Thursday, October 31, 2013

Trick or Treat!

Happy Halloween from our little Mickey!

Predictable, aren't I?? ;-)

Special thanks to Ashley Landvater for making Isaiah's awesome costume!!  <3

Wednesday, October 30, 2013

Finally in the Swing of Things

Literally...but I'll get to that lame pun in a minute.

Today I had a few hours to myself so I spent them visiting some amazing people that I miss everyday- the students and staff at the school I've left to be a stay at home momma.  I love them and miss them and wish I could have caught everyone, but ya know, they have to teach and learn and stuff. :)

They all probably wished I had Isaiah's pacifier with me since I couldn't.stop.talking. :)

When I got home, Isaiah was nice and awake, so I decided to crowd our living room a little more and asked Dave to grab Isaiah's swing.  (See? Here's where the pun fits in. "Swing of things". Get it?)  The seat itself is quite the bucket so we had to add some rolled blankets, foam, and his new Hugga-Bebe support pillow (thank you for seeing this hard-to-get item for sale, Thera!), but he's in it!

 He's happy as a clam! (Are clams happy? I feel like that's a saying but now it sounds funny.)

I'm excited to see what his PT thinks; we meet her for the first time tomorrow.  She'll be here weekly; she'll be teaching me ideas to get Isaiah on his right side...

Except, oh snap, he's already doing a killer job doing that!  I'm hoping she has ideas for what else to work on.  It's possible I'll reach out to Isaiah's PT at DuPont for ideas too; he's so good with Isaiah.  

We did meet with his OT (occupational therapist) last Thursday.  She is focusing on keeping Isaiah's mouth ready for food.  She taught me to rub his cheeks, gums, and lips a few times a day.  Our favorite is when I rub my finger quickly on his lips. We both smile when it's time for that one. :)

I've already been working on everything else she wanted me to start. While we were still in DuPont, the speech therapist and lactation consultant had suggested we dip Isaiah's pacifier in milk/formula while he's eating.  We do that during his day feeds.  :)  

Alrighty, be on the look out for Isaiah in his first Halloween costume!  I'll try to post by tomorrow evening.  I imagine 90% of you could guess what he's going to be dressed up as this year.  ;-)

Tuesday, October 29, 2013

Mommy and Isaiah Time

We're officially in the swing of Dave working and Isaiah and I hanging at home.

I'm getting braver every minute.  Putting him in his chair on my own..
Look mom, I'm turning to the right on my own!

I'm holding him without his mattress more(!!!!)...

Hey mom. 


And now, right at this moment, he naps in my arms...

Updates about our meeting with his OT, our cloth diapering adventures, and some of our amazing angels are coming...just wanted to share that we're continuing to do well. 


Thursday, October 24, 2013

Going Places

2 weeks ago I showed you how Isaiah is able to be at home instead of in the hospital.  I mentioned that in the future I'd show you how we get back and forth to doctors appointments....Tuesday morning we had Isaiah's 2 month well visit so I pulled out my phone and snapped 639,173 pictures during our "getting ready" process.

First we gather everything we will need.  During this trip we just ran down to the local pediatrician so we limited it to our "diaper bag".  Here's the basics of it:

1) 2 extra shirts and some fun puppy slippers.  Everything's better with puppy slippers.
2) One of Isaiah's best friends. His pal Mickey stayed home for this run.
3) An infant sized resuscitation bag for one of those "just in case we need to perform CPR" moments.  (If we're prepared, we won't need it.)
4) Empty syringes to check placement if we need to give Isaiah anything down his NG-tube.
5) Wet Ones and sanitizer because I'm trying to be a clean freak. #nogermsaloud
6) Receiving blankets and burp clothes. Always good to have extras.
7) Bag of a billion diapers, a pack of wipes, and Desitin
8) Bag of random supplies- some "break box" cotton rolls in case he breaks when we're out, lotion in case I'd like to smell some extra baby smell (or ya know, if he has dry skin), duoderm/tegaderm (the medical tape that's on Isaiah's face), more syringes, gauze, a nose/booger sucker, and a syringe of a morphine dose in case of a break.
9) Our disposable (looks to be fisher price) stethoscope used to check placement of his feeding tube.

