We have officially gotten Seth his own site. We are now
www.fundsforseth.com
Please head over there for new blog posts, pictures, and fundraiser updates. Thanks again to all of you who pray for our little boy they are greatly appreciated!
Funds For Seth
Monday, October 22, 2012
Sunday, August 19, 2012
School
Just wanted to give a little heads up that my precious 3 year old boy is starting his first day of school tomorrow. It seems like just yesterday I was giving birth to the chubby 9 pound 1 ounce boy and now he is off to school, seriously? I have many mixed emotions about him going to school but in the end I know that this will be the best thing for him and the school is absolutely amazing. His actual first day of school was last Monday but we were in Palm Springs on our yearly vacation (which I will post pictures from asap) so he missed the first week of school so tomorrow will be his first day. I will take pictures and come home and load them as soon as I can.
The next few posts are going to be about
-Palm Springs
-The results from his kidney test (no surgery needed :)
-Fundraising
-School
Thanks so much for taking the time to be apart of our lives and care about our little boy!
The next few posts are going to be about
-Palm Springs
-The results from his kidney test (no surgery needed :)
-Fundraising
-School
Thanks so much for taking the time to be apart of our lives and care about our little boy!
Sunday, July 1, 2012
Update
When I was in Chicago the parts to Seth's stander that we have had since October finally arrived. When he had his PT Ben hooked everything up and gave me a run down on how to get him in and out the easiest and how to adjust everything. Seth was not a fan of it the first few times in it and I had to entertain him with his favorite toy.
Two weeks ago we had an appointment with a physical therapist who created the Happy Chair. I can not wait to get this and get him sitting in the right position. When she checked Seth out and looked at his back she said he already has beginning stages of scoliosis which I just did not want to hear. His ribs on one side are more pronounced and he does in fact have the rounded back as well. She said if we can get him in this seat and work on getting his pelvic bone in the vertical position he will be good. She believes that he will be able to walk if we can just get him sitting. This chair is amazing and when we get his back positioned correctly he then can start standing up on his own and then we can work on walking.
On June 19th we went in for his urologist appointment and ultrasound to check how his kidneys and ureters are after the surgery that was in Oct 2010. We got there and they were behind which is always fun when you have Seth who gets bored easily in his stroller so I had to be the bad mom who lets their kid crawl on the doctor office floor...yuck! So we did the ultrasound and then got into a room for his appointment. Dr. Bailey's nurse came in to talk to me which was fine because I really like her. When she walked in the first thing she asked was how was he feeling and had he had any UTI's (in my head I am thinking he shouldn't have any cause you fixed the problem) and I knew at that moment something still was not right. Well she started to tell me that his right kidney and ureters (grade 4 before surgery) are perfect and everything is looking great there but the left kidney (grade 5 before surgery) and the ureters and enlarged and worse than before the corrective surgery. My first reaction was are you serious...she said yes. She said most likely there is a blockage it happens in about 1% of the kiddos. Great, Im thinking well perfect my kid once again gets in that wonderful 1% range. We have to get two tests done a MAG3 and a VCUG before our July 10th appointment. The tests are going to be on the same day at Phoenix Childrens on July 5th. They are going to put him out for the MAG3 test which takes about 2 hours and then wake him up and while he is still kinda out do the VCUG test. We will then get all the results at our that following Tuesday and they will tell us what is going on and if he will need to repeat that surgery he had two years ago. That surgery has been the hardest one that we have had to deal with and I just really hope that we do not have to do it again.
JUNE 22 2012 Seth turns THREE!!!! Are you kidding me?!?!?!?! I can not believe that my little muffin pie is 3 years old. He is such a happy little man and we love his so very much. He is the strongest, bravest, happiest little boy I know and he amazes me every day with what he goes through and how he can just smile when he hears your voice. I love him with everything I have and he warms my heart. Mike had inventory for work and was home by 1. We went and got some cupcakes even though he was not going to eat them :) and ate some dinner and my mom and dad came over to help put up his cool swing and take the kids swimming because that is what Seth loves to do.
This past week Melanie his OT came over and wanted to do some messy play with Seth. He loves it and she even got some frosting in his mouth which he did not like very much but he did swallow it! He had a blast making his highchair a mess and getting frosting everywhere.
Two weeks ago we had an appointment with a physical therapist who created the Happy Chair. I can not wait to get this and get him sitting in the right position. When she checked Seth out and looked at his back she said he already has beginning stages of scoliosis which I just did not want to hear. His ribs on one side are more pronounced and he does in fact have the rounded back as well. She said if we can get him in this seat and work on getting his pelvic bone in the vertical position he will be good. She believes that he will be able to walk if we can just get him sitting. This chair is amazing and when we get his back positioned correctly he then can start standing up on his own and then we can work on walking.
