Thursday, September 15, 2016

PRESCHOOL

Oh my goodness guys, so many changes in our life lately!

First of all, Isaiah officially became a big brother one month ago today!

And then today he became a preschooler!


Our adventures of getting Isaiah into preschool started in the late spring, where we began the process of an IEP for Isaiah.  IEP stands for Individualized Education Plan.  It's a very thorough document that a team of people (including myself) put together to form goals for the child.  Back in May I took him to a local facility to get tested and where I was asked a ton of questions about him.  He was quite uncooperative for his portion which in the end was to his benefit as it helped him to qualify to continue receiving physical therapy, occupational therapy, and speech therapy (he aged out of the Early Intervention program when he turned three years old). 


In July, we went over details and came to an agreement on the plan that the teachers and therapists put together.  The plan was for Isaiah to go to preschool after he turned three (and after we had his baby brother).  We're starting out with just two half day sessions a week and will hopefully move to three days a week next year.  While he is in school, he has a one-on-one by his side; I pushed for that one-on-one to be a nurse as there is no nurse on property at his preschool.  That aspect took some work on my part (and some extra time to set up) but thankfully after calling five nursing companies, we found one willing to take on Isaiah as a patient.  His nurse meets us at our house and I drive us over to school to drop them off and pick them up.



His nurse is super sweet and a mom of two as well.  She was a very fast learner with how to pic Isaiah up (since we still never lift him under his armpits), put him down, and dress him.

Today was Isaiah's very first day.  Honestly, I didn't expect it to be but everyone agreed on Tuesday so we went with it; it was a bit of a whirlwind.  The school I chose uses reverse mainstreaming.  60% of Isaiah's classmates are typical and 40% of the class has varying needs.  It's wonderful because it teaches children at a young age to accept different.


When I dropped Isaiah off, I stayed for a few minutes while the other kids came in.  His class is mostly boys.  They were all very excited to meet their new classmate and the coolest part is they saw him- I heard one asked about his chair but other than that they just saw "Isaiah", the new boy in class.  He was very excited by all the toys in the classroom and would announce when he saw something he liked ("XYLOPHONE!") and his friends loved handing him what he was asking for. I decided to leave when I saw the whole class had arrived but he was so enthralled that I just snuck out (and yep, totally bawled in the car.)

He has a speech therapist come pull him out of the classroom for his speech time and his occupational therapist comes in for snack time.  His physical therapist will also come in to the classroom.  His class includes music class and even swimming (!!!) once a month too.

To say that Isaiah loved it was an understatement.  His nurse told me that he spent most of the time smiling and laughing.  When I picked him up and we locked eyes and he just lit up!  He started excitedly waving at me and yelled "HIIIII" which just made my heart burst into a million pieces.  He was WIRED for hours.  When we got home, he inhaled his lunch and looked so very exhausted but instead of napping, he just excitedly rolled around in his bed giggling and saying his one classmate's name.


I do believe this was a good decision to start Isaiah in preschool...I was hesitant because he just turned three but Isaiah needs that social interaction.  It's just going to help him soar, I can just feel it.  I have to get used to such a quiet house for the time he is in school though...:)

Monday, August 22, 2016

Pam + OI Clinic

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

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


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


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

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

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

I spy Gavin! :)

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

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

Working on a craft after dinner on Tuesday at RMH


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

Monday, August 15, 2016

Isaiah turned 3!

This past Thursday, Isaiah turned THREE YEARS OLD! He sure has come a long way in his three years.


Last weekend, we celebrated his 3rd birthday with some of his aunts, uncles, and his grandparents.



Thanks to Icing Smiles, he had the most amazing cake ever!  To go along with the pirate theme that you may have noticed in his new big boy room (which I wanted to mention- I did add the links to everything I could think of on there), the cake that his baker friend, Rachel, made also had a pirate theme...


It was so creative, yummy, and huge! I wish I had my phone ready to take video when Rachel brought it in.  His little jaw dropped and his eyes were so huge. 


