Today we had to go to the ENT clinic. Since Lucas failed his hearing test, so I was told, he had to see another doctor. Come to find out the test for hearing is not that reliable for a little one. They have to be willing to want to even respond. She said if he did hear the beeps and words, he just might not have wanted to turn his head and look at it because it did not interest him. She showed me his paper and it had a 20 on it. She said anything under 25 is in the normal range. His ear drums looked fine, no fluid. His canals are bigger than a typical child with Down Syndrome. His tonsils are small. Unless he has ear infections or something like that comes up, she sees no reason for tubes. Another big Yeah for Lucas.
Went to visit Grandma and Pa Hailey. Talked to the lawyer about my burns. That is becoming interesting. I guess I will get some money but now I have to come up with a number. The company that makes the stuff that burned me is wanting to settle.
I have my Christmas shopping done, pretty much done. I am going to let Ashton shop on Friday night for his brothers some presents.
Oh and Lucas has 3 teeth now. Two bottom in the front and one upper jaw on the left.
Hardships + Joys = Life and Mother of 4 boys Maybe funny, maybe sad, either way hope you learn and enjoy what I have to say. Feel free to comment if you like. (Yes I know, I need a new picture of my boys.)
Tuesday, November 29, 2011
Saturday, November 26, 2011
We have been busy, so sorry!
Not even sure where I have left off. We have been a little busy with Thanksgiving coming up. I had to do a lot of cleaning and still didn't get it all done.
We had a nice yummy Thanksgiving. Lot of food and boy was I tired.
Lucas can sit up all by himself now. He can go from his tummy to sitting now. This is huge for him. So hard and not to be taken for granted. He is so proud of himself each time he does it.
Went to grandma and grandpa's today for pictures. He has been chewing on his thumb a lot lately. I checked to see if he had any more teeth and he has a jaw tooth. Crazy boy is getting those teeth in all out of order. Guess it is his order. So now he has two bottom teeth and one jaw tooth on the left upper side. The right side one is almost in.
Ashton is gone for Thanksgiving. Had a birthday party for him last weekend. He flew out on Wednesday to go to Maryland with his dad for Thanksgiving. I sure miss him. He left on his birthday which I was so sad. I get really funky feeling when my kids have to be away.
Oh and my other news, I am going to be a grandma. Marcus and his wife are having a baby. Due June 30th. I am so glad he waited this long. He will be 26 when the baby is born. I wish them the best with that. I hate it cause I won't get to see the baby hardly but that is the way it is. If I would ever win money or maybe even get a job that I can visit a couple times a year, that would make me happy.
Off to rest for a bit. A long night last night and a long day today.
We had a nice yummy Thanksgiving. Lot of food and boy was I tired.
Lucas can sit up all by himself now. He can go from his tummy to sitting now. This is huge for him. So hard and not to be taken for granted. He is so proud of himself each time he does it.
Went to grandma and grandpa's today for pictures. He has been chewing on his thumb a lot lately. I checked to see if he had any more teeth and he has a jaw tooth. Crazy boy is getting those teeth in all out of order. Guess it is his order. So now he has two bottom teeth and one jaw tooth on the left upper side. The right side one is almost in.
Ashton is gone for Thanksgiving. Had a birthday party for him last weekend. He flew out on Wednesday to go to Maryland with his dad for Thanksgiving. I sure miss him. He left on his birthday which I was so sad. I get really funky feeling when my kids have to be away.
Oh and my other news, I am going to be a grandma. Marcus and his wife are having a baby. Due June 30th. I am so glad he waited this long. He will be 26 when the baby is born. I wish them the best with that. I hate it cause I won't get to see the baby hardly but that is the way it is. If I would ever win money or maybe even get a job that I can visit a couple times a year, that would make me happy.
Off to rest for a bit. A long night last night and a long day today.
Friday, November 18, 2011
It's Friday
I cleaned under the stairs, that has been needing it for a long time. Most of my homework is done. I have to finish it up tonite. I need to finish up the kisses for Ashton's party. Still need to get him another present for his birthday.
I am having Thanksgiving dinner here for once and for the first time, I think. Need to get my house cleaned, deep cleaned. I should do this in the spring but for some reason I like it done in the fall before the cold nasty sets in.
In case I don't write this weekend, just wanted to jot down a few things I am going to be doing.
Oh, and the kitties all have names: Tiger, Leo (Leopard), Cal (Caliber), Bob, and Tim (Tiny Tim). Tim has taken to me, he likes Bonkers too, which is a plus.
I am having Thanksgiving dinner here for once and for the first time, I think. Need to get my house cleaned, deep cleaned. I should do this in the spring but for some reason I like it done in the fall before the cold nasty sets in.
In case I don't write this weekend, just wanted to jot down a few things I am going to be doing.
Oh, and the kitties all have names: Tiger, Leo (Leopard), Cal (Caliber), Bob, and Tim (Tiny Tim). Tim has taken to me, he likes Bonkers too, which is a plus.
Thursday, November 17, 2011
Thursday
Been a couple days. I have some kind of bug/cootie. I don't like being sick at all. Started out on Monday with my throat feeling weird when I woke up. By the time I got back from the city, I was getting hoarse. Tuesday I woke with a sore throat but it got better. Just felt and sounded yucky. Wednesday the throat was better but still felt bad. Today I feel crappy. Tired, very tired. I am hoping to get a good nites sleep and feel like a million buck tomorrow.
I could feeling crappy because I am worried about money. I bought just a few things for Christmas, spent maybe $50 and I need to get a little more stuff. I spent way more on groceries than I planned. Just waiting for some kind of miracle to get me out of this rut. A lottery win? That would be the key to solving my money problem and few other people I know. Wish and wish I could have that much money. My mom would get the best care, both my parents could live in a house that worked for them. My boys' grandparents would get to move to someplace they can handle.
