Well, Carter decided that he wanted to make life a little more interesting for Thanksgiving. He started having these episodes that look a lot like seizures. I'm not totally convinced that they are seizures though. This might sound crazy, but I'm almost completely confident that they have something to do with acid reflux. Michael has had a bit of a stomach bug this week, and I think that Carter caught it too which maybe made his Prevacid a little less effective. He had four of these episodes yesterday, and they only happened when he fell asleep AND was laying flat. If he was sleeping sitting up, he was just fine. I finally gave him an extra antacid and had him sleep in his swing all night, and he's been completely fine since 8:00 last night. Either way, we're going to make an appointment with a Neurologist. I'm really praying that I'm right about this because it would be a lot less serious than seizures, but if that's what is now in store for us we'll take it on. So, to all of our Primary friends, which Neurologist do you recommend?
Even though we ended up eating our dinner reheated in the microwave since Carter had issues right when we sat down to eat, it was a pretty good Thanksgiving.
I'm trying hard to not use Christmas songs for my titles, but it just comes to me.
We set up our Christmas tree yesterday. I know, I know, it's a little early, but...but...but... Michael was gone for all of December last year, so we feel like we missed out. PLUS, we thought that it would be visually stimulating for Carter. I can justify anything.
Carter loved it!
Michael already has the outside lights up too. I just need to do the Nativity scene and my mantle. I plan to tackle that a little later in the week.
Also, I wanted to let you know that if you were wanting a fully custom Santa letter for your little ones, there are only 2 days left to order to receive the first shipment. You can click on the link in the sidebar to check it out. This is my third year doing this, and it's so much fun!
Seriously, do you get much cuter than that? I took his O2 off for his bath, and couldn't resist. That's a typical Carter smile right there. Awww. Now, I want to go and wake him up just to kiss his cheeks. This picture makes him look like such a big boy. Sometimes I wonder what Carter would be like if he didn't have a Chromosomal Disorder. The answer is that he wouldn't be Carter. I'm so glad that God sent us THIS little boy. He's the sweetest thing ever! As frustrating as things get with him, it's also so much more fun to raise a special needs child. You get excited over EVERY new thing that they do. Even Mikey will come and tell me if Carter moves his hand in a new way, or smiles at him. It makes life much more exciting.
Today was our first day of vacation. OK, so we're not going anywhere, but Michael is off from work for the next ten days so we're counting it! On our first day of vacation we got our pics done for the Christmas card, and Michael finished putting up the Christmas lights. Exciting eh? That pic isn't going to be posted yet, but let me say that even with all of the flaws, I'm pretty impressed with it considering it was taken with a self timer and a tripod.
Carter had vision therapy today, but wanted no part of it. He's been doing really well with trying to roll over and hold his head up when he's on his tummy. The strength is coming slowly but surely. I'm so glad that we started Physical Therapy recently. I really think that it has helped him. I have it set so that his OT and PT come on opposite weeks, so Carter gets that type of therapy once a week. I also think that we're getting close to the first laugh. If anyone can make him do it, it's going to be Daddy. Carter's starting to really appreciate his jokes. At least someone does. (totally kidding Michael)
Mikey lost another tooth today and Carter's complaining because his sixth is coming in. How is that for irony?
Carter did great at the Audiology appointment. I went into the sound booth with him where he sat on my lap. It's a soundproof room, and the Audiologist would talk through a microphone that would send sound to two different sides of the room (one at a time). She'd check to see if he would respond to it. Carter decided that it would be more fun to talk to himself the whole time. It's all good though. She said that's pretty much what she expected.
Today we've been having mega tummy time trying to get his neck stronger. Carter's not too happy with me, but oh well. The show must go on!
So, there's still not a lot going on here. Carter has an appointment with Audiology today which should be pretty easy. I know that his Audiologist wanted to try the sound booth which will be a new experience for us. Has anyone ever done this? I'm just curious what it's like, and will definitely post pics later.
I've been spending a lot of time online lately just searching for good deals for Christmas. We are trying to do it VERY frugally this year. My proudest moment was when I got a Leap Frog Tag system for Jovie for free! It's a $40 toy that I used a manufacturer coupon for $10, a Target coupon for $10, and a free Target gift card I earned for $20. Pretty sweet huh?! I also price matched the Pictureka Flipper game to $15 and used two $5 coupons (Target and man.) to bring it down to $5. Oh yeah! I plan to go back soon to get two of the $15 Wii or DS games and use the $10 coupon off of 2 that is in the Target book. That's $10 a game.
I've been doing Swagbucks too. I managed to earn $15 in Amazon gift cards that I plan to use toward one of the kids' gifts. So, if you haven't signed up for Swagbucks yet, there's a link on my sidebar. Basically, you earn bucks by using their search engine like you would use Google. It doesn't bring the best results, so I loaded the toolbar and just type my typical websites like Facebook and Ebay into it every time I want to go to there. If you refer friends, you'll also earn a buck for every buck that they earn (did that make sense?!)
If you've got any good deals for my kids, please let me know.
