I wasen't sure how to title this post, so I've left it blank... Lucas has been up since 2am, I have no idea how I'm going to survive the day on the little sleep I've had. Today we have to go to childrens, meet with the cardiology dept and also have pre op testing. They still aren't totally 100% positive that they will do surgery on 8/3, hopefully they finally make up there mind today. I honestly think that they might be looking for something that isn't there. He has a minor heart murmur, that I was told probably wouldn't ever need correcting, that its nothing to worry about, and his own cardiologist cleared him for surgery on Tues. However, the cardiologist in Boston aren't happy with that. I know kids with WS normally have issues with there aortic valve and what not, but Lucas dosen't according to his cardiologist he has issues with his pulmunary valve being shortened. I really just want/need this overwith, I'm not sayin that I want him to have surgery if its not safe, but I think that there has been enough time for the cardiologist to say hay, lets get a sedated ecco here to be safe now, instead of waiting for the day of surgery, why couldn't they schedule that before, its been 1 mos since we decided surgery was the best option, WHY do they need to wait til now, acouple days post surgery to start thinking they might want one?????? IDK, hopefully todays visits go well, I'll post more later...

Schedules......

Well, the surgery has been postponed to 8/3 as long as the cardiology visit on 7/28 goes well. I was really hoping to get this over with, but what is a couple more days. We didn't have any Dr's visits today, but tomorrow a nurse is coming buy because since we are on our 8th feeding pump, apparently they believe I'm doing something wrong and that why it doesn't alarm when its empty!!! Really doesn't make any sense to me, but if they want to waste someones time to tell me that I'm working the pump correctly and they don't know why they are always breaking that's fine by me.

Anyway, my brother Joey turned 15 today, HAPPY BIRTHDAY!!!!! He is an amazing brother, he always devotes all his attention to Dylan and Lucas when we go over there, and he even cancelled a birthday party so that we could baptise Lucas instead. Hence, why he is the godfather...

As I sit her writing this, I have tons of things going through my head, how do I explain to a 4yr old that his brother is going in for surgery and neither him, nor I will be home for about 5days? Or how is it possible that a child at 11 months will be going in for surgery that will last up to 12hrs?? And how many times can a child be put under anesthesia before it starts to affect him in some way? What will Lucas eat once he is 1yr old if he still has his allergy to dairy and soy? How will we afford to continue to commute to and from Boston for Dr visits and surgeries and follow ups? And amidst all this, how will I maintain a "normal" life for my Dylan???

I guess I'm just alittle on edge recently, I've been told by Steve that his family keeps asking him why I'm so snappy and moody all the time. Don't they realize what I've been going through? Having at least 4 visits a week with Dr's and therapists, raising 2 kids, taking care of the house, dealing with all the issues associated to Lucas and all that in tales, living life on my phone since I'm constantly talking to Dr's and therapists, nurses and insurance companies, I'm sorry I don't find the time to sit a chat with my in laws, but to be perfectly honest, I don't get to pee by myself, the only time I'm totally alone is when I go on a "mini vacation" and check the mail! That's it, I check the mail 6days a week and that is the ONLY time I'm truly by myself, and they wonder why I'm not all about there family and what's on there mind, and making sure that I'm always in a good mood around them, not that we've ever really gotten along in the first place. As I'm writing this I'm realizing that if any of them ever read this $#@t will hit the fan, but I promised myself I would be totally blunt in this blog, since that;s how I usually am in life, I say it as it is and if you don't like it, don't' ask, I think that's why they always ask Steve what's wrong with me and never actually ask me. I probably shouldn't be like that, and maybe its wrong to be rude, but I honestly don't realize that I'm doing it. I'm hanging on to "normal" by a string and I'm just trying to survive, I really don't think anybody truly realizes that.

Well, its almost 9pm and since I have to suction Lucas 2-3 times a night so he doesn't aspirate, I'm going to bed, more later...