I forgot to throw a few things in the pile before the picture was taken... like Isaiah's emergency folder/binder.  In it I have his important doctor contacts, a list of his medications and immunizations, copies of his insurance cards, a sign to hang on his crib/bed if he's admitted to a hospital, and a list/description of his health history.

On a DuPont day (or a day when/if we ever decide to venture out), we bring a few other things along with us.

10) This is the suction machine.  It has a chargeable battery so we can travel with this and use it in the car if needed.
11) This is the suction tool that freaks me out- it's a catheter.  I can stick that tube in Isaiah's mouth or nose and get back to his throat if he has something blocking his airway.  We are supposed to use this daily in his nose to make sure the airway is clear for the pressure from the nasal cannula.
12) Packets of saline- If Isaiah sounds super stuffy, I pop one of these open and put a few drops up his nose.  He hates it but it helps to loosen the boogies so we can suction them out.
13/14) These are two other suction tools- one is a tube like the tip of a booger bulb and the other is shaped like a mushroom with a hole in the tip.  I prefer to use the mushroom; I feel like I get the most control without it being too invasive.

If we think/know we're going to be gone for one of Isaiah's meals, we bring all of this:
15) The feed machine- this is the exact machine from home- it's portable and holds a charge.  I bring the power cord with us just in case.
16) Syringes- 1 for checking placement (remember, I have the stethoscope to do that), 1 with morphine,  and some empties just in case.
17) Tegaderm and Duoderm- that's the tape that holds Isaiah's tubes on his face.
18) A spare NG tube- just in case Isaiah ever figures out how to pull his can be reinserted but if it'd be close to change out time (he gets a new one ever 4 weeks), I'd just opt for the new one.
19) A pulse-ox sensor- this has nothing to do with his feeding. I just take advantage of the spare room.  You can never have too many of these in case the one he has on his foot starts going wonky. (All the beeping will make me wonky....-er.)
20) A travel sized packet of formula.

I just realized I don't have a feeding bag or bottles pictured.  Probably because I used the one from the bag at the ER and then used it at home.  (note to self- replace the bag!)

Exhausted yet? We're not done.

If you think we forgot the baby. whomp whomp.

Once we know we have the little stuff, we grab the important stuff (Ya know, like Isaiah).
We place Isaiah on a nice clean mattress in the bassinet.  (Hopefully someday we'll be able to use his car seat and we can eliminate this step from the getting-out-the-door process.)  You can see his spare Trilogy machine behind the bassinet in the picture above.  The travel pulse oximeter machine is on top of the trilogy.

We make sure the sensor is on Isaiah's foot correctly because we don't need any extra beeping, especially while driving.

We power on the travel Trilogy and detach the blue circuit tube from his home Trilogy...

 and attach it to his travel one.

We grab 2 oxygen tanks (not pictured, sorry).  I usually carry them and Dave carries Isaiah along with his Trilogy.

Isaiah has been doing so good with his oxygen saturation levels that he doesn't have to be hooked up. He really only needs it when he's in a deep sleep.  We bring it just in case (especially since he falls asleep in the car).

We strap him in his car bed.
(I imagine you're wondering why on Earth we don't bring the car bed in the house, strap him in there, and carry him out.  (Because that'd be too easy! No, actually...) This thing is a real pain to install in the car.  It's just easier for our sanity to keep it safely strapped in and ready to drive.)

21) It's hard to see because of the black cover, but that's the travel Trilogy It has 6 hours of battery life.  We have a car charger and we bring the power cord along too to plug in when we're at our destination.
22) One of the two oxygen tanks (in its black travel case).  We have a tube all hooked up and ready to turn it on if Isaiah's oxygen dips.  The other tank goes in the trunk as a back up.
23) The travel pulse-oximater machine that monitors Isaiah's oxygen level and heart rate.
24) The car bed and Isaiah. ha.

