Isaiah had his first water therapy session this past Friday. I may have lost sleep for days beforehand worried that he'd hate it, or worse, that he'd have trouble with his breathing (Dr. B. mentioned to be careful as the water does put some pressure on the ribs.) and that I'd have to hook him back on the machines.
But he LOVED it. And when I say that, I really really mean it.
His PT is the same person that does his PT from Early Intervention so he was very familiar with those involved. She comes from Schreiber Pediatric Center and I've always heard such great things from them and was so thrilled when I heard they have a therapy pool. The water was fabulously warm. There's a wheelchair ramp that goes slowly into the water. I walked down it holding Isaiah and he first touched the water with his toes. I felt him tense so I stopped a moment and then stepped deeper in again and he smiled. We stood and waded in the pool for a few minutes and then Isaiah's PT pulled out a really cool therapy mat. She was able to lower his legs in the water and promote his moving his body on his own. After some time on the mat, I held him in the water in front of me and he literally floated, splashed, and stretched more than I've ever seen him.
Oh, and his breathing was totally beautiful.
I can't wait until Isaiah's next session. This is going to make him so much stronger.
When his PT was at our house for his Early Intervention session, we talked a lot about how wiggly Isaiah has become.
In some instances, like in his chairs, it's honestly dangerous and scares me sometimes...so we spent our most recent session working on how to buckle him in (usually the receiving blankets used as rolls and padding were in the way, and it didn't matter because the kid was basically a statue).
Snuggin Go to the rescue! (Thank you Jolene and Silas!)
It works perfectly and Isaiah really loves it.
The rest of the session was spent working on Isaiah sitting UP!
We're practicing this many times a day, every day, hoping this will give him the strength to begin to sit up on his own.
Isaiah is really making progress. We are too. We're starting to get more determined and brave with him. After getting great advice for other OI moms, we did this....(can you tell what's different?)
He's in a ONESIE! NO SNAPS! Hooray, now we can get those goofy onesies that have ridiculous sayings on them like "Pants are overrated".
This weekend was amazing. We hit up Home Depot, spent time outside walking and planting flowers with Isaiah, and spent time with family. We also celebrated our anniversary.
We went to our favorite restaurant in Lancaster, El Serrano. This was our first real sit down meal with Isaiah in tow. (Second if you count the buffet we enjoyed when the electricity went out and we stayed at a hotel.) We had plenty of toys with us, and may have delayed his nap (in hopes that he'd pass out while we ate). They gave us the perfect seat, out of the way but in view of lots of tables and people walking by. It was perfect for our little people-watcher.
Isaiah didn't get antsy until we had started on our main course so I took him out of his stroller to cuddle.
It's ok, El Serrano's food is great reheated. :)
Isaiah ended up falling asleep in the car so we decided to run to the local BJs for a few things. While at a red light, Dave looked back at Isaiah in the mirror and smiled. He reflected on our weekend while I totally stole this picture because he melted my heart.
He started talking about how lucky we are...how far Isaiah has come...how strong Isaiah continues to become...how amazing Isaiah behaved with family and today at the restaurant...
SOOO LUCKY! <3 Sometimes it's hard for us to wrap our brains around everything that has happened to our lives thanks to Isaiah.
In case you were wondering, ours BJs trip was fabulous. Isaiah was passed out asleep the entire time.
This has been a huge month for Isaiah. He has started to size out of his 0-3 clothes. He's been off of his c-pap now for 3 weeks.
He's touching his toes!
He's mastered rolling on his side and has shocked himself by rolling onto his belly twice.
8 months. Wow.
Today we are off to Isaiah's first water therapy session! I'm hoping to have an update about that next week along with some fun from PT.
On a side note, Dave and I will be celebrating our 6th wedding anniversary tomorrow. I love you, hubby. I can't believe you've been putting up with me for 6 years. Here's to 60 more. <3
Holy exhaustion. The older Isaiah gets, the more pooped he makes me! Isaiah has been rolling up a storm and keeping me on my toes...but enough about that, I wanted to update you on his eating.
Bottle feeding continues to go well. His intake varies from three to 6 ounces a bottle but so does the time between bottles. If he only takes three ounces, he tends to eat 2 hours later, six ounces and he'll eat 3-4 hours later. I've stopped charting his intake which really frees up some time for me! ha
We're taking some seriously tiny baby steps when it comes to Isaiah's eating cereals/purees. Isaiah prefers baby oatmeal over rice cereal.
He really dislikes the textures of everything other than milk but he's made big improvements. For example, he no longer turns purple coughing at the tiniest fragment of oatmeal on his tongue (however he downright hates rice cereal...with a passion... a crying, hissy-fitting passion).
