It is that time of year again. School sending out the little kids to sell things. I am not going to take orders and try to deliver things. If they don't think I am stressed enough they need to come on over. The only reason I even think about selling the stuff is because Tyler wants to go to the skating rink. So if you want to buy something from him go to the following web site:
www.christiancollection.com
Be sure to enter Tyler's name, school name: Victory Baptist School, city, and state so he will get credit. It will come directly to your house.
Orders have to be in by September 28. If you order let me know how many items so I can tell the school.
Thursday, September 22, 2011
Saturday, September 17, 2011
Today's Videos
It took Brianne till she was 4 before she wanted to ride on her Barbie jeep. It took two little monsters less than 2 years to decide it was the bomb and that they never wanted to get off. Clapping and holding hands in the air like on a roller coaster are the fun things to do in the Barbie jeep. I dread when Wyatt figures out how to drive it.
Notice how she gets down on the ground when the garage floor meets the concrete. She does this every time. I wonder if it is due to her eye sight.
The Bully
Friday, September 16, 2011
I Surrender
I surrender. I give up. Wyatt started getting sick 2 days ago. Last night Bailey started sneezing, and by 2 AM I was up suctioning her nose. Thank goodness they have not picked up the oxygen yet. They called on Wednesday from pulmonary saying she passed the overnight study and would send an order to d/c the oxygen. I am not going to answer the phone till we see if she is going to need it. Off to see the doctor because her temp is 100 and by the afternoon it will be 104. She deteriorates quickly.
Tuesday, September 13, 2011
Digest #1
I always have a lot to say and never get to put it into writing. There are many things I wish I had put in writing during the NICU stay. I sometimes don't put it into writing because I know some people don't want to hear anything bad and they just want sunshine and roses. Well instead of thinking about what I would put on the blog in my mind I plan to try to put it here in writing. For those of you that like sunshine and roses don't read a post that is headed with digest. I hope one day to look back at these post and think it all fells like a bad dream.
When someone will ask Lee how the twins are doing he tells a fib and says good. Liar, liar pants on fire. He says he does this because when they ask they really don't want to know but instead just want you to say they are doing good. WWWEEELLL, I refuse to lie and say this. If you don't want to know then don't ask. According to what kind of day I am having when you ask me, I may say ok or you might just catch me on the bad day where I tell you all about our problems. Again don't ask if you don't want to know.
#1 Don't Say Tip
When I say that Bailey doesn't eat nor does she like food at all, please do not tell me you wish you had that problem. I will look at you and say"really you want to never like food in your life, you want to struggle to eat enough everyday just to survive. Really!" Maybe we have misled people by not correctly wording what we say about her feeding problems. Bailey has a severe feeding disorder. There it is. I said it. Bailey should have been sent home from the NICU with a feeding tube. Instead she was sent home with us and their label for her was a "messy eater." Until I thought about using the haberman bottle there were days when I was syringe feeding her. Thank you God for the haberman bottle. With it I am able to squeeze the milk into her mouth and force her to drink her milk.
We have been to 3 different occupational therapist. We started with the last OT in January and we are no better now than we were in January. We sure are out a lot of money though. She is allowed only 30 visits/yr combined OT, PT, and ST. We are out of visits for the year so now it is all on us... all $440 a month. Insurance only reimbursed us 50% because she is out of network. I can thank EI for recommending an OT that is out of network. What happened to EI providing services for children that qualify for it? I will save that for another digest. Our OT told us last week that Bailey is not responding to traditional therapy, and she is wasting our money working on feeding. She will work on her sensory issues.
Where to go from here? We are looking at intensive feeding programs throughout the USA. We are also looking at a lady in CT that would see her for a few days and write a program for them to use for her in Alabama. We are again at that point where people are mentioning a feeding tube. I will first try a resource outside of Alabama before I allow this to happen. If I have not exhausted all resources before we go down that path then I feel that I have failed Bailey.
