Saturday, January 9, 2016

Trying again...

Take two.

I can't say that C is asleep, but he is in his bed and he is being calm. T isn't asleep-I can say that for certain. He is in his bed singing the Frog song and talking about Transformers. Oh the things he talks about at 11:30 at night. It's amazing what his little mind is contemplating.

Anyway. Back to C. He is doing quite well. We have switched up therapies and now he sees OT, PT and speech every week. We were going two times a month, with a total of an hour each. This new schedule is an hour every week. HUGE difference. Seriously! He went from barely supporting himself to sitting up (he can't get himself to that position yet, but he's trying), he's army crawling, and this week we started actually putting some weight on those things known as legs. Absolutely amazing! He still has no teeth. I'm hoping soon. He is chewing on everything and there is tons of drool, so it's only a matter of time. 

We still are dealing with GI issues. We were hospitalized twice last year for clean outs, and they weren't fun. Poor kid had to have a gallon of the stuff put into his little body to clear him out. We have since switched docs to the head of the department. We have a referral to Columbus and will be making our first trip down in a few weeks. The meeting is just an hour long, but hopefully it will get us on the right track. The doc says that they are the only ones that can do this kind of testing (GI motility) and that the docs there are the best in the country. I hope so. I hate seeing C's poor belly so distended some days. He doesn't necessarily act like he's in pain, but I can't imagine that it feels good.

(For the record, he is still awake. He is laying in bed saying ah-di-duh. He likes those words.)

J is currently at work, thanks to the lottery jackpot being so high. It's been interesting to see the posts on FB with people buying tickets. Keep buying them, it keeps him employed. (Although, I'd rather he was home right now. But jackpots like these don't happen often.)

I am still trying out new products and reviewing them, when I get a chance. Our schedule is fairly busy, but I try to make due. I do need to post some reviews on my blog in a few minutes, so feel free to read those. Otherwise, scroll past. My account has been "suspended" for not posting my blog review in time. So, I am trying to fix that. Start 2016 off on the right foot and all that.

It's been awhile...Part 1

I have a hard time actually posting the blogs that are written in my head. I really need to get better at it. I apologize. I have been doing stuff-really-I'm not just sitting around the house eating bonbons. Really! I'm not.

So first. Tomorrow, Truck will be 4. Where the heck does time go?! I know, I know. So many of my friends have told me in the past that it goes fast, and I was like, yeah, whatever. Ha. Little did I know.

My little man is growing up so quickly, using a vocabulary with words like articulated, plushy, and stabilize. I can thank the internet for those. He enjoys watching "red videos" (YouTube for Kids) in the morning when he first wakes up and again before bed. (And during the day when he's allowed.) He watches all kinds of videos, Transformers have been his favorite as of lately, but we also have a "healthy" does of surprise egg videos, unboxing videos, blind bag videos, and just videos about toys. There are channels I wish he wouldn't watch, the folks are annoying. But no, he watches them and learns all about some toy that he needs to have, never mind that it is either 1.) really expensive or 2.) no longer an option to buy at the store, making it really expensive. He also watches adults playing kids board games and I'm guessing collectors talk about the different Hot Wheels that they've found. I never know what for sure he will be watching.

He isn't excited about turning 4 though. Why? Well, it's complicated. Not really. But to him it is. When we were talking about growing up and being potty trained when he was four. He took that to mean the day he turns 4 he has to go potty on the potty all the time. (Make no mistake, he can do it-he was very close when he was 2.) So now, he has stressed himself out. I hate seeing him upset. I know some of it has to do with some sensory issues we've been working on, but the rest, well, that's all him. I'm a little apprehensive of what will happen when he wakes up in the morning...

I want to add more info about C and what's been going on with him, but alas, he has woke up (it's 11PM) and he wants my computer. So, I need to shut down for now to get him to sleep. Hopefully I will get an update up in the next day or so...

Monday, October 5, 2015

Well then...

So no Hirschsprung's. Yay. But, since then, we have had issues and we had to be admitted for him to be cleaned out. Not to get overly detailed, but the barium from the test in May? Yeah, it finally came out. But hey, nothing to be concerned about. Right. I'm working on my plan on where to go to see a different specialist. Might be Cinci if we can get a release. Otherwise, we might look into other states.

