Check out his new ride........

Sorry its been awhile since I've posted last, I really don't have a good excuse, except I have the cleaning bug, and I've started to love to throw things away. Since my last post, Lucas has decided that eating food or drinking a bottle from his mouth really isn't all that exciting, so he isn't doing it. He is now on an 18hr feed through his pump, and some days its good and some days its not. The VNA no longer comes to the house to check on his site since its healing nicely. We are hoping to have a Mic-key put in by the end of August. Lucas was able to meet his great grandparents, they are visiting from Florida for the next 6weeks, we are hoping to spend lots of time with them. And since he is on the pump so much, and not able to spin around in his exersaucer, an unknown donor bought his this "sweet ride". Dylan says he drives a "lightening McQueen race car", since we are still super jealous, he is constantly trying to get into it because its his turn to ride around in the race car. Lucas had a GI appt last week, he now weights alittle over 18lbs (yippee!!!!) Dylan is super excited that his birthday is coming up, every morning when he wakes up he asks if its his party yet, then he whines, because its not. I'll try to post more later.

The big bad wolf........

Ok, first things first, Lucas is doing well, according to the Dr's he has become lazy and is refusing all bottles, because of this I'm gravity feeding him during the day and pump feeding him at night. I'm learning that this is harder than I figured it would be, I thought I could put the food in the pump during the day say at a morning feeding hit a button and poff it would feed him, nope, not the case at all, so I've learned to plan my day around feeding because I'm really not to keen on the idea of doing a gravity feed in public and entertaining a 3 yr old at the same time. Also, I've learned that eventhough I can feed him in less then 5mins, I shouldn't, it comes out alot quicker. The Dr's have me doing this for atleast a week, I figure there usually right atleast 75% of the time, so I might as well give it a try. The VNA came by today and Lucas has gained another 5ounces since there last visit. He is almost at 18lbs now.

Ok, now on to why I titled this entry the big bad wolf. Everyday when Dylan wakes up and a couple of times throughout the day he will ask "where's daddy?" I answer the same everyday, he's at work. Then Dylan will ask "why?" So we've started telling him that Daddy works so I can stay home with him and Lucas and so that we can still pay bills and buy stuff. So yesterday on our way home from the pharmacy he asked the infamous "where's Daddy?" I explained that daddy is at work, and instead of asking why, he asked what does daddy do at work. I explained to him that daddy delivers sheetrock on his big truck, this is when he asked the usual, WHY? So needing to come up with a 3yr old answer I explained that Daddy delivered sheetrock to people who are building houses, I also had to explain what sheetrock was (I told him its the walls of a house!). Then he asked if people need to build houses because the big bad wolf blows them down? I really didn't know how to answer this one, so I just said maybe??? After a few minutes Dylan tells me that he has an idea. He's decided that he is going to find the bad wolf and beat him up, that way people won't loose there houses, so guys won't need to build houses, then Daddy won't need to deliver sheetwock (this is how he says it) and he can stay home with us and fish and stuff. I then look in my rearview mirror and Dylan has his hands around his eyes (like Diego does when they need to look through binoculors) I asked him what he was doing and he tells me "I'm looking for the wolf's eyes with my nokulars, I think he's asllleeep!"

So after much thought, I've decided that in some ways I really like the mind of a 3yr old, I would love to know how they come up with these things. I'll write more later...

We had an OT visit today and they brought PRESENTS.... They brought Lucas a Tumble Forms feeding seat w/base. He looks so stinken' cute in that seat. His OT, Jeanine, also showed me how to massage his gums, and different strategies to get him to start eating food, we are going on 2 mos with no food other than formula. His appetite hasn't been what it should be, but I'm hoping its due to the fluid they said is in his ear. I also realized the amount of jealousy that Dylan has towards all the attention that Mr Lucas is getting. During the OT visit, Dylan asked if he could go sit on the stairs I said yes, since it was the first time it had stopped raining, next thing I know Mr Dylan is standing on our stairs in my front yard with his pants around his ankles peeing, yup, that's right, he was peeing in my front yard for the whole world to see. I almost died in embarrassment...

I've also decided that after much thought and research I've scheduled Lucas for a 2ND opinion on his tethered spinal cord, I just don't think that's a surgery that should be delayed until "something happens" So with that said Lucas will be going to Boston Childrens Hospital to see a Neurosurgeon there. Other than that, nothing much else happened today. Since its rained most of the day, we didn't get to do much.

over the weekend

Well, not much happened since I last posted. A visiting nurse came by to check on Lucas and his feeding tube, she said it looked great, just a little red and to keep an eye on it. Dylan, Lucas and I were able to take a walk on Friday since the rain stopped for alittle bit and it was quite interesting. Dylan has a powerwheels Jeep that he got from a neighbor of ours and he has decided that he is a race car driver in this Jeep, so I had Dylan zooming up and down the street (he reminded me of the shriner guys that ride the mini cars in the parade), Lucas was comfy in his Jeep stroller he was pushing all the buttons and "driving" it aswell, and then there was me, running to keep up with Dylan. There has got to be something wrong with that picture, I'm the oldest and I was running, not driving or riding, but running. My neighbors all came out to see us, and they agreed, I should have been getting the ride, not Dylan.... Saturday, Dylan went to the park with his Aunt Natalie and cousin Dakota, Lucas watched Dylan playing on the playground while I ran an errand, it was wierd being on my own without any kids, I really didn't know what to do with myself and hurried back just so I could have the commotion of 2 kids. Sunday, we went to a family dinner to celebrate Uncle Jay's bday, Dylan liked saying "happy birthday....old man" and then he'd run away.. It was really cute. Also, Sunday, Lucas reached up for me from his bouncer, this was a first for him since it was the first time that he had reached out with both his arms without me asking him to . He was grunting at me and blowing raspberries at me and I looked up at him and he had his arms out towards me. It was a great moment... Today we have our regular OT visit, I'll post more later....

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:)