Sunday, February 24, 2013
Good morning!...kind of....My sleep has been nearly non-existent for the past 2 nights now....sooooo, not cool. Sawyer had been climbing out of his bed lately so Mikey had to turn it into a toddler bed because we were afraid he was going to hurt himself.....thus, Sawyer feels he can just hop out of the bed versus turning his head and going back to sleep. And then last night, or tonight, or a few hours ago (however you look at it), Connor's g tube leaked. Mikey was doing the night shift so I'd sleep and get up pre-dawn for Sawyer but of course, moms or anyone in the vicinity of a crying baby tends to wake up too. So, luckily, I was a bum and went to bed at around 830 last night because I've been up since about 1am and finally decided enough of staring at the ceiling. ......I seriously have not been ignoring the blog. For some reason, I was having a very tough time last night posting anything on blogger. I just about cancelled the blog to go to a new host (is the word host?). .........anywho, this is a major picture dump......alot!!!! And for any creep that would check out my boys because I choose to share them growing up here, I seriously do not fear guns or the thought of using them on anyone (political plug for guns here) that would even think of harming them. ......ok, got that out of my system. ........this past week Connor has been doing so great. He's eating very well and actually having a fit that he's not getting our food. The bottles are getting better. He does need his g tube at night for the extra calories but it's ok. He has the thing for this reason. He's such a chunky little thing that it's almost inconceivable to think he needs to gain and really, at this point, the tube is more about just maintaining weight too.
This week is a pretty busy schedule. Our EI (early intervention) speech therapist will be here Monday to work with Connor and his bottle feeds. We're also starting to spend a gazillion trying to find a cup that will work for him. Very hard to get thickened formulas and drinks out of most standard sippy cups. He does like it if you hold a cup to his mouth but this is a tricky operation so we're hoping speech will have some suggestions. Tuesday, I have a date with a friend when he's done with work (no worries, Mikey likes this friend so much and he's my oh so talented scrapbooking/card making buddy who has you tube videos...i'll see if he'll let me share on this blog sometime.). I've realized I have to start scheduling times to see my friends or I'm going to get really lonely. Facebook and blogging is nice but we all need face time too. ......so local friends, expect texts and calls as the time allocates itself. .....Wednesday, we go to Primary Children's to see a team from the dysphagia clinic (swallowing disorders). I'm excited for this appointment and have some questions. The woman we have an appointment with is apparently a big deal around the hospital. She is a GI doctor but specializes in working with kids with feeding and swallowing problems. Yay us, though I did meet her Connor's last hospital stay and realized quick that she's not the chit chat type like my awesome pediatrician. She's total business and it's totally fine with me because Connor has some issues and it's time for these things to be figured out. He's on alot of meds for his age....for anyone's age really. He's got prescription strength Zantac and Prilosec. He was also changed from erythromycin to azythromycin. I don't understand these last two meds too much. I have read that they use them for motility issues (getting food moving from the stomach to where it needs to go) but google searches have me finding they're antibiotics that people commonly use for just a little bit when having respiratory issues. If Ireland taught me one major medical thing, it's to question all these things and don't be a blind sheep to what you're being told is good for your little one. So, I'll be prepared for this woman. I'm actually excited. We need someone that can look at that cute face and not totally turn to butter.....umm, is that possible??.....she's actually very sweet and couldn't believe he was underweight during his hospital stay or that he'd been through so much....when she was looking at him, she was practically a grandma with her smiles and play. But, she looked at me, her face went stern and she was all business. .......I LOVE this!!!!!! .....ok, enough of my doctor crushing. ......Thursday, I actually go see an ENT (ear, nose and throat doctor). I may have to get my tonsils out. .....seriously, not even looking forward to that possibility. I do not possess the stuff Connor is made of when it comes to medical stuff.
...........well, pics. Lots of them. Remember that family is sort of seeing them grow up through these so I do have a ton here. ****special alert here***** My parents and our family skyped last night!!! Anyone knowing my folks, knows this was a big deal. It was like having a visit and just awesome. We'll now be making weekly "skype" dates. Other family, let us know and we'll help you set up an account to "visit".
A book from grandparents where they recorded their voices telling the story. Way cute and Soybean's current favorite.
When you see diaper pics, know that they most always have pants on unless their daddy changed the diaper. He has this thing where he somehow forgets to put their pants back on.....something about they won't stay still for him. .......and Sawyer will just spit the olives out but he loves to offer them to others from his fingers! I'm a willing participant in this activity.
funny boy....is he sleeping or blinking?
He was blinking in that last pic. Just a little reminder that these cute pics are just a snippet of time so can feel nostalgic despite the real day of awesomeness mixed in with kid screaming, puking, and general fussiness.
....here Connor's just handing me his food. Yeah, I'm lazy and half the time he's eating good old Gerber's versus the cool moms that grind everything. .....remember, he's the 4th kid I've had. Bless their hearts, even with special things going on, he's totally exposed to germs, dog hair and all things we're probably told not to do. ......and yet, he does pretty dang good.
This one! You can't point a camera at him without a "cheeeeeeeeeeze".