I am still thankful for all I have. I am glad I do have a place to live and can, at least, pay my bills. I do make sure the kids have food to eat. They may not have the best clothes in the world but what they have is good. Not junky, not always new, but good. Someday I will go and find me some jeans, at least. I have one pair. I need to lose weight and I will have many pairs again. I am just in a mode that it is hard to concentrate on me.
Lucas went to his grandparents for two days. He loves it there, I can tell. He was a little crying last night. He would full blown cry and then stop and then do it again. Like he didn't want to be here. He woke up happy today and was a good boy pretty much the whole day. He had Miss Amanda here again. She worked on his crawling. He does well with support. He was getting tired in the middle of it, like he always does.
Lucas has been attacking the cats. Poor baby kitties. They just stay there and let him squish their face, pull a tail, grab their legs and yank them across the floor, beat on them, and grab an ear. You would think they would scratch him or bite him, they don't. He lets go and they lay there. Silly cats.
Ashton is having a birthday party on Sat. He is wanting a skating party. I will be fun. He likes to skate. Can't believe he will be 8. All I can think about is when he was born. I sure wish I still lived in Oregon. Wished a lot of things were different. But they aren't and I have to live with my decisions and the path I have been given.
Sorry this is more of a downer post than a good one. Hey life is a roller coaster, pull you safety bar down and hold on.......
I could feeling crappy because I am worried about money. I bought just a few things for Christmas, spent maybe $50 and I need to get a little more stuff. I spent way more on groceries than I planned. Just waiting for some kind of miracle to get me out of this rut. A lottery win? That would be the key to solving my money problem and few other people I know. Wish and wish I could have that much money. My mom would get the best care, both my parents could live in a house that worked for them. My boys' grandparents would get to move to someplace they can handle.
I am still thankful for all I have. I am glad I do have a place to live and can, at least, pay my bills. I do make sure the kids have food to eat. They may not have the best clothes in the world but what they have is good. Not junky, not always new, but good. Someday I will go and find me some jeans, at least. I have one pair. I need to lose weight and I will have many pairs again. I am just in a mode that it is hard to concentrate on me.
Lucas went to his grandparents for two days. He loves it there, I can tell. He was a little crying last night. He would full blown cry and then stop and then do it again. Like he didn't want to be here. He woke up happy today and was a good boy pretty much the whole day. He had Miss Amanda here again. She worked on his crawling. He does well with support. He was getting tired in the middle of it, like he always does.
Lucas has been attacking the cats. Poor baby kitties. They just stay there and let him squish their face, pull a tail, grab their legs and yank them across the floor, beat on them, and grab an ear. You would think they would scratch him or bite him, they don't. He lets go and they lay there. Silly cats.
Ashton is having a birthday party on Sat. He is wanting a skating party. I will be fun. He likes to skate. Can't believe he will be 8. All I can think about is when he was born. I sure wish I still lived in Oregon. Wished a lot of things were different. But they aren't and I have to live with my decisions and the path I have been given.
Sorry this is more of a downer post than a good one. Hey life is a roller coaster, pull you safety bar down and hold on.......
Monday, November 14, 2011
Monday
Not much went on this weekend. Lucas and I went to his daddy's on Sat. Before that we drained the hot water tank and replaces the pressure valve. Now the little drain faucet leaks. One of those frustrating things.
Ashton went to his daddy's after the singing the cub scouts did at the veterans home. That was cute. Not that they knew the words. Those songs were too grown up for them. At least three of them were. The veterans still liked them.
Got some homework done. It was a lot. So hard doing it while watching baby but I am getting use to it.
Have to get homework done again this week and get ready for Ashton's birthday party. Lucas might have fun there.
We have been practicing sitting up with him. He needs to learn this. It is so hard for him to do, he is a weak baby. In time, I know, he will learn. It is so hard to see him struggle. At least he doesn't realize he is weaker, not yet anyway. The day he knows he is "different" will be hard for me. I see it now but I shove it to the back of my mind most of the time.
Ashton went to his daddy's after the singing the cub scouts did at the veterans home. That was cute. Not that they knew the words. Those songs were too grown up for them. At least three of them were. The veterans still liked them.
Got some homework done. It was a lot. So hard doing it while watching baby but I am getting use to it.
Have to get homework done again this week and get ready for Ashton's birthday party. Lucas might have fun there.
We have been practicing sitting up with him. He needs to learn this. It is so hard for him to do, he is a weak baby. In time, I know, he will learn. It is so hard to see him struggle. At least he doesn't realize he is weaker, not yet anyway. The day he knows he is "different" will be hard for me. I see it now but I shove it to the back of my mind most of the time.
Saturday, November 12, 2011
Thursday, November 10, 2011
Thursday Nov 10, 2011
Today went pretty well. Lucas was a good boy. Ashton got up and dressed and off to school without any troubles. The kittens are driving me insane. They might not get to stay inside. They are so little, not sure what I will do. I need to find them some homes.
PT came today. Lucas is doing so much better with his upper strength. He is almost crawling instead of army crawling.
Nate goes back tomorrow to the chiro. I sure hope they can help him. It is hard to not be able to help your child. I have no money to help and he is needing to go so he can get a job. He hasn't been able to work. Here is finally got his high school diploma and now is hurting so bad he can't do anything.
This time of year gets me down anyway. Ashton's birthday and then Christmas. Christmas is always hard for me. I know it isn't about giving but I like to give presents. I don't even send out cards because it cost too much. Full blown winter hasn't even hit and I am already getting pretty depressed. I have to figure out something to get me out of the rut.
My hot water heater is leaking. Let's add to the fun. Wood stove heating sucks. Stay cold in the bedroom with just the little plug in radiator heat. I wish we had a regular furnace and then used wood just because we wanted not because we have too. Need gravel for the drive. The rain came before I had them come in, now I have to wait for it to dry.
