It has been a long time since I've written. We have been very busy. Last week we had our March of Dimes Walk. We had our own team for the 1st year Jaxon's Crew. I would like to thank everyone who participated. It really meant a lot to us to see everyones support for such a great cause. As a family we have spent the last few months doing talks at corporate businesses, tv and radio interviews to promote the March of Dimes. It has been a great feeling knowing we are giving back to something that has done so much for us. Even though many people never see the outcome or result of their hard work raising money, I can say I do. I meet with families that have little ones in the NICU once a month for a dinner and they always tell me how much it means to them to be able to talk with other parents and parents of a Graduate. It really gives them hope. I met with a mother who's child wasn't real critical but it still wasn't in her plans to have to leave her baby boy every night for several weeks after he was born. After encouraging her to use some of the resources available to her she actually told me when were leaving the dinner, she would sleep better at night knowing she could call and check on him anytime 24/7 and she wasn't bothering anyone. The program also provide classes for siblings to learn about their baby brother or sister and so much more. This is just a small example of what you've done for a family and I would like to thank you all.
Jaxon has been getting ornery by the minute. I really think even though he is delayed in many things the terrible two's is not one of them.
I didn't check to see where I left off last time so some may be a repeat. Jaxon is now pulling himself up on everything. Last night he got himself into the tub. All I could hear was babbling and a few mama's. From the sound of it he fell in but wasn't bothered at all. He was just playing with his bath toys when I found him.
We started see a speech pathologist about a month ago at KU med. I'll tell you her program is tough to do. Jaxon hates eating the foods she pushes and he frequently vomits. I know I was given this little boy for a reason. The therapist said to me "boy you stayed really calm through all that" (vomiting after each bite). She told me you'll do fine with his therapy. You have it in you!! Easier said than done let me tell you. He is getting a little better I think. The last week or so he doesn't throw up after every bite of something he doesn't like. Which is all but about 3 types of stage 1 baby food. It's a long slow road.
Last week Jason and I were on vacation, so we took a short trip to the Omaha Zoo. Jaxon really liked some of the exhibits. Some of them were to far away and with his vision he was unable to pick out the animals in the background, especially if they weren't moving. However the penguin exhibit was a hit. He was able to get right up to the glass and see them swimming underwater. They were just showing off. He was just grinning from ear to ear, babbling and hitting the glass. He also like the aquarium's since the fish are so close up. We gave him his 1st ice cream cone. Lets just say this boy has a sweet tooth. He loved it. Ice cream just running down his chin and he was begging for more. Its great to see him eat anything, but we know he can't live on ice cream no matter how much he would love it.
We met with his eye doctor yesterday and she said he was doing really well with his new lenses. She upped his script about 6 weeks ago and she changed it a lot. His lenses are starting to get really thick. He does seem to see things farther away and doesn't move his head from side to side nearly as much.
June 6th is the big day for yet another surgery. Jaxon saw his urologist a month ago and I was really hoping he would say he didn't need to see us for another 6 months but that wasn't the case. Jaxon needs another repair of his hypospadius and he has a hernia that needs repaired. The hernia is related to prematurity and for now he is only going to repair one side and watch the other as he grows. We knew there was a good chance he may need another repair but we were hoping it was when he was older. Lets just hope this is it.
As for the good news. Jaxon is really making strides in his development. He is still really delayed and I have to get my butt in gear and get him into some speech therapy (one day at a time) but he is a very happy little boy. He is at the stage now where he is very aware when mom and dad leave the room or are going to leave without him. Hope it goes away soon. I feel terrible when he looks at me with those big blue eyes tears just rolling. He has begun throwing fits when he doesn't get his way. Shaking his whole body and yelling at us. Today he threw his 1st fit in a store over a toy. I was buying a toy for a friends son's birthday party and when I took it away from Jaxon he was not a happy camper.
Well that's all for now.
Friday, May 6, 2011
Friday, February 11, 2011
Jaxon is crawling!!
