I've been working on "Kiss Kiss" with Tanner for months and now he's got it. They're a little wet but we love em'. He's so proud of himself (we praise and applaud him) that he's doing without even being asked. I'm super proud and this has made my day, month and year:)
Wednesday, June 1, 2011
Monday, May 30, 2011
I choose to smile
Before I became a mother I remember imagining what it would be like. I also remember thinking how awful it would be to have a child with special needs. I felt sorry for the men and women I saw in public with kids with Downs Syndrome, in wheel chairs or with any of those sort of needs. I KNEW that I would never be able to handle having a child with those types of needs.
Now that I am a mother and a mother of special needs child I get those same pitiful looks that I once gave to special parents years ago. I don't want any pity though. Justin and I are very happy. Tyler and Carter and very happy. Tanner is very happy. WE are very happy.
Often I hear family and friends say "I don't know how you do it" or "I wish this wouldn't have happened to you." They often seem surprised by my responses to these comments. Of course we have challenging moments. What family doesn't. Our challenges are just different than other families. AND although it does effect us nothing happened to me......Tanner is the one with Wolf-Hirschhorn syndrome and if Tanner is always happy and smiling......why shouldn't I?
My attitude has obviously changed a lot about having a special needs child. I think most people would surprise themselves if they were given a special child. You do what you have to do. I think the part that my family and friends are most proud of Justin and I for is how we handle it. People cope with things different ways. In our particular situation (after getting a grasp on Tanner's diagnosis and going through those stages of grief) we decided to do this with a smile and with a positive attitude which makes it easier for everybody involved.
My niece, Syndey, gave me a small painting for my birthday just a 2 months after Tanner was born that reads "If your handed it, you can handle it". I truly believe that. I think there are parents out there that do not believe that. They feel cheated and lost in this journey. You really must make your lemonade if God gives you lemons. If you constantly complain that you wanted orange juice you will never truly be happy.
Don't get me wrong. I have bad days...usually if Tanner has a bad day. On those days I always try to remember that there are people out there worse off than us. I feel blessed that Tanner smiles at me, laughs with me and that he has the capability to progress developmentally!!!! Some children cannot show that they love you, some cannot flash a smile and some cannot progress...even at a delayed pace.
I guess these are my words of encouragement to those struggling in this journey or to those that may be faced with similar challenges in the future.
Now that I am a mother and a mother of special needs child I get those same pitiful looks that I once gave to special parents years ago. I don't want any pity though. Justin and I are very happy. Tyler and Carter and very happy. Tanner is very happy. WE are very happy.
Often I hear family and friends say "I don't know how you do it" or "I wish this wouldn't have happened to you." They often seem surprised by my responses to these comments. Of course we have challenging moments. What family doesn't. Our challenges are just different than other families. AND although it does effect us nothing happened to me......Tanner is the one with Wolf-Hirschhorn syndrome and if Tanner is always happy and smiling......why shouldn't I?
My attitude has obviously changed a lot about having a special needs child. I think most people would surprise themselves if they were given a special child. You do what you have to do. I think the part that my family and friends are most proud of Justin and I for is how we handle it. People cope with things different ways. In our particular situation (after getting a grasp on Tanner's diagnosis and going through those stages of grief) we decided to do this with a smile and with a positive attitude which makes it easier for everybody involved.
My niece, Syndey, gave me a small painting for my birthday just a 2 months after Tanner was born that reads "If your handed it, you can handle it". I truly believe that. I think there are parents out there that do not believe that. They feel cheated and lost in this journey. You really must make your lemonade if God gives you lemons. If you constantly complain that you wanted orange juice you will never truly be happy.
Don't get me wrong. I have bad days...usually if Tanner has a bad day. On those days I always try to remember that there are people out there worse off than us. I feel blessed that Tanner smiles at me, laughs with me and that he has the capability to progress developmentally!!!! Some children cannot show that they love you, some cannot flash a smile and some cannot progress...even at a delayed pace.
I guess these are my words of encouragement to those struggling in this journey or to those that may be faced with similar challenges in the future.
Monday, May 23, 2011
Maybe I was wrong
I once published a post called "What I need" (you can see it HERE). It pretty much cursed the government for helping everyone but me. While I do have firm beliefs regarding the system and the way it's regulated, I've had a change of heart regarding how it effects us.
The point of this post is to admit I may have been wrong. I was so MAD when Tanner was denied for Social Security benefits. I didn't understand how honest hard working people like Justin and I couldn't get a little financial relief so that I could care for him, get him to his appointments and be there for his therapies. Although times have been tough I realize that there are people out there that need it far more than us. We are not withering away. Our kids have cute clothes that fit, entirely too many toys and they get to do fun things.
