butts to get them packaged and shipped out before the weekend.

With some breaks for snacks....and what clearly looks like I'm teaching Isaiah to play "pull my finger"...


I'm not, I swear.  That's Dave's department...

Yesterday, Isaiah had his first physical therapy session since before surgery and it went really well (which was surprising given he refused bedtime until 9pm Wednesday night and was up at 5:30am Thursday morning).  We talked about how well Isaiah has been sitting up on our laps and that maybe it is time to pull back, give him some independence (with me hovering within inches), and let him sit up on his own.  I'll likely start piling pillows around him over the next few weeks and inching farther away, but it looks like he may be strong enough!  Isaiah's core is so much more stable now.


And he loves it!

We also worked on tummy time on an exercise ball yesterday.  And for the first time in his life, with a tiny nudge to the chin from me, Isaiah lifted his head by himself!  We couldn't get pictures because the whole routine required all hands on deck, but it's something that I want to work on every day in hopes that Isaiah will finally realize that he has the strength for this move.

And quite honestly, maybe it'll tucker him out, because this kid has gone the last 3 nights of refusing his normal bedtime of 7pm and not giving in to sleep until 9pm.  I refuse to give up on that dreamy 7pm bedtime, but thanks to his love of gagging himself to the point of puking if we don't stop him, he's been able to party outside the crib.  I know to ignore the behavior, but well, I only have so many crib sheets...let's hope he grows out of this habit, pronto.


If by party I mean, makehim watch Grey's Anatomy with me while I cuddle him into exhaustion...

;-)

Happy Weekend, kids!

Wednesday, April 22, 2015

Isaiah's Hydrocephalus

Since Isaiah's surgery, I've gotten a few questions about why Isaiah needed a shunt placed and how it's changed things for him.  We're only 9 days post-surgery, but I have already been able to see changes and wanted to share them with you.


Because of the shape of Isaiah's skull, his jugular veins aren't where they should be and have trouble doing one of their jobs- getting the spinal fluid out of Isaiah's head.  Because the fluid slowly backed up and accumulated, his body made extra veins to try to help it flow but they couldn't do the job, thus moderately enlarging the ventricles of his brain.  That extra fluid caused pressure on Isaiah's brain. 

A shunt was placed to help get the fluid out of Isaiah's head. Dr. Google has provided the next two images if you wonder about the shunt.  One of Dr. C's physician assistants showed me a shunt like this:


The Ventricular Catheter is the part in Isaiah's head.  There are teeny tiny holes all around the end of it to slowly collect the fluid.  The shunt valve is something she mentioned to me...I blocked her out a bit when she was explaining about it (it freaks me out still, to be honest), but if I remember right, that's what they'll use to test it at first if they think there is a malfunction in the shunt at any time.  That part kind of bulges out of his head a bit (kind of like how Isaiah's port bulges out of his chest) under his skin/hair.  From there they threaded the Distal Catheter down to his abdomen lining (there is another incision where they cut into the lining of his abdomen to place that extra tubing). See below.


I swear, that threading of the Distal Catheter is what hurt Isaiah the most out of this whole thing, especially in the neck area. Actually, I was afraid that they broke his neck in surgery because of how he responded (and still responds, honestly) when we put our hands there to lift him....remember, we don't lift Isaiah under the armpits like a typical 1 year old, we lift behind his head/neck and bottom. I've never been more tempted to try to lift him under the armpits than I've been lately because of his response when I put my hand behind his head.

Anyway, one thing you sometimes see in young babies with hydrocephalus is that once they have the shunt placed, their enlarged head gets smaller....that won't be the case for Isaiah.  His head measures the same as pre-surgery and will likely stay at that measurement for some time...if all goes well, it'll be years before his head grows more.  This is because his skull is hard.  Thanks to the shunt, his ventricles should be smaller now and his brain will fill in the now empty space as he grows older.  I feel like I could make a joke here, but all of this medical stuff hurts my brain and I have nothing.

