It has been way too long.....

 

I am not sure where to start!  So many things are going on with Crew, from doctor visits to almost crawling!!

A quick update on Crew's health.... he has been doing great overall!  No colds or sickness....YEAH!!  He did have a fever for a couple of days that gave me a scare, but I think it might have just been teething related because this boy got another bottom tooth last week and his front tooth just popped through yesterday! 

I will start with his heart ....still no SVT!!!  The doctor has decided that we will start to wean his medications one at a time to see what happens.  If he starts having SVT again, then we know he still needs the medication.  But, if he continues to be SVT free then we may as well give his body a break!  He said that Crew could go years without any episodes  then start having them again so this will be a constant thing on this momma's mind.  We are now officially weaned off of the Flecanide and we will start to wean the Sotalol this month.  Keeping our fingers crossed!

We had an MRI of Crew's brain and CT Scan of his lungs done at the end of January and that all looked great!  No signs of lung disease!!  His brain MRI showed a small, old bleed that must have happened at birth or in utero.  The bleed has since scarred over and the Neurologist did not suspect that it would cause Crew any problems in the future and we were officially discharged from Neuro!! YAY-we have now been discharged from Oncology and Neurology!!  He continues to need his oxygen at night and we are not sure why...hoping this is something he will just outgrow.  He is still also on his thyroid medication and will most likely be on that until he is 2 or 3, at which point we will try him off.  We tried him off his Prilosec, but that did not go well so we are back on that too!  All in all though, Crew is doing AMAZING...he is just a little feisty and spoiled!!

Crew has become quite the busy body!!  He loves his car/walker and can get around the kitchen floor a little too well-he loves to taunt Griggs and chase him around.  If the fridge is open, he will cruise over to the fridge, if the dishwasher is open, he finds his way over there!  He has even started finding his way to me and pulling on my pant legs!  He also loves his bouncy and being able to "jump around."   He started pushing up on all fours....we are so close to crawling (he also does the commando crawl well)!!  If he wants something bad enough, he figures out a way to get to it!! I have a feeling I am going to be in big trouble when he figures this out better!  He started giving kisses, which we all LOVE!!  He is so tender with his kisses too! 

I can't leave a room (or anyone for that matter) or walk away from him without him noticing, and he reaches out for us as soon as we head towards him.  We taught him this recently and it is kinda backfiring!  He likes it when his dad comes home from work because that means play time!!  His dad is also pretty good at getting him down for his evening nap.  

The stranger anxiety is beginning to set in with him, but hopefully this will pass! We have been in quarantine this winter, but maybe as the cold/flu season passes we will be able to get out and see people more!!  For now, he knows his Mom, Dad, Nee Nee, Aunt Linda (she visits weekly) and his Grandma and Grandpa Schow.  I have a feeling he will be very social when he actually gets the chance!

Crew likes textures as I find him scratching his little fingers on things often.  He likes his oatmeal, pears, bananas, apples, and sweet potatoes (we thought the sweet potatoes made him sick but the second time was a success), squash, carrots, mangoes, peaches, prunes, cheerios, puffs, rice, pancakes, and anything we might be eating that he can taste.  He did not, however, like avocados or peas!!  I will try those again later though because how can you not like avocados!! He loves to drink water and has figured out how to drink it from a sippy cup and a straw!! 

Of course we have tons of pictures of the little stinker, which have all been posted on Instagram, but here are a few of his 6 month photo shoot for the blog!!

4 Months "Corrected" Already!

Our handsome little man was 4 months "corrected" on the 2nd of December!  It is really hard to believe that 6 months have gone by since he came into the world and 4 months since we brought him home! 

Crew is turning into quite the character, and we are loving every second of it!  Just in this past week, he has started eating rice cereal (December 2nd), had 2 teeth pop through (December 3rd when I felt them), started sitting up "kind-of" (December 5th), and rolled over from his back to his tummy by himself (December 7th)!!  The dates are so that I can remember them!!

The rice cereal thing wasn't going so great so we switched to single grain oatmeal yesterday and he seems to be liking that better.  He would gag on the rice cereal and make some pretty funny faces.  He even had tears over it one night ... that is when I decided to switch it up!

As for his teeth ... I was not at all expecting teeth already!!  Crew had been chewing and drooling like crazy and it was mentioned to me by his dad that he was probably teething to which I said "not yet!"  Then, one day while I was letting him chew on my finger, I told Nee Nee that I thought I felt a tooth and sure enough I looked and their they were, 2 of them!

The sitting up is still in the making, but his balance is getting much better!  If I prop him just right he will stay sitting up (a little hunched over) for quite awhile.  He will even look around the room while he is doing it.  This is progress compared to last month!  Crew has also been trying to roll over for a couple weeks.  Just a couple of days ago, I was on the floor with him (shopping online) and looked over to find him on his tummy!  He had rolled over all by himself!! He did it again on his play-mat today when I wasn't looking!

As for Crew's health ... he has been great!  No colds, fevers, or even a runny nose!! Knock on wood!  His dad likes to make fun of me for being OCD about everyone being clean and washing hands (I kind of am) but it's keeping the little guy healthy!!  We still have not had any SVT, which is pretty amazing to us!  Crew is still on his 2 heart medications to regulate his heart, but Dr. Womack may be taking him off those soon to see if the SVT returns.  If it does, he will go back on the medication until he can have an ablation.  And, if it doesn't then there is a slight chance that he has outgrown that pathway his heart was taking.  Our little man is still on oxygen at night and his heart monitor, but those alarms are going off less and less!!  We did a sleep study this past week to try to find out why he is still needing the oxygen, but we have not heard the results yet!  The sleep study was not the most restful night for Crew or I, but I am sure glad we did it and that it is over!  We also did a swallow study before Thanksgiving to see if he was aspirating and that all checked out good.  He is refluxing, but not aspirating.  We see the NICU follow-up doctor next week, as well as Dr. Flynn (Endocrinologist) and Dr. Tippets (Pulmonologist) for follow-ups.  All in all, his health and his progression have been such a blessing to us and we are grateful every day for how wonderful he is doing!  Oh, and I can't forget to mention that at his last appointment, which was well over a week ago he weighed in at 16.12lbs!!!  I am certain he is in the 17-18lb mark by now though!