Since I wrote that last post I HAVE found some relief but in other ways and programs. I am so very thankful that Tanner's health insurance is totally covered!! His insurance also covers his home nursing that has allowed me to grow my cleaning business, contribute to our family financially and actually get me out of the house (even if it is cleaning:). Being able to bring some money in has done so much for me personally. Tanner also gets all of his monthly medical supplies delivered right to our door. That includes his formula. Tanner gets his therapy in our home 4 times a week until he turns 3. That is a huge help!
So, that's it! I just wanted to say that I am thankful for everything we get:)
The point of this post is to admit I may have been wrong. I was so MAD when Tanner was denied for Social Security benefits. I didn't understand how honest hard working people like Justin and I couldn't get a little financial relief so that I could care for him, get him to his appointments and be there for his therapies. Although times have been tough I realize that there are people out there that need it far more than us. We are not withering away. Our kids have cute clothes that fit, entirely too many toys and they get to do fun things.
Since I wrote that last post I HAVE found some relief but in other ways and programs. I am so very thankful that Tanner's health insurance is totally covered!! His insurance also covers his home nursing that has allowed me to grow my cleaning business, contribute to our family financially and actually get me out of the house (even if it is cleaning:). Being able to bring some money in has done so much for me personally. Tanner also gets all of his monthly medical supplies delivered right to our door. That includes his formula. Tanner gets his therapy in our home 4 times a week until he turns 3. That is a huge help!
So, that's it! I just wanted to say that I am thankful for everything we get:)
Tuesday, May 3, 2011
You have got to get one of these
So, we are in LOVE with the iPad and so is Tanner. I'm writing today to show you ours, how amazing it is and to possibly help you get one for your WHS child as well.
When I first heard about and started to research the iPad and it's "special needs" applications I knew we had to get one. I had heard also that there are ways to get grants to get one for a special needs child. I'm very impulsive and wasn't sure I would have the patience to see if we would qualify for one. The more and more I stewed over it I decided we were just going to buy one with Tanner's fundraiser money. It made sense. We raise the money to get things we typically wouldn't be able to get for him. Plus it didn't seem fair to be given a free iPad when another child that may not have a fundraiser could be given one. That didn't stop me from finding out how to apply for those grants though. That's one of the things I will share in this post. I'll also share 2 videos of the iPad in use and will share with you our favorite applications.
The first organization is The Prayer Child Foundation. Click on "submit a request" from the left hand column and will give you instructions on how to apply. You write a letter and mail it in for this one. This group decides once a month what their budget is and who they will approve and deny. Everybody is notified within 4 to 6 weeks what the status of their request is.
iPads4U. This also just requires you to write or email a letter explaining how an iPad would benefit your child. They then decide which families would benefit most.
iHelp for Special Needs. This is also a simple email. Click on "Need an iPad/app" and follow the instruction of what to include in your email.
The Conover Company. This company is actually a maker of apps for the iPad and iPhone. You can fill out an application by clicking "Fill out an application online" right at the bottom of the page.
I'm sure there are so many ways to get grants for an iPad. These are just a few that I found. Warning though: I did see a few that required an application fee. DO NOT pay any fees!!!! Anything that makes you pay upfront for something you may not receive is a rip off. It would be wonderful if insurance companies would cover an iPad. I don't see it happening soon but they cover communication devices that are far more expensive than the iPad so who knows:)
Here's 2 videos that show just a glimpse of this amazing technology.
When I first heard about and started to research the iPad and it's "special needs" applications I knew we had to get one. I had heard also that there are ways to get grants to get one for a special needs child. I'm very impulsive and wasn't sure I would have the patience to see if we would qualify for one. The more and more I stewed over it I decided we were just going to buy one with Tanner's fundraiser money. It made sense. We raise the money to get things we typically wouldn't be able to get for him. Plus it didn't seem fair to be given a free iPad when another child that may not have a fundraiser could be given one. That didn't stop me from finding out how to apply for those grants though. That's one of the things I will share in this post. I'll also share 2 videos of the iPad in use and will share with you our favorite applications.
The first organization is The Prayer Child Foundation. Click on "submit a request" from the left hand column and will give you instructions on how to apply. You write a letter and mail it in for this one. This group decides once a month what their budget is and who they will approve and deny. Everybody is notified within 4 to 6 weeks what the status of their request is.
iPads4U. This also just requires you to write or email a letter explaining how an iPad would benefit your child. They then decide which families would benefit most.
iHelp for Special Needs. This is also a simple email. Click on "Need an iPad/app" and follow the instruction of what to include in your email.