We were really grateful for the awesome cake!  Honestly, I have been having some feelings (I blame the hormones) of guilt that I couldn't throw Isaiah the big party we have thrown the past few years...but being so far toward the end of my pregnancy, and it being such a hot time of year, it would be been too much...especially since we had to leave for Delaware for his next pam treatment the next day.  So I was extra grateful to Rachel and Icing Smiles for making his birthday feel special.

This was the first year that Isaiah was really into opening his presents- like he understood it! He realized that there would be something fun under the paper and it was worth the time to rip at it.

video

He can't get enough of his pretend food.  (Both of these sets were made by Learning Resources and the quality is fantastic!)

Once Thursday came along, we had just a few more presents for Isaiah to open and he was absolutely thrilled again.

Thanks to everyone for helping us celebrate Isaiah, whether you were here with us or wishing Isaiah a happy birthday from wherever you are, your celebrating with us was felt.  It is so much fun to see Isaiah grow another year older. <3

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Sunday, August 7, 2016

Isaiah's Big Boy Room

With Isaiah becoming a big brother soon, it's about time that he moves out of the nursery and into his very own big boy room! I did a TON of changing my mind when it came to every aspect of this room...We wanted to create a space that would grow with him. We wanted to create a space that was accessible. We wanted a simple theme.  

Ready to take a tour of Isaiah's big boy Pirate room? 

This is what you see when you enter the doorway...

To the left is a shatterproof mirror at his height for him to play, brush his teeth, brush his hair, and just plain check out his handsome self. To the right (not visible in this picture, but is down below) is a cabinet that holds some of his clothes.  The bookshelf straight ahead holds his tshirts, onesies, and pants- all folded and accessible to him. The shark above the shelf is from Target (and so are the amazing blackout curtains! They are fantastic!)- both from the Pillowfort collection.

The lamp on top of it is from Disney World! One of our cousins interned there and had this very cool lamp that used to be in the lobby of The Boardwalk Resort.  How cool is that? Thank you again, Micheal!!


Under the window is his clothes hamper, which isn't a permanent spot quite yet. To the right is what I lovingly call "the parking lot". It's an area where we'll keep various equipment (instead of having it all over the living room).  The decal on the wall is from Etsy. 

And here comes a picture of what I think will be considered a controversial choice for a bed....


Isaiah now has a twin junior loft bed! This baby is fantastic! It is the perfect height for Dave and I to get Isaiah in and out of the bed and there's room for him to play underneath for now! 


We have the bed turned so the ladder is against the wall for now. Isaiah isn't able to sit up on his own yet and can't roll completely over- although the pictures are deceiving, there is plenty of rail to keep Isaiah safe and sound in his bed. 

When I've shown these pictures to friends with kids, they are clearly skeptical and worried. I'd never put Isaiah in a situation that is unsafe.  I think my friends picture/ combine their kids ability/mobility and Isaiah's fragility. At this time, he can not get himself anywhere near over that bed rail.  Once he shows any sign of being able or interested, we'll place a mattress (literally) on the floor underneath so that he will be able to transfer himself completely on his own. And someday his brother will join him in this room up on top. 

But for now, the underneath is Isaiah's favorite place in our house...but more on that in a minute. 


Oh, and notice there is the cabinet I mentioned, I have a tension rod in there with all of Isaiah's hanging clothes. 


I tried to get a picture of the room so you could see every angle. We've circled all around so you can see the doorway from the hallway in the picture below...


But as for Isaiah's favorite place? I've had some fun...continuing to overthink the accessibility. 

We're using the ladder as a place to house some of his favorite cars and trains, his piano is under there, and at some point we'll have something educational and fun on the back of the cabinet (a calendar maybe? I'm still deciding.).  On the wall is a 30"x14" magnetic board with some letters for Isaiah to have fun with and have a "word party". 


And then there is his toy chest that he can access from his Firefly Scooot. Some of his favorite books are up on top and he loves reading them under his bed. 


