Hold on to your seat, its going to be a long ride.....

Well, alot has happened since my last post, Dylan started and stopped soccer, the coach and I decided that soccer wasen't really the best sport for Dylan, he likes to tackle whoever has the ball and to be totally honest he wasen't really having that great of a time since it was soccer and he is a football star.... I'm now the proud mom of a soccer dropout!! He is doing great in school and getting closer and closer to writing his name unassisted. He enjoyed being buzz lightyear for halloween, but since this was his first experience at trick or treating, he only made it down 2 streets. He has also decided that no one is allowed to have a birthday before him, because he needs to be 5yrs old so he can play football and his coach is waiting for him.. He is so stinken cute...

Ok, now for the long part of this post. Lucas.... We had a very informative trip to the Williams Syndrome clinic. Most of the stuff they told me I kinda already knew, developmentally he is at about a 5-6mos level, his sensory issues are alittle worse then I thought, but we are working on fixing that. And after talking with the surgeon for our 2nd opinion on the fundoplication and pyloroplasty we've decided not to do surgery. He failed his hearing test, again, though I knew that was going to happen, Lucas is more interested in the women sitting in front of him then the pig that is moving and making low tone sounds to the left or to the right, yup, he's a ladies man... They've recommended OT/PT weekly in the home through early intervention (he was seeing each twice a month) and also that he receive OT/PT outside of the home aswell to work specifically on his sensory issues. I talked with a behavioral Dr who let me know what to expect from him this upcoming year, how to deal with discipline and that he can't be punished for his actions until he understands if/then statements. Also, after his speech evaluation I'm starting a word book for him as well as starting basic sign language. Most kids with WS don't start talking til after 3yrs old, and he needs a voice before then. Ok, now for the biggest news of all, are you ready, Lucas is EATING, yup, that's what I said, as of 10/18 Lucas has decided that he will eat baby puffs (as long as they come out of a certain container) and also any stage 3 baby food. He now eats 3 times a day plus an unlimited amount of puffs. He is off the tube alot more with only getting 5 quick feeds during the day and then a nighttime feed. Once he starts drinking by mouth I think we should be able to get rid of the tube all together. That would be nice! He is also sitting independently now. He sits on the floor and plays with his toys for at least 10mins now. I think the fact that he is off the pump more is making him ok with being independent more. We are still working on his lack of sleeping and I'm not sure when that will be fixed but I'm learning to live with lack of sleep, its not so bad when you adapt to it...

More later and I'll try to get some pics up..

school has started and the leaves are changing...

Well, since my last post alot has happened. Lucas had a stomach emptying study and his GI has decided that he needs to have a fundoplication and also a pyloplasty. Both of these surgeries scar the cr*p out of me so we are going to have a 2nd opinion and consult with the surgeon before making a decision about what to do. Until then Lucas is on minimal calorie count and basically just getting enough to survive. He is still fussy most of the time and has started to have temper tantrums but since he can't talk, walk or crawl, he just screams at the top of his lungs until he gets what he wants, its made for some very long nights. He is however, able to sit independently for about 5mins, sometimes longer, which is something we've been working on for a while.

We also found out that his appointment for the Williams Syndrome clinic has been moved to oct 14, 15,16th this is exciting since we originally couldn't get in til January, I'll be excited to see what they have to say and if they can help with his sleeping issue.

Dylan dosen't like soccer very well, he keeps telling everyone this is a practice for when he can play football. We went to the circus last weekend as a suprise, Lucas went to grammy's and Dylan, Daddy, and me went to the Circus, he enjoyed seeing the clowns, elephants, and tiger.

I'll post more later since Lucas just woke up.

We've been busy......

Ok, so we've had alot going on, which is why I haven't had a chance to update the blog. Labor day weekend we went to the Hopkinton State Fair for the day, Dylan had a great time. I'll post pics later, but Dylan enjoyed seeing all the animals, especially the pig named Wilber, he weighted over 800 pounds and was taller then the pen that he was in. He also liked mooing at the cows. There was a petting zoo that he fed goats in and we also saw a horse that was over 1000pounds. He also was able to watch the demolition derby, he loved how all the cars were crashing and since he was sitting in the front row he was covered in mud when it was over. Steve said he ended up falling asleep, on his shoulders in the middle of the last run, I'm so glad he had a good time, he deserves it. He also bought himself his very own cowboy hat from a real cowboy! Lucas also enjoyed the fair he sat in his stroller for most of the day just watching the people and animals.

