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..
Wednesday, November 11, 2009
Thursday, October 8, 2009
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 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.
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.
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