Anyway. I have been able to review some fun stuff lately. 😃 of note is a remote controlled Truggy. Truck and Joe have had some fun playing with it. They tried to go off road with it in our yard, but it didn't do too well. Of course, our yard is not optimal, but had they been able to drive it from the front to back, oh man! They have been playing in the drive. T loves that it is "faster than even me!" And he tries to chase it. That is when he lets DaDdy have a turn. I like that it's something they can play with together. Not that our other toys aren't able to be played together, but this seems to be a perfect father/son activity.

Truck discovered YouTube videos a few months back. Oh. My. Goodness. He loves watching surprise egg videos and blind bag videos. And today? (I took the videos away for a few weeks) He is watching reviews that tell what ages the toys are for. Great. "Mommy! I can get that! It's for 1 and up!" I am in trouble. I don't mind toys, I like things that can have more than one use. You know,maybe educational if we can. We use cars for many things-colors, counting, shapes. But mystery eggs? So far all I've learned is that he doesn't have all of the Paw Patrol pop-up characters. Oy.

Well, I'm done rambling for now. I apologize for the lack of posts. Just been trying to get everything straight. Hopefully more updates and reviews will be coming soon! 

Monday, June 1, 2015

Back to square one

We received the official results from C's biopsy today. He does not have Hirschsprung's Disease. (I had kind of a feeling after seeing his results posted on his account, but without official interpretation, I didn't want to make any mistakes.) While it is awesome that he doesn't have to have the surgery, we are now back to where we were. He isn't gaining weight very fast, he was 6.7 kgs (14.7 lbs) last week when they weighed him. He is around 26 inches. That means he hasn't really grown a whole lot. We know that he will be small, and that growth will be slow, but this is a little more than just a "little". C's neurologist (also the doctor at the Down Syndrome Clinic) was the one who had recommended we see a GI specialist. The surgeon said today that he was going to pass along the info to the GI doc, so we'll see what our next step is. Poor boy is also very constipated if he doesn't receive lots of help from Miralax and Milk of Magnesia. (Today was a day that was proof that the meds work-poop all over me, him, and the chair!) J went to the allergy doc today to see what he was allergic to. He came home and said the better question was what he wasn't allergic to. He might be starting allergy shots soon. Hopefully it will help. We did think it was kind of amusing that he didn't have a reaction (that he remembers) to feathers. He hates birds. He did have a reaction to cats and dogs, both things that he doesn't hate (but doesn't necessarily like) and that T would like to have as pets. We will definitely use the cat one to our advantage, but I'm not sure about the dog one. We'll have to see how the allergy shots work out.

Friday, May 29, 2015

Memories

This week J and I celebrated our 15th wedding anniversary. How crazy is that?! Ok. Not necessarily crazy, but I still sometimes think I'm the same age I was back then. And that I have the same body as back then. Nope. Not even close. But man, there have been tons of memories made in those 15 years. (We've known each other for 20, which is crazy too!) So these last few days I've been thinking about the past and the people we've known-not just within our marriage.

I was looking through the small scrapbook that I made with the snapshots that people had given me of our wedding, and so many of the people pictured are no longer with us. Well, not a lot, but enough-my mom, my grandma, J's grandma, J's aunt, my uncle. I am very thankful to have pictures of them from that day. We had talked about eloping, but didn't. I'm glad. It was a crazy day. It started out raining, so our photoshoot at Stan Hywet had to be cancelled and we ended up having pictures just at Firestone Park, where we were married. After the ceremony it had stopped raining so we were able to dismiss everyone outside so that they could blow bubbles and the room could be rearranged for the reception. J and I were able to get outdoor pictures then. It's fun to look back and see how young we looked! (T says that J had funny hair and that he prefers how he looks now.) 

Yesterday as I was driving up to the hospital, I flashed back to driving up everyday last year while C was in NICU. It seemed like every day as I drove in, the Swon Brothers "Later On" would play. That song would get stuck in my head and it would stay there all day. I'd finally get rid of it, start driving home, and dang if it didn't play again! I've had that song play a few times as we were on our way in for therapy, but luckily it didn't come on yesterday. (Had I had the radio on, it probably would have!)