PHOTO BOMBED!!! .....this must have been his lunch, we rarely are cereal people in the mornings. It's my only brag worthy trait. Being at home, I do like to have a good breakfast.
God bless our home. My kitchen deserves to be on one of those worst rooms ever shows. The one cabinet to the right of the stove had to be taken down a few weeks ago because of a leaky area on our roof. Mikey has fixed this several times and just had a guy come in and fix it....go figure, a few days later it started leaking again....not as bad but ridiculously, frustrating. Luckily, word on the street is, a friend he works with is going to come help redo this side of the house's roof once spring gets here. NICE! .....sad part, my already crappy kitchen has to continue on with the shelves down on the counter and the doors off so we can still be messy and put things there throughout the day until this is fixed. .....at least our friends come over for our awesome company. ......I love to decorate and do the best with the crappy kitchen I've got but I have come to the point I decorate with what I love not what a magazine says. I read an article from this famous decorator guy that said he hated to walk in a bathroom and see every one's toiletries and essentials......what a schmuck. He can't come to my house. My bathroom is quite clean, newly painted and I even made a new linen shower curtain that I love......and things are pretty organized considering the size of our bathroom. If you don't want to use our bathroom because you know I am cheap and tend to use suave for hair or have walmart brand things, we have trees out back. ......I say this with love in my heart.
Breakfast is nice around here. And Sawyer is rarely without a stuffed animal.
Our back door.......Snow.....it's what's here to stay apparently.
Front view.....this is after having no snow for a week or more. (btw, we've become old. I used to laugh at my parents staring at birds. Now, we do the same dang thing)
My tacky Valentine lights...should probably come down but I somehow love these things. .......this is the worst pic to show them but apparently, my decorating style is more on a kids level so I can look up and see these.
This is just a dang cute face.
We need to go to my friend's house and get his Ellie back (stuffed elephant)....this old bear has been the stand in.
fist pumps and high five's....it's what's for breakfast every single morning. .........and yeah, I now see the E on EAT is way lower than it should be. This is the one room I love and hate so I've not done too much except complain and want it painted.
Occasionally, for just a minute or two, Sawyer will share this battered up teddy bear in the mornings.
Sawyer has been practicing fist pumps with Connor.....this occasionally becomes horrible grabbing and squeezing but usually, it's just laughs. Mornings rock at my house. Nights, not as much.
Yep,we all have corny family things. We like songs with clapping and spiders climbing spouts.
Our skinniest family member occasionally eats and ends up with this malnourished potbelly look. Funny stuff. .......and notice he went from a 2T to a 3T overnight!!!!!! EEK!
What is it about dishwashers?????
My one love in my kitchen.........a kitchen aid, my moms banana bread recipe, and a bag of gnats-please-stay-away going bad bananas.
Yummy!....freezer ready......but alas, we had to eat one and someone stole the other.
Yeah, We can be mean like that. He's cute so we want to remember this stuff too. .......and have I mentioned, I so love this man. We can drive each other nuts with various stuff but at the end of the day we know we did good finding each other.
a box at the end of the hall......I need to paint this thing eventually, it's pretty, but doesn't really go with any room in my house....Sawyer happens to love getting in this and to climb on top of it. I did have things stored in there but that ended about two seconds after he discovered this many moons ago.
If he's up, he believes lights are good and everyone should be up.
Funny one....he really wanted a picture of his foot here....would not smile for anything....just stuck his foot out.....and yes, I checked.....no splinter....just wanted a foot shot.
Thus far, these guys tend to play together. Sawyer is wanting to wrestle him a bit too much at times but all in all, at this moment, these guys really love being together.
playing with chatter teeth here.
I think Sawyer was done playing with Connor and wanted the box back for him only.
Sawyer has started jumping in Connor's bed. Literally. He likes to wake him up if he beats you to his room. ....he's also been really cute this week and I caught him just sitting at the end of Connor's bed because I was trying to get Connor to cry it out a few moments to go to sleep....was kind of hard to fuss at Sawyer in that moment. ..........so, the jumping thing, not so great.....the trying to console Connor because apparently he didn't agree with my "he's fine" policy was ok.
Aaaaaand, I have about two seconds before he'll scream that he's done and wants out! ....ok, maybe exaggerating a bit...but really, he'll play Houdini to get out of his bed but Connor's bed is somehow different. ......meanwhile, Connor looks up in total admiration.
Have I mentioned before Connor loves wires, plugs and such?...this is his pump adapter and if it's there, he's going to find it.
Mikey was doing some things to our entertainment center so we could Skype my parents yesterday. .....once again, wires. Yay.
umm....still playing with wires and doo dads.
He's underweight????....and notice back there.....this work Mikey's doing surely includes a paint job upstairs?!
These guys are all into wheels and such already.
Sawyer's favorite chair, Lucky. Can you tell he's thrilled about the situation?
Connor finally got this from Sawyer when he was distracted by something else. Smooth.
Mikey must have changed a diaper. .....and our upstairs family room is the place to be if you're into bright toys and cool cheap chairs for kiddos.