On June 19th we went in for his urologist appointment and ultrasound to check how his kidneys and ureters are after the surgery that was in Oct 2010. We got there and they were behind which is always fun when you have Seth who gets bored easily in his stroller so I had to be the bad mom who lets their kid crawl on the doctor office floor...yuck! So we did the ultrasound and then got into a room for his appointment. Dr. Bailey's nurse came in to talk to me which was fine because I really like her. When she walked in the first thing she asked was how was he feeling and had he had any UTI's (in my head I am thinking he shouldn't have any cause you fixed the problem) and I knew at that moment something still was not right. Well she started to tell me that his right kidney and ureters (grade 4 before surgery) are perfect and everything is looking great there but the left kidney (grade 5 before surgery) and the ureters and enlarged and worse than before the corrective surgery. My first reaction was are you serious...she said yes. She said most likely there is a blockage it happens in about 1% of the kiddos. Great, Im thinking well perfect my kid once again gets in that wonderful 1% range. We have to get two tests done a MAG3 and a VCUG before our July 10th appointment. The tests are going to be on the same day at Phoenix Childrens on July 5th. They are going to put him out for the MAG3 test which takes about 2 hours and then wake him up and while he is still kinda out do the VCUG test. We will then get all the results at our that following Tuesday and they will tell us what is going on and if he will need to repeat that surgery he had two years ago. That surgery has been the hardest one that we have had to deal with and I just really hope that we do not have to do it again.
JUNE 22 2012 Seth turns THREE!!!! Are you kidding me?!?!?!?! I can not believe that my little muffin pie is 3 years old. He is such a happy little man and we love his so very much. He is the strongest, bravest, happiest little boy I know and he amazes me every day with what he goes through and how he can just smile when he hears your voice. I love him with everything I have and he warms my heart. Mike had inventory for work and was home by 1. We went and got some cupcakes even though he was not going to eat them :) and ate some dinner and my mom and dad came over to help put up his cool swing and take the kids swimming because that is what Seth loves to do.
When I went in to get him out of his bed on his birthday. He was so happy!
On our way to the pool.
In the pool and the kids had so much fun.
The swing that grandpa hung up for Seth
Here he is inside it and he LOVES it!
On Thursday June 28th we met with the dietitian about the ketogenic diet and getting him started. We had to get so much blood work before the appointment and he also need two urine samples one for a culture and one that checks how his metabolism works I forgot to get that one so they can not start the diet until they get the results from that test. Anyways this diet is crazy. For this one reason I am glad that Seth still drinks formula and is tube fed because doing this diet for someone like sydney would be CRAZY (you have to make sure there is only 2g of carbs in the food daily and NO SUGAR-if there is they could cause seizures if the diet was working and kept the seizures away. Also you have to weigh the food and the kids have to eat everything off their plate) Anyways for Seth he will be given ketocal which will take the place of his pediasure and we are praying he will take it from the bottle. If we want to do any food or food play we have to buy a scale and they will provide us with some recipes and a certain heavy cream that we mix with foods so he can eat that for like feeding therapy and stuff. We got a 16 page list of the products that he can use. If it is not on the list we can not use it. Here are a few of the categories that we have to make sure we have carb free and sugar free. There are more but they do not pertain to Seth right now like deodorant.
Shampoo
Conditioner
Body Wash
Sun Screen
Toothpaste
Lotion
Bug Spray
Baby Wipes
Baby Rash Cream
If we start the diet and notice the seizures stop and really slow them down and then we accidentally use a product with sugar or carbs it could cause a seizure and they are normally pretty big ones that need medical attention to stop the seizure so we just have to be very careful that we follow what he can use and we make sure that if anyone is watching him that they do that as well. In the early stages of the diet if we forget it is not as big of a deal because it takes a few weeks for the diet to start getting into the system and start the process of ketosis. Here are a few extra pictures I have taken lately. The ones in the stander are so cute and that day he spent 45 minutes in there and did not complain once. He played and had so much fun doing something other than laying around.
Laughing
So adorable
This past week Melanie his OT came over and wanted to do some messy play with Seth. He loves it and she even got some frosting in his mouth which he did not like very much but he did swallow it! He had a blast making his highchair a mess and getting frosting everywhere.
This is his "what are you making me do" kind of face.
Tuesday, May 29, 2012
Musings & Events.
Hey Friends!!!
We really need to be better about posting on Seth's blog but let's face it - life is BUSY! I thought Id do a quick event update and also share a few thoughts with you on this glorious Tuesday morning!
First off - Seth is turning 3!!! I cant believe it's been almost three whole years since I witnessed the birth of this beautiful boy - and what I three years it's been! In honor of Seth's big day, we are having a ColdStone fundraiser on June 20th. This will be held at the same shop as it always is, at Val Vista & Baseline in Gilbert.We will post a big announcement & details as the day approaches but for now - mark your calendars!!!