Got to do some homework. It is getting harder to do now and the only chance I get is when Lucas is in bed. I am tired so it isn't really on my mind.
Good Night.
PT came today. Lucas is doing so much better with his upper strength. He is almost crawling instead of army crawling.
Nate goes back tomorrow to the chiro. I sure hope they can help him. It is hard to not be able to help your child. I have no money to help and he is needing to go so he can get a job. He hasn't been able to work. Here is finally got his high school diploma and now is hurting so bad he can't do anything.
This time of year gets me down anyway. Ashton's birthday and then Christmas. Christmas is always hard for me. I know it isn't about giving but I like to give presents. I don't even send out cards because it cost too much. Full blown winter hasn't even hit and I am already getting pretty depressed. I have to figure out something to get me out of the rut.
My hot water heater is leaking. Let's add to the fun. Wood stove heating sucks. Stay cold in the bedroom with just the little plug in radiator heat. I wish we had a regular furnace and then used wood just because we wanted not because we have too. Need gravel for the drive. The rain came before I had them come in, now I have to wait for it to dry.
Got to do some homework. It is getting harder to do now and the only chance I get is when Lucas is in bed. I am tired so it isn't really on my mind.
Good Night.
Wednesday, November 9, 2011
Busy Wednesday
Lucas decided to wake up at 5am. I usually get up around 530 anyway and he wakes up later, about 730. So all morning was out of whack. So he ate breakfast before Ashton went to school. Ashton leaves at 630. Poor kid that is an early ride. Ashton played with the kitties and then went to school.
Lucas tried to play with the kitties also. They don't like him too well, yet. He don't like the feel of them. Guess that is a down syndrome thing. Textures of various items he don't like.
He napped and then we waited for First Steps to show up. They come for his speech therapy and physical therapy. Today was also the 1 year evaluation and all that fun stuff. He will now get services for PT and ST every other week. Just trying to get him crawling. He likes to get up on all fours but he won't move to crawl, just rock back and forth or even side to side.
I did some of my school work. Boy those classes are hard. Especially Communication, writing. I don't write that well. I do have 100% in my health/science class. Yeah me. Not doing too bad over all.
Lucas ate his lunch. Fell asleep during lunch time so he took a nap. A long nap.
Ashton came home and him and I baked homemade chocolate chip cookies. Pretty yummy. Ashton loves to cook. He also loves to play with his brother. Lucas loves his bubbin.
Nate went and had a scan done on his neck. Hopefully this chiro can get him all straightend up, so to speak. He has had his headaches worse than ever. It is hard because he is not working right now and the cost is $2000 for the whole year. Which is not bad at all but he is going to have to suck it up and go work at McD's or somewhere like that. He could probably work evenings and then have the days to get his adjustments made. I wish I was able to help him. I can't even get a loan for the poor kid. Someday I won't have to live like this. I am tired of not having anything or the ability to get anything. I can only hope and pray that things work out for us.
Had our dinner, gave Lucas a bath and came up to bed. Ashton was asleep by then. He has been going to bed early since time change.
Oh and when Lucas woke from his nap, he was in the portacrib and was just chatting to himself. Then he was quiet. I checked and there was a kitten in his bed staring at him and he was staring at the kitty. Was so cute.
Have another early day tomorrow. First steps will be here again. This time for his physical therapy this time. He just cries. It is so sad to put your baby through this.
Well I am tired. I have a headache and would love to go to the chiropracter myself, maybe someday.
Good Nite
Lucas tried to play with the kitties also. They don't like him too well, yet. He don't like the feel of them. Guess that is a down syndrome thing. Textures of various items he don't like.
He napped and then we waited for First Steps to show up. They come for his speech therapy and physical therapy. Today was also the 1 year evaluation and all that fun stuff. He will now get services for PT and ST every other week. Just trying to get him crawling. He likes to get up on all fours but he won't move to crawl, just rock back and forth or even side to side.
I did some of my school work. Boy those classes are hard. Especially Communication, writing. I don't write that well. I do have 100% in my health/science class. Yeah me. Not doing too bad over all.
Lucas ate his lunch. Fell asleep during lunch time so he took a nap. A long nap.
Ashton came home and him and I baked homemade chocolate chip cookies. Pretty yummy. Ashton loves to cook. He also loves to play with his brother. Lucas loves his bubbin.
Nate went and had a scan done on his neck. Hopefully this chiro can get him all straightend up, so to speak. He has had his headaches worse than ever. It is hard because he is not working right now and the cost is $2000 for the whole year. Which is not bad at all but he is going to have to suck it up and go work at McD's or somewhere like that. He could probably work evenings and then have the days to get his adjustments made. I wish I was able to help him. I can't even get a loan for the poor kid. Someday I won't have to live like this. I am tired of not having anything or the ability to get anything. I can only hope and pray that things work out for us.
Had our dinner, gave Lucas a bath and came up to bed. Ashton was asleep by then. He has been going to bed early since time change.
Oh and when Lucas woke from his nap, he was in the portacrib and was just chatting to himself. Then he was quiet. I checked and there was a kitten in his bed staring at him and he was staring at the kitty. Was so cute.
Have another early day tomorrow. First steps will be here again. This time for his physical therapy this time. He just cries. It is so sad to put your baby through this.
Well I am tired. I have a headache and would love to go to the chiropracter myself, maybe someday.
Good Nite
Tuesday, November 8, 2011
Starting New Here
I copied the post from the caring bridge page. So here we are on a new blog. I will be blogging about the whole family and not just Lucas. I will still post about him and Down Syndrome.
November 8, 2011
Tuesday, November 8, 2011 4:50 PM, CST
We have new family members
Not that we wanted any new members but we had 5 kittens show up in the barn. Nathan saw 2 one day last week and heard another one crying from a ditch. So we had 3 on Thursday. Friday morning, there was another and then another. Boy oh boy. And they are all boys.