1st thing we would like to share is Jaxon started crawling about a week ago. I was in his room and he crawled up behind me and I was thinking boy he sure got over here fast. So I turned him around and coaxed him with a toy and sure enough he decided using those knees was just the thing. He is all over the place now and getting into everything. We are so proud of him. The months and months of physical therapy finally paid off.
Jaxon also learned how to put objects back into a bucket or any other item. I know this sounds menial to some but its a big step for us. This is usually something that comes pretty natural but it took Jaxon awhile to get the hang of it. Some of its the coordination thing. He still isn't always interested but he knows what he's supposed to do with the shapes. Now on to bigger and better things.
We also had our 1st March for Babies kick off with the corporate crowd. I admit I was extremely nervous speaking. I haven't given a speech since college. It went ok and then the news lady cornered us about doing a short interview for the evening news. I wasn't at all prepared for that. Oh well its all for a good cause, as long as we can recruit walkers to raise money and awareness I'm game.
The very best part of our week was Jaxon's very 1st appointment with the KU Med Center feeding team. It was a very productive appointment. 2 pediatric psychologist, 2 speech therapist, 1 dietitian and an ooccupational therapist were present and our local speech therapist joined us in Kc to attend. The entire appointment consisted of us getting to know their roles and them getting to know us and Jaxon's history of eating. At the end of the session, they asked if they could see Jaxon eat something. I had brought a little puree baby food, he hadn't seen any food in at least 2 months. As I tried to get him to accept a tiny little taste he just clamped his mouth shut and refused other than tasting what got on his lips. So I decided to have Jason give it a try, and what do you know that little stink opened his mouth for Daddy and took bites like he does it all the time. He even moved toward the spoon and was laughing about it. They saw that anymore than a taste and he gets overwhelmed and sometimes chokes. So the plan for the next month is to give him tiny tastes for 5 min 3 times a day. We are hoping he will build up enough confidence we can give him some good sized bites for a swallow study in 1 month to see exactly where the food goes as he tries to swallow. We will then go from there as to the plan of action. I'm just so excited he even opens his mouth for food. I think in the last 2 months he has forgotten all the horrible episodes from the past. Now maybe we can start on the right foot with good experiences.
Our little guy is changing so fast, and we are so extremely proud of him.
Jaxon also learned how to put objects back into a bucket or any other item. I know this sounds menial to some but its a big step for us. This is usually something that comes pretty natural but it took Jaxon awhile to get the hang of it. Some of its the coordination thing. He still isn't always interested but he knows what he's supposed to do with the shapes. Now on to bigger and better things.
We also had our 1st March for Babies kick off with the corporate crowd. I admit I was extremely nervous speaking. I haven't given a speech since college. It went ok and then the news lady cornered us about doing a short interview for the evening news. I wasn't at all prepared for that. Oh well its all for a good cause, as long as we can recruit walkers to raise money and awareness I'm game.
The very best part of our week was Jaxon's very 1st appointment with the KU Med Center feeding team. It was a very productive appointment. 2 pediatric psychologist, 2 speech therapist, 1 dietitian and an ooccupational therapist were present and our local speech therapist joined us in Kc to attend. The entire appointment consisted of us getting to know their roles and them getting to know us and Jaxon's history of eating. At the end of the session, they asked if they could see Jaxon eat something. I had brought a little puree baby food, he hadn't seen any food in at least 2 months. As I tried to get him to accept a tiny little taste he just clamped his mouth shut and refused other than tasting what got on his lips. So I decided to have Jason give it a try, and what do you know that little stink opened his mouth for Daddy and took bites like he does it all the time. He even moved toward the spoon and was laughing about it. They saw that anymore than a taste and he gets overwhelmed and sometimes chokes. So the plan for the next month is to give him tiny tastes for 5 min 3 times a day. We are hoping he will build up enough confidence we can give him some good sized bites for a swallow study in 1 month to see exactly where the food goes as he tries to swallow. We will then go from there as to the plan of action. I'm just so excited he even opens his mouth for food. I think in the last 2 months he has forgotten all the horrible episodes from the past. Now maybe we can start on the right foot with good experiences.