Okay, next. Ramblings.
Ive been thinking a lot lately about CMV. Being pregnant again with our 6th baby of course brings about thoughts of all the risks and scary things that can happen to a baby in utero - CMV being one of many viruses that can pass through the placenta and one of many many things that can go wrong.
Ive really noticed over the last few days that there is a lot of fundraising going on for things like autism, cerebral palsy, epilepsy, etc. Millions of dollars have been raised to either research a cure for these ailments or to simply provide help to make life easier and more comfortable for those suffering with these things. That's amazing! It beautiful to see people giving up their own time & money to help the plights of others. The question milling about in my mind is this: What if we could STOP these things from happening? Are we spending all of our time and money trying to fix something that could be prevented entirely?
Each year, at least 30,000 children (1 in 150 in the US) are born with congenital human cytomegalovirus or cCMV. Most babies go home from the hospital with no indication whatsoever that they have been infected with this devastating virus in utero. Most will never show symptoms at all. But maybe they do. Maybe a year and a half down the road, they make it onto the autism spectrum. Maybe at age 2 they develop epilepsy. Maybe they simply have ADD or hearing loss or have severe learning disabilities. CMV is the number one cause of birth defects and physical as well as mental impairments. and yet you would never know your child was infected with CMV in utero unless testing was performed AT BIRTH. Unfortunately, we dont do that here. A simple cheek swab or urine sample would suffice, but because there is no vaccine and no way to prevent CMV, it's deemed pointless to do that kind of research in the US.
The number of known CMV cases each year is huge. It's startling, really. It could be the major cause of autism, CP, epilepsy, hearing & vision impairment, and a host of other things that plague our children - and adults - every day. Yet, most people have no idea what CMV is. We have to raise awareness. We have to get funds flowing in for CMV research. The only way to stop this virus is to find a vaccine. The only way to find a vaccine is to fund research - and that is just NOT happening for CMV.
If I was a famous celebrity with a CMV baby, the whole world would know about it. The whole world would empathize, be on alert, and throwing money at this cause. But Im not. Seth isnt the child of a famous woman, but of a normal girl who happens to be my best friend. He's is still worth it. All of our children are worth the time, effort, and money it will take to raise awareness and - eventually - bring about a preventative vaccine for CMV.
For lots more information, please visit www.stopcmv.org . Donate if you are able, and spread the word - facebook it, post it on your blog, buy a Stop CMV bracelet and tell everyone you see what it's about. Help us protect the children of our future by stopping this virus in it's tracks.
*Please note: Im not trying to say your child is autistic or has CP or anything else because of CMV exposure in utero, so please dont try to lecture me about MMR vaccines and chemical exposures and oxygen deprivation. I know enough about all of those things. A link between congenital CMV and autism was discovered & noted as early as 1991...why isnt this information out in the public area? This is what Im asking. This is why we need to raise awareness immediately. CMV can directly account for every single disability that is not chromosomal or genetic - which to me, warrants a hell of a lot more research, right now.
Thank you for being a friend to Seth and a supporter of this precious boy & his family! You are all so very loved & appreciated!
Blessings.
~LISA
We really need to be better about posting on Seth's blog but let's face it - life is BUSY! I thought Id do a quick event update and also share a few thoughts with you on this glorious Tuesday morning!
First off - Seth is turning 3!!! I cant believe it's been almost three whole years since I witnessed the birth of this beautiful boy - and what I three years it's been! In honor of Seth's big day, we are having a ColdStone fundraiser on June 20th. This will be held at the same shop as it always is, at Val Vista & Baseline in Gilbert.We will post a big announcement & details as the day approaches but for now - mark your calendars!!!
Okay, next. Ramblings.
Ive been thinking a lot lately about CMV. Being pregnant again with our 6th baby of course brings about thoughts of all the risks and scary things that can happen to a baby in utero - CMV being one of many viruses that can pass through the placenta and one of many many things that can go wrong.
Ive really noticed over the last few days that there is a lot of fundraising going on for things like autism, cerebral palsy, epilepsy, etc. Millions of dollars have been raised to either research a cure for these ailments or to simply provide help to make life easier and more comfortable for those suffering with these things. That's amazing! It beautiful to see people giving up their own time & money to help the plights of others. The question milling about in my mind is this: What if we could STOP these things from happening? Are we spending all of our time and money trying to fix something that could be prevented entirely?