I believe Baby Mum Mums have helped a lot with his progress.
But you'd never guess that from the look on his face here! haha
He's really taken to chomping down on a Mum Mum or two. He used to really dislike when it got soggy and would start dissolving in his mouth, but his reaction is much calmer than it used to be. (It was pretty comical.)
Even though I'm majorly cheating (his OT wanted me to strictly stick with the oatmeal or rice cereal), I've started dipping Isaiah's oatmeal in a fruit or veggie. He was a huge fan of the apples. He was ok with squash. He was pretty repulsed by the peaches. What I've learned is that no matter how he feels about the addition, he helps him enjoy the oatmeal more. He eats at least a tablespoon when apples are involved, and although he eats less with other things (about 2 teaspoons each time so far), he's more likely to eat the oatmeal plain when I mix in the addition every other bite.
I've learned one secret that works about 60% of the time...letting Isaiah put the spoon in his own mouth. He takes in so much more food and swallows it well if he's in charge of how much goes in. (Bossy at 7 months old, I'm so in trouble.)
Whatever works, right? I wish we were farther with his progress, but honestly, he was still eating by his NG tube just 3 short months ago. Four months ago I was jumping for joy at Isaiah eating 10 mL (that's one third of an ounce). Baby steps. He is a baby after all...
Not that he still looks like one. Am I the only one who sees less of a baby and more of a little boy when looking at this picture of Isaiah? He's growing up so quickly. #typicalmomstatement
He's going to be 8 months old this Friday! Geez! He'll be getting his driver's license before we know.
We went to DuPont recently for one last post-op appointment with audiology; we were also scheduled to see a nurse practitioner to do one last once over of Isaiah's port and such.
He was pretty grumpy for a good portion of the car ride, but a 5am wake up would do that to most babies. I tried to make up for the lack of sleep with toys, but I think I overdid it a bit.
Once we arrived, we made a bonus stop in Day Medicine, where Isaiah gets his Pam treatments, and got his port flushed with Heparin (this keeps the port from clogging and gives it the ability to be accessed when needed for Pam). This needs to be done every 4 weeks, and will be done every other month at home, but there were a few issues getting this going at home so we took advantage of the timing of our other appointments and weaseled our way in at Day Med to take care of this flush.
After a quick job flushing Isaiah's port, Dr. Bober stopped in to see us. I emailed him with a concern one of the night nurses brought up and he was following up to help relieve any concern there might be.
Ok, so... those that know me know I can be very straight forward and blunt so I'm just going to say it; Isaiah has a big head.
Those that are used to seeing Isaiah don't notice it as much...or don't want to admit to noticing it because they are afraid to offend/hurt our feelings. I've mentioned it in front of others; I'd relate the responses to if I would have asked them if my outfit made my butt look big when it in fact it made me look like a whale.
It's ok. It's a part of Isaiah's life right now.
So, like I said, one of Isaiah's nurses has also taken notice to Isaiah's head size. Although it hasn't crazily increased, it's noticeably large. For the past few weeks, this particular nurse has been noting Isaiah's soft spot in the paper work, so I knew this was coming. Along with his head size, she also brought up that Isaiah's eyes tend to do something called "sun downing"; this is when you can see the whites of his eyes above his pupils. You can sort of see it in the photo below.
She is concerned he has pressure on his brain, possibly hydrocephalus, which is a build up of fluid that leads to brain swelling.
Ok, his head size has been a concern to Dave and I for some time (so are the veins in his head that are more visible at times). Hydrocephalus is something that can be seen in severe types of OI, but we don't see many symptoms of it in him. Yes, his head is large, but his soft spot is still soft and not like a rooster top (meaning pressure pushing his brain up), he's not vomiting like he should star in the next Exorcist remake, and he's not constantly irritable. Although his eyes do the sun-downing thing, they can also look up and stay up, and if he had hydrocephalus they'd likely not be able to stay up as the pressure would make that hurt.
Also, a larger head and sun-downing are common in OI. I knew this but still reached out to Dr. B. because I started to play the "what if she's right" game and I wasn't going to sleep.
Anyway, Dr. Bober took a look at Isaiah's head. His soft spot is still large and soft. His head size is in the 90th percentile but it's consistent with his growth, and after a conversation that we later had with a neurosurgeon's assistant, we learned that the shape/size is also because of the flatness in the back of his head (his brain had to go somewhere while he was laying flat on his back with that heavy c-pap tube attached to him; it chose the right side of Isaiah's head.) At the end of the appointment with Dr. B, we were back to feeling confident that Isaiah does not have hydrocephalus as he has basically no symptoms (besides a big ole noggin).