Typical Feeding for Bailey in a day
5AM Keep her asleep and feed her 4 oz boost hoping she will drink it
7AM try to get her to take 2 oz of boost
9AM 6 oz of yogurt or baby food
11AM keep asleep and feed 4 oz boost
4PM 4.5 oz of boost
6PM keep asleep and feed 4 oz boost
Her last bottle of the day we have started splitting up into 3 attempts so we can get her to take the entire 4.5 oz. We attempt at 8:30, 9:30, and 11:00.
Would you like to come over and stay a few days? Lee and I don't have to worry about anyone coming and overstaying their welcome. They would never last long.
When someone will ask Lee how the twins are doing he tells a fib and says good. Liar, liar pants on fire. He says he does this because when they ask they really don't want to know but instead just want you to say they are doing good. WWWEEELLL, I refuse to lie and say this. If you don't want to know then don't ask. According to what kind of day I am having when you ask me, I may say ok or you might just catch me on the bad day where I tell you all about our problems. Again don't ask if you don't want to know.
#1 Don't Say Tip
When I say that Bailey doesn't eat nor does she like food at all, please do not tell me you wish you had that problem. I will look at you and say"really you want to never like food in your life, you want to struggle to eat enough everyday just to survive. Really!" Maybe we have misled people by not correctly wording what we say about her feeding problems. Bailey has a severe feeding disorder. There it is. I said it. Bailey should have been sent home from the NICU with a feeding tube. Instead she was sent home with us and their label for her was a "messy eater." Until I thought about using the haberman bottle there were days when I was syringe feeding her. Thank you God for the haberman bottle. With it I am able to squeeze the milk into her mouth and force her to drink her milk.
We have been to 3 different occupational therapist. We started with the last OT in January and we are no better now than we were in January. We sure are out a lot of money though. She is allowed only 30 visits/yr combined OT, PT, and ST. We are out of visits for the year so now it is all on us... all $440 a month. Insurance only reimbursed us 50% because she is out of network. I can thank EI for recommending an OT that is out of network. What happened to EI providing services for children that qualify for it? I will save that for another digest. Our OT told us last week that Bailey is not responding to traditional therapy, and she is wasting our money working on feeding. She will work on her sensory issues.
Where to go from here? We are looking at intensive feeding programs throughout the USA. We are also looking at a lady in CT that would see her for a few days and write a program for them to use for her in Alabama. We are again at that point where people are mentioning a feeding tube. I will first try a resource outside of Alabama before I allow this to happen. If I have not exhausted all resources before we go down that path then I feel that I have failed Bailey.
Typical Feeding for Bailey in a day
5AM Keep her asleep and feed her 4 oz boost hoping she will drink it
7AM try to get her to take 2 oz of boost
9AM 6 oz of yogurt or baby food
11AM keep asleep and feed 4 oz boost
4PM 4.5 oz of boost
6PM keep asleep and feed 4 oz boost
Her last bottle of the day we have started splitting up into 3 attempts so we can get her to take the entire 4.5 oz. We attempt at 8:30, 9:30, and 11:00.
Would you like to come over and stay a few days? Lee and I don't have to worry about anyone coming and overstaying their welcome. They would never last long.
Monday, September 5, 2011
A Shark Among Us
August 1
Wyatt wants to do everything the big kids do. He especially thinks everything Tyler does is the bomb. They now have him wanting to lay on a pillow and cover up. I swear we have the coldest natured kids I have ever known.
I just love all the many faces of Wyatt. No ones shoes are safe around Wyatt.
They really missed Tyler the first week or so of school. They would get so excited when he would come home. This is what awaited him when he would come in the door.
Who is the shark at our house? Wyatt would be the one. We have a problem with Wyatt biting. He bit us a few times, and I finally got him to understand that it was not acceptable to bite us. I would like to say that no I did not "bite him back" as some people suggested. Brianne is a different story. He bites her, and it is not little love bites. He always squeals as a warning before he bites her. She just aggravates him till he retaliates with biting. I would think she would get the idea.
Wyatt wants to do everything the big kids do. He especially thinks everything Tyler does is the bomb. They now have him wanting to lay on a pillow and cover up. I swear we have the coldest natured kids I have ever known.
I just love all the many faces of Wyatt. No ones shoes are safe around Wyatt.