His soft spot before surgery feels remarkably different from before.  It didn't bulge out of his skull, but now it dips in (in a kind of I-can't-quite-touch-it-yet kind of way).  

The biggest thing is that his veins are changing.  I feel like the veins on his forehead are becoming less noticeable (unless he's sitting up and working hard);  The veins on the sides of his head used to pop out crazily- It could be the fact that we haven't cut his hair in months (and months), but we noticed that those veins are completely sunken in now.  

I tried to get a before and after picture of the side vein popping; this is the best I could find.

The past few days, I've noticed that when Isaiah is on his pulse ox (he still sleeps with that to monitor his oxygen saturation while he sleeps), his heart rate has been lower.  He's had the same baseline heart rate for the last year...but it's decreased a bit the last few days and I think that's related to the pressure in his head being relieved (and that decrease is a good thing!).  If that pressure was causing him pain and discomfort, it shouldn't be anymore, and that's evident in the heart rate numbers we're seeing nowadays.

____________ 

Ok kids, enough talk about Isaiah's hydrocephalus for now. <3 

Can you believe Wishbone Day is only 2 weeks away?????? Yeah, me neither.  

If you are new to the blog, Wishbone Day is celebrated in the OI community on May 6th each year.  It's a day of awareness of Osteogenesis Imperfecta and all you have to do is wear yellow and spread awareness of OI.  This year it is on a Wednesday, right smack in the middle of OI Awareness Week.  

During OI Awareness Week, I am planning to do a little Q&A series called OI Want to Know.  Do you have questions about what it's like to care for a child with severe OI?  I want to answer them and any other question you may have and basically nothing is off limits...OI, motherhood, my emotions, our family life, etc.

If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

I look forward to posting the answers to your questions during OI Awareness Week so get to asking. :)

Monday, April 20, 2015

What Surgery?

Happy Monday! Sorry I've been quiet on the blog, last week I just needed some time with Isaiah and Dave...and my bed.  Surgery, and the worry that comes with it, is mentally exhausting on a momma! 

Can you believe it was a week ago today that Isaiah had his shunt surgery?


If you don't follow on Facebook, you may not know but we did break out of the PICU of DuPont on Tuesday afternoon.  We were moved to Isaiah's own room in one of the general wings of the hospital.  We had a long night there as Isaiah's apnea decided to make an appearance...he was tired so he was sleeping hard, and because of his surgery, he was staying on his back (and I've learned his apnea is positional, meaning that he breathes better on his sides).  The nurses were talking oxygen and I wanted nothing to do with that until I first tried what I knew worked (rolling him onto his side).  The process didn't make Isaiah happy, but once he was on his side he was breathing clear and there were no more beeps for the rest of the night. I kind of have this fear that if he has to go back on oxygen that he won't be able to come off of it.  It's silly, and obviously if he truly needed it I would never stand in the way of the professionals, but it felt so good that I do know my baby...to see his oxygen stay at 98% the rest of the night.

This picture was taking after we were told we could discharge from the hospital and they let me take all the cords (the leads and pulse ox) off of him.  He was a free man! 

Wednesday morning, I was nervous that we'd be told we had to stay longer because of Isaiah's apnea episodes, but nope, we were talking discharge as soon as Isaiah was up for the day.  One of Dr. C's PAs came in to check Isaiah out and he was hanging out in the swing that they provided us in Isaiah's room.  I had asked for a bouncy chair or something to put him in to get him out of bed and the nurses happily helped us out.


He was suffering from a bit of a headache when she came in so we talked pain management and discharge!  I couldn't believe it; it was only 9am!  Once Isaiah had his medicine, the ball got rolling for discharge. 

The thing about discharge is that it's never a simple process.  Everybody has to sign off on the idea of Isaiah leaving, plus since his port was still accessed, they had to deaccess him.  I compare it to taking an IV out except it's just not as traumatic...the worst part is getting all the tape off of his chest and then just pulling the needle.  He doesn't even usually need a bandaid, just a quick cuddle from mom and putting put in his car seat are his clues that we're busting out and he gets very happy.