Ok, we have supplies we need, we have the baby who is safely strapped in. Go!

This should be his Halloween picture.  He looked super cute in person; his eyes look kind of creepy now that I'm looking at it.   

So there you have it... the I'm-sure-I-still-forgot-something list of everything we need to travel with Isaiah.  We're hoping in the next few months we'll be able to cut some of this stuff out and make traveling less of a production.

Isaiah and I have plans to meet our occupational therapist this morning.  She'll be coming by once a month.  We're also having a new night nurse stop by to be oriented and meet our cute little Isaiah.  Plus we might have physical therapy starting today.

I bet his physical therapist will be happy to see this:

Look at me, I'm looking to the right by myself, mom!
I'm just hanging out on my right side, no big deal.

The company that Isaiah's physical therapist works for called yesterday...while I was sleeping.  I answered, and I know it will be Thursdays at 11:30, but can't seem to remember if she said it starts this week or next...I love that I talk to people in my sleep.  (I'm such a good multi-tasker.)  I've done this since I was a little kid.  Usually I don't remember the conversation though.

Anyways, today is a big day in the Martin household.  Dave is off to his first full day of being out of the house.  He had been working a few days a week out of the house and spending the rest of those days working from home scheduling and such.  Although he left me to Isaiah, it was really reassuring to have him here if I needed an extra set of hands....but I've totally got this.

Yup.  Totally.

Wednesday, October 23, 2013

Our First Fever

We did it.  We survived Isaiah's first fever.

Isaiah had his 2 month well-visit yesterday morning where he got attacked by nurses wielding needles.  I'm kidding, mostly.  I'm pretty sure he won't need counseling when he's older...

Here's Isaiah waiting to head out to his appointment of stabby doom.

Since you can't hold Isaiah down, we came up with a plan to have two nurses stab him at once. (Don't you love my wording?)  Dave held Isaiah on his pillow; he sat there hanging out with daddy when the nurses came on either side of him, counted to 3, and got him in both thighs.

Poor little guy.  Hopefully he's not scarred for life.

I hate needles.  I questioned whether or not I'd want him to get shots...but reality is, these diseases are coming back and I don't want my kiddo having to fight something else that could be easily avoided with a little stabby stab.

But you know what was nice about the whole thing?  The nurses stood there making a plan for Isaiah's future.  They were talking about making sure we schedule our appointments on certain weekdays (so they are working) since this double-team worked so well.  I totally stopped them in the middle of their planning to thank them and just bask in the moment...even if it was about the very thing I used to pass out over.

Now, I did like the double team because at this stage in his life, he won't remember having 2 women come at him with needles...but it kind of scares me for the future (I want him to like women, give me grandkids and all jazz).  I don't want him scared of needles like I've always been; he's going to have to get them frequently with his PAM treatment.  I've heard of Buzzy, so I might purchase one of those in hopes that it will make this type of appointment easier on him.

Anyway, besides the obvious dull pain you get with shots, there's also some side effects.  The doctor warned us that Isaiah might get a low grade fever and be irritable.

He was good until about 14 hours after the appointment.  The home nurse woke us at midnight to tell us that Isaiah was really crabby and that his heart rate was high.   When I came out, I noticed he was warm.  We took his temperature and it was 99.  Dave and I both stayed calm because we were warned of this.

Since this was Isaiah's first fever, I did what any mom would do; I made myself comfortable in his space with him in my arms.  He literally wiggled his way so that he was completely cuddled up against me as soon as we sat down.  (Seriously, melted my heart.)  We sat that way for 3-4 hours.  He was in and out of sleep.  He cried a lot.  His heart rate never got below 170, but when he cried it went well over 200 (That monitor is a curse can't help but watch it).  My gut told me not to worry, that this was just a side effect.