Lucas will have a few more playmates in the house. Lord help those kitties.
We went to see cousin Donna over the weekend. I miss seeing her. Lucas had fun. He received a lot of attention.
His little teeth are really sharp. Coming right along. Just waiting for the day he bites himself. Still a really great army crawler. He can cruise just about anywhere. He can also pull himself up to the bottom step. Still working on his actualy crawl. He can get on all 4's and rock. Tomorrow is occupational therapy and the next day is his physical therapy.
Ashton has a birthday coming up. His party is the 19th. He wanted to invite his friends to skate. He is growing up and not wanting the kiddy party any longer.
Christmas will be fun, hopefully. Lucas will like the tree. The lights will grab his attention. Not kowing what to get the kids is so hard. Money is super tight too. Hoping I can find them each a few things. This year is my year for Santa present for Ashton. He never gets what his dad will get him. I hate it, I can't compete. I know, that is not what matters. But to an 8 year old, that is what matters. So hard when he ask me and says, Is this all you got me? I have to remember someday he will understand. Someday I will get the chance to buy all my kids something nice.
Enough of my pity. I am so thankful for all my boys. I have been blessed.
Lucas will have a few more playmates in the house. Lord help those kitties.
We went to see cousin Donna over the weekend. I miss seeing her. Lucas had fun. He received a lot of attention.
His little teeth are really sharp. Coming right along. Just waiting for the day he bites himself. Still a really great army crawler. He can cruise just about anywhere. He can also pull himself up to the bottom step. Still working on his actualy crawl. He can get on all 4's and rock. Tomorrow is occupational therapy and the next day is his physical therapy.
Ashton has a birthday coming up. His party is the 19th. He wanted to invite his friends to skate. He is growing up and not wanting the kiddy party any longer.
Christmas will be fun, hopefully. Lucas will like the tree. The lights will grab his attention. Not kowing what to get the kids is so hard. Money is super tight too. Hoping I can find them each a few things. This year is my year for Santa present for Ashton. He never gets what his dad will get him. I hate it, I can't compete. I know, that is not what matters. But to an 8 year old, that is what matters. So hard when he ask me and says, Is this all you got me? I have to remember someday he will understand. Someday I will get the chance to buy all my kids something nice.
Enough of my pity. I am so thankful for all my boys. I have been blessed.
November 1, 2011
Tuesday, November 1, 2011 10:20 PM, CDT
Wow what a weekend
The Step Up Walk was awesome!!!! So many people to thank. We had a lot of supporters there with us and it was a huge event. We had many supporters that couldn't make it too. The day was beautiful. Started out cold. Then the sun came out and it was so warm with the sun shining. There were so many people, so much to do. Lots of yummy stuff to eat. Donuts, juice, milk, hot chocolate, ice cream, hot dogs, brats, hamburgers, chips, fruit, cole slaw, coffee, slushes, cupcakes, and pop. I hope more people will want to come out next year. There are so many amazing people there. Everyone is so caring. I like going because we don't get that pity look, the pity comments, and we feel comfortable. My baby is loved and talked to. He isn't a side show at anything to do with the Down Syndrome Guild. He is loved. That is why I have pushed so hard to get people to come to these events, sign up, and suport the Guild. They are great. Helpful and make us feel like we belong. It was funny, I didn't see anyone as different out there. To me, it was a bunch of people having a great time raising money for a great organization.Lucas had fun, it was a little much for him toward the end of the day. He was so cute at the end of the walk. Their was a bunch of boys saying Yeah and Hi Fiving. Lucas's Aunt Chris held up his hand to give the high five and he yelled Yeah Yeah Yeah at each one of them. He had fun. Just a lot of stimulation that he can't handle and cries.
We didn't go trick or treating but I did put Lucas in a costume. He was a little lion. One bad thing about living out in the country. No trick or treating here. I plan on taking him next year. Him and his bubbin (Ashton) will get to go next year. I will make sure of it. Maybe I should have them a little Halloween party. That might be fun.
Enjoy the photo of the little lion. He sure is a cutie pie.
Oh and his new thing besides both teeth are in, on the bottom, is to do raspberries. All the time. Cute tho.
I took him in the wagon today. Had to clean out the camper of any food. He layed on his belly the whole way down to the camper and then I sat him up, backwards, on the way back up the hill. He made the aaaaaaaa sound the whole way up because it was bumpy. He got to hear his voice vibrating. He loves it outside and it was about 80 today. Going to miss these nice days. It is going to be about 30 degrees cooler tomorrow. I already miss summer.
October 26, 2011
Wednesday, October 26, 2011 2:58 PM, CDT
2 days in a row
Lucas is at his grandma and grandpas house. Yesterday we went to KC to drop off a trailer and then to get lunch.
Got to grandmas and he was so happy to see her. He just grinned and ate his lunch. He did some talking to grandma and he did his version of the itsy bitsy spider. He is so proud of himself and yells like we do when we are happy. So cute.
He comes home tonite. It is lonesome here without him.
I did get the carpet cleaned and my homework done. It is nice to have a break but even nicer to have him wake up doing his baby talk and smiling when he comes downstairs each morning.
I bet that tooth has come in more.
Saturday is our walk, hope to get lots of pictures of all of Lucas's supporters. It is nice to have the DSG, Down Syndrome Guild. Having others that know what you are going through is nice to have around. We feel so comfortable going to the functions they offer. Unless you are walking or have walked in my shoes, you just don't understand what it is like. Lucas is a joy to have and I wouldn't change a thing about him. I just wish the world was a different place and more accepting. I wish the world and even people close to us, would stop saying the R word. It is so hurtful.
Thanks for reading and write more later.