Sometimes the discharge process can take hours...especially if the doctors on the floor are doing rounds, but Dr C's PA expedited the whole process and we were on the way out the door by 11am! 

Isaiah slept the entire car ride home (an hour and a half).  I brought him in the door, put him in his crib because he was still exhausted, he cried for 10 minutes, and then passed out for another 3 hours.  I unloaded the car and also passed out.  Hospital stays are exhausting.  

When we got home, I felt like I had just run a marathon...in the shape I am in, which is not good ;-) ...I couldn't believe we were home.  This experience was so easy!  Everything went as it should!  What a blessing!

Isaiah ended up partying during the night Wednesday night (thanks to his 5 hours of sleep during the day), but we were back to our normal schedule come Thursday morning.

I gave Isaiah a bath that he was in desperate need for, and after that Carl wouldn't leave him alone.  He gave Isaiah's incision a good sniff (brains!), and laid next to him for quite some time and allowed Isaiah to pet him.  Isaiah has a tendency to pull Carl's hair, and Carl is always so tolerant, but this time, he was purring while Isaiah's pet and pulled...He missed him! He really did.


Our lives quickly went back to normal, just with some medicine thrown in the mix to make sure he wasn't in pain.  Isaiah was playing, back in his Scooot, and eating his face off.


We've been looking for improvements in Isaiah since the surgery.  We know the shunt is working to get the spinal fluid out of his head because the top of Isaiah's head now has a giant dip in it where his soft spot is (the soft spot on a severe OIer typically takes much longer to close than someone without OI)- good thing he has all that hair!). 

His eyes have always done something called "sunsetting" or "sun downing", that's when you can see the tops of a person's pupils.  The thing about it is that it's an OI thing and it's a hydrocephalus thing.  The doctors were hoping that would stop for Isaiah after the shunt was placed and the pressure was off of his head but alas, still sunsetting, as you can see below (try not to be distracted by the adorable thinking face he's making)...


But he has been playing with more purpose.  We're not sure if it's his age, but he has been making those cars drive and throwing them much less than he used to.  We don't know if it's a developmental thing of a less-pressure-in-the-head thing, but man, we'll take it.  

___________

This weekend was amazing.  We spent almost every daylight hour outside (in the shade of course ;-) He gets his skin tone from his momma after all.) grilling, getting the remnants of fall/winter outta there, adding a third raised garden bed, started a more permanent set up for Isaiah's portable hot tub (for water therapy, once his incisions have healed), and started cleaning out/organizing the garage (um, it's exploded and if I go in this week and you don't hear from me, send in a search party)...all while Isaiah played happily nearby or just laid in his play pen (our kid has a thing about grass still) listening to he birds and airplanes...both of which he can now name! Although airplane and eggplant sound remarkably similar...


It's amazing to see how resilient he is.  


What surgery?

Monday, April 13, 2015

Surgery Complete


If you're not following on Facebook, you may think isaiah is going through the longest surgery of all time. :-P Isaiah's surgery lasted about an hour and a half. Dr C met us in the waiting area and told us that it all went smoothly and that we could see him shortly in the PICU. The wait to see him was maybe 15 minutes? But it felt like 15 hours. The patient liaison brought us into the picu to wait in a waiting area- we passed by isaiah in his room with probably at least 10 people with him. It took all I had not to veer into that room. 

We didn't know what to expect when we were let in, but thankfully Isaiah needed no breathing support and was already looking like himself, just seriously grumpy and confused. He did a lot of grumping throughout the day,a little playing, and some on and off sleeping. 

He did a lots of moaning like he does when he's hungry but he had to steer clear of eating for a while. I held him on his mattress on my lap for about two hours which quieted him. Although it calmed him, it also may have helped spike a very high fever....104 at one point!  I kept commenting that he seemed hot, but we honestly thought it was related to the environment- the room was hot and he was all covered up.  Once his temp was read, we quickly got him back in bed and striped of all extra covers and padding.  Being off of me helped too and his temperature quickly dropped back to normal. (So if you notice that he is blanket-free in most of our pictures, now you know the reason. I promise I'm not neglecting him and leaving him to lay there cold :-P )

It took some time before they would let him have any food or water but 3.5 hours post op, they allowed some water. We first offered it by dipping his pacifier in a cup of ice water. He went crazy for that paci!  He just kept repeating "go!" for more water. Soon we were able to give him an ounce in his sippy cup and he guzzled it down. We waited a bit and gave another ounce. Waited a bit, another ounce.  Then he was cleared for food. 