When his heart rate stuck at 200 and his fever increased to 102, we woke Dave back up and had him call the pediatrician.  (I had spoken to an OI momma that works in an ER who recommended Motrin, but with the nurse, I had to make things official with Isaiah's doctors).  The doctor recommended Tylenol since Isaiah is only 2 months old, so Dave followed doctor's orders and ran out to the store for it at 4am.  Once he had that in his system, his temperature dropped back down to 99 and he was finally able to sleep.

Then I was finally able to sleep.

Isaiah's temperature is now 98.2.  It's 11am; this house is full of a tired, recovering baby, 2 completely exhausted parents, and a sleeping cat that is curled up and snoring in the sun.

I'd say we had a normal night with a newborn.  I'll take it!

Before his appointment yesterday, I took a bunch of photos of us getting Isaiah ready for a trip out of the house.  Once I've recovered from the loss of sleep, I'll put together a post about how we get around town.  So expect that post in about 18 years. :)

Monday, October 21, 2013

Weekend of Smiles and Family

Isaiah is seeming to feel like his old self again.  He's back to sleeping well and being extra alert/happy when he's awake.

He spent some time early Saturday morning catching some Zs on his boppy on the floor.
Carl did a great job standing guard.  (And no worries, he's about 2 inches away from Isaiah's legs. I checked 4,978,032 times.)

He spent his late morning and afternoon with family.  He finally got to cuddle with his Grandpop Bernie.

He snuggled with his Aunt Tricia.

He passed out on his Nan Nan Carol.

He even sat with his Grandmom Anna...but I dropped the ball on getting a picture this time. Boo. I at least got one of her visit from Columbus Day. 3 generations...

On Sunday morning, Isaiah spent some time in his bouncy chair with his BFF Mickey.
Look, he's leaning more midline as compared to how he normally lays (on his left)!

When I hold him, I try to hold him on a little angle so he'll be stretching his neck out a little bit and getting off of that one area of his head. (Update: This morning, he's resting in his play pen while I hang out at the table next to him typing away...he keeps stretching his neck and turning his head to the right! Hooray to more progress!)

We're getting more adventurous when it comes to moving around the living room with Isaiah and his machines.  Dave and I have even gotten to the couch now!
(Look at Carl! lol)

We ended our great weekend with a nice bath and story time.  (Woah woah woah. He's already cheating on Mickey?)

He promptly fell asleep, monkey in hand, when the book was done. LOL.  

This week includes Isaiah's 2 month doctor appointment (and perhaps a switch to cloth diapers? They're in the washer now!).  Here's hoping he's braver than his mommy when it comes to needles!...and here's hoping mommy doesn't show her fear (or, ya know, pass out) in front of Isaiah.

Happy Monday, all! 

Saturday, October 19, 2013

My Apologies

Sometimes I use this blog to process.  Yesterday's post is an example of that.  I hope no one that read it was offended by my words.  Every baby gives their parents anxiety and every parent worries the what ifs.  I'm not sure if you can tell but...

I'm scared.  Some moments I am so gripped by fear that it's ridiculous.  Often times, my brain seems to go "worst case scenario".  I'm so scared that I am going to make the wrong decision and that decision is going to end my baby's life.  (Seriously, the kid hiccups and I hold my breath. #getagripmom)

Before Isaiah was here, we researched OI as much as we could.  We got advice from experienced parents and grandparents.  There's much debate on overfeeding, what kind of pain meds are appropriate, tummy time....I am constantly thinking of that advice when something seems wrong and I question the decision we've made.

As most of you said through private messages, emails, and comments, we're doing great.  Basically...I need to chill the heck out.  :)

I'm a good an amazing mom.

Ya know, last week Isaiah spit up.  Afterwards, I was so scared that it didn't all come out.  I was so busy looking for something to be wrong, suction machine at the ready, that if it weren't for Dave, I would have missed the fact that Isaiah was babbling.  He was fine.  He was happy.