(Did you notice my mention of a neurosurgeon's assistant? Don't panic.)
After seeing Dr. B. we met with the audiologist that performed Isaiah's hearing test during his surgery. Did I ever tell you the results of that? According to the findings that day, Isaiah has perfectly normal hearing in his left ear and a mild hearing loss in his right ear. We counted it as a win. At this newest appointment, the audiologist re-administered the newborn screening and this time HE PASSED WITH FLYING COLORS. No mild hearing loss anymore. Our baby can hear perfectly. We knew it but it's nice to finally see that in his test results!
After his hearing test, we met with an ENT who looked in Isaiah's ears for his tubes. Although he needed a cleaning, everything looked great. We were all done with our scheduled appointments, but while we were in getting the hearing test, Dr. B. had emailed me letting me know he got the ball rolling for a helmet for Isaiah.
We then met with that neurologist's assistant who also measured Isaiah's head, took a look at the shape of it, and felt that a helmet would be beneficial. He started the process of getting a script for a helmet for Isaiah. We made one last stop after this (mind you, Isaiah slept about 5 minutes since waking for the day at 5:30am and it was now noon) to the orthotics area. There, they measured his head (3rd time of the day, people), took pictures, and gave us information on what to expect with the helmet (a plaster of paris mold will need to be made, we'll need to take frequent trips to DuPont for adjustments, and we'll need a boatload of patience because it takes time to reform the shape of the head).
We started the morning with 3 appointments and when all was said and done, we had gone to 7.
And we had one exhausted baby on our hands.
Although it was a long day, it was a great one. We learned Isaiah's hearing is better than first thought, we learned his head is a-ok, and we started the process of getting him a helmet.
So who actually made it through this post explaining our long day?
Isaiah has been making leaps and bounds recently in terms of movement and trusting himself.
In the past, it almost seemed like he was constantly protecting his limbs, which made it hard to relax and play. After the last pam treatment and his newfound freedom from tubes though, he's a new baby.
He actually finds it all fun now and works very hard to get to toys that are at his side.
Just the other day, Isaiah was playing on his back. He's on his reflux incline which does help him move around more freely, which was evident in the way he'd thrust his shoulder over so he could get to his inch worm. For the first time, along with his shoulder, came his hip (all by himself, aka zero assistance/push from anyone)! He was perched on his side for a moment and then his leg moved. forward and he started supporting/balancing himself.
This is when I may have started to hyperventilate a bit. I was worried he'd squish/fracture his either/both of limbs on his right side and I was concerned he'd fracture that left leg since he was using it to push off and balance....and as much as I wanted to stop him, I wanted this for him even more. He was exploring his world by himself and he was doing awesome.
I wish I had hit video instead of taking photos, but here you see him tipping over.
and BOOM!
He rolled over onto his tummy! No pillow for support like we normally use. (Panic may have set into my brain- if he can't roll himself over, how do I flip him over??
He didn't care, he finally got to his prize, his wormy friend! Go, Superbaby, go!!
In all honesty, I was totally freaking out in my head, but I was cheering him on out loud. After no more than a minute, I put my hand on his hip/diaper and pushed him back over. No breaks! I moved his worm friend next to him and they cuddled and giggled together.
Ok, Isaiah did all the giggling, but holy cow our baby rolled over! He hasn't done it since, and who knows when he'll do it again, but he did it! He had physical therapy yesterday and his PT was thrilled with everything. He showed her how he can roll onto his side and she warned me to be sure that I am monitoring him whenever he's in a position that's not safe for all this movement (like in one of his chairs or on the couch); she also thinks he'll be moving all around in his sleep soon. I better clear everything out of the crib! ;)
One year ago I was 20 weeks pregnant. I was quite possibly the most annoying pregnant lady ever because I was beside myself excited for my 20 week ultrasound on April 2, 2013. We were like two kids before a trip to Disney World.
See? Here we were in the waiting room before our ultrasound.
We were going to find out if we were going to have a boy or a girl. Plus, they were going to check over the anatomy and health of the baby....but BOY OR GIRL?!? BOY OR GIRL?!?...that's all I cared about because everything was fine.
Dave and I planned an entire day- Baby Day. We were going to start with the ultrasound. We were going to ask the ultrasound tech not to tell us the gender, but instead have her write "boy" or "girl" in a card. Then we were going to go to the Disney Store in Rockvale Outlets with that card, a pre-wrapped (easy open) box, and a gift card for there and grab two onesies- a Mickey onesie and a Minnie onesie. We were going to ask a Cast Member (an employee) to open the card, purchase the correct one for us with the gift card, and put it in the box for us. We were going to take it home and open it in front of the camera, find out if it was a boy or a girl, jump for joy, and then register at Babies R Us. We'd have dinner out to celebrate.