Also, I can get my hands on a few 40% off codes at Kodak, so if you want one of those, shoot me an email at email@example.com.
Now, back to regularly scheduled programming. Wish us luck today at Audiology!
Not much going on here. Carter had his Occupational Therapist come today, and he thought that Carter was doing well with reaching for objects. I was actually really shocked to hear that since it didn't seem as though he was reaching for much to me. The OT showed me some examples of reaching, and he's totally right. Carter's a reacher now lol!
He seems to be getting stronger. We've been doing a LOT of exercises on a Pilates ball, and that seems to be helping. He's started to do that scooting thing where he'll start at one point, and his head will stay in the same spot, but his feet will end up diagonal from where he started. Hey! That's a start!
I'm hoping to get some family pictures done for our Christmas cards.... wish me luck on that. I think that it's tougher to get Michael to do it rather than the kids.
You may have noticed the button on the side of my blog. Don't be in denial! Santa is certainly on his way!
Santa and I have been tight for the last few years, and he's put me to work gathering names for his mailing list. This is one of those things that I look forward to every year, and this one is no different. I can't wait for Carter to get his very first letter! If you're interested in having your child's name added, please visit his blog on my sidebar over there ---->
The deadline for ordering for the first shipment is November 27th. There will be two additional shipments in December.
In fact, I expected him to be very upset about it and not tolerate it.
I was WAY wrong.
I just played with Carter for the first time since we've been home, and he is a COMPLETELY different kid. He's actually looking at me when I talk to him and not looking all around me. He's smiling easily at everything I say. I am floored. Seriously, floored. We are very thankful today.
The headband isn't nearly as bad as I thought it would be. It ended up being all denim without stripes (thank goodness!) He looks a little like a pirate to me. I'm definitely ordering some different colors, and Grandma Sherie needs to get hard at work sewing him some new ones as well.
Carter reacted much better than I thought he would. He just sat very still and tried to figure out what was going on. He's been very happy since we've been home and just seems to be adjusting to his new sense well. We got to try out the bone oscillator, and it just sounds like he's listening to stuff through a radio. I'm actually pretty impressed with how well it works.
I'm hoping that this really opens up a new world for him. I'm patiently waiting to see what happens.
Notice the guitar shirt in celebration of being able to hear music and Bon Jovi's new album.
Mikey had his parent teacher conference today. His teacher says that he's doing great. She noted that he's a very hard working and shy little boy. I'm not sure that we were talking about the same kid. *sigh*
We're watching the Broncos game while Michael paces back and forth yelling at Kyle Orton to put a drive together. It brought to mind the fantasy football team name that Michael came up with and hence the title of my post was born.
I found it a little ironic since tomorrow Carter *should* be getting his hearing aid. I just might lose it if the Audiologist calls to postpone. I'm ready for our two month break from doctors and appointments to begin. Only therapies at home for the next couple of months once we get this one under our belt.
Mikey is feeling much better. In fact, he's been driving me crazy today with all of his energy. Thank goodness he can return to school tomorrow.
Wish us luck tomorrow, and hopefully I'll have some pics to post of the denim and white headband!
Mikey has Strep. I must say that I'm not surprised since it seems like he gets some sort of throat illness every Fall. He told me late Friday that he had a sore throat. I pushed it off as no big deal. On Saturday he was running a fever of about 100 for most of the day, but Tylenol knocked it down a bit. Still had a sore throat.
He started to act much better, so I thought it was probably just a little bug. I made a doc appointment for that night, but since he was doing better I cancelled it. I was afraid of taking him amongst the "flu ridden".
Sunday morning he woke up with no fever, but a little sore throat. I made another appointment, but he came right out of it again. He acted COMPLETELY fine, so I cancelled it again.
Finally, by afternoon he said his throat hurt again so I made an appt and stuck to it.
When he sleeps, he usually sleeps here (picture a pack and play there). About a foot away from Mama.
Now, he sleeps here:
About 10 feet away from Mama.
OK, so maybe it wasn't a "big" move, but it was big for Carter and me.
We had been using a Pack and Play as a crib next to me, but it just wasn't working for us any more, so we moved Carter's crib into our room. I wish we would have done it a LOT sooner because everyone seems so much more comfortable. Michael even put up a shelf above his crib that holds his monitor, diapers, and feeding bag. I cleaned out a drawer in our dresser for extra blankets and jammies since he has a tendency to need a change in the middle of the night. I think that he likes the new sleeping arrangement.
Mikey is sick. I've been holding off on taking him to the doc, but am finally giving in this afternoon. He's got a low fever and sore throat, so I'm guessing that he's been plagued by the Tonsilitis which gets him every Fall. Wish us luck!
Recently, I have gotten quite involved in the blog world of special needs children. It helps to know that there are other parents out there dealing with similar issues, and to read that they have the same struggles. I can't even begin to put into words how much it helps to have this support. Today, my heart is broken for a family. There is a sweet little boy out there who is spending his last moments on Earth. He has touched MANY lives in his short three years and will likely touch many more just today alone. If you get a chance, take a peek at this family's blog. They could really use some prayers today. Gavin Owens .