The following week, Dylan started preschool, he went last year aswell, so it made it easy for him to get into the swing of things at the school. I'm glad he's doing well and hoping he will make great strides this year. He also started soccer. He is super excited about playing and practices all the time (ofcourse he practices more inside then outside) He is in a program that has 4 soccer teams in his age group and he will be having practices and games this season. I wasen't able to attend the 1st practice, but will post pics of his 2nd practice that I should be able to go to this saturday. He has also grown ALOT, I had to start shopping in the boys section of the store instead of the toddler section. I held out aslong as I could, but the time has come, my little boy is growing up, literally.....

Lucas is still having his highs and lows. He has started clapping in excitement and also has learned to yell, he yells at everything! He yells at the cats to get there attention, he yells and claps in excitement when he watches Dylan play and run around, and he yells at me and the Dr's when he isn't getting any attention. He is getting better at sitting independently and can sit for almost a minute before he falls backwards. I think he falls backwards when he realizes that your sitting next to him and not behind him, but this is something we are working on. His neurosurgeon cleared him from the surgery at his post op visit and says everything has healed wonderfully. His eating and vomiting however, has gotten worse. Last week he vomited so much his GI wanted to have a GJ Tube placed (its a tube that basically bypasses the stomach so the food dosen't sit there) we were hoping that this would "fix" the problem. So, I packed him up and went to Dartmouth in Hanover (not by choice, since I don't particularly like this hospital,but since its was a quick in/out procedure, I agreed.) 2 hrs into the 90min procedure the radiologist let me know that they weren't able to place this tube since his lower stomach muscle wouldn't open at all, because of this he was admitted......In the interest of time, long story short, we were in the hospital for 3 days, they never looked at his stomach, only his head, kidneys, liver, and galbladder, they medicated him with an antiseizure med to stop the vomiting (since it did stop it, I was fine with him starting this med) and we were finally able to leave. They also switched his tube out to a Mic key button so feeding would be easier, and time off the pump less stressful.

This brings us to today. Lucas has been up since 3am vomiting (it started slowly on wed, and has progressively gotten worse) He has now vomited everything that he has been given through his pump. I'm waiting for the Dr's office to open to see what they would like me to do.

I have pics of Dylans first day of school, the day at the fair, and also pics of Lucas both in and out of the hospital that I will post later. I need to get the kids dressed to bring Dylan to school.....

Dylans 4's and 2's

So today was a regular day full of errands and staying cool. I did alittle house work, made brownies and did some cleaning. Nothing major, until......
Dylan had his 4yr check up tonight, he is perfectly healthy but needed for vaccinations. Not a happy camper, he cried so much and I felt so bad for him. They told me that they would hurt especially 1 of them. As we were leaving this is what he told me:
He is 42lbs....He is 42 inches....He is 4yrs old... AND he had 4 shots, 2 in each arm.
Thats alot of 4's and 2's .
He also informed me on the way to Starbucks to get his apple juice box in the green box, that he dosen't like getting shot and he wants to be like yesterday when he didn't have 4 holes in his arms. He also informed the starbucks women that he has 4 holes in his arms.

Its official, the mind of a 4yr old is absolutely amazing!

Just another manic Monday........

Well, the new formula (Neocate Jr) is doing good, here is what I've learned sofar.... First, tropical neocate makes him smell like tang allday skin, pee, sweat, everything. And Chocolate Neocate makes him smell like chocolate necco wafers. Also, Lucas dosen't like the chocolate one AT ALL.... With that said, we've decided to just stick to the unflavored, I think that since he is just eating through a tube, and your tastebuds are in your mouth, flavors aren't really much of a need and is rather just an inconvienent extra at this point.

Today Lucas has his routine OT visit, since we have to retrain him to eat we need to show him that food is fun and won't hurt him, so now he gets to do what every parent has at one point or another said to there child, you ready for his, he gets to play with his food! I get to put his food on his tray and give him a spoon and let me get as messy as he wants and not touch it or stop him, since its always been instilled in me to not play with your food, this is harder then yeah think, he sits and plays with babyfood bananas and makes a HUGE mess and I just get to sit there and do.....nothing!

Dylan did very well during the visit today, he is doing alot better with the fact that Lucas is getting the attention and not him, he still has his moments but given the circumstances and everything he's had to deal with this past year I think he is doing beautifully. He is however, testing the waters on what he is able to do by himself and what decisions he can make on his own, he's becoming very independent, and at times I miss my little boy. Why do they need to grow up again?