I hope to add some kind of rope or string lights under there at some point, I just haven't decided which kind yet. 


Isaiah is just starting to pick his clothes. The rod is a little high for the scooot but he's also getting used to reaching up again after a recent arm fracture so once he learns to trust his body, he'll be grabbing things off the hangers in no time. 


Big kid!


He can even put his own laundry in the hamper! I knew what I was doing picking a foldable hamper ;) (ha I totally grabbed it for the pirate design and this is a very happy accident!)


So there you have it! A look at Isaiah's new room! 


It is clearly Isaiah and Carl approved. :-p 

Monday, August 1, 2016

Bye Bye, Machines!


Remember Isaiah's beginning?  Remember when Isaiah was admitted back into the NICU (precautionary and because they knew him there) for his very first full dose of pamidronate (what many in the OI community call "bone juice") and he went into respiratory failure?  And then things changed.  He had to fight for his life, he was put on new supports...instead of just needing oxygen, he needed extra pressure to help him breathe so he was put on a bi-pap and then a c-pap and he wore that 24/7.  He went home on the c-pap, was diagnosed with severe obstructive sleep apnea...we had night nurses taking care of him, and we had a new normal.


and before we knew it, it was 6 months later, his obstructive sleep apnea was downgraded to moderate, and he was weaning off of that c-pap during the day (including nap time).


and then we weaned him off of needing to sleep with any supports because his apnea was downgraded again to mild...he just kept getting stronger. We said goodbye to the main c-pap that we had around...and only kept the travel stuff as a precaution (in case he got sick).  


But now?  As I mentioned in my last post, we've gotten the results of his recent sleep study....and his obstructive sleep apnea is gone.  He still has a mild typical issue (that I can't remember the name of right now) but Isaiah's doctor officially discontinued our prescription for the machines and we have newfound closet space (just in time for baby!).


Don't let the door hit you on the way out, Masimo and Trilogy. :-p

I have had a love/hate relationship with these machines.  They were so intimidating; all the beeping, tube switching, new things to learn.  They limited how we moved Isaiah.   Sometimes they held us down, making us feel a bit trapped. 

But..They helped us monitor him in ways I never expected to monitor my child...I could get a quick view of his heart rate and know if he was asleep, awake, hurting, etc.  They let us be at home, instead of living in the hospital, while he gained strength.  They helped Isaiah's body breathe efficiently while it got stronger, while he got stronger...


and for that we are eternally grateful. Every second that Isaiah was on those machines was worth it.  They brought us to where he is today.

Monday, July 25, 2016

An Update

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

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



Photo books are the perfect gift for any occasion.


It was an amazing trip!

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


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


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


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

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


Wednesday, June 8, 2016

Big Brother Isaiah

I shared some big news on Isaiah's Facebook page recently....




Sorry I am so slow to share it here....if you can't tell from the pictures, we were in Disney World! We took a beautiful 10 day trip (more details on that later) and then directly following that was a trip to DuPont for Isaiah's latest pamidronate treatment....life is just getting back to normal.

So, I kept this news a secret for a few reasons. I debated not telling you the reasons....but I am an over-sharer and I imagine some of you are thinking "what the heck?".  oh, and, part of the reason for the extra silence on the blog for the last 6 months?  I hate keeping secrets and was dying to tell you but my brain was taken over and I couldn't think of anything else to write about because I just wanted to shout "ISAIAH IS GOING TO BE A BIG BROTHER" from the rooftops.

Besides keeping this quiet publicly, we also kept this exciting news quiet personally with family and friends...just not as long.  When we were pregnant with Isaiah, we spilled the news at just 6 weeks because we were just so excited....but then when we finally hit 20 weeks, and were hit in the guts with words like "lethal", it made me regret telling everyone so early because it wasn't just Dave and I who felt punched in the guts and filled with worry...everyone else was scared too and it has always been heavy on my heart.