Our little guy is changing so fast, and we are so extremely proud of him.
Friday, January 21, 2011
Most Recent Pictures
I thought since I can't post these on facebook due to copyright and I don't want everyone logging onto our account with the photographer I would post the link on here.
Visit this website www.joleespencer.net click on proofs. The email addres is mine: dawn_vandevord@hotmail.com and the Password is JaxonV0111. They are really good this time. He was in a very good mood and showed all shorts of emotion. It will be really hard to choose this time.
Visit this website www.joleespencer.net click on proofs. The email addres is mine: dawn_vandevord@hotmail.com and the Password is JaxonV0111. They are really good this time. He was in a very good mood and showed all shorts of emotion. It will be really hard to choose this time.
Monday, January 17, 2011
Army Crawling
Jaxon has finally decided to get moving. He is now army crawling some when he's alone and he knows whining won't get mommy to help. He is doing really well. The toy has to be super motivating or he will just move on to something within reach. I'm so excited. I know it will probably be a couple more months before he actually crawls but its a great start. He does some assisted standing at a table TARC has provided us, which is great to strengthen his legs. I believe they are going to bring him a special foam like chair so he can pull himself up and sit down without getting hurt, at least ideally.
We have been chosen as the March of Dimes ambassador family for 2011 in Topeka. Basically we are the face and promoters in Topeka. They like to put faces to the organization. I'm excited to be able to give back to an organization that did so much for us and so many others. I'm also nervous I'm not much of a speaker and there will be speaking engagements. I will have to get over it I guess because this is something that has been close to hearts since Jaxon came along. The biggest event in Topeka is the March for Babies April 29th in the evening in gage park. We will have a family and friends team this year. If you would like to be a part of our team please post your email or send it to me on facebook and when I get us registered I'll send you the information to get signed up. The walk is a lot of fun, there are lots of activities for kids including going through the zoo, face painting, a bounce house and many more activities before the walk. Afterward there is dinner, usually hot dogs and such. We are asking everyone in our family to join us. The purpose of the walk is not just to raise money but also awareness. So if you don't want to raise money but just join us for the walk or raise money and not walk that's great to.
Update medically:
We saw a cleft palate team at KU Med a couple weeks ago and they were wonderful. We left feeling like we really had a group of people behind us who we can count on for support. The surgeon decided no surgery and no further testing to find out exactly if he has a cleft or not. He said everything is working the way it was intended as far as he could see, but didn't want to do a scope to see behind his soft palate. He did say he does not have a short palate which is what the surgeon at Childrens Mercy had told us. We got conflicting answers from the surgeon at CM and when we talked with the surgeon at KU we told him it was important to us to get answers and a plan of action. Since Jaxon won't eat at all they can't do a swallow study to see where the food goes when he swallows. He would have to be able to take a certain amount of food to get a good idea and he refuses. The surgeon wants us to see their feeding team (a speech therapist, occupational therapist, dietitian, and behavioral therapist) for a few months to see if these great people can get him eating 1st. Some of the ideas he just threw out at us were things we had never even heard before so I'm hopeful they have some new ideas and give us some guidance. I know it sounds simple just give him food, but let me tell you its not that simple. He will eat syrup off a spoon and as soon as you put the tiniest piece of pancake on it he will spit it out and gag. He doesn't do any texture with food. He will stick any object in his mouth but if he is expected to swallow its a no go. Our pediatrician trained with this group a little and she said they are very good. So keeping our fingers crossed we can get him past this.
We have been chosen as the March of Dimes ambassador family for 2011 in Topeka. Basically we are the face and promoters in Topeka. They like to put faces to the organization. I'm excited to be able to give back to an organization that did so much for us and so many others. I'm also nervous I'm not much of a speaker and there will be speaking engagements. I will have to get over it I guess because this is something that has been close to hearts since Jaxon came along. The biggest event in Topeka is the March for Babies April 29th in the evening in gage park. We will have a family and friends team this year. If you would like to be a part of our team please post your email or send it to me on facebook and when I get us registered I'll send you the information to get signed up. The walk is a lot of fun, there are lots of activities for kids including going through the zoo, face painting, a bounce house and many more activities before the walk. Afterward there is dinner, usually hot dogs and such. We are asking everyone in our family to join us. The purpose of the walk is not just to raise money but also awareness. So if you don't want to raise money but just join us for the walk or raise money and not walk that's great to.