They really missed Tyler the first week or so of school. They would get so excited when he would come home. This is what awaited him when he would come in the door.
Who is the shark at our house? Wyatt would be the one. We have a problem with Wyatt biting. He bit us a few times, and I finally got him to understand that it was not acceptable to bite us. I would like to say that no I did not "bite him back" as some people suggested. Brianne is a different story. He bites her, and it is not little love bites. He always squeals as a warning before he bites her. She just aggravates him till he retaliates with biting. I would think she would get the idea.
School Starts
On August 9th Tyler and Brianne started back to school. I feel as though I have started back also. Tyler is in 3rd grade, and Brianne is in K5. The first two weeks Brianne had already had two badges taken away for talking so I needed to come up with a way to bribe her. I told them both if Tyler did not get any tallies and Brianne got all her badges for the week I would take them somewhere special on the weekend. The first bribe week Tyler got 3 tallies, and Brianne got all her badges. She and I went to see the Smurfs. Tyler did so well till the 3rd week. The next week he got another tally. Poor fellow. He has As so far in everything but penmanship. He has a D in penmanship. I just don't know what to do about it.
Football Season
Friday, September 2, 2011
Faces of July
July 2
July 5
Wyatt and his shoe obsession
Wyatt and his shoe obsession
Ssshhh don't tell Tyler it is almost time to go back to school.
Brianne doesn't mind school yet. She doesn't know that she will have to actually learn this year. She thinks she can just flirt with the boys again. Heaven help us!
Such a ham for the camera
I don't think I mention before that Tyler participated in the sports camps again this summer. He had a week each of golf, wrestling, fishing, and basketball. I think after a week of fishing he had his fill of fishing. Don't get me wrong though he did enjoy the fishing. Brianne and Tyler also took swim lesson at the Y. They enjoyed it but I can't say they learned very much. Next year I want to take them to the swim Nazi.
Overall July was a quiet month for us. Brianne was sick with pink eye and high fevers. Although her white count was elevated, the doctor decided to treat it like a virus. Several days late after my phone call he had a change of heart. Lee said he was scared of me and was at that point willing to call anything in for me. Of course Bailey continued to go to see the occupational therapist. She saw the allergist and is not allergic to any of the foods she has had so far (that was a short list). You can scratch allergies off the list of possible reasons she still will not eat. We saw the GI doctor, and we stopped Wyatt's meds and increased Bailey's.
Thanks to the lady that handled the closing of our house in 2006 we were able to refinance our house. It has gotten very hard to find ways to finance a loan. She found a clause for us that made it possible for us to refinance. It was so sweet of her to go to the trouble. Using this clause made it impossible to close with her, but she still went to all the trouble of making it happen for us. Lowering our payment will help us have the money to pay for some of Bailey's medical bills.
Overall July was a quiet month for us. Brianne was sick with pink eye and high fevers. Although her white count was elevated, the doctor decided to treat it like a virus. Several days late after my phone call he had a change of heart. Lee said he was scared of me and was at that point willing to call anything in for me. Of course Bailey continued to go to see the occupational therapist. She saw the allergist and is not allergic to any of the foods she has had so far (that was a short list). You can scratch allergies off the list of possible reasons she still will not eat. We saw the GI doctor, and we stopped Wyatt's meds and increased Bailey's.
Thanks to the lady that handled the closing of our house in 2006 we were able to refinance our house. It has gotten very hard to find ways to finance a loan. She found a clause for us that made it possible for us to refinance. It was so sweet of her to go to the trouble. Using this clause made it impossible to close with her, but she still went to all the trouble of making it happen for us. Lowering our payment will help us have the money to pay for some of Bailey's medical bills.
My Baby Turns 5, July 6
I can't believe that Brianne is 5. She will start kindergarten this year. Poor teacher just doesn't know what is coming. She loves to talk and socialize.
We did not have a party this year because they got the big swing set. We just had the grandparents over for cake.
This is the best picture I could get of them before the party.
We did not have a party this year because they got the big swing set. We just had the grandparents over for cake.
This is the best picture I could get of them before the party.
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