The Conover Company. This company is actually a maker of apps for the iPad and iPhone. You can fill out an application by clicking "Fill out an application online" right at the bottom of the page.
I'm sure there are so many ways to get grants for an iPad. These are just a few that I found. Warning though: I did see a few that required an application fee. DO NOT pay any fees!!!! Anything that makes you pay upfront for something you may not receive is a rip off. It would be wonderful if insurance companies would cover an iPad. I don't see it happening soon but they cover communication devices that are far more expensive than the iPad so who knows:)
Here's 2 videos that show just a glimpse of this amazing technology.
Wednesday, March 16, 2011
Every day has been better
Tanner was born on February 25th of 2009. He was diagnosed when he was six days old. I often say that the day Tanner was diagnosed with Wolf-Hirschhorn Syndrome was the worst day of my life. I stand by that but for different reasons today than when the words first rolled off my tongue.
When we received his diagnosis my world was shattered that our baby boy was not "perfect". For months I cried and cried about what may lie ahead in our future. I analyzed every word that had come out of the geneticists mouth. I took it to heart and assumed everything she said was true. I didn't think Tanner would ever walk or talk. I stalked Tanner's every movement waiting for that first seizure that I knew would come someday. I figured I would have to do everything for him for the rest of his life and although I tried to forget it......the 34% death rate before the age of two haunted me everyday.
Yes, the day Tanner was diagnosed with Wolf-Hirschhorn Syndrome was the WORST day of my life. I think it always will be for this reason: every single day since then has been better. Some days I forget Tanner has Wolf-Hirschhorn Syndrome. He's always smiling at me and engaging me with those "wide set, bulging eyes" that are so darn beautiful. His "little to no personality" is quite entertaining as well. His "small stature" has allowed me to cuddle, hold and nurture him far longer than most mothers are able to without the typical two year old squirming out of your arms to explore. Every milestone is celebrated like the fourth of July because his "developmental delays" by definition said he may NEVER accomplish these things.
"Perfect"......my son, Tanner, is perfect. Maybe not in the genetics teams eyes and all of their books......but to me, our family and the people that love Tanner he is very much perfect.
So, judge me if you will for saying that March 3, 2009 was the worst day of my life. I personally am thankful that EVERY DAY HAS BEEN BETTER:)
When we received his diagnosis my world was shattered that our baby boy was not "perfect". For months I cried and cried about what may lie ahead in our future. I analyzed every word that had come out of the geneticists mouth. I took it to heart and assumed everything she said was true. I didn't think Tanner would ever walk or talk. I stalked Tanner's every movement waiting for that first seizure that I knew would come someday. I figured I would have to do everything for him for the rest of his life and although I tried to forget it......the 34% death rate before the age of two haunted me everyday.
Yes, the day Tanner was diagnosed with Wolf-Hirschhorn Syndrome was the WORST day of my life. I think it always will be for this reason: every single day since then has been better. Some days I forget Tanner has Wolf-Hirschhorn Syndrome. He's always smiling at me and engaging me with those "wide set, bulging eyes" that are so darn beautiful. His "little to no personality" is quite entertaining as well. His "small stature" has allowed me to cuddle, hold and nurture him far longer than most mothers are able to without the typical two year old squirming out of your arms to explore. Every milestone is celebrated like the fourth of July because his "developmental delays" by definition said he may NEVER accomplish these things.
"Perfect"......my son, Tanner, is perfect. Maybe not in the genetics teams eyes and all of their books......but to me, our family and the people that love Tanner he is very much perfect.
So, judge me if you will for saying that March 3, 2009 was the worst day of my life. I personally am thankful that EVERY DAY HAS BEEN BETTER:)
Monday, March 14, 2011
Some updates
Tanner had an appointment with his new neurologist last Monday. I LOVE her!!!!! She just came from Dupont and 90% of her patients followed her to CHOP so that tells me something right there. If you're not familiar with our on going Neurology saga I'll fill you in quick. Tanner saw the same neurologist since he was born. Every time we saw him he asked which syndrome Tanner had and what kind of seizure meds he was taking (even though he was the one who prescribed them). Needless to say it left me feeling uneasy. Tanner's last 4 hour EEG was last April and was cut short after an hour because so many seizures were documented. For months I tried to get answers as to what part of the brain these seizures were coming from, what kind of seizures they were and if they were damaging. After a few months of hearing "I'm not sure"....."I'll get back to you" I just gave up. I focused my energies on getting Tanner a new neurologist instead. CHOP has policy that they won't just switch you because you're unhappy. I called multiple times and Tanner's pediatrician tried with no luck. Since we moved to a new county I thought I would give it one last try with the excuse that the drive is too far and we are closer to a different satellite office that his neurologist doesn't travel to. IT WORKED!!!!! So, his new neurologist pulled up the results from that EEG last April and told me the seizures were coming from the two furthest back portions of the brain, they are generalized seizures and that they are damaging considering the amount of them he's having a day. She said we will do everything possible to make them go away. We're starting bright and early at 7:30am tomorrow with an EEG. From there we are going to either start the kenogenic diet, change his formula or add a different medication to the Keppra he already takes. Tanner is already on so many medicines so I'm really considering the kenogenic diet. Right now he's on pediasure which has a very high sugar content which is said to trigger seizures. I'd like to try a different formula to see if that makes a difference before we go into the strict diet. Seizure medicines often come with side effects that I would like to avoid so that's my last resort. So, first step is the EEG and we'll go from there.