We knew we wanted to make Isaiah a big brother, but with that thought, questions tend to come, questions like...."but aren't you worried you'll have another child with OI?"

I can't simply answer that question with a yes or a no.   If God decided to bless us with another child with OI, we'd accept the OI, give s/he the best possible life, and love that child with all our hearts... just like Isaiah.  but the idea that another of our children would be going through what Isaiah goes through (given s/he'd likely have the same type of OI), tore at my heart.  I hate that Isaiah goes through the tough moments/days that he does.  When he fractures, my heart breaks....I don't like to say that because it sounds selfish to me and when it happens I need to focus on Isaiah...but when he fractures and all is said and done, the tears flow and I ache, sometimes for days on end.  Isaiah's OI is so out of my control and it can be hard for my mama heart.  Although it's not about me, it's something I thought a lot about when I first saw the word "pregnant" on the pregnancy test in December.

because every expecting mama should take a picture with 
the stick they just peed on when it says "pregnant", ok? :-P

Along with that brain dump of a paragraph, I am going to give you a statistic given to me by Isaiah's geneticist.  We have a 2-5% chance of having another child with Osteogenesis Imperfecta.  2-5%.  That's a really small chance, guys.

Knowing that statistic, I went to my pregnancy confirmation appointment in January confident everything will be ok.  I had Isaiah with me and he was rolling around in his wheelchair, happily eating goldfish, and playing on the iPad....I was in my usual weekday attire of sweats and a sweatshirt....not the best choice in clothes I know, but I go for comfort most days right now.  Dave met us in the waiting room after work.  Neither of us got a good vibe from the care provider.  To cut to the chase, she looked at Isaiah with such a look of disgust and asked me if I was sure I didn't want to "discuss my options" because "it looked like [my] hands were very full."  (Note: I do not fault the practice for this person and she was reported.)

Besides restraining myself from telling her to F the F off and a lot of $%&@*&$%& (Isaiah was right there, after all)....actually...in all honesty...I was in such shock by what she said that I just had to get out of there....I mean my God, Isaiah was in such a good mood, rolling around, being goofy. My hands are VERY FULL? What does she know????

Nothing.  

She knows nothing.  

Along with her lovely opinion, she also made it that I had to be seen by their High Risk practice... being labeled high risk means a lot of extra appointments.  and I really found the high risk label to be excessive so early on.  When I questioned her on it, as to "why" I need to go to the high risk office, she stated it was "to educate [me]".  Isn't that cute?  (I went into that next appointment ready to take heads off....but thankfully they were knowledgable of our history and it went very well).

Since then, every other staff member I've met has been very kind.  Some are inquisitive about Isaiah (since he's often with me for appointments), but I have no issue answering questions and showing OBs, midwives, and nurses that a severe OI diagnosis in utero is not awful like their textbooks taught them in medical school.


As Dave, Isaiah, and I were leaving that first appointment, I remember saying "We will tell no one. Not yet. I can't handle people we know reacting this same way right now."  I became very nervous that everyone would react similarly.

At 14 weeks, we went in for an extensive ultrasound at the high risk office.  We saw no signs of OI on the baby, and although that made me feel better, the doctors still wouldn't rule it out (2-5% chance, people).  We felt mostly confident though and decided to share our news with family and friends.



As the pregnancy progresses, it has felt different than with Isaiah.  I felt this baby very early on...17 weeks!  By 18 weeks, I could feel the baby basically bouncing off the walls inside of me.  Dave was even able to feel a few kicks.

At 22 weeks, we went in for our anatomy scan.  Along with them checking the sex (which we had the tech write down for us and place in an envelope...we really did find out with the balloon in Disney World 4 weeks later!), they took good hard looks at the bones.  At 20 weeks, Isaiah's leg bones were very curved and you could actually see fractures....there were no fractures to be seen on baby number two; everything was straight and bright white.  The doctor (who actually happened to be the doctor who first tentatively diagnosed Isaiah's OI) ruled out OI for our second baby.  Although we knew it, to have it confirmed made me feel a sense of relief.