Thanksgiving was spent this year split between his Aunt Michelle and Uncle Chet's house and his Grandma and Grandpa Schow's house.  Crew also got to meet Santa for the first time at the annual Schow Christmas Party!  I've posted some pictures below of the past month for your viewing pleasure....

 

Meeting Santa

Christmas City, Rupert, Idaho

His Version of Sitting Up - Oh, and the Shirt is Pretty Cute Too!

Teeth

Cousins - Crew loved them!!

Thanksgiving

Practicing Tummy Time

Crew and Momma Snuggling After the Sleep Study

My Little Man Today Being a Ham!

And, a Few From His Recent Photo Shoot by Nee Nee ...

Snapshots.....

Our little bag of popcorn ... His dad felt sorry for him that he had to be dressed up as a bag of popcorn!!  Halloween 2013!

Discovering Leaves ... Fall 2013

Playing with Hats

Crew's New Bathtub ... he grew out of the old one!!

Just being cute!

This is what happens when you do the airplane after dinner!!  Crew finally got his dad and we loved it!

Snuggling Momma

Oxygen Baby

At his cousin Boone's football game!

Dreaming about his Momma!!!!

A 10 minute photoshoot while babysitting

3 Months "Corrected"

Our sweet boy was 3 months "corrected" on November 2nd!!  He is weighing in now at a whopping 15 lbs 14 oz and is 24.75 inches long!!  I can't believe how fast he is growing ... it makes this Momma sad!  He is even in some 6-12 month clothing already!

As for Crew's appointments, everything is going great!  We had another normal lab work-up with the Hematologist so we have been dismissed from him unless Crew shows us any signs that might cause us concern (fevers, sores in the mouth, nose bleeds, constant colds, etc).  YEAH!!! Knock on wood, he has not come down with any illnesses yet!!

He is still on oxygen while he sleeps and that continues to be ok ... it's not his favorite thing but he is getting used to it!  I will see the Pulmonologist again here soon to discuss why it is he thinks Crew hasn't outgrown his need for the oxygen.  He mentioned maybe doing a sleep study on Crew to see exactly why he needs it.  We also recently saw the Neurologist and we have decided, along with his Pulmonologist, that we will wait to do a MRI on him until he is 6 months corrected.  So, we are looking at maybe February for that.  His doctor wants to do a contrast MRI and he will need to be sedated so it will most likely be an overnight procedure so that he can be monitored.  The poor guys also had his immunizations this past month and boy did he hate that!!  He went from happy to MAD in about 1 second and he took a while to calm after the fact ... he was pretty upset!  Oh yah, still no SVT!!!!!!!!

Crew continues to love his interaction with us ... the toys don't quite do it (he requires just a little attention:)!! He giggled for me for the first time last week and it brought tears to me eyes ... it was the sweetest sound I think I have ever heard!  We spent the rest of the day trying to get him to do it again with no luck.  Nee Nee has since found a tickle spot on him on his back that makes him giggle if he is in the right mood!  He is still pretty selfish with his giggles!  He is also starting to grasp things if they are close to his hands ... he isn't quite reaching for things yet, but almost!  He has recently figured out how to complain and has a new sad cry that would just about break anyone's heart ... it works for Momma that's for sure! Crew discovered his hand and fingers the other day and when they catch his eye, he will watch them closely.  He rolls front to back and we are currently working on back to front!  He also still loves the car and the stroller ... thankfully!!

We tried our hardest to get a smile out of him for his monthly picture and this was the best we could do!  He has figured out the "camera" thing ... when it comes out, he stops smiling and just stares.  Almost like he knows what it is we want!

Singing with his Momma . . . about a month ago

2 Months Corrected (Better Late Than Never, RIGHT?)

Our little muffin is already 2 months corrected (Actually 2.5 months now!)!  Crew is doing great ... still no SVT since we have been home so keep your fingers crossed that this continues!  We saw the Pulmonologist and Endocrinologist this past month.  Nothing new with Pulmonology - Crew is still on oxygen while he sleeps ... We have to put him in a straight jacket at night because the little bugger is a grabber, but other than that this is going well!  The Endocrinologist increased his medication, but said that he is still on the low end of the dosage.  We will see Neurology, Oncology, and his Pediatrician next week.  The Oncologist will be checking Crew's labs again and if he has another "normal" workup he will put us in the clear - or at least for 3-6 months!  The Neurologist is going to be consulting with us as to when we feel safe putting Crew under anesthesia for an MRI ... we are hoping that won't need to be done until he is at least 6 months corrected! Oh, and he was 14.9 lbs at his last appointment!!!!! 

My days now consist of rocking, patting, wiping, burping, dressing, medicating, and sleeping when I can, but I am loving every second of it!  His huge smiles make it all worth while!

Crew started singing this past month ... it is the cutest thing you have ever seen.  When we sing to him (especially "You  Are My Sunshine"), he tries to hum along with us!  I will see if I can't post a video of it soon!  He is talking up a storm right now and still as smiley as can be!  Our first road trip to Grandma and Grandpa's went off without a hitch ... he seemed to like it there!! We had Crew blessed while we were in Rupert ... we didn't get as many pictures as we would have liked but here is what we did get (Thanks Nee Nee!)!  Thanks to everyone for all your support!!