Update medically:
We saw a cleft palate team at KU Med a couple weeks ago and they were wonderful. We left feeling like we really had a group of people behind us who we can count on for support. The surgeon decided no surgery and no further testing to find out exactly if he has a cleft or not. He said everything is working the way it was intended as far as he could see, but didn't want to do a scope to see behind his soft palate. He did say he does not have a short palate which is what the surgeon at Childrens Mercy had told us. We got conflicting answers from the surgeon at CM and when we talked with the surgeon at KU we told him it was important to us to get answers and a plan of action. Since Jaxon won't eat at all they can't do a swallow study to see where the food goes when he swallows. He would have to be able to take a certain amount of food to get a good idea and he refuses. The surgeon wants us to see their feeding team (a speech therapist, occupational therapist, dietitian, and behavioral therapist) for a few months to see if these great people can get him eating 1st. Some of the ideas he just threw out at us were things we had never even heard before so I'm hopeful they have some new ideas and give us some guidance. I know it sounds simple just give him food, but let me tell you its not that simple. He will eat syrup off a spoon and as soon as you put the tiniest piece of pancake on it he will spit it out and gag. He doesn't do any texture with food. He will stick any object in his mouth but if he is expected to swallow its a no go. Our pediatrician trained with this group a little and she said they are very good. So keeping our fingers crossed we can get him past this.
Friday, December 31, 2010
Christmas at the Vandevord House
We had a wonderful Christmas, so much to be thankful for. Hope everyone had a great holiday. It was really nice to be able to take Jaxon out to see everyone this year. I think we saw all the grandparents and great-grandparents this year. Jaxon received so many toys I think we need to add a room onto the house to put them all in!! He loves them all though, he just looks around like what to do 1st. It's so much fun to watch him and Jason play on the floor with his toys. You can almost see Jaxon's little mind just turning when Jason teaches him how to operate parts of the toys.
On our wonderful 70 degree day yesterday we took Jaxon for his 1st tractor ride around the farm. He had a good time. He just smiled as the wind blew his hair. He also watched Brian and Uncle Nathan take out the Zombies. You should have seen him watch that video game in awe, it was funny. He didnt' have a clue what was going on but the sound and movement was entertaining.
I'm working on this New Years Eve, and on my way in I stopped to buy a lottery ticket for the Mega Millions. My dad was telling me I better buy a ticket the jackpot is something like $247 million. Well anyway to make a long story short the lady wouldn't sell it to me because I looked to young and my ID was in the car. Mind you, you only have to be 18 to buy lottery in KS. As you all know it's cold out and I was in a little hurry so I didn't have to time go back out. I told her " I'm 30 but thanks for making my day anyway" :) Looking back on the year and the joys and tears we have gone through and to think I don't even look 18. Well I know better but it was a good laugh anyway. However I did just buy my ticket at another store and I'll let everyone know if I win!!
I wanted to share a pleasant surprise to me today. I met the wife and children of a man I work with today. They have a little boy who just turned 6 yesterday. He is the most polite and handsome little man. He was born with down-syndrome. You wouldn't know it other than the obvious signs. It was great to talk with her. She shared her story with Trenton. Much of the same things we go through just some in a little different light. She told the hours they put in with physical, occupational and speech therapy. I got to see the results of it and it really gave me inspiration with Jaxon. I know Jaxon is doing well but sometimes you just wonder if you are doing enough and if your efforts are going to pay off. She said her son didn't walk until he was
2 1/2 and now you wouldn't have a clue. He chases his sister around the office just like little brothers do. It was a nice addition to my day.