We thought about sharing the news on Isaiah's social media pages that day, but then I started to over analyze again.  He gains new followers all the time.  People are often confused at first because of his size and call him a baby.  I was so afraid people were going to react like "already?" or say something negative related to his OI and then I'd go all hormonal-pregnant-mama-lion-mode and I just didn't feel ready...so we waited until our Disney trip.  We shared just hours after we found out we were going to have another little boy and I chose to share from Disney World because I'd be distracted and wouldn't have time to over-analyze responses.



But thankfully, we didn't receive one negative comment....everyone was so happy for us and congratulatory.  We have received hundreds of messages and comments across his pages full of so much love.  I don't believe I've said it, but thank you for that.  It meant so much to me (to us!) that so many of you are so truly happy for us.  Thank you from the bottom of our hearts.

With Isaiah becoming a big brother, we have some big changes in store in our house.  Isaiah will be moving to a big boy room!  I have been busy changing my mind over and over again about the right decisions on that and we'll be sure to share that when we've started!  (I just want to make sure I don't change my mind again.  #kiddingnotkidding)!  Along with that, I'll definitely be sharing details from our Disney vacation and our most recent pam trip. And I am sure I'll be giving you a brain dump or two about soon becoming a mom of TWO boys (and all the coincidences and such....like did you notice baby is due mid-August? We're on the exact same timeline as with Isaiah).

Ahh! Thank you again for your love, prayers, and congratulations. <3

Wednesday, June 1, 2016

FaceTime with Isaiah

oh Isaiah....he is so very obsessed with "talking" to everyone through FaceTime and phone calls.  He will be lying in bed and yelling "Talk to Nan Nan? Talk to Aunt Tricia? Talk to Grandma? Talk to Pop? Talk to Baba? Talk to Uncle Ben?..." he names everybody.  and it's always at an inconvenient time.

I figure most people aren't interested in facetiming and talking to Isaiah at 6:30am so every so often I will go to another room and FaceTime with him myself...

Peek a boo, mama!

I use it as a great opportunity for him to read to me (below he is "reading" Brown Bear, Brown Bear, What do You See?"), and talk about letters, shapes, numbers, colors, etc...


It was really such a fun thing to do...until he learned how to hit the buttons himself and call others when I am making dinner.  There's nothing like hearing the oxygen company's automated system on speaker while you are trying to make dinner.


So for now, I've disabled FaceTime and only enable it when it's an appropriate time to use it (aka when I can supervise 100%). but it sure is adorable seeing him love to talk to his extended family. <3

Wednesday, May 25, 2016

Go Baby Go

At the very end of April, I was stalking Facebook (as I do too often nowadays) and came across a post from UD goBabygo that they'd be having a free workshop only an hour away from us....all I had to do was fill out an application to see if Isaiah would be eligible.  I got a call not too long after that he was and that they had a car for him!


We headed east and spent the day with Isaiah's "pit crew" who helped to make Isaiah's car safe for him.  They added head support, a harness, an easy to push button to make it go, and so much more!


They worked so hard while we hung out!


Isaiah's crew did such an amazing job...from the head rest to the decorations!...the sad part is Isaiah has been deathly afraid of it.


and we were then hit with days upon days of rain which made it tough to go out and try it at home.



I did have a chance to show it to Isaiah at home on a brief sunny evening....but he just showed his fear again. :(  I thought maybe it was because he was overwhelmed by all the supports? I tried his one support pillow to see if that would make it better for him but....


It was a no go.  which is a total bummer because I'd love to see him cruising around in his very own beemer!  For now, I've hidden it out of his sight and am hoping some time away from it and growth will make it more enticing to him.

Besides Isaiah's "drama llama" reaction (as I so lovingly described it when we tried to sit him in the car again), the whole experience was amazing! and it's so cool to give Isaiah some motorized mobility! goBabygo is a fantastic program offering mobility to kids who need it, opening up a whole new world to them. :)