He wasn't really in the mood for much, but throughout the rest of the day, he nibbled on a few crackers, had some peanut butter, a couple spoonfuls of pureed fruit, and half a nutrigrain bar.  We had tried giving him some favorites- mashed potatoes, corn, and chicken but he didn't eat more than a bite or two of each.  

So far he's refused milk and any more water (besides some sips here or there) so he's staying on IV fluids for now for the nourishment. 

Tonight Dave is on duty.  I am getting a night's sleep at the McDonald house because he has to head back home to head back to work so he's giving me the night off to rest up. 

Honestly, in terms of pain, today was the easy day. Tomorrow and Wednesday will be the real challenges as the anesthesia will have completely worn off. 

Hopefully our Super Isaiah will handle it as well as he handled the surgery. 


Thank you so much for your love and prayers everyone. To know so many are praying for our baby.....it's incredible. We know he got through today thanks to his strength and also because of you.  

You believe in Isaiah and we love you for it. 

Good night...hopefully! ;)

Shunt Surgery In Progress

Waiting.

Bah.

I very much dislike waiting. 

I made us wait a month for this surgery for a few reasons (scheduled Pam, sleep study, Easter...), we spent the night across the street from the hospital at the Ronald McDonald House.

But now we're here.  At A.I. DuPont Hospital for Children.  Waiting. 

What are we waiting for momma? (Look at those shocked eyes!)

We waited for pre op (at 6:30 in the morning so pardon all of the exhausted faces)..,


We waited in pre op.

Sesame Street helps to pass the time. 

We played while we waited. 


But then it was time to be separated. 

Before we knew it, he was on his way to surgery...

And now we wait for our baby, separated from our baby, from our heart.

We've already received one update, surgery has begun and there is a slight change in plans- his shunt will be placed on the left side of his head instead of his right like planned. 

We're so appreciative of the love, messages, and prayers we've received.  Please keep those prayers coming.  

<3

Sunday, April 12, 2015

20 Months? How'd I miss that?!

Guys, my brain is mush! I have been so preoccupied making sure that we have everything we need for this DuPont trip that I missed Isaiah's monthly birthday! Normal people stop celebrating them after 12 months anyway, but seriously, 1) I'm not normal and 2) when you are told your kid might die when you're pregnant you have a tendency to want to celebrate his life every chance you can get. Basically you people are lucky you don't get weekly updates.  Ha 


At least I got some pictures of Isaiah yesterday!  He is 20 months old! This month his vocabulary has blossomed big time!  He's added some crazy words and phrases like okie dokie, apple, and even eggplant!  We're pretty sure he knows his BFF's name, Gavin.  He can label anything that is blue with its color name and we're hoping to add green to his vocab soon. He is a mimicking machine.  He just started speech therapy too and we're hoping she is wondering why we've started with her. :)


He is still rocking his 3-6 month clothes...pants need to go up a size but honestly, I'm pushing it to summer so he can rock some capris. ;)

He's just shy of 16 pounds and a little over 25 inches long. 


And in case you haven't been paying attention (what kind of stalker are you, geez), we're checked back in to the McDonald House across from Dupont. Tomorrow is the day.  Isaiah will have his second surgery; this time to place something called a VP Shunt.  The doctor will make two incisions, one in Isaiah's head and one near his abdomen. He'll insert the shunt in his head and thread it down to the lining of Isaiah's stomach to drain the excess spinal fluid in Isaiah's head (aka hydrocephalus). 

We brought Isaiah's bathtub and accessories with us today so we could give him a good long bath tonight...