We have a busy week ahead, but in a good way. We are doing his last set of pictures on Thursday to finish up his 1st year pictures. We didn't quite get them done the way normal people do, but what's the fun in normal. I'm anticipating Jaxon's cleft appointment on Friday. I'm hoping we will get some real answers and maybe a plan of action.
On our wonderful 70 degree day yesterday we took Jaxon for his 1st tractor ride around the farm. He had a good time. He just smiled as the wind blew his hair. He also watched Brian and Uncle Nathan take out the Zombies. You should have seen him watch that video game in awe, it was funny. He didnt' have a clue what was going on but the sound and movement was entertaining.
I'm working on this New Years Eve, and on my way in I stopped to buy a lottery ticket for the Mega Millions. My dad was telling me I better buy a ticket the jackpot is something like $247 million. Well anyway to make a long story short the lady wouldn't sell it to me because I looked to young and my ID was in the car. Mind you, you only have to be 18 to buy lottery in KS. As you all know it's cold out and I was in a little hurry so I didn't have to time go back out. I told her " I'm 30 but thanks for making my day anyway" :) Looking back on the year and the joys and tears we have gone through and to think I don't even look 18. Well I know better but it was a good laugh anyway. However I did just buy my ticket at another store and I'll let everyone know if I win!!
I wanted to share a pleasant surprise to me today. I met the wife and children of a man I work with today. They have a little boy who just turned 6 yesterday. He is the most polite and handsome little man. He was born with down-syndrome. You wouldn't know it other than the obvious signs. It was great to talk with her. She shared her story with Trenton. Much of the same things we go through just some in a little different light. She told the hours they put in with physical, occupational and speech therapy. I got to see the results of it and it really gave me inspiration with Jaxon. I know Jaxon is doing well but sometimes you just wonder if you are doing enough and if your efforts are going to pay off. She said her son didn't walk until he was
2 1/2 and now you wouldn't have a clue. He chases his sister around the office just like little brothers do. It was a nice addition to my day.
We have a busy week ahead, but in a good way. We are doing his last set of pictures on Thursday to finish up his 1st year pictures. We didn't quite get them done the way normal people do, but what's the fun in normal. I'm anticipating Jaxon's cleft appointment on Friday. I'm hoping we will get some real answers and maybe a plan of action.
Thursday, December 16, 2010
A Quick Update Before Christmas
Just wanted to let everyone know we are getting a 2nd opinion on Jaxon's cleft palate. He has a appointment with the KU med center cleft palate team on Jan 7th. Jason didn't like the surgeon we met with a Children's Mercy. I don't think he like us questioning his 1st opinion. And his attitude was terrible. He kept telling us Jaxon's has a swallowing problem. Well duh we know this. We know cleft surgery isn't going to be a miracle cure and all of the sudden Jaxon will eat. Nope it's just a missing piece of the puzzle. If they think therapy is the only answer then we are going to ask them to help our OT therapist. Jaxon's is a very rare case and there is not a lot of documentation for kids with clefts and complications of prematurity. Our OT therapist is wanting to introduce electrode therapy for swallowing I have read a little about it but need to do more research before we decide if this is right for us. Anyway just wanted to update everyone who has been wondering where this is going.
A funny side note. Jaxon is extremely scared of the vacuum. As soon as it comes on he just breaks down. Poor guy, and poor carpet.
Hope everyone has a wonderful Christmas.
A funny side note. Jaxon is extremely scared of the vacuum. As soon as it comes on he just breaks down. Poor guy, and poor carpet.
Hope everyone has a wonderful Christmas.
Saturday, December 11, 2010
Thanksgiving and a Little of Everything
We had a wonderful Thanksgiving week. On Tuesday night we made a surprise visit to see Grandma and Grandpa Melton. Jaxon had a good time showing off of course. We went to visit Dad and Michelle afterward and Nana let Jaxon take a cat nap and you'll never guess who was up till 12:00??