I remember this all like it was yesterday...the excitement, the appointment, the roller coaster of emotions...
They called my name, checked to make sure I was really me (last name/birthdate check), and we were on our way.
We got right to it; I was gooped up and we were seeing our miracle man.
The tech started talking about how the area of "the fetus'" neck and brain looked good. She looked at the brain and stated how it looked "normal". She showed the heart and paused there, watching it beat for a few minutes, talking about the blood pumping and the four chambers, again stating normalcy. She said the same again about all of the organs.
She never said anything about the limbs. She rolled a ball on the keyboard and clicked away. I saw little white lines measuring bones and thought nothing different/wrong of what I was seeing on the screen.
I gave her the card and asked her to be sure not to mention the gender out loud.
I was in my Disney World.
I felt like she was taking forever to look over every part of our baby but figured that's just how it goes.
After the ultrasound, the tech said she'd be back, that she had to let the doctor know she was all done.
We waited for a long time.
We were asked to move to another room, a room to talk with the doctor. We thought this was normal, that the doctor would tell us that everything looked great, and then we'd be on our way to continue Baby Day!
The doctor walked in and sat down. She paused for what felt like forever. I was still in my Disney World and focused on the gender and not ruining the surprise so in the awkward silence (that I was momentarily oblivious to) I asked her not to mention the gender, that we'd be finding out later.
The doctor took a deep breath. "Does dwarfism run in your family?"
"Dwarfism? What?" Dave and I looked at each other, not realizing yet why we were being asked this question and said out loud "We have so many tall people in our families!"
"Why?" Smiles fading; it started to sink in.
"Your baby's arms and legs are bowed, curved. They are in the 5th percentile of growth....I believe your baby has dwarfism..."
I started to block her out here...she stopped to let me cry and gather myself.
"There are all kinds of dwarfism. Some may be lethal. I'm not saying your baby has the lethal type but you need to know in case you'd consider termination...You need to see a high-risk specialist at the MFM (Maternal Fetal Medicine) office."
We went in there ready for what I thought was our Cinderella Castle and we walked out kicked in the gut. We left passing by other excited parents-to-be trying not to cry.
We got home and sobbed.
We both cried like we've never cried before.
We cried for a solid hour. I googled "bowed arms and legs". I got results of discussions on forums with other moms-to-be with similar findings seen at 20 week scans only to be in the clear at their next ultrasound.
We felt relief.
Our baby doesn't have dwarfism. We're just like those other people posting. This is all a false alarm.
But what if he does have dwarfism?
I called the MFM office and made an appointment. Apparently they were all booked up, but my OB called ahead and told them what she saw in our ultrasounds, and they figured out a way to squeeze us in 2 days later.
What if it's lethal?
What if it isn't?
We laid there asking ourselves the same questions over and over...and then we tried to figure out what next to do with our day. Do we go on with Baby Day? Do we even open the card? We still don't know if it's a boy or a girl and it's now hours later. It's funny how your priorities change when you're faced with the mortality of your baby. What seemed so important hours ago.....went to the bottom of our concerns. You care more about that baby's LIFE.
We hugged. We held each other. We conversed, "What if everything is fine? What if it's not? Our baby's heart is beating right now. Our baby is alive. We should celebrate it the way we planned."
We washed our faces and went on with our day. We went to the Disney Store. The Cast Member was happy to help us and set us up for our surprise. We stopped at a restaurant and had a quick meal. We came home, set up the camera, and opened the box.
It's a boy.
We turned off the camera and cried some more.
We have a son and he may not make it....but he might. Buck up, Dave and Vicky.
Off we went to Babies R Us.
We spent over 2 hours registering. This is where the day started becoming a blur. We just scanned items, anything that we thought was cute got scanned (that's the glory of online registries...you can fix/update things later), and we enjoyed the positive "what ifs". Every so often we'd stop and ask ourselves if someone with dwarfism would be able to use such and such and then we scanned it anyway, because that little RF Gun is fun. :)
When we got home we (Dave) made the video above. Throughout the afternoon/evening, we called our parents, grandmom, and a few others. Those phone calls were hard; you could hear the joy leave our loved ones' voices get replaced with question, fear, worry.
We posted the video to youtube, to facebook. We were swamped with congratulations and love.
It was a day full of emotion. A day we will never forget.
Why did I post this today? Today is the one year anniversary of the most terrifying and yet the beginning of the most fantastically miraculous year of our lives. It's funny, really...all that worry...all that concern...if only we could have had a glimpse into the future...