Dave is so good.  He analyzes.  He stays calm.  He's patient. He's sweet.  He's such an amazing dad.

He's often reminding me to close my eyes and take a breath.  We're both doing a phenomenal job in helping Isaiah grow stronger.  Isaiah is ok.

The above picture is from yesterday.  Isaiah spent the majority of yesterday (and all of last night) recovering and sleeping (and I bet his nurse was grateful for the easy night!).  His heart rate has been back to his normals.  It looks like Dr. Bober hit the nail on the head; we pulled too far back on the morphine too quickly so we've rewound and we'll ween slower.

While Isaiah was recovering yesterday, 2 people from Early Intervention came and did an evaluation on him (mostly through observation and questions for Dave and I).  Because of his disability, he automatically qualifies but they still needed to do their assessment on him.    He scored where I expected- at risk/eligible for the intervention because of his gross motor skills and because of the results of the hearing screenings he's had (he was down at the bottom of the grading scale for that one).

However, the evaluator did a test of her own...

Decide for yourself. I know I have. ;-)

A physical therapist will be coming to our home once a week starting as soon as they can get someone. He'll also be seeing an occupational therapist once a month.

The plan is to work on getting Isaiah off of his left side (I've already been working on that and seeing the benefits as he's been stretching his neck out beautifully and he's starting to put himself midline. Hooray progress!) and get him eating on his own (once it's approved by the doctor).  There's another goal but I'm blanking on it right now.  I know I smiled when she said it because it's something we've already been focusing on.

On another front, Isaiah's found a new best friend.

Obviously Dave and I approve. (Let the Disney obsession begin!!!)

Thank you so much to everyone who has sent me messages and comments.  I've read them all and am taking them to heart.  Your support is so wonderful; it honestly gives me strength and clarity when I am bogged down by my fears.  I need to breathe, trust myself, and relish in the fact that our baby is here, alive, and amazing.

Friday, October 18, 2013

Our Normal

I feel like my head is exploding.  You know how seasoned parents always say how there's tough days with babies...days where you feel like you need a giant bottle of <insert your favorite alcoholic beverage here>?  Dave and I need two bottles.  Make that three.

Isaiah has been crazy fussy since Wednesday night.  I wish I could say I have the normal "new parent" fears but you know what? My kid has gone into respiratory failure.  He has a snotty nose? I have to suction so his airways are free for him to get the pressure he needs from the C-PAP.  He's hysterically crying? Sure, it could be gas, or maybe it's a broken rib.  I'm pretty sure he doesn't have a broken arm or leg because he hasn't self-splinted.  I call our local pediatrician for help? Instead of having us come in, they advise us to go to the ER.  Yeah, sure, let me bring my child that has respiratory crap going on back into an ER that's full of sick contagious people.  Yeah, that's brilliant.

I have Isaiah's heart rate constantly in my face.  I know what Isaiah's normals are.  When I see him sitting and sitting and sitting up at rates where he normally is when he's fussing? I worry. When I see him sitting at a rate he's normally awake/alert and he's sleeping? I worry.  Even if they are totally normal rates for any ole infant, I worry.

Yeah, NOT normal new-parent worries.

When my son cries? I can't scoop him up from under his armpits, place his head on my shoulder, and cuddle him close.  I can't rock him in my arms and hold him tight.


I could freaking break him.


Like I said, Isaiah's been fussy.  He's been having bouts of screaming his face off, pooping a ton, sweating a lot from all the's been an ugly time.  Could it be normal baby stuff? Sure, absolutely.  But the what ifs are a killer.

Right now, the what if is morphine withdrawal.  (Listen, to anyone with their "He should have never been on morphine", please don't. We're here now and that's all that matters, k?).  We were weening him; he was supposed to be off of it yesterday but we are back to the 4 hour regimen at the dose he's been on since Tuesday.  Instead of a ween that involves extending the time between doses (4 hours, than 8 hours, than 12, than no more unless needed for a fracture), we're now weening by milligrams or milliliters or something so he'll be on it for a few more weeks until he's down to zero.