Got to grandmas and he was so happy to see her. He just grinned and ate his lunch. He did some talking to grandma and he did his version of the itsy bitsy spider. He is so proud of himself and yells like we do when we are happy. So cute.
He comes home tonite. It is lonesome here without him.
I did get the carpet cleaned and my homework done. It is nice to have a break but even nicer to have him wake up doing his baby talk and smiling when he comes downstairs each morning.
I bet that tooth has come in more.
Saturday is our walk, hope to get lots of pictures of all of Lucas's supporters. It is nice to have the DSG, Down Syndrome Guild. Having others that know what you are going through is nice to have around. We feel so comfortable going to the functions they offer. Unless you are walking or have walked in my shoes, you just don't understand what it is like. Lucas is a joy to have and I wouldn't change a thing about him. I just wish the world was a different place and more accepting. I wish the world and even people close to us, would stop saying the R word. It is so hurtful.
Thanks for reading and write more later.
October 25, 2011
Tuesday, October 25, 2011 5:27 PM, CDT
My oh My we have been busy
Wow July was the last time I wrote. Here goes:I started school in July so that has kept me busy. My free time has been spent promoting the Down Syndrome Buddy Walk. We have about 50 walkers and over $2500 in donations. Yeah Us. It is this Sat the 29th.
Ok enough excuses.
Lucas is growing like a little weed. He had his one year appt and he was 29in and 19lbs. Small for a typical baby but big for a child with down syndrome. He had two parties. He was a little overwhelmed and cried but over all he had fun.
His helmet is done, Yeah Lucas. That was finished two weeks ago. Last week he had to have blood drawn to test that nasty ole thyroid again. And it came back normal. See he is a normal baby.
He failed his hearing test again. They think it is because of the small canals, fluid just can't drain right. We have an ENT (Ears Nose Throat) appt on Nov 29th. Hopefully it will be a quick fix.
He still isn't crawling but he can army crawl. He was looking like a zombie only using the right arm and leg to army crawl. I so wanted to make him up like a zombie baby and video that but I waited too long and now he really army crawls. He can actually get up on all fours and rock back and forth. He just won't crawl. He did go over to the step and lifted himself up onto his knees and sat down on his butt. Very cute but oh no here he goes. He actually sat up 3 times by himself but hasn't done it since. Goofy boy.
Today was another mile stone for Lucas. He got his 1st tooth. He is doing so well. He sure is a precious child.
Today Lucas is visiting his grandma and grandpa tonite and tomorrow. Mommy gets some cleaning carpet time and school work time. Those times are very few.
I keep saying this and I will keep this updated at least weekly. Promise
July 19, 2011
Tuesday, July 19, 2011 6:05 PM, CDT
Its Hot
As it says, It is Hot here. 100 degrees.Well lets see, Lucas is army crawling now. Nothing gets in his way of what he wants. So cute to see. It won't be long until he is up on all fours.
It is very hard to constantly say, no he isn't crawling, no he isn't trying to go upstairs, no he has no teeth yet. I guess it just gets annoying and I shouldn't let it but I am explaining this to people who know he will not progress as a typical child will.
He is doing very well for 9 months, soon to be 10 months. He has been practicing sitting up. Another huge accomplishment. His bubbin, Ashton, has been gone for a couple weeks so he hasn't gotten as much practive. Ashton loves to have him sit and have his arms ready to catch him. Very cute. He tells Lucas, "Time to Practice."
We are getting geared up for the Step Up for Down Syndrome Walk. It is in October but we are trying to get walkers and donations now. He is doing pretty well but we are only beginning.
The helmet is coming along. Nothing new there. Doc says as long as he is tolerating it then he can wear it. If he was sitting more then the helmet time could be cut down.
He is growing everyday and eats like a little piggy. He eats a lot. My hungry baby.
I am so fortunate that Lucas is getting along really well. So lucky he is healthy.
Well not much else to say. School for me kept me a little busy. Have this week off and then I will have 2 classes to do. Wish us luck to get a schedule down.
June 28, 2011
Tuesday, June 28, 2011 12:05 PM, CDT
9 months
Lucas had his 9 month appointment yesterday. He is growing. Might seem small for most of you but he is a big boy. 27.5 in tall and 17.2lbs. Everything is going great with him. We are so lucky.
He has learned a couple signs. EAT and MORE, go figure. He loves to eat. He thinks he should have everything we have.
We practice sitting and he can sit about 15 seconds alone. He tries to crawl, we are getting some hip helpers to keep him from being "frog legged".
The helmet is coming along fine. Maybe 6 more weeks. He is a trooper when it comes to the helmet.
We have had some family issues come up. I have decided to stay away from my parents. I have a niece that lives there and she has a life sytle that is not appropriate. She also has a little boy that was born 5 days after Lucas. Of course he is a typical child and is on target with the typical children. She has recently made a comment that my sister and I are jealous because she has a perfect baby and ours are defective. Well no one said anything to her. Just shows me how small minded people can be.
We are starting our begging for donations for the Step Up for Down Syndrome walk. This is a walk that benefits the Down Syndrome Guild of KC. If you would like more info let me know. I think it is great that they work so hard in getting the word out what Down syndrome isn't. It is a lot of work even for me to try and correct people who use the R word and mean it so hurtful. Trying to tell people that these children are children and not a syndrome. So if you would be so kind if you find yourself using the R word, to try and correct yourself and others. And please refer to the children and adults with Down syndrome as the person they are first. They do have Down syndrome, not Downs and not DS. Teachers who work with children with Down syndrome are Teachers who teach children with Down syndrome, not they teach downs kids. Just so demeaning to a perfect human being. A gift from God.
Thanks for listening. Please if you have any questions, I like for people to ask me and not just assume or be afraid to hurt my feelings. I like to explain and teach about Down syndrome.
He has learned a couple signs. EAT and MORE, go figure. He loves to eat. He thinks he should have everything we have.