And now as I type, he is asleep for the night. Even though he's been sleeping through the nights, we'll be waking him at midnight for some milk to make sure he's as full as he can be before the cut off for surgery. 


We are due at the hospital bright and early (6:30am.) and we assume surgery will begin around 8am. 

We will do our best to update when we can. 

Please please say a prayer (or 5) for Isaiah, for his doctors, and for us. Send us as many/much positive thoughts, pixie dust, prayers, and love that you can. We're hopeful Isaiah will get through this challenge like all the others, with complete strength. 

He's got this. 

We've got this.

We believe in Isaiah. 

Friday, April 10, 2015

Friday Already?

This kid.  


I gave him a peanut butter egg after lunch and I swear he was still on a sugar high at bedtime.  He was up two hours past his bed time playing.  So much energy; it was insane.


Although I do understand, he did have an exciting day.  We had PT yesterday that brought the Wheelchair rep back to our home again, this time with two wheelchair demos.  

On the left is the Quickie X'Cape and on the right is a TiLite Twist

Even though it was too big for him, Isaiah did extremely well in the TiLite Twist.  He was trying to move before we even had him strapped in and once he was strapped in, he flew across the room.

video


We'll be able to keep the wheelchairs over the weekend.  We'll be taking two cars to haul them and our normal stuff to the Ronald McDonald House/DuPont on Sunday as the Rep needs the TiLite back by Wednesday (and since he's going to be at DuPont on Monday, it just works out...we may need two cars anyway as Dave will have to head back to work midweek).  We do believe we found a winner with the TiLite.  It needs some extra supports but we'll be spending our surgery time looking over the TiLite on their website and getting our ducks in a row.

Speaking of the surgery, we got the call yesterday that Isaiah's shunt surgery (to alleviate his hydrocephalus) will be the first case on Monday morning so we will have to arrive at the hospital at 6:30am, I assume surgery will begin at 8am.  So if you need me, I'll be hyperventilating in a corner until then....

Just kidding.  We're keeping busy.  Isaiah's buddy Gavin and his family will be stopping by to try out the chairs.  We're visiting my old place of work (but trying desperately to avoid germs), celebrating a friend's 3rd birthday, and packing.  I imagine we'll be driving to DuPont before we know it.

On our 7 year anniversary.  Yup.  We will be having our anniversary dinner at the Ronald McDonald House....how romantic. :-P

________________

Going into this weekend, we're asking for prayers for Monday.  We're asking to please pray for Isaiah, for his surgeons and nurses, and for us.  This is a standard procedure for Dr C, which helps calm our fears a bit, but it's not for us.  Isaiah is strong, his breathing has improved so much, but I worry about the fact that he's going to be intubated and it'll somehow make his progress go backwards.   He's added so many words to his vocabulary just in the last week (okie dokie, bed, bath, apple, eggplant) and I worry that could be affected in a negative way.  I worry that since he'll be in the PICU post-op, I'll have to fight again and I hate doing that.  

So please pray, send good thoughts, pixie dust, and whatever else you have for our Super Isaiah.  <3

Wednesday, April 8, 2015

Sleep Study Experiences

Sigh, my nerves are through the roof.  Less than a week until Isaiah's surgery.  I've had a hard time posting recently; part of me wants to completely let go on here about it and part of me just can't because it's depressing and I personally don't go on the internet to be depressed.  I go on for funny cat pictures and adorable pictures like this...  

I love my Baba!!!

Before Easter, I last posted at 2am during Isaiah's most recent sleep study.  This was his third one.  He goes through them to check on his breathing while he sleeps.  

I'm actually pretty lucky Isaiah is so young when he goes for his sleep studies because I get the bed.
Usually the parents get to sleep on that luxurious couch over on the left.