I am praying that was the issue and after he catches up on his sleep, it'll be resolved and he'll be back to his normal smiling self.

On top of all that's gone on with that, it's been a month that Isaiah has had his NG-tube (feeding tube).
The NG-tube is the yellow tube going in to Isaiah's belly through nose.

So on top of the morphine-withdrawal, we added some more torture to our poor kid's day.  We pulled off all the tape from his face, yanked his old tube, gave him a bath (which, like any baby, he hates), and put a new one in.

Not before taking time to enjoy our baby tear/tape/tube-free.
(Note: this look lasted 10 seconds- enough for me to take a few pictures. I would never keep him off of his C-PAP. FYI)

I took pictures during the new tube insertion, but then I thought about it, who really wants to see that?


Nobody wants to see a beautiful baby crying, scrunching his nose trying to pull away from something getting shoved down it.  No one wants to hear him coughing trying to get it out of there.  No wants to be scared that maybe they placed it in his lung and not his belly.

Don't worry, we checked the placement (4 times) by testing the pH of the liquid that came out of it.  We also pushed some air in and heard the "woosh" sound you hear if it's in the belly.  It's also the same length it was last time- the little "18" is right at the tip of his nose.

But who wants to hit "run" on his food machine when you're not a nurse and are scared you could basically drown your baby if you did it wrong?

Ugh. This. Will. Get. Easier.

I honestly haven't taken a new picture since because we quickly got back to the crying/sweaty/upset baby and then to the passed-out/if-you-wake-him-I'll-kill-you baby....

But wasn't that picture of him without anything on his face beautiful? He's so amazingly beautiful.

Some days are hard.  Most days aren't.  Most days I thank my lucky stars that things are going as well as they are...but some days, ugh...I can't help but's 9 in the morning here, but it's 5 o'clock somewhere, right? :-P

Wednesday, October 16, 2013


Yay! We made it!  In and OUT of DuPont in one day! ha

Yesterday we had two appointments-; one with Isaiah's puminologist (Dr. Heinle)  and one with his geneticist (Dr. Bober).

I'm just going to give a quick summary because I'm typing one-handed- I'm using my other hand to hold Isaiah while he sleeps on his mattress in my lap (and while Carl nuzzles my head. ha). :)

-Dr. Heinle showed us the results of some testing they've done 3 times on Isaiah- once when we first arrived at DuPont in August, once when Isaiah was really sick and having trouble with his co2 level, and once before we left DuPont the last time.  
Time Warp.  This is from Sept 18th- one of his hardest days.

When you breathe, your chest and belly move in and out together.  In the beginning of Isaiah's life, his chest would go in when his belly went out.  He took really quick, shallow breaths.  Dr. Heinle showed us graphs of Isaiah's breahing...honestly, it mostly went over my head, but I gathered that Isaiah's breathing is improving every day!  There were some great changes in the graphs from August to October.  He's starting to get the correct chest/belly rhythm.  He's taking slower, deeper breaths.  

When we go back in November for Isaiah's next PAM treatment, they are going to perform this test 2 more times.  Once with his still hooked up to his C-PAP (Trilogy) machine and once without it (!!!!).  We're hoping to see him taking great breaths on his own.  We're hoping he'll be able to get off the machine, maybe only needing it when sleeping.

When it comes to the machine, I've learned something new thanks to one of Isaiah's home nurses.  There's a spot on the monitor that always says "RR 0 BPM" but over the past few days, different numbers are starting to appear.  Plus, this little blue circle pops up from time to time.  The nurse was telling me that when the person on the machine starts breathing stronger on their own, that "blue moon" appears.  This means that Isaiah is starting to take bigger, deeper breathes that the machine can register! This is wonderful! 