Each year, at least 30,000 children (1 in 150 in the US) are born with congenital human cytomegalovirus or cCMV. Most babies go home from the hospital with no indication whatsoever that they have been infected with this devastating virus in utero. Most will never show symptoms at all. But maybe they do. Maybe a year and a half down the road, they make it onto the autism spectrum. Maybe at age 2 they develop epilepsy. Maybe they simply have ADD or hearing loss or have severe learning disabilities. CMV is the number one cause of birth defects and physical as well as mental impairments. and yet you would never know your child was infected with CMV in utero unless testing was performed AT BIRTH. Unfortunately, we dont do that here. A simple cheek swab or urine sample would suffice, but because there is no vaccine and no way to prevent CMV, it's deemed pointless to do that kind of research in the US.
The number of known CMV cases each year is huge. It's startling, really. It could be the major cause of autism, CP, epilepsy, hearing & vision impairment, and a host of other things that plague our children - and adults - every day. Yet, most people have no idea what CMV is. We have to raise awareness. We have to get funds flowing in for CMV research. The only way to stop this virus is to find a vaccine. The only way to find a vaccine is to fund research - and that is just NOT happening for CMV.
If I was a famous celebrity with a CMV baby, the whole world would know about it. The whole world would empathize, be on alert, and throwing money at this cause. But Im not. Seth isnt the child of a famous woman, but of a normal girl who happens to be my best friend. He's is still worth it. All of our children are worth the time, effort, and money it will take to raise awareness and - eventually - bring about a preventative vaccine for CMV.
For lots more information, please visit www.stopcmv.org . Donate if you are able, and spread the word - facebook it, post it on your blog, buy a Stop CMV bracelet and tell everyone you see what it's about. Help us protect the children of our future by stopping this virus in it's tracks.
*Please note: Im not trying to say your child is autistic or has CP or anything else because of CMV exposure in utero, so please dont try to lecture me about MMR vaccines and chemical exposures and oxygen deprivation. I know enough about all of those things. A link between congenital CMV and autism was discovered & noted as early as 1991...why isnt this information out in the public area? This is what Im asking. This is why we need to raise awareness immediately. CMV can directly account for every single disability that is not chromosomal or genetic - which to me, warrants a hell of a lot more research, right now.
Thank you for being a friend to Seth and a supporter of this precious boy & his family! You are all so very loved & appreciated!
Blessings.
~LISA
Saturday, March 24, 2012
What A Success!
Last night was our highly-anticipated Hunger Games for Seth movie night! And we are all so HAPPY to report that it was a complete success! We had a blast hanging out with friends, seeing the movie (which was AWESOME) and raising money for Seth as well as awareness for cCMV.
Below are some photos from the evening - such a handsome crowd!
And we are SO very pleased and excited to tell you all that we brought in a whopping $1270.00 from this one event! THANK YOU to everyone who came out and showed your support, spread the word, bought raffle tickets, donated money, and prayed for the success of this fundraiser!
~ LISA
Below are some photos from the evening - such a handsome crowd!
And we are SO very pleased and excited to tell you all that we brought in a whopping $1270.00 from this one event! THANK YOU to everyone who came out and showed your support, spread the word, bought raffle tickets, donated money, and prayed for the success of this fundraiser!
~ LISA
Tuesday, March 6, 2012
Hunger Games
Harkins Chandler Crossroads
202 South and Gilbert
March 23rd at 7:00pm
Please if you are going to see the movie please come and see it for Seth! Tickets are 20 dollars each and will go to help raise money for us to go to San Francisco to the CMV conference in October, video monitor for Seth, therapy needs and toys. Thanks again for helping out our precious little boy!
Please contact me through FB or email if you would like to purchase a ticket. Email address is: mmarinello3@mac.com
Please contact me through FB or email if you would like to purchase a ticket. Email address is: mmarinello3@mac.com
Monday, January 2, 2012
Sorry its been so LONG!
We finally got his new bed at the end of October! Thank you everyone that came out to ColdStone and helped raise money so that we could get him a bed and keep him safe. It is amazing and a huge piece of mind for Mike and me. If I need to get something done and can not keep an eye on him I am able to put him in his bed and he can play in there and crawl because it is big enough. I am able to put toys in there and leave his door open and he just plays until I can get him out. It has been amazing! The night we put it together it took FOREVER! My dad came over so that he could help Mike do the bed and they started around 6pm and then by 10:30pm they headed home because my dad needed to be at church early so he needed to get to bed so Mike and I decided to just try and get it done and we did finally! We finished it around 12:30am and Seth got to sleep in there for the night :) Here are some picture of the finished bed!
So we decided to take the mattress that he use to sleep on and the gate that we bought to keep him in one place and put it in the living room so that he has a place to also play when I cant hold him or watch him. In this house we call it the crazy cage :)
Here is Seth inside his new bed.
He looks so tiny in his big boy bed!
So we decided to take the mattress that he use to sleep on and the gate that we bought to keep him in one place and put it in the living room so that he has a place to also play when I cant hold him or watch him. In this house we call it the crazy cage :)
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