He's officially 4

Well, Dylan offically turned 4 on Friday. We had such a great day. We went to Chuky E Cheese bright and early and went to the airport to see the planes. Then we went to the local park to play on the playground. Dylan had a blast having an entire day all about him.... Its great to think about how he's grown in the past 4 yrs. He really is turning out to be a great "little man"

Lucas was baptized on Sunday. It was a small ceremony, his Auntie Meagan and Uncle Joey are his godparents. We didn't do anything afterwards. Just came home and spent the day as a family (Steve, Dylan, myself, and Lucas!) it was really fun. (I'll post some pics once I get them!)

Lucas had PT come yesterday. They really like how he is still working on sitting, and on crawling, when you try to help him crawl he starts doing what they call the bear walk. To be honest, since we always call him alittle monkey, I thought he looked like a Monkey and started laughing during the visit. He has also started a new trick in his bouncy seat, he sits straight up and then touches the floor. He thinks its funny when I tell him to stop.

Lucas will definitely be going in for surgery on 7/31, from what they've told me he will be getting his Chairi Malformation corrected, and depending on how long that surgery is, will determine if the correct his tethered spine also. They said that he will be in the hospital for atleast 5 days. I'm really not looking forward to this surgery but I know it needs to be done.

I'll post more later.....

another day, another Dr's appointment

Well, its official my life now officially belongs to the Dr's, nurses, and therapists. Since his WS diagnosis we have atleast 1 appointment everyday, its really starting to wear on me and Dylan. I just feel like I'm constantly sending Dylan to a sitter so I can yet again go to the Dr's. I'm starting to wonder if this will ever end! Right now, anyways, there doesn't seem to be an end in sight. Lucas is scheduled to have surgery at Boston Children's Hospital on 7/31 so along with all our other appointment, I'm now adding surgery, pre op, and post op to the mix. Hopefully everything goes smoothly. We are now also trying to get him baptised prior to his surgery.

We also received the final determination for the sleeping wedge he needs, according to the insurance company its a convenience item!!!! I guess I can kinda see were they are coming from, it is a convenience to not have to worry about your 11 mos old strangling himself with his feeding tube, aspirating on his drool, or pulling his feeding tube out by rolling around in his crib.... In the mean time, I have to figure out how to safely put him to sleep, since he has learned to touch the ground while in his bouncy seat, its just a matter of time til he tips it.

I was however, able to get the supply company that handles all of his feeding supplies to send us a different backpack for his feeding tube and pump, the bag he had was taller then he was, this on is nice and small.

Well, its official, at 10:16am tomorrow my DillPickle will be 4yrs old. I asked him what he wants to do for his birthday and his response was "I think it would be nice to go to the pizza place with the games and stuff, that would be nice I think...." So, tomorrow Dylan, Lucas, myself, our friend Krystal, Conor, and Kelsey will all be going to Chuck E Cheese to celebrate Dylan's birthday. I'm determined to make it a really great day that is all about him, he's been such a trooper with everything that's been going on with Lucas, especially considering he didn't even want a brother, and still occasionally asks if we can send him back to the baby hospital to live. It kills me when he says things like that.

When I get more definite information regarding the surgery, I'll make sure I post it.

a day of mixed emotion...

Well, today was productive, this morning we had the Swallow study specialist, Judy, the nutritionist, Kim, the OT Jeanine, Pam our coordinatior, and myself here for Lucas's visit. We've collectively decided that Lucas isn't eating food by mouth not only because he cant swallow, but because he has decided its not safe. Since he is constantly choking I tend to agree with him, who would think an 11 month old can make decisions like this themselves, but apparently they do! They also want to have a video camera placed in his room to record his choking in the morning since that is the worst time for him since he started sleeping through the night, he chokes and most times vomits every morning. It was also a collective decision that he NEEDS something to elevate him while he is sleeping and straps him in so that he dosen't wrap his feeding tube around himself. All in all, it was a productive visit. After that I was able to get some laundry done (shocking as it may be!) and also was able to convince the HHC that Lucas needs a smaller bag for his feeding tube, since he will be having the feeding tube longer than I had hoped, I want it to be more to his size incase he starts crawling or even walking prior to getting off the pump.