He was diagnosed with Obstructive Sleep Apnea after his first study.  Basically, he'd stop breathing while he slept (I feel like that sounds scarier than it is maybe....Obstructive Sleep Apnea is very common), it'd wake him, and he wasn't get a restful sleep- the c-pap made breathing easier for him so he had to sleep with it.  It was severe back then but improved as per the results of his second one.  Between his second and most recent study, we've seen great improvement in Isaiah.  I learned that his apnea seemed positional, meaning that whenever he spent the majority of the night on his back, he had more apnea episodes so we would really push him to sleep on his side.  He always sleeps with something we call a pulse ox (it's a sticker we attach to his foot that connects to a machine that measures his oxygen saturations and heart rate) so we can monitor things.  If he's having an apnea episode, his oxygen drops and the machine beeps.  It used to beep a lot.  Nowadays it only beeps when he's rolling over and the sticker is falling off.  

Here's a picture of Isaiah during his sleep study.  They attach what seems like a million wires to his head, face, and neck.  Three also attach to his chest (they call them "leads").  He gets a pulse ox on his foot and a thin cannula under his nose that measures his breaths- I believe it measures the CO2 he is breathing out.

Because I didn't sleep a wink during the previous sleep study that I did with him, this time I attached yet another wire to him, his at home pulse ox (I am crazy; I needed to see his oxygen saturations and they don't have a monitor in the room for the parents).  I should have used a new sticker- it wasn't attached right and beeped a million times.  It had me up all night worried because he never beeps; I knew it was wrong (I could tell by his breathing) but I didn't want to reposition it because that would wake him and I didn't want to wreck the study.  I ended up turning it off when I started that blog post.

I had asked the woman who set everything up (she's a respiratory therapist) to please end the study as soon as she had enough data, even if she'd have to wake us, and thankfully she did!  I seriously just wanted to get home.  We were able to end a whole hour early compared to Isaiah's previous studies (which made sense since he went to sleep an hour earlier this time).

At first he was pretty peeved to be woken up, until he realized it meant we were outta there.  Seriously, his butt hit the stroller and he was like "go, momma".

The techs aren't supposed to tell us anything but it never hurts to ask... ;-)  So I did, especially since I was having trouble with our machine.  She said it was definitely my sticker having issues because her's read that Isaiah's oxygen saturation stayed at 98% most of the night (safe for Isaiah is anything above 95%).  She saw a dip once to 91% but it was due to his rolling over- the sticker lifted off his foot a bit (I then fixed it as I had been checking on him) so it was marked as inaccurate.

Sleep apnea is common, especially with those with OI.  I imagine we may be looking at it again in the future but I am praying that Isaiah's doctor's interpretation is as positive as the RTs...we should hear that during our next Pam treatment (unless for some reason he stops by next week after surgery).  If they are, we can hopefully officially say goodbye to the c-pap and everything with it and finally officially end that chapter of Isaiah's life story.

Monday, April 6, 2015

Easter 2015 Recap

Easter 2015 is now just a memory and it surely is a wonderful one.



We started out with a hunt for Isaiah's Easter Basket...
He loved it.  He had fun opening the eggs, pulling out the notes, and hearing the rhymes.

But his favorite part was probably seeing his Easter haul.  This kid is spoiled.  A friend of ours added to the pile with that awesome basket with Mickey Mouse inside.  


Later in the day, we made our way up north to celebrate Easter dinner with family.

We brought the Scooot with us, and are so glad we did.  Isaiah was so happy to look around and discover things himself.  I've never seen him move so fast in that thing.


It was wonderful to see cousins interacting...


We tried to get a group picture of the kids, but well, that was a bit of a flop, as you can see by Isaiah's face...(but his cousin Leo was totally into it!)


We had a number of rousing games of Upper Upper...see my previous post for an explanation of the game.


Dave got creamed by cousin Dominic (and it happened so fast that I missed it!)  Uncle Andrew was crushing all the kids.


Isaiah included.


It was a wonderful day.  To be surrounded by family is just amazing.  So much love in one day.  We missed the family we couldn't see, but were glad to see those that could make it.

Easter was a wonderful distraction from all the hospital time we put in last week and will put in next week.  Later this week I hope to post some details from the sleep study and my appointment with Dr. C.

We hope you had a wonderful weekend as well. <3