I'm worried we may possibly be seeing some regression in Tanner's development. For the last week he is refusing to sit up. He's been so great with sitting and we worked so hard to get him to sit. I'm not sure if this could be related to the seizures or not. He's also been throwing up with just about every feed. If it's not regression due to the seizures I'm wondering if there's something going on with his belly that's making him uncomfortable sitting and also causing the spitting up. I brought up these concerns to his pediatrician at his appointment today so she gave a small boost to his Prilosec dose to see if reflux is the culprit. I guess we'll see if that helps within a few days. Tanner was 16 pounds 12 ounces at that appointment today so he's still gaining:)
This weekend we're heading to Altoona for my niece's 4th birthday party. It's always great to see my sister and the rest of the family. I can't wait. We get back Sunday and then Monday morning Tanner is getting his mini button. I can't wait!!!!!! This dangling little tube is a bugger. It always opens and leaks. Good riddens peg tube. Don't the door hit your......tube on the way out:)
I just installed Tanner's new car seat too. He's not totally grown out of the infant seat but we have to bend his legs because they hit the actual car seat. Weight wise he's not out grown it but length..yes! He looks like such a big boy:)
Here's Tanner in the bath tub. He's learned to splash and loves splashing himself. I love this picture because it looks like me when I'm doing the Thriller dance. LOL!!!
The brothers:)
Next weekend the 26th we are having a WHS get together at our place. I treasure these get togethers. I will have tons of pictures of beautiful, smiling children. Much love:)
I'm worried we may possibly be seeing some regression in Tanner's development. For the last week he is refusing to sit up. He's been so great with sitting and we worked so hard to get him to sit. I'm not sure if this could be related to the seizures or not. He's also been throwing up with just about every feed. If it's not regression due to the seizures I'm wondering if there's something going on with his belly that's making him uncomfortable sitting and also causing the spitting up. I brought up these concerns to his pediatrician at his appointment today so she gave a small boost to his Prilosec dose to see if reflux is the culprit. I guess we'll see if that helps within a few days. Tanner was 16 pounds 12 ounces at that appointment today so he's still gaining:)
This weekend we're heading to Altoona for my niece's 4th birthday party. It's always great to see my sister and the rest of the family. I can't wait. We get back Sunday and then Monday morning Tanner is getting his mini button. I can't wait!!!!!! This dangling little tube is a bugger. It always opens and leaks. Good riddens peg tube. Don't the door hit your......tube on the way out:)
I just installed Tanner's new car seat too. He's not totally grown out of the infant seat but we have to bend his legs because they hit the actual car seat. Weight wise he's not out grown it but length..yes! He looks like such a big boy:)
Here's Tanner in the bath tub. He's learned to splash and loves splashing himself. I love this picture because it looks like me when I'm doing the Thriller dance. LOL!!!
The brothers:)
Next weekend the 26th we are having a WHS get together at our place. I treasure these get togethers. I will have tons of pictures of beautiful, smiling children. Much love:)
Monday, February 28, 2011
Tanner's 2, Carter's 4 and Tyler's 7
Tanner just turned 2 years old on Friday February 25th. I can't believe 2 whole years have passed. Tanner has come such a long way since he was born.
A lot has happened since I last blogged, actually. Tanner now has a g tube and weighs a whopping 16.7 pounds and is 27 1/2 inches long. The tube has helped Tanner is so many different ways and I wish I would have done it sooner. He's now sitting unassisted, putting weight on his legs, clapping his hands, playing int he crawl position and so much more. The first couple weeks with tube were a bit nerve racking. We had to find the right balance for him. So, there was a lot of spitting up before we found that balance. He's still having problems sleeping through the night with the slow continuous feed though. We're still trying to figure out if it has anything to do with the tube feed or if he's just not going to be a good sleeper. Now he's putting the pureed foods down so much better and is even interested in eating some REAL solid foods. His HUGE personality gets bigger every day. He's mimicking a lot of stuff that we do. HE pretends to chew food wen we're eating, tries to make the sounds we're making and bounces up and down when we ask him to.