Anyways, off to try and get Lucas to bed, hopefully he falls asleep soon and stays sleeping.....

Ok I think I just set my phone up so I can blog from my phone. I just wanted to test it.

Feelin Hot Hot Hot!!!

Well, its official, its HOT!!! Normally this wouldn't bother me at all, I mean there is the beach, pools, lakes, water parks, but with a child that is post op with stitches that can't get wet, there isn't much to do but stay inside. Having an active 4 yr old, this task isn't easy!
Lucas had his 1 yr check up today, he now weights 19.4lbs (he was 19.5 the day of his surgery) so we are pretty excited about this. His PCP totally shocked me when he whipped out the WS charts explaining to me that eventhough he can't chart Lucas in the computer on the WS chart he will keep the printout on him so that they can accurately track his progress, so he showed me how Lucas excells on the WS charts for weight, height, and head circumfrance, and also how he is only in the 7th percentile for weight on the "normal" chart, and in the 57th percentile for length on the "normal" chart. We then went to the part I dislike the most: milestone questions, now I know that due to the WS he is delayed but it wasen't until he asked me what Lucas can and can't do I realized how behind he is. Basically he said that in a "normal" scenerio, Lucas is hitting milestones a typical 5mos old would hit and to be honest that felt like a slap in the face, he wasen't mean about it, I just didn't realize how behind he was since I've only been focasing on the fact that he has gone 15days with no meds for constipation, and that he is finally sitting in his walker/jumper again since surgery, and he is using his hands more, and watching people more, and yelling and being vocal more. The Dr did say that he is happy with the progress he has made, I guess since I've never thought about the actual # he is behind it never phased me til now.
After the Dr's appt we went to have a picnic at Whites Park in Concord with my MIL, I wasen't totally happy about this since typically my MIL and I don't get along, and she does quite often suffer from what I call "open mouth, insert foot syndrome" but hay ya never know, she could suprise me!!!!! She didn't. While having the picnic and Dylan is running wild on the playground I explained to my MIL's sister Susan that the public pool there is closed due to the fact that there was a drowning at another pool in Concord yesterday so they closed them all lastnight. I also explained that I didn't have alot of the details due to not hearing the entire story on the news but that I know that it was a little girl and I wasen't sure if she was still alive or not. Well, my MIL responds with "well hopefully she didn't because who knows what problems she'll have after that...." When I tell you that I was in total shock that that kinda comment came out of this womens mouth is an understatement, I guess I should have totally expected it given the syndrome I've decided she has (yeah know the open mouth insert foot!) and I totally consider myself lucky that Lucas sofar has had mild issues compared to most, but I honestly wanted to just turn around and ask her how many issues Lucas would need to have til she felt that way about him, I mean how stupid can 1 person be????????? Ok, now that the shock of that is over, she then asks me what size clothes I'm buying for Lucas, I explain 18-24 months depending on what it is (summer/fall/winter clothes) she just looked at me with her mouth open and was like well, I bought him a 6-9 outfit for his birthday, I thought for sure it would fit him, (and then goes) the last time I asked you that is the size you said he was wearing, I looked at her and was like, the last time you asked me what size clothes he was wearing, there was still snow on the ground! Alot has changed since then. It was on that note that I decided to leave the picnic, and was then followed by my MIL and her sister as they invited Dylan for ice cream without even asking me (wasen't an issue that they wanted to go for ice cream, but they should have atleast asked) so I followed them to an ice cream place, and we had ice cream, all was good, and that was the end of that.
That was pretty much our entire day. I'll post again tomorrow, hopefully we are going to a waterpark in Derry.