-When it comes to Isaiah's need for oxygen, Dr. Heinle officially gave us the go-ahead to try him on room air instead!  The oxygen is hooked up to the Trilogy.  Isaiah's oxygen level has been statting at 97% and higher on the lowest oxygen setting.  He was even on room air for his ER visit on Sunday.  Starting today, we're going to unplug the oxygen and see how he does! Cross your fingers! (Update: I need to be more observant.  Dave unplugged the oxygen 2 hours ago. Ha.  Isaiah has yet to go below 97%! And he's even been passed out sleeping. Go baby go!!!)

-Speaking of the ER visit, we asked about the "fluid" in Isaiah's lungs.  What was seen on Isaiah's lungs on Sunday is an improvement from his X-rays in September.  Back on the 18th of September, his lungs were scarily filled with fluid.  With the 2 X-rays after that (I think it was 2), and the 1 from this Sunday, there's actually improvement- much more air is seen.  Since Lancaster General didn't know he had fluid in his lungs before, they didn't know there was an improvement so they assumed this was new.  We're hoping that when he gets another chest x-ray in November that it will be filled with even more air.  However, there's a chance what we're seeing now isn't actual fluid at all; there's a chance it's inflammation due to the rib breaks and now that they're healing the inflammation is going away.  

Now on to Dr. Bober's appt...
-He's very happy with Isaiah's weight gain.  With non-OI babies, doctors like to see an increase of 10-30 grams a day.  With Isaiah, we want to see an increase of 5-10% (given how he won't grow as quickly as a non-OI baby).  He's right on target with that.  And actually, he's been trending more 5% so we are going to increase his feeds when Dr. Bober gives us the go ahead (probably next week) as our little guy is officially 9 lbs, 0.5 oz.  

-Isaiah has slowly been weening off of his morphine.  The end of that is in sight!  If he handles it well, he'll be officially off of it by this Friday!

-Dr. Bober asked us how we feel about doing another PAM treatment.  Although we're nervous, we want to go ahead with it.  It should be the week of November 10th.  We're crossing our fingers that he'll be in the NICU again (since they know him).  The plan is to do a whole "check-up" with blood work before PAM begins to check his CO2 level (which was tested at 45 yesterday- and that was with a nasal cannula, not blood, which to me means it's an even healthier level in his blood!).  They'll also do a chest x-ray before hand. His blood will be checked constantly for signs of what happened last time.  The PAM will be stopped the second anyone is suspicious that he's having another reaction.  Hopefully it was a once and done reaction.  

When we got home from our appointment, we had a little skype session with my family where I shared some of the tidbits in this blog with them.
My poor dad hasn't seen his grandson since early September because he had a cold that wouldn't go away.  To make it worse, they were on their way up here when we went to the ER on Sunday (They were actually waiting for us IN our house when we were told we were transporting to DuPont and we never even got to see them).  My bet is that my dad is in major Isaiah withdrawal.  Skype is a great way for him to see him until they can get up here- hopefully this weekend. <3

To end the day yesterday, I decided it was a good time to snuggle up.

Isaiah and I cuddled for 2 beautiful hours last night.  He completely relaxed and also spent some good time off of the left side of his head.  Now that Isaiah's respiratory needs are under control/improving, it's time to focus on getting Isaiah OFF of the left side of his head. It's flat. :(  I'm hoping my cuddling him will get him off of that side (he fights his way up against me when I hold him so I intentionally make it so he turns right for that).  I've also pulled out the z-flo and have been propping him up with rolled blankets when he's in his play pen.  Thankfully there's an OI parent that is a pediatric PT that has been giving me great advice while at home.  Early Intervention is coming this Friday to observe him and get a plan going as well.  

So all in all, yesterday was a wonderful one for Isaiah's outlook! Fingers crossed that we'll be able to see his whole face for Christmas? (Yes, please!)  He's continuing to grow stronger every day.  He's continuing to amaze everyone he comes in contact with.  We're so lucky.

This really didn't end up being the quick summary that I promised you, huh? If you know me that makes sense, I'm pretty long-winded haha