Earlier this week I was given the opportunity to review some pencil grips. Now, something so boring and plain shouldn't bring back memories, but these do! Back in 3rd grade, our teacher Miss Logan, made a big deal about using pencil grips to hold our pencils properly as we were learning to write in cursive. We didn't call them pencil grips. Nope. They were called "hoochies". I still can see my mom's face when I came home and asked to buy a hoochie at the store. Miss Logan was a great teacher, she made me enjoy school again. She always had fun things to do and she always cared. I saw her again after I was an adult and I was subbing. She recognized me right away, and while she couldn't remember my first name right away, after I told her my class nickname, she did. (Everyone in our class had nicknames. I'm sure now it would be taboo to do something like that, but we loved it!) She also told us she was 85. I believed it and told my mom that. She had to go in to verify that she wasn't. 

Today was the last day of school around here. I know I sound old, but man, school was never out this early when we were in school! How do I remember? Because my birthday is next week and we were usually out around then, usually after. It's hard to believe it's been 20 years since I graduated from high school, and 17 since Kent.  My friends have been showing their kids first and last day of school photos this week. It's fun seeing their kids change in a year. 

I've been taking pictures of T and C everyday since they've been born. No, really. Every single day. With T's, I put them in a calendar, so May 29 would show on May 29, etc. I haven't updated the calendars in long time. C's pictures are just sitting on the external hard drive waiting to be used. I need time to work on them. I will admit, there are a few days that I have missed pictures, and I realized about a month ago that I lost a bunch of pictures. I was very sad. I know I should not rely on the Apple cloud to keep my photos safe, but I did. Ooops. I'll devise a way to mark those days in the calendars when I get to them. I showed a few of the original pages to T in his baby scrapbook. He really liked seeing what he looked like as a baby. His baby books are just his professional pictures. It's still 2 albums. I went every month until he was 18 months. That's a lot of pictures. Not to mention all of the photos I took! I'm hoping to do some scrapbooking this summer. I've been looking into digital scrapbooking and scrapbooking on my phone. (Someday I hope to have an iPad to scrapbook on too.) I really like the Project Life way of scrapbooking these days, and since I have taken so many pictures, I have a feeling it would be the fastest way to get semi-caught up. I have the app on my phone and I really do enjoy it. I can see why people enjoy scrapping this way. I do like physical scrapbooking to-don't get me wrong. I love being able to play around with paper and move the pictures around, and cut things with my Cricut, but sometimes I think digital is just nice. Not to mention it's not messy and I can work anytime-even if I'm holding C and feeding him a bottle! Can't do that with traditional scrapbooking!

Speaking of scrapbooking, one of my friends posted on her blog about the scrapbooks that she has made for her kids. Her youngest is graduating from high school and she showed a few of the pages in the book. I love how she used the text from Dr. Seuss's Oh, The Places You'll Go. It's a really awesome idea, and I might just have to copy it someday. ;) Of course, after I looked at her page, I started reminiscing to when we used to get to see each other. She has known me my entire life, so she would remember our earliest encounters. I have photos of those encounters, but I can't say that I remember them. I remember hanging out with her family in Virginia when we go visit them when we were on vacation. We would play pool in their basement and they introduced us to IBC root beer. We hadn't seen each other in a long time, and last year they were here so her daughter could do a college tour. We met up, and seriously, it felt like we've just been hanging out all the time! I suppose that's how it is when you have "family" like her. (She's not technically family. But I feel like she's a sister, and we have so much in common, it's uncanny!) I really hope that we don't let so many years go between visits again. If you're interested in seeing her scrapbook, here's the link. (I've enjoyed reading her other posts as well, and her 2015 book project? Someday I will get to read again and post my reviews. I miss writing for What have I read lately?. And putting my reads in LibraryThing. At least I have Good Reads to help keep my lists sort of current.) 

Dr. Seuss always had a way with words. "Sometimes you will never know the value of something,until it becomes a memory." So very, very true. Until next time.