Carter had an appointment with his Pulmonologist today to discuss the results of his sleep study. After I left, I started to think about how much I really appreciate her and everything she does for Carter. It's a long drive home, so I had a lot of time to process what had happened and how I felt about it.
It seems like ages ago that we were sitting in the hospital room with a doctor who looked like he couldn't be more than twelve years old. This doc was pretty much telling us that Carter needed a Tracheostomy, and he needed it now. Many of the reasons he gave were valid, but we just couldn't bring ourselves to take that step quite yet. I'm not even sure that this particular doctor ever even used Carter's name. It seemed as though he was more intrigued by Carter's genetics than by Carter himself. It was at that point that we made a turning point in our parenting style for Carter. Up until then we had taken everything that the docs had told us almost as the word of God. It didn't matter that we didn't really think that he needed a heart cath....we agreed to it because the doc told us it was the right thing to do. After nine days in the hospital (because of the heart cath) we knew that we absolutely had to stand up for what Carter needed. We had enough of the hospital treating our son like a guinea pig because of his genetics.
That wasn't the only time that Carter was treated that way. After his cleft lip/palate surgery, we had a resident who was going over Carter's history with us. Granted, Carter's medical files can be quite overwhelming especially when it's the first time you get his case, but he was only supposed to spend one night in this unit before being discharged. As this resident checked him over, I did not get a warm fuzzy feeling AT.ALL. She kept drilling me about all of his medical problems and asked me over and over what was being done for each and every.little.thing. After her exam (when I started getting a bit nasty with her), she told us what her "plan" for Carter was. She acted like she was taking on the role as his new Pediatrician and wanted to change his feedings and such. Instead of one more night in the hospital, she was acting like he was going to be there for a few more weeks while she put her "plan" into action. Then she proceeded to tell us "obviously I can't fix everything that is wrong with him on this visit, but I'll do what I can". What?! Carter had been doing wonderfully and just needed to finish recovery from his surgery. We weren't there for anything else. This experience just made us even more protective of him. The point I'm making is that I can't stand it when some of these doctors act like Carter is just a giant folder of medical history. He is a person too. Yes, his genetics are a little different, but he is a person and deserves to be treated as one.
I know that this is probably not making any sense, but it is something that I thought about as I took my long drive home today. We had such a good visit with the Pulmonologist and I realized that part of the reason was that this doctor treats him like a person. She continually played with him during the entire conversation. She kept telling him how cute he was and how proud of him she was. She couldn't wait to see who he would grow into and couldn't believe how far he had come. After reading his sleep study, the doc decided that Carter just needs a little more Oxygen while he sleeps. We're upping him to 1 liter at night, and she told me that we could take him off of the O2 during the day as long as his saturation stays in the 90's. For the most part he can do room air while awake, so we just need to get him used to it a little more. The doc did tell me that she thought that some other docs might not care for her decision to not try him on CPAP, but she was looking out for Carter and truly thought this is what is best for him. She told us to come back in ONE YEAR (wow!) for another sleep study UNLESS anything came up that we needed her for. She told me that she is always there for Carter. Oh, and she also said that she expected that his next sleep study will have improved significantly over this one. Only time will tell.
So, I've been meaning to make this post for awhile. After Carter was born, my friend Crystal offered to do his birth announcements for us. I wanted to wait until he was actually home, and did a welcome home announcement. She did such a wonderful job customizing it for us. Check this out!
My point is, if you're looking for some fresh Christmas cards this season then you definitely need to check out Crystal's site: http://www.photocarddesigns.com/ . There is a link on the sidebar.
As promised, here is the article that appeared in Mike's work newsletter. I think that the reporter did an awesome job. Mike told her that she could use any pics off of our blog that she wanted, and this is the one she chose. Click on it to see it bigger. Enjoy!
I haven't gotten that article scanned in yet, so I'm going to try my very hardest to get it posted tomorrow. Instead, here's how our Halloween went...
The kids had a fun time. I felt like a bad mom because we didn't even carve our pumpkins until Halloween day. Ughhh! I hate it when I procrastinate (which if you know me, I do a lot of) and end up rushing things like this. In my defense, we had planned on doing it the night before, but time got away from us because Carter had a random bad day with his breathing. Here are the older kids carving away. Jovie's pumpkin was so tiny but took the longest to get the seeds out of. It was one of those rare moments when Mikey was being extremely helpful and cute about getting all of the seeds out. Carter slept through all of it.
Here's the very cute outfit that my grandma sent for Carter. Awww...isn't he the most precious boy! He had just woken up so there were no smiles coming from him. Can't you see how he would have a crooked smile...just like Edward?
Finally, it was time for the good ole' trick or treating. Jovie was thrilled that we colored her hair purple. Carter is looking at me like "seriously... what are we doing?", and Mikey was all business. Get the candy and move on!
We have another big week ahead of us. Tuesday is the big "hearing aid day" for Carter. We're so excited! Thursday we meet with the Pulmonologist to discuss the sleep study. She already sent us a letter with the results, so we know that she thinks that CPAP would be beneficial to him. No problem... bring it on!