Sorry its been so long.... Again,,,,

Well, its been EXTREMELY busy here recently, which is why I haven't posted, for the most part!!
Lucas had his surgery on 8/3, it was delayed for a few hours due to them needing a bed for him in the ICU, but the surgery itself went well. He was in the ICU for 2 days due to some minor breathing issues (his vocal cords were swollen) and low and behold, my son now has teeth.... He cut his first tooth the Wed we were in the hospital. It was actually funny, it was during the nurse shift change and he started screaming and thrashing around his crib (after having surgery on the bottom of his spine and his neck) the nurse asked if this was normal and then gave him morphine when I said it wasen't, that night, I felt his first tooth. Being in that hospital has made me aware of the fact that eventhough I might sometimes have a pity party, things could be worse, I witnessed things in that hospital that I'll never forget, things I still see when I close my eyes at night. On Thurs his roomate was a 2mos old girl that had the left side of her skull removed, it was 1 of many surgeries and her family couldn't be there, I mean she had no one except volunteers and nurses helping here. I still see her face and wonder all the time what happened to her. I've also learned that I'm alot stronger then I thought, I've never been a person that likes to see blood, it usually makes me weak in the knees, however, I've been able to look at his bandages daily, and now that they are gone, I can look at his incisions daily. All I can think of when I see them is when I watch NCIS and I see Ducky working on a dead body, they look like those incisions....
Now that he is home though, he is doing much better, he is able to move his head from side to side, sit in his walker and is in a self made "no bouncy seat" support group, he's the only member! I've also had to deal with wanting to "baby" him, and also reteach him that he can't have my undivided attention 24hrs a day like he did in the hospital. Dylan had a blast at his friend Conors house, thanks to Conors wonderful mom Krystal who offered to take him for me so wouldn't have to worry about him. She is a wonderful person who has made it so I never have to worry about taking Dylan to an appt unless I want to, she really has been a great help, she also allows me to "freak out" whenever I need to and dosen't take any of it personally. We've become great friends since Dylan and Connor started preschool last year. This year will be great also, he is starting soccer with Conor in Sept and they are also in preschool again together.
The Sat after we left the hospital we went to the beach for the day and had a lobster bake with my dad and his family, it was really fun and brought back alot of memories of when we used to do that every year, plus it was yummy.
Friday, 8/14 Lucas turned 1, it was kinda a weird birthday, it was poorly planned on my part we just had my dad and his family over for dinner and then had a cake. It made me yet again, realize how delayed Lucas is, I mean we had a birthday for a boy that not only can't eat cake, but dosent have any idea what is going on and just sat in an infant carseat and watched us eat cake and his brother open his presents. He wasen't even interested in playing with them. I guess it's moments like these that hit me the hardest, I tried to be happy about the fact that its his birthday, but then I look at all the milestones he's missed and realize he's really only about, what 4-5 mos, he dosen't eat any food, he dosen't sit independently, but he is now rolling on his right side with no help or coaxing and there is always his smile. Ok, I'm done the pitty party, I'm sorry. I was reading my own blog this evening and realized its mostly full of me complaining. I know it shouldn't be that way and I'm working on that, honest I am.
Today we bought Lucas an awesome new/used stroller. Its a Kolcraft Contours 3wheel stroller in ruby red. His jeep stroller is breaking mainly due to all his rocking, I couldn't get it to say in the upright position anymore.
I also wanted to take the time to say hello to Bumpa from Dylan, Lucas Me and Steve, he is in the hospital due to having 1 1/2 heart attacks and surgery during the last heart attack and we hope he is doing well. We miss you!!

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.

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:)

Alittle history!