Tanner has some new appointments coming up. We finally got a new appointment with a different CHOP Neurologist. We just moved to the Exton area so because of the old neurologist being so far we were able to request a switch to the neurologist at CHOP Exton location. THANKS GOODNESS!!!!!
He's also going to see an ENT in April. He's on his 5th ear infection since December so Dr. Kathryn thinks it may time for some tubes in his ears. I guess we'll see f Tanner gets another notch in his surgery belt. He's as happy as can be though and that's what's most important.
We had a double birthday party bash for Tanner and Tyler Saturday February 19th since there's only one day between their birthdays. Ty's was at Bounce U and then everyone came back to our place for Tanner's party. It was a great day. Carter also turned 4 the day after Christmas. His party was at Bounce Town. They really are awesome places to have kids parties. Everybody has a great time.
I have a ton of pictures to share going back to Halloween so I'll get to it:) ENJOY!!!
For Halloween Tyler was Boba Fett from Star Wars, Carter was a bat and Tanner was a friendly dinosaur...or a dragon. I'm not exactly sure what he was but he was cute:)
We also had a great time at Merrymeade farms picking pumpkins and doing "fall" things.
Christmas was a lot of fun this year. The boys loved the toys Santa brought for them and Tanner LOVED the tissue and wrapping paper involved:)
We got a ton of snow this winter. I hope we've seen the last of it. The kids love to play in it though. I got a new camera for Christmas so I did a lot of picture taking in the snow.
Carter's 4th birthday party
Tyler's 7th birthday party
Tanner's 2nd birthday
So, that's all I have time for now. Things have finally started to settle down for our family a little bit. Our wedding, Tanner's benefit, holidays and birthdays have all passed. Blogging is back on my list of things to do. Much love to you all.
A lot has happened since I last blogged, actually. Tanner now has a g tube and weighs a whopping 16.7 pounds and is 27 1/2 inches long. The tube has helped Tanner is so many different ways and I wish I would have done it sooner. He's now sitting unassisted, putting weight on his legs, clapping his hands, playing int he crawl position and so much more. The first couple weeks with tube were a bit nerve racking. We had to find the right balance for him. So, there was a lot of spitting up before we found that balance. He's still having problems sleeping through the night with the slow continuous feed though. We're still trying to figure out if it has anything to do with the tube feed or if he's just not going to be a good sleeper. Now he's putting the pureed foods down so much better and is even interested in eating some REAL solid foods. His HUGE personality gets bigger every day. He's mimicking a lot of stuff that we do. HE pretends to chew food wen we're eating, tries to make the sounds we're making and bounces up and down when we ask him to.
Tanner has some new appointments coming up. We finally got a new appointment with a different CHOP Neurologist. We just moved to the Exton area so because of the old neurologist being so far we were able to request a switch to the neurologist at CHOP Exton location. THANKS GOODNESS!!!!!
He's also going to see an ENT in April. He's on his 5th ear infection since December so Dr. Kathryn thinks it may time for some tubes in his ears. I guess we'll see f Tanner gets another notch in his surgery belt. He's as happy as can be though and that's what's most important.
We had a double birthday party bash for Tanner and Tyler Saturday February 19th since there's only one day between their birthdays. Ty's was at Bounce U and then everyone came back to our place for Tanner's party. It was a great day. Carter also turned 4 the day after Christmas. His party was at Bounce Town. They really are awesome places to have kids parties. Everybody has a great time.
I have a ton of pictures to share going back to Halloween so I'll get to it:) ENJOY!!!
For Halloween Tyler was Boba Fett from Star Wars, Carter was a bat and Tanner was a friendly dinosaur...or a dragon. I'm not exactly sure what he was but he was cute:)
We also had a great time at Merrymeade farms picking pumpkins and doing "fall" things.
Christmas was a lot of fun this year. The boys loved the toys Santa brought for them and Tanner LOVED the tissue and wrapping paper involved:)
We got a ton of snow this winter. I hope we've seen the last of it. The kids love to play in it though. I got a new camera for Christmas so I did a lot of picture taking in the snow.
Carter's 4th birthday party
Tyler's 7th birthday party
Tanner's 2nd birthday
So, that's all I have time for now. Things have finally started to settle down for our family a little bit. Our wedding, Tanner's benefit, holidays and birthdays have all passed. Blogging is back on my list of things to do. Much love to you all.
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