We practice sitting and he can sit about 15 seconds alone. He tries to crawl, we are getting some hip helpers to keep him from being "frog legged".
The helmet is coming along fine. Maybe 6 more weeks. He is a trooper when it comes to the helmet.
We have had some family issues come up. I have decided to stay away from my parents. I have a niece that lives there and she has a life sytle that is not appropriate. She also has a little boy that was born 5 days after Lucas. Of course he is a typical child and is on target with the typical children. She has recently made a comment that my sister and I are jealous because she has a perfect baby and ours are defective. Well no one said anything to her. Just shows me how small minded people can be.
We are starting our begging for donations for the Step Up for Down Syndrome walk. This is a walk that benefits the Down Syndrome Guild of KC. If you would like more info let me know. I think it is great that they work so hard in getting the word out what Down syndrome isn't. It is a lot of work even for me to try and correct people who use the R word and mean it so hurtful. Trying to tell people that these children are children and not a syndrome. So if you would be so kind if you find yourself using the R word, to try and correct yourself and others. And please refer to the children and adults with Down syndrome as the person they are first. They do have Down syndrome, not Downs and not DS. Teachers who work with children with Down syndrome are Teachers who teach children with Down syndrome, not they teach downs kids. Just so demeaning to a perfect human being. A gift from God.
Thanks for listening. Please if you have any questions, I like for people to ask me and not just assume or be afraid to hurt my feelings. I like to explain and teach about Down syndrome.
June 15, 2011
Wednesday, June 15, 2011 2:54 PM, CDT
Been a really long time
Ok so I have had some medical issues of my own so it has been hard to keep up here.
I had surgery 2 weeks ago and on the mend! Yeah Me
Lucas is doing great. We are practicing sitting up. He can almost army crawl now. Very cute. He is all over the place with rolling and pivoting. He is just amazing. Still a happy baby. He actually spent 2 nights alone with daddy while mommy was in the hospital and he stay the night with Grandma Chris for the first time. Mommy don't like that but I know I have to share once in a while.
His head is rounding out so well. I can't wait for the Hat as I call it, his helmet to be gone. I miss his little hairs touching my face when I hold him.
He is loving the weather now that is a little nicer now and then. Lucas has been going to the races to watch daddy race. Nothing scares him and he can actually sleep through that noise.
Getting a laptop, hopefully, soon. Starting school but I will also have an easier time updating.
https://secure.ezeventsolutions.com/fr/FDFDS/2011StepUp/CoolHandLucas
Check out this link. It is for Step up For Down syndrome walk in October. All it cost is the registration fee and you get all the fun food and tshirt with that cost plus the money goes to a great organization. Lucas would love to see you there.
I had surgery 2 weeks ago and on the mend! Yeah Me
Lucas is doing great. We are practicing sitting up. He can almost army crawl now. Very cute. He is all over the place with rolling and pivoting. He is just amazing. Still a happy baby. He actually spent 2 nights alone with daddy while mommy was in the hospital and he stay the night with Grandma Chris for the first time. Mommy don't like that but I know I have to share once in a while.
His head is rounding out so well. I can't wait for the Hat as I call it, his helmet to be gone. I miss his little hairs touching my face when I hold him.
He is loving the weather now that is a little nicer now and then. Lucas has been going to the races to watch daddy race. Nothing scares him and he can actually sleep through that noise.
Getting a laptop, hopefully, soon. Starting school but I will also have an easier time updating.
https://secure.ezeventsolutions.com/fr/FDFDS/2011StepUp/CoolHandLucas
Check out this link. It is for Step up For Down syndrome walk in October. All it cost is the registration fee and you get all the fun food and tshirt with that cost plus the money goes to a great organization. Lucas would love to see you there.
May 23, 2011
Monday, May 23, 2011 12:52 PM, CDT
I am Lame
Ok so it has been a long long while since I updated. Just trudging along day by day and they seem to go by so fast.
Lucas is still rolling everywhere. It is harder for him to sit up but we are practicing that skill. He is still happy happy happy. I am so fortunate. He loves to play in his excersaucer and jump. Very cute. He is making little progresses here and there. He can pick up some puffs and just look at them but can't make the hand move to the mouth. He can hold his bottle for long periods also. Can't believe he will be 8 months old on Wednesday.
We did go back to get the adjustment on his helmet. His head has increased 4mm from front to back. May not seem like much but it is making a big difference.
We don't have a lot to report. We go outside as much as possible. Lucas loves it out there.
I will try to update sooner. I will be having surgery next week so I will not want to sit here at the computer. Haven't had time to get a laptop.
Take care and thanks for stopping in.
Lucas is still rolling everywhere. It is harder for him to sit up but we are practicing that skill. He is still happy happy happy. I am so fortunate. He loves to play in his excersaucer and jump. Very cute. He is making little progresses here and there. He can pick up some puffs and just look at them but can't make the hand move to the mouth. He can hold his bottle for long periods also. Can't believe he will be 8 months old on Wednesday.
We did go back to get the adjustment on his helmet. His head has increased 4mm from front to back. May not seem like much but it is making a big difference.
We don't have a lot to report. We go outside as much as possible. Lucas loves it out there.
I will try to update sooner. I will be having surgery next week so I will not want to sit here at the computer. Haven't had time to get a laptop.
Take care and thanks for stopping in.
May 3, 2011
Tuesday, May 3, 2011 6:31 AM, CDT
Lucas
Sorry it has been a while. Sometimes the days just go by in a flash and then it has been almost a week.
Last week we were just getting use to the helmet. More me than him. He started 23 hours a day last Friday. He really don't mind it. The worst of it is getting the thing on and off. Not an easy task. He loves to turn his head and wants to look at it. Funny to watch him but so hard to hold him. I have it down now. Daddy has to work at little harder at it and will get a little faster.