Oh my.....he's a total mess and yet still so baby..you totally want your little ones to grow but my goodness, I wish this time could last just a bit longer....
hilarious....we split a shake one night.
The rare treat of him being allowed to have his butt on the table...pure exhilaration.
Bath time is awesome now that Connor can sit in the tub. ....did I mention I made a really cool shower curtain to hide this explosion of bath toys???
I hesitated before I posted this but seriously....butts...they're so dang cute and squishy. (they just need to remember that the ladies will think this is adorable too when they start dating 30 years from now)
Horrible lighting....but, they were showing me that it was nearly a white out for a while outside.
...........THAT's it! .....until next time!!!!
Saturday, February 16, 2013
Actually, we've been home since later Tuesday . It's always a shocker how out of nowhere someone comes in your baby's hospital room and just casually asks "are you ready to go home?". Umm....does anyone every say "no"? ...........we were given a plan of Connor having additional calories and what isn't taken by mouth, to basically just give through his g tube. .......and since being home, a little bit of weight was gained....about half a pound......and his newest medicine must be doing the trick because he's yet to have a major spit up. Yay, Connor. .......I do not really understand why his palate has healed so well (though his pediatrician did say the back of his new palate is red) and yet, he's really having new difficulties with eating and swallowing. ........for once, we'll be calling the speech therapist and they'll get to feel very needed by us. Until then....here's some pics.....\\
Lazy mornings lately!!!
This little guy finally figured out his 4wheeler can go!!!......unfortunately, he hits the pedal until he runs into any surface and then one must yell out "push your button" in order for him to realize he must do that to go in the opposite direction until he hits something. ......I suppose he'll figure this out soon enough on his own. It is fun watching him go. He seems to smile like it's the coolest thing ever!
Meal time........Connor has gotten much better with eating. He is usually eating atleast half of his little containers of food and has once eaten everything! His bottles are not going quite as well yet but he'll get there. We've been supplementing his calories and he's also using his g tube at night to get any additional calories he needs.
This last hospital stay, Connor was on the "clean" floor. He met a few heart patients and was lucky enough to get visits from the volunteer dogs.
When we were bored, we'd occasionally go for walks. We tended to only go on walks when we knew it wasn't meal time....a popular time where everyone is out and about. ....it's best to try to stay away from too many folks when venturing outside of his hospital floor because of the germ factor.....then again, it was fun seeing how much others enjoyed seeing Connor. ....sometimes you forget that alot of the patients on a "clean" unit has been in the hospital for weeks and even months. A clean unit houses many patients that must stay away from viruses and the older kids really loved seeing a baby. ....the nurses and I were thinking maybe Connor and I should start a baby volunteer program just to see these kiddos smiling. :D .......plus, when you have a baby that you largely isolate at home, it's fun to get the attention every mom wants for her babies.
I looooooooved on this one the minute we had a visit at the hospital. Our children's hospital has a strict no kiddos under 14 can visit right now but you can meet your families in the cafeteria. We went entirely too long seeing each other.
This was another volunteer and his dog. .........I loved this......Connor enjoyed watching the dogs eating treats.
Our little stinker. A hospital stay that was just about getting you to gain weight was pretty easy on this little guy. He wasn't required any meds beyond what he normally takes (and well, one medicine was changed) and after the first couple of days, I was allowed to disconnect him from monitors when he wasn't really sleeping. He was connected by his g tube for nutrition most of his stay and by the time he stopped losing weight and started putting it back on, he was atleast taking a little bit of bottle each day.
When he was still losing weight versus gaining, he was big on cuddles. No complaints here. I know my mom said she would have loved to been able to come volunteer for that position of official baby holder..........pretty sure we have more family that would of loved that.
the first day or two he was just a sort of zombie. Once he was hydrated, that ended.
Now that we've been home a few days...life feels much less dramatic. He has appointments set up for a dysphagia clinic (eating clinic) and a separate GI appointment. We should hear something soon about his next surgery to replace ear tubes and clip his tongue. Because he probably had a virus, the surgery may be putting that off for a few more weeks........Connor is now just over 19lbs again. He dropped a diaper size even. ........in other news, he had his Early Intervention assessment the other day and we decided he had no major physical or mental delays. Obviously he has his medical issues but beyond that, he's developing at a nice rate. ....we (early intervention along with Mikey and I) did decide to go ahead and teach Connor sign language. Sometime in March, we'll start having weekly lessons. We made it known that we'll not be that family that stops talking a few hours in the house each day to teach him signing. (apparently, the normal way of teaching sign is a no talking rule a few hours a day and only signing is used in the home). ...our situation is unique in that Connor can hear but there is a fear of progressive hearing loss. Within a 6 month time frame, Connor is already needing his tubes replaced and we fear that the tubes are going to be a problem for some time. He's already supposed to get hearing test every 6 months due to his anatomy and we've come to believe learning sign will leave him with a second language and open to making his own choices as he grows older and possibly faces progressive hearing loss. .....anywho, no worries on that front. We truly have embraced dealing with problems as they come along. .........right now, he's doing well. The situation at hand for medical needs being met at home has become routine again. .........and being home is the best.
....until next time!