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Thursday, May 28, 2015

Just waiting...

We have been here at the hospital now since 12:30. The last time C ate was at 7:55 this morning. It is now going on 4 PM. They finally took him back to surgery a little after 3. They were running an hour behind. I understand these things happen, but who schedules things like this? Kids with thickened liquids (as C has to have) are not allowed to eat at least 8 hours before surgery. Wouldn't it make sense to have them earlier in the day? Luckily he's a very laid back boy and I was able to get him to fall asleep. He's 13 months old, so it's not like he understands what is going on! Now I just have to wait for him to be done and then I can go back. I'm hoping the recovery nurses remember to give him the thickened milk that I brought. Last time they didn't, and it was not pretty. I'll post more when I know what's going on. 

Sunday, May 24, 2015

It's the little things..

Some days I tend to forget just how lucky we are. Even with crazy things. Over the last week, we have started switching C's milk additive from powdered formula (Nutramigen, which is VERY smelly!) to Pediasure Peptide milkshakes (also smelly, but not as bad.) Since C is still covered by WIC (something to be thankful for), they added 96 cans of the shakes to his monthly allowance. For right now, this covers how much he takes in, but as the breast milk supply slowly goes away, the amount will not be enough. I went to Giant Eagle to pick up the cases, and while I knew the stuff was going to be expensive, I had no idea just how expensive it was. $7.50 a can! That is almost a full dollar per ounce! Insane! When the girl rang it up, I'm pretty sure my jaw hit the counter. I mean, how do they expect people to pay for this?! What happens if they don't have WIC or insurance (which I have already started getting in line to cover this) that can cover it? I came home and told J we were very lucky to indeed receive WIC for C. 

Today we hung around the house most of the day. Sometimes it's a good thing. We did venture out to find some Munzee codes though, so T was a happy boy. We were going to go to a park, but changed our minds and just found them in the local Acme parking lot. I think this is one reason why I enjoy looking for them so much (aside from getting to spend time with T)-we can find them pretty much anywhere we go! Tomorrow we have to hit up the Sleep Number store (more on that in a minute), and I'm hoping to go to the Nature Realm to not only find Munzee codes, but maybe take some spring pictures of the boys. (Not that Heather doesn't take awesome photos! I just want to practice with my own camera and remind myself that I can do it. lol)

So Sleep Number. Last fall we decided to take the plunge and get a Sleep Number bed. Our friends had recommended it and said it was the best thing ever. I went and checked them out, and then met up with J at the store another night after work so that we could order it. We did not pick the cheapest bed there, nor did we choose the most expensive. We went down the middle, and chose to add on the moving frame so that we can raise and lower the head and foot of the bed. (I currently have it inclined and it is wonderful. :)) The day came for them to deliver it. They were late. Several hours late. They said that their truck broke down, so they were late. Um...Ok. It messed  up our day, I had kept T awake so they wouldn't interrupt nap time. That was a fail. I wasn't happy. They set up the bed, then told me they would have to return the next day because there was something they didn't know how to set up. Ummmm. What? J came home from work and figure it out. We complained. Sleeping on the bed was nice, for me, but J felt like he was sinking in toward the center. We complained. (For that much money, and for an adjustable bed, he should be comfortable!) They sent out new people. The original people were temps, not normal for installing beds, and had zipped the two chambers up crooked and broken the zipper on the mattress cover. They fixed that. J still has problems sleeping on that side of the bed. We've tried different settings, he's just not comfortable. (I am fine. I love the setting.) He ends up sleeping out on the couch or chair. We did not spend a lot of money on this mattress for this. We noticed that my side seems to be crooked, and it is indeed over the edge of the bed frame. Because of the way these mattresses/beds are designed, we can't just push the mattress over or slide it over. Doesn't work that way. Tonight I thought I would look to see if maybe I could adjust something. Turns out, the foam layer is ripped at least 2 feet! So, tomorrow we will be going to back to complain. Everyone we know that has a Sleep Number bed has been thrilled. We seem to have just received a bad one. Hopefully tomorrow they will be able to offer a solution. Until then, I'll be thankful we have a place we can put our heads down and get some sleep tonight.