Tyler, Brianne, Wyatt, and Bailey

2011 Santa Picture

2012-01-21T21:29:00.011-06:00

Just look at the picture. Need I say more? LOL I always get a Santa picture. There was no reasoning with them. I can safely say that this year the twins do not like Santa.

Christmas Day, 2011

2012-01-19T10:32:00.002-06:00

Christmas day at our house is LOUD. Who am I kidding? Every day is loud here. Of course we had to wake up all the kids. When we were little we always got up early. I have such sweet memories of Christmas as a kid. I hope they do also.

A quick run down of the day:
More Barbies....

Spy glasses....

More bows...

Stocking time...

The new cooks.....

The day after Christmas Lee and I were glad to get out of the house some. We can only take so much of sitting at the house. One day we hope we can spend Christmas with all of our family. We just need to give the twins more time to grow new lung tissue.

Christmas Eve

2012-01-19T09:52:00.005-06:00

Grandaddy and Maw came for a visit on Christmas Eve. Maw brought Brunswick stew, dumplings, ham, pie, and cake. Have you ever had coca cola cake? If not, you are definitely missing a treat.

While Lee and Grandaddy carried the toys inside and assembled them, the kids played outside. Wyatt quickly saw new toys through the window.

Tyler would have LOVED this train when he was Wyatt's age. Now he must settle for chasing him around the track.

I have heard my mother say a hundred times that all she wanted when she was little was a bicycle. I always wanted a doll house. Of course Brianne had to have one.

After all the excitement of the morning they were ready for their nap. Even after her nap Bailey was exhausted.

Before the kids went to bed we fed the reindeer.

Wyatt did not understand what we were doing but he sure did enjoy throwing out the food.

Bailey just wants to eat the plastic. She is just happy she is doing her two favorite things.... being outside and biting on plastic. I don't understand why she likes plastic but not food. We have to take it away from her all the time.

Putting the stockings out

All I wanted was a picture of them all sitting at the fireplace. It was easier to get a picture when we only had one child. Now they just gang up on us.

Christmas Begins

2012-01-19T09:39:00.003-06:00

December 22
Grandaddy, BeBe, and Sophie came to celebrate Christmas with us. Lee fired up the grill, and we had hotdogs and hamburgers. It was simple and much easier than taking 5 kids to a restaurant. The kids enjoyed playing with Sophie. I am sure Sophie thought it was a very loud place to be.

This is one kid that has grown this year. He looks so big up on those pillows.

Bows, bows, bows.... Bailey loves bows. Who needs a present?

I was very surprised that Wyatt knew exactly how to open his presents. I thought he would probably still have no interest in opening them.

Sophie was a big help to Bailey when she was trying to get into her chair.

Bailey is trying to pick out my next camera. She loves to steal mine off the counter. She may be the reason it is now sick and has to be replaced.

Christmas Break

2012-01-09T14:54:00.006-06:00

December 16 was the last day of school before Christmas break. They were excited to go to school that day because of their Christmas party, and also Tyler knew he only had to go for half day.
Brianne's class made their shirt for that day. I think they did a good job.

I went to Brianne's party.
There was singing....

Good food....

and even better was gift time....

I am so thankful that Tyler and Brianne go to a school where prayer is allowed and God is part of their everyday studies.

December 18
The kids wrote their list and sent them to Santa. They were cutting it close this year.

You gotta catch Wyatt fast. I barely got this picture.

She just doesn't understand what the fire is and where her paper went.

Happy Birthday Tyler!

2012-01-09T13:57:00.011-06:00

On December 9, 2011 Tyler turned 9!!!
I can't believe that my baby boy is 9. He has grown so much this year. He is a hard worker at school and made all As except in penmanship. He is such a kind, considerate kid.
For his birthday we took him to the zoo to see the Christmas lights and then we ate at Las Casitas. They enjoyed riding the train at the zoo. We even manged to take the babies with us. Of course the hand sanitizer was aplenty, and we did not let them near other kids. Going to the zoo for the Christmas lights is expensive. I don't think it is worth what they charge. He was so excited because Jacob spent the night.

12/11/2011
On Sunday Gandma and Mr. Steve stopped by to celebrate Tyler's birthday. We ate soup for lunch and then Tyler went and picked out his DS games.

12/4
Wyatt still adores his brother and imitates everything he does. Tyler even has him sticking his hands in the air when you say stick it up. Silly boy!

Payback can sometimes be very painful. I found this bite on Wyatt's arm. I guess Bailey has decided to get him back for all those bites she received. This is not the last time she bites him. LOL I have caught her several times trying to bite him. She tried to bite me when I stopped her. I guess when you have no other way to communicate, biting it is. Don't feel bad for him because 2 days ago I found a bite on Bailey's leg.

Bailey's "all of a sudden" progress is truly remarkable. She is saying almost as many words as Wyatt. She doesn't know what most of them mean like Wyatt, but it is still great progress. I will see her do something that Wyatt started doing months ago and instead of getting upset that she is lagging I have to tell myself that it is "all in her own time." Bailey's newest and cutest thing for December was figuring out the light switch. Below is the first time she found the light switches. She would stand there and turn the lights on and off, and she was even saying lights. I asked Lee what he would do if any of the other kids were on the box versus what you do when Bailey gets up there. We both answered the same. If it was Wyatt we would make him get down and tell him not to get