It was after all this that I hit a roadblock, my appeal for the RESQ wedge for Lucas was denied. Even after having the medical director talk to his GI Dr they still don't feel its medically necessary. I used to work for an insurance company, and I understand the bottom line, and wanting to save a buck, but how its it possible that a child needing a wedge due to his severe acid reflux and constant asperating, and needing it to have a strapping system so that he dosen't strangle himself with his g tube, or pull it out not medically necessary, I just don't get it.... I understand I don't have any fancy initials at the end of my name, but common sense would say this is necessary, its not like I was asking for the $11,000.00 bed I really want him to have so we never have to worry about DME for his bed again, I was only asking for a $500.00 wedge! And now, I can't get anyone in the appeals department to answer there phones so I can appeal the denial of my appeal, and to see if since the man with the fancy MD at the end of his name feels this isn't needed, what exactly does he expect me to do with Lucas to sleep? I mean if they are going to deny this, they should atleast inform me what they feel I should do! Now I have to figure out how I'm going create something for him to sleep in. He has almost tipped his bouncy seat twice today since he can now sit himself up and touch the floor.

On a happier note, Dylan was a super doper good boy during the home visit today, he sat on the couch and played his Leapster handheld while watching Cars on TV.. I was SOOOOO proud of him.. He is turning in to such a well behaved little man. And Lucas has decided that my leg makes a very nice chew toy.

I'll write more tomorrow after Lucas's eye appointment, he still has his lazy eye and is now constantly crosseyed... (Hi Bumpa!!!!!!!)

Its a party!!!!

Well, again, I know its been awhile! I truely have been busy though. Since my last post, Lucas is now on a 24hr feed through his feeding tube. We finally went to have a 2nd opinion with Neurosurgery at Boston Childrens Hospital and found out that his Chairi Malformation is worse then what we were originally informed. His cerebellum is pushing into his C2 so surgery is required. The Dr there, Dr Madsen, also feels that Lucas should be seen by the Williams Syndrome Clinic people sooner then January, and is having his assistant work on this. He now weighs 18.7lbs and is growing like a weed. He also had 2 hearing tests that he failed, however, I personally think its because of the fact that he was to curious looking at the women doing the test, then the actual test itself. Because he's failed though, we now need to go have a sedated hearing test done. I'm currently fighting with the insurance company to have a sleeping wedge appoved and paid for so Lucas dosen't have to sleep in his bouncy anymore, and I'm waiting to hear there determination. We were back to Childrens Hospital today for a urodynamics study to make sure that his muscles are working in his bladder area, and sofar, that has been the worst experience EVER!!!! Lucas cried the entire time, and I mean cry, he never once stopped crying for more then 10 seconds the entire test. My mom came with me and I think she might have cried almost as much. I think I would have been the same, but I had to be strong for Lucas.

This past Saturday, we had Dylan's 4th birthday party, it was a blast, we had water balloon fights, and a pinata and ice cream. Dylan got everything he asked for including a Leapster handheld game and the Leapfrog Tag pen. And he also got a shaker MP3 player so now I don't need to listen to his music in the car anymore, life is good!!!! During the water balloon fight, I think the adults had more fun, then the kids did. We were throwing each other in the kiddie pool and throwing the balloons at each other, of course my little man was all about protecting his mom, he kept telling me to go to the camper were its safe until he tells me to get out, it was so cute. I can't believe my "little dill pickle" is 4. I seems like just yesterday I was bringing him home from the hospital in his little doggy outfit. Boy how times have changed.

Well, I've also had to change nutritionists, I think its important for any medical professionals that see Lucas realize that he has Williams Syndrome, and be OK with it. I think its a shame to waste time and money for a women to come to my house and tell me that my child is malnurished, needs to increase his intake by 14 ounces and refuse to see a William Syndrome growth/height chart because "I only use standard growth/height charts since that is what is provied to me." So we are now seeing a new nutritionist and the swallow study women on Tuesday, and eye appointment on wed, groceries and errands on thursday, and Dylans actual birthday on Friday. Other than that nothing much is happening! I'll post again, when I have a break....... Oh, and I'll also post pics later of Dylans birthday party.