On thanksgiving day we went to Jason's grandma Kaff's house for lunch. It was perfect we stuffed our faces and then I had to leave for work. Jaxon had a great time cracking up at Dale's little dog. We got a video and I will try to share it on facebook when I figure out how to get it off my phone. Since my phone doesn't do video it makes it a little difficult. We then had a Saturday dinner and Dad's. Same thing eat and run for me. Jaxon stayed and entertained everyone.
We had our first visit with Santa. Jaxon was so interested in his beard and he just couldn't stop staring at him. We had a hard time getting him to look at the camera. It was funny at least he didn't cry. The pictures turned out really cute and I can't wait to get them back. I hope they come before Christmas. We have been waiting on our family pictures for 2 months and still haven't gotten them back so who knows. One of Jaxon's nurses has taken off doing photography and she does so really good work so I'm hoping to maybe use her.
We were asked if we were interested in being an Ambassador family for the March of Dimes for the Topeka area next year. If we are selected we will basically be the face of the MOD in the Topeka area for 2011. It means pictures, speeches and any other public events to promote the March of Dimes. The largest event in Topeka is March for Babies. I'm also considering being on the board for the walk. I just want to make sure I have enough time to do everything so we benefit the MOD. They do great things.
Jaxon's update: Both he and I got a terrible tummy bug. We both were sick for a couple days and then it was over. He began taking small amounts of water from a sippy cup after his tummy felt better since he was so dehydrated. This was a big improvement. He actually thinks its fun. He has gotten his 2nd round of synagis. Went about the same as the first. He was heartbroken. 2 down 3 to go. He is doing really well on physical skills. He has learned to turn around on his butt and sit up from a lying position. He thinks he's big stuff. He is starting to move forward toward the crawling position he's just not sure enough of himself yet. Eating is at a standstill currently. We are debating getting a 2nd opinion on his cleft from a cleft palate team at KU med. We will see his OT therapist on Monday at children's mercy for a normal monthly appointment and consult her about a 2nd opinion. I just want to make sure we are doing everything we can for his progress.
On thanksgiving day we went to Jason's grandma Kaff's house for lunch. It was perfect we stuffed our faces and then I had to leave for work. Jaxon had a great time cracking up at Dale's little dog. We got a video and I will try to share it on facebook when I figure out how to get it off my phone. Since my phone doesn't do video it makes it a little difficult. We then had a Saturday dinner and Dad's. Same thing eat and run for me. Jaxon stayed and entertained everyone.
We had our first visit with Santa. Jaxon was so interested in his beard and he just couldn't stop staring at him. We had a hard time getting him to look at the camera. It was funny at least he didn't cry. The pictures turned out really cute and I can't wait to get them back. I hope they come before Christmas. We have been waiting on our family pictures for 2 months and still haven't gotten them back so who knows. One of Jaxon's nurses has taken off doing photography and she does so really good work so I'm hoping to maybe use her.
We were asked if we were interested in being an Ambassador family for the March of Dimes for the Topeka area next year. If we are selected we will basically be the face of the MOD in the Topeka area for 2011. It means pictures, speeches and any other public events to promote the March of Dimes. The largest event in Topeka is March for Babies. I'm also considering being on the board for the walk. I just want to make sure I have enough time to do everything so we benefit the MOD. They do great things.
Jaxon's update: Both he and I got a terrible tummy bug. We both were sick for a couple days and then it was over. He began taking small amounts of water from a sippy cup after his tummy felt better since he was so dehydrated. This was a big improvement. He actually thinks its fun. He has gotten his 2nd round of synagis. Went about the same as the first. He was heartbroken. 2 down 3 to go. He is doing really well on physical skills. He has learned to turn around on his butt and sit up from a lying position. He thinks he's big stuff. He is starting to move forward toward the crawling position he's just not sure enough of himself yet. Eating is at a standstill currently. We are debating getting a 2nd opinion on his cleft from a cleft palate team at KU med. We will see his OT therapist on Monday at children's mercy for a normal monthly appointment and consult her about a 2nd opinion. I just want to make sure we are doing everything we can for his progress.
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