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.
Thursday, October 8, 2009
Friday, September 18, 2009
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.....
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.....
Tuesday, August 25, 2009
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!
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!
Monday, August 24, 2009
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.....
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.....
Sunday, August 23, 2009
Tuesday, August 18, 2009
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.
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.
Sunday, August 16, 2009
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!!
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!!
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