Mommy your a toy.....

Well I haven't posted in a few days. On Wed we went to see the GI Dr, Lucas now weighs 17.4lbs. He said that the tethered spine could be the cause of his major constapation but that isn't something that we can know now, we will need to keep an eye on it. He is also going to discuss with the neurosurgeon to see if the ciari malformation has anything to do with why Lucas dosen't swallow. I am really starting to be concerned with the fact that he will be 1 soon and still isn't eating anything other than formula, what will he eat when he is 1, one can't survive on formula alone..... Dylan came with us to the Dr's and then I needed to get the car inspected. He was SUPER good doing both, however, it was to late for me to go anywhere with him as a special treat for being so good, so we went home, and thats when it started. Since the weather was crappy, as usual these days, we didn't go outside and I could tell Dylan was tired, but it was to late for a nap, so everytime I'd so no to something (like playing soccer/football in the house) he would tell me "mommy, your a toy" or his new favorite "your a rapoooochi" (the GI Dr's name is rapucci and Dylan thinks he is getting away with saying a not so nice word when he says his name) so this is what he has been doing for the past 2 days whenever we say/do something he dosen't like. Sofar, I've been a toy, a rapoooochi, a buzz light year, and a giraffe...I figure if with all the bad words out there, being called a toy isn't that bad.

Thursday we went to the ENT Dr for a hearing test. Lucas didn't do so well, we are hoping its because he's only 10mos old and not very good at following directions. They said that his right ear has fluid in it and didn't pass any of the tests, and his left ear didn't pick up any soft sounds. So he is getting retested in 4weeks and then if they results are the same, we are back up to Lebenon to have a sedated test done. Yippee :(

Not much will happen today, the VNA is coming at 9am and thats pretty much it. I'll post later tonight.

rain, rain, go away!!!

This is my phrase for the day, I've decided that rain brings out the whine in a child no matter what the age. Nothing really happened today since its been so rainy outside. When Dylan gets made he'll say something like "your a toy" or "your a peanutbutter sandwich" and he thinks he's hurting your feelings. So today he called me a peanutbutter sandwich and I called him a monkey, and he sat on the couch with a sad face and said, "but mom, I don't want to be a monkey, I want to be Dylan Pickle. It was the cutiest thing . I've always called him pickle and usually he gets mad at me. I'm hoping to get sleep today but since both children napped around 4:30, its not looking to hopeful.

He found the tube.....

So yesterday was an interesting day. I woke up to Lucas CHEWING on his g tube, he didn't pull it out but since he was still hooked upto the machine there was slack there, and he was chewing on it. I almost passed out.. I've been alittle weirded out about the whole feeding tube thing, and to find him chewing it was totally disturbing to me, so one of my goals today is to "find a fix". Yesterday he also had his first PT visit. They showed me how to apply pressure to Lucas to help him "find his parts" I've never heard of this before, and I'm not sure how it will help but I did notice that it did calm him down, so we'll try it. They also explained to me that he favors 1 side when he rolls so I need to start helping him roll to his right instead of his left. After that we rushed to Grammy's house to go to a birthday party for Brady, Dylan was sooo excited he was in the car before PT even left our driveway. He had such a good time, he had cake an totally kicked butt hitting the penguin pinata, and the best thing was the bounce house. He totally loved the bounce house with the truck on top. He was in that thing for most of the night, and talked about it most of the ride home, until he fell asleep. This had been the first time that side of the family had seen Lucas since the diagnosis of WS and everything else, and even though I was nervous, I think it went over well. We don't see that side of the family alot so it won't be in there face so much, but it was still nice to see that they accepted him, issues and all. Dylan still "air fishes" yesterday during Lucas's PT he came running in to tell me that he caught a shark in the neighbors yard, and I had to go help him "reel'r in mama". Goals for today are to find gauze and the pee pads they use in the hospital so I don't have to keep washing his bouncy seat every morning, contact the neurosurgeon to see if she has reviewed the swallow study results, scrapbook, start an esty, and bake with Dylan. Since its raining today, I think I'll also let Dylan blow bubbles at the windows so I can wash them.

I shouldn't have said the sleep word!!!!