I'm not really sure how to start a blog, I figure alittle history about us would be good! Steve and I got married Oct 16 2004, we had Dylan 9mos later on July 17 2005 at 10:16am. We decided to try for another one almost 3yrs later, we weren't "trying" we just figured, if it happens, then it happens. Both my pregnancies were totally different, with Dylan I ate everything and gained about 70lbs. I never had any type of morning sickness, the only thing that bothered me was the smell of meat being cooked. I went into labor with him the day before I was scheduled to be induced, and delivered the next morning. Dylan was a healthy 9lb 4oz baby boy who measured almost 2ft tall! He was the cutest thing, and became my world. Everything Steve and I did was for Dylan, our goal is to make him the happiest kid out there. He is kind, funny, a ladies man, shy, and one of the most respectful boys I've ever met. Then had Lucas, I was induced with him at 39 weeks hoping he wouldn't be as big, he measured on ultrasound at around 7lbs so we figured everything would be fine. When Lucas was born, weighed only 5lbs 10oz and measured at 18 3/4inches. I knew then something was wrong, I wasen't sure what, but something just didn't seem "right". We started noticing things once he came home. He was so "time consuming", everything had to be done in a certain way, and if it wasen't done that way he would have a fit. He needed to be swaddled in 2 blankets in order for him to sleep. He didn't want to be cuddled, he would only eat/sleep unless he was sitting in a bouncy seat or his car seat, and he had to eat every 2hrs. In September, we found out he was allergic to dairy/soy proteins, and that he had severe acid reflux. Since I was still breastfeeding, I had to take all dairy/soy out of my diet. That lasted about 6wks, then he had to start using Neocate since it was the only formula that he could tolorate. In December we noticed he had a hernia, we were sent to a surgeon, and he had a 2inch long, 1/2 inch wide hernia removed on 12/13/08. Everytime we'd see the pediatrician I'd ask what was the issue?? I know every child is different, but to be totally different then ANY other child I've known is alittle odd! He was still sleeping only 1 1/2 to 1. 45 hrs at a time, still only drinking 4oz at a time, and not wanting baby food AT ALL!!!! I then noticed a dimple on his bum and also these 2 bumps at the bottom of his spine that were causing sores on his bum. Since I decided to cloth diaper Lucas, I had to switch to different diapers to control the sores on his bum. At his 7mos check up his pediatrician listed to his heart for a long time, I kept asking what was wrong, and he wouldn't say anything, I pointed out the dimple on his bum, and the bumps at the end of the spine and he said he needed to research something and left the room. Minutes later he returned and said he wanted Lucas to see a neurosurgeon, genetisist, and get a MRI of his head and his spine. He then told me that Lucas has been measuring small since birth. He is currently only in the 4th percentile for weight and not much more for weight or head size. A couple hours after we got home, the pediatrician called and said that he wants him to see an endocrinologist aswell. So I get all of these things scheduled and here is what we found out..... Lucas has Williams Syndrome, a heart murmur, shortening of the pulmonary artery, he has a lazy right eye, a tethered spine, extra spinal fluid, chiari I Malformation, 6 Lumbar vertebre. He also had a swallow study done and its determined that he dosen't swallow, he bites the nipple of the bottle and arches his head back so the formula can fall down his throat and on the occasion that he eats baby food he rocks back and forth so the food falls down his throat. He also had an early intervention evaluation and the decided that he is developmentaly delayed since he just started rolling (at 8mos), is yet to sit independently, dosen't yet babble or show any sign of talking, so now he has OT/PT every week. Since all of this was found out in about 1 month, I never actually dealt with any of it emotionally, I just made sure all the appointments were made, Dylan was cared for while at the appointments, and when I wasen't at an appointment, make sure Dylan was "feeling the love" from his mommy and spending time with him doing whatever he wanted to do. I would read alot about WS and and read alot of blogs, but never actually dealt with anything, the only thing I knew is that I didn't want, and wasent ready for any "equiptment" in my home....Then it happened. Lucas was scheduled to see his genetisist to follow up on all the visits we have had and the GI dr came in to see us. At that point Lucas was waking every 1 1/2hrs to eat, but would only eat about 18oz a day, with no baby food. Since we've been dealing with constipation they took an xray of his stomach and found that it was empty, there was no blockage, but mostly, there was no food, he didn't want to eat, but he had nothing in his stomach. So Dr Rapucci explained to me that the time had come for Lucas to have a feeding tube placed, this was on a Monday. Dylan had an end of the school year show at his preschool on that Thursday and while there I received a phone call from the Dr scheduled to insert the feeding tube, she called to let me know that they would be doing the surgery the next day and I needed to be at the hospital at 7:30. And that brings us to now, Lucas has had the feeding tube for alittle over 1 week now, there is "equiptment" in my house and he is finally eating or tubing the amount of formula that he should be taking in daily. It still totally freaks me out that there is medical equiptment and stuff in my house, but I'm dealing with it. I'm managing to take care of it and I'm just glad he is eating, he is also sleeping better which is a plus considering now no one will watch him for me. This beings us to why I started this blog. I think its important for everyone to know how we are doing and figured this would be the easiest way. Also, I'm hoping it will be a good outlet for me to voice my concerns, fears, and "issues" and I have. So lets start.....


Today we went to a birthday party for one of Dylans friends and that's were it hit me, Lucas is different. There were tons of babies there that were younger then him, and they were sitting on the ground together in a cute circle, playing and babbling with each other, and he couldn't even sit, they were eating cake, and baby food, and ice cream, and Lucas had a bottle. I felt so out of place. Dylan was having a blast, and I was on the verge of tears the entire day. All the parents were staring at me (so I felt) and there is Lucas in his stroller or in my arms, doing nothing but sucking on a pacifier, and rocking back and forth. I was so excited to bring Dylan to his first birthday party, and couldn't wait to leave. I know what your saying, will all his issues obviously I knew he was different, and I did, it just has never been shoved in my face that way. We've never been around other kids his age or younger in that type of setting. I still haven't figured out how to work past that, but I know I need to. I can't stop our lives just because my child isn't like everyone elses. Ok, its now 2:30am so I'll finish this post later...