Lucas wakes up and usually his head and helmet smells like a dirty sock. Gross. You wouldn't think a cute little guy could smell like a sock. That is the only way to describe it. So I have to wash his head and the helmet also so he doesn't offend.
We go back on Monday to get an adjustment made. The part that was making his check really red doesn't do that but I am still going to see if they can do something with that part.
Lucas is getting really vocal. He carries on his own conversations. I was noticing last night how he is slower than my other boys. It don't bother me a whole lot unless I start thinking about it. All my boys were sitting already and scooting everywhere. Maybe not crawling yet but close. They could also hold their bottles by themselves. He tries but you can see how hard it is for him. He practiced last night with daddy and even put the bottle back in his mouth a couple of times.
I do notice how tiny he is. He isn't growing as quickly now it seems. Lucas sure has a HUGE smile.
He loves to play with his feet now. I know that seems like such a small task to most but to us it is a big step.
Lucas plays on the floor a lot more and is happy about it. He will roll and play so much he will fall asleep. Very cute to see that. One minute I hear him creaking and talking and then he is out.
He loves it outside. So content when we can go outside. Come on nicer weather.
Sat night we went to Ashton's cub scout ceremony, Ashton is now a Wolf. Graduated from a Tiger. Lucas was a good boy then we left there and went to the races to watch his daddy. He loves the races. He will watch those noisy things go by and then look up at me and grin and do it all over again. His little head just goes from side to side.
I will try and keep you updated a little more often. Hard to do on weekends when we go to Lucas' daddy's. I have no internet and no phone reception.
Last week we were just getting use to the helmet. More me than him. He started 23 hours a day last Friday. He really don't mind it. The worst of it is getting the thing on and off. Not an easy task. He loves to turn his head and wants to look at it. Funny to watch him but so hard to hold him. I have it down now. Daddy has to work at little harder at it and will get a little faster.
Lucas wakes up and usually his head and helmet smells like a dirty sock. Gross. You wouldn't think a cute little guy could smell like a sock. That is the only way to describe it. So I have to wash his head and the helmet also so he doesn't offend.
We go back on Monday to get an adjustment made. The part that was making his check really red doesn't do that but I am still going to see if they can do something with that part.
Lucas is getting really vocal. He carries on his own conversations. I was noticing last night how he is slower than my other boys. It don't bother me a whole lot unless I start thinking about it. All my boys were sitting already and scooting everywhere. Maybe not crawling yet but close. They could also hold their bottles by themselves. He tries but you can see how hard it is for him. He practiced last night with daddy and even put the bottle back in his mouth a couple of times.
I do notice how tiny he is. He isn't growing as quickly now it seems. Lucas sure has a HUGE smile.
He loves to play with his feet now. I know that seems like such a small task to most but to us it is a big step.
Lucas plays on the floor a lot more and is happy about it. He will roll and play so much he will fall asleep. Very cute to see that. One minute I hear him creaking and talking and then he is out.
He loves it outside. So content when we can go outside. Come on nicer weather.
Sat night we went to Ashton's cub scout ceremony, Ashton is now a Wolf. Graduated from a Tiger. Lucas was a good boy then we left there and went to the races to watch his daddy. He loves the races. He will watch those noisy things go by and then look up at me and grin and do it all over again. His little head just goes from side to side.
I will try and keep you updated a little more often. Hard to do on weekends when we go to Lucas' daddy's. I have no internet and no phone reception.
April 27, 2011
Wednesday, April 27, 2011 10:01 PM, CDT
Something New
Today my little one started doing the raspberries. Slobber running everywhere and he does it until he runs out of breath. It is so amazing at each little task he masters.
I am so fortunate that he is moving right along. I have such high hopes for him and his future.
He loves to yell AAAAA at you to get your attention. We have been working on momma and ma ma ma ma. Someday soon.
More helmet wearing. 4 hours on and 1 hour off and tonite is the first night sleeping in it. I sure hope it goes ok. He still don't seem to mind it and the little spots of red don't seem to be there any longer either.
I still look at him and tell him I am sorry. It hurts. I don't want to see my baby go through this. I have to keep telling myself it is for a short time.
And for some fun stuff. Nathan found almost 1/2 of a 5 gal bucket full of mushrooms. I am going to be cooking some yummy ones tomorrow.
I am also going to try and find me a lap top so I can look at some online classes. I will not let this opportunity pass me by again and not get some kind of training while I am at home and have a chance. Just have to find the wireless laptop so I can work while baby plays. Wish me luck!!
I am so fortunate that he is moving right along. I have such high hopes for him and his future.
He loves to yell AAAAA at you to get your attention. We have been working on momma and ma ma ma ma. Someday soon.
More helmet wearing. 4 hours on and 1 hour off and tonite is the first night sleeping in it. I sure hope it goes ok. He still don't seem to mind it and the little spots of red don't seem to be there any longer either.
I still look at him and tell him I am sorry. It hurts. I don't want to see my baby go through this. I have to keep telling myself it is for a short time.
And for some fun stuff. Nathan found almost 1/2 of a 5 gal bucket full of mushrooms. I am going to be cooking some yummy ones tomorrow.
I am also going to try and find me a lap top so I can look at some online classes. I will not let this opportunity pass me by again and not get some kind of training while I am at home and have a chance. Just have to find the wireless laptop so I can work while baby plays. Wish me luck!!
April 26, 2011
Tuesday, April 26, 2011 9:56 PM, CDT
Great News Today!!!!
Today I received a call from the doctor's office. I saw that phone number show up and my stomach was in knots.
I was waiting for his blood test results for his thyroid level.
Well.....It was 3.5! YEAH!!!!! 0 - 7 is normal. All those blood draws when is was just weeks old kept coming back as high. December was 6.5 so he was in the clear. In March we went to his Down Syndrome Clinic appt and they wanted another reading. It came back at 9.5. Just crazy, a roller coaster ride I didn't want to be on. Sure was not fun.