Well, I knew once I hit the publish post button that I was probably in BIG trouble, and I was right. Lucas slept like crap Friday night, he was up from 12:30 til about 4am and then was up again for the day at around 7am. He also found his tube. I woke up to hearing the tube hitting the IV pole and the crib, I walk into his room and there he is swinging his feeding tube with all his might with a huge smile on his face. It was really hard to discipline him for that since when he has a huge smile on his face he looks like budda, but I did firmly tell him no and that he could get boo boo's and all he did was blow raspberries at me and smile, I actually think it make him shake it harder against the crib. So now I've started taking receiving blankets and wraping them around his legs and the feeding tube so he dosen't pull on it when he wakes up. He did sleep better last night, hopefully that continues.
Dylan has gotten so good at casting his fishing pole that he can now make it across the street and into the neighbors yard, he is totally excited about it, the neighbors, not so much.... We went to a cookout yesterday and grampy and nanny's house grampy took Dylan to the park were they was a girls tball game going on, Dylan decided he would help them by playing the outfield. Apparently a ball was thrown into the outfield and no one was getting is so Dylan ran to get the ball. He wants to be part of a team so bad, he's so cute. He also started telling knock, knock jokes. He'll go Knock Knock,
Whose there?
Peanut,
Peanut who?
Peanut, apple, banana, elephant...
Then he starts laughing so hard it comes from his belly. He ends up getting everyone else laughing so he thinks its the funniest joke in the world.
Well nothing else really happened this weekend. We don't have alot of appointments this week, but I'll update when I can.

and then there was SLEEP!!!!!!!

Well, its official, I finally feel comfortable saying Lucas is sleeping at night. That's right, we have gone an entire week of atleast 7hrs straight, without waking up!! This is all thanks to the feeding tube. Even though I'm totally not OK with him having the g tube, I thank the g tube gods every morning for helping my little man sleep. We didn't have any appointments since Tuesday, it still totally shocks me to say that, to go from 4-6 appts a week to only 3 appointment all of which were at the house is still an adjustment that I need to get used to again. I was able to clean, clean, oh, and scrapbook. Dylan has also been sleeping earlier he falls asleep around 8pm and is waking around 8am. He has totally loved the mailman coming this week and LOVES all the gifts that everyone has sent him (thank you very much grammy, and great bumpa and great grammy) Seeing the smile on his face when he saw that he had packages from the mailman and Lucas didn't was priceless and something I'll never forget. Even though I didn't have alot of appointments this week, it was still a very enlightening week. After attending a wake and a celebration of life for my friends 4yr young son, I've learned that like Ryan did I will live each day to the fullest, and never take anything for granted, I've decided that thanks to him, I won't sweat the small stuff, and even most of the really big stuff. I've decided that my house might be messy some times (alright most of the time) but my kids are loved and happy, I've learned that I'd rather take 40mins loading the dishwasher since Dylan likes to do it, instead of brushing him off and only taking 10mins to do it myself. Bugs might be gross to me, but to a 3yr old they are the greatest thing there is outside, and catching them is even better, that I might not like spiders, but if you follow them, you'll eventually see were they live, and man do webs look cool in the sun. So I wanted to make sure that I say thank you Ryan, thanks to you, I've learned the importance of being a kid, and making the most of everyday regardless of what actually get accomplished, memories will be made!

Kids are great

Well, not much has happened since my last post. I had a friend cut my hair to fix the mess a hairdresser did last month. It looks really good. Lucas had a nurse from the VNA stop by on Tuesday and she said that his tube looks good, its alittle red, but aslong as I turn and clean it, it will be fine. She also checked his weight and he has gained a couple ounces. Then we had a nutritionist come by and she started to tell me that his weight and height didn't match, and she wanted me to increase his calories and feedings about 10 ounces. Then he woke up and she saw him and changed her mind. She now only wants me to increase his intake by 2 ounces. ( I had a feeling she was wrong, and kept saying something!) I've decided that these visits should be interesting! Dylan is getting very good at what I like to call "air fishing" he sits on the front stairs or the back of the truck and casts his fishing poll into the air and "catches fish". He can almost make it to the street from my driveway side casting. He has decided that he loves fishing and has joined a football team that put him on the blue team. I still haven't figured out how to get him on a football team this year, but I'll find a way to make it happen.... On a sadder note, I attended a wake for Ryan last night, it was so sad. Ryan's brother Colby was funny though. He was sitting in a chair with a friend, turns to him and says "you see that silver jar, that's my brother in there, can you believe it!" Desma said that he is still shocked that Ryan is "in the jar" the celebration of life is today, I like how that's stated, I don't think there should be funerals anymore, those are to sad and the occasion is sad enough. Having a celebration of life makes it OK to laugh, and think about happy moments instead of just how sad the occasion is. I remember Ryan and Dylan used to play with the cats together at Bethany's house, they would sit on the floor and tease the cats for hours, and when they were done, they'd move onto Cooper the dog. He will be missed, but never forgotten. His life will live on through everyone's memories.

not much happened today.

Well today was really a slow day. Lucas had occupational therapy today, it was the first time that Dylan had been home for this and it was definitaly an experience. They were able to show me how to still give him tummy time to work on his low muscle tone in the hip region eventhough he has the feeding tube in the stomach. Also, we are starting to discuss ways to get him to start eating baby food. Also, Krystal came over and fixed my haircut from hell. It now looks totally awesome and once the mess the other woman did to my hair grows out this will finally be the haircut I've been looking for. Lucas took an awesome 3hr nap today so I was able to get alot of things done. If this keeps up, I'll be a happy camper:)