So this is great news for him to be in the normal range.
Lucas goes back when he is a year old and if the numbers are the same he will only have to be tested once a year unless something comes up.
Today is also day 2 of the helmet. 2 hours on and 1 hour off. Not sleeping in it.
I was waiting for his blood test results for his thyroid level.
Well.....It was 3.5! YEAH!!!!! 0 - 7 is normal. All those blood draws when is was just weeks old kept coming back as high. December was 6.5 so he was in the clear. In March we went to his Down Syndrome Clinic appt and they wanted another reading. It came back at 9.5. Just crazy, a roller coaster ride I didn't want to be on. Sure was not fun.
So this is great news for him to be in the normal range.
Lucas goes back when he is a year old and if the numbers are the same he will only have to be tested once a year unless something comes up.
Today is also day 2 of the helmet. 2 hours on and 1 hour off. Not sleeping in it.
April 25, 2011
Monday, April 25, 2011 3:30 PM, CDT
Helmet Day
On our way to get the helmet at 830am. Oh and today Lucas is 7 months old. Yeah Lucas!Long drive and crappy weather but we made it. Lucas, Ashton and I.
Lucas was a little trooper and didn't mind the helmet on and off. He did get fussy because he was hungry.
Well here we go. Today is 1 hour on and 1 hour off and no sleeping with the helmet.
He is very cute but still makes me so sad that he has to wear one. You just want your baby to be perfect in every way and not have to stray from the "normal".
Did a lot of running and I was so tired of sitting in the truck and driving all day long. Ashton was really good also.
Here is a photo of my little guy and his new hat.
April 23, 2011
Saturday, April 23, 2011 12:00 AM, CDT
This is what you find in Holland - Bad Hair
This is what you find in Holland - Bad Hair. : )
WELCOME TO HOLLAND I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
April 22, 2011
Friday, April 22, 2011 9:16 PM, CDT
Today is finally coming to an end
So we left the house today about 930am and drove in the pouring rain. YUCK. I didn't want to go all the way by KU but we were on the way.
It is about 1040 and I get a phone call. It happens to be the place we are getting the helmet from, Hangar. They called to tell me that the helmet did not come in today and the company just called them to tell them it didn't get out on the shipment to be delivered at the morning delivery. I just said are you kidding me. We have been driving about 1.5 hours in the rain and there is no helmet. Sorry is what they said but it will be in Monday. Ok gas is 3.69/gal and it is about 63 miles one way. Unbelievable. So my next appt is 10am Monday. I have to call them at 830 to make sure it makes it but I won't get there on time. Oh well. I will get there when I get there.
So we went to Children's to get Lucas' blood draw to see what his TsH level is. This will determine if he will be on thyroid meds or not. He was a trooper. The lady took us back and said she was a student and then got the other lady. They asked if the student could do it. I mentioned he had down syndrome and they decided against the student. Down Syndrome causes the veins to be a hard stick. He layed there and she put the rubber on his arm and he frowned and looked at her like you aren't making me smile and then he just started sucking on his lips and tongue. She found the vein easily this time and poked. He let out a small cry and then just puckered while the blood was filling the vile. When she took out the needle he cried again but only a second. He was a good boy.
Lucas Ashton and I decided to go to grandma and grandpa Hopkins to visit with them and his great grandma also. We had a good visit. Ashton got to play shuffleboard and played on a lap top.
Lucas played with everyone and was a great baby. He only has a small little bruise.
We dropped Ashton off with his dad and we came home.
What a day. Lucas was a happy boy and Ashton was a good boy too today.
It is about 1040 and I get a phone call. It happens to be the place we are getting the helmet from, Hangar. They called to tell me that the helmet did not come in today and the company just called them to tell them it didn't get out on the shipment to be delivered at the morning delivery. I just said are you kidding me. We have been driving about 1.5 hours in the rain and there is no helmet. Sorry is what they said but it will be in Monday. Ok gas is 3.69/gal and it is about 63 miles one way. Unbelievable. So my next appt is 10am Monday. I have to call them at 830 to make sure it makes it but I won't get there on time. Oh well. I will get there when I get there.
So we went to Children's to get Lucas' blood draw to see what his TsH level is. This will determine if he will be on thyroid meds or not. He was a trooper. The lady took us back and said she was a student and then got the other lady. They asked if the student could do it. I mentioned he had down syndrome and they decided against the student. Down Syndrome causes the veins to be a hard stick. He layed there and she put the rubber on his arm and he frowned and looked at her like you aren't making me smile and then he just started sucking on his lips and tongue. She found the vein easily this time and poked. He let out a small cry and then just puckered while the blood was filling the vile. When she took out the needle he cried again but only a second. He was a good boy.
Lucas Ashton and I decided to go to grandma and grandpa Hopkins to visit with them and his great grandma also. We had a good visit. Ashton got to play shuffleboard and played on a lap top.
Lucas played with everyone and was a great baby. He only has a small little bruise.
We dropped Ashton off with his dad and we came home.
What a day. Lucas was a happy boy and Ashton was a good boy too today.
Friday, April 22, 2011 7:22 AM, CDT
Helmet Day
What a dreary day out. We didn't have to get up at 545am because of no school for Ashton. Lucas slept til 7am. The thunder woke me up.
Off to get us ready to go. After the helmet appt we have to go have Lucas' blood taken to find out if his last blood draw was a fluke. His thyroid is running low. It did at the beginning and then it was fine. Now it is low again. Makes me so sad when he gets his blood taken.
Off to get us ready to go. After the helmet appt we have to go have Lucas' blood taken to find out if his last blood draw was a fluke. His thyroid is running low. It did at the beginning and then it was fine. Now it is low again. Makes me so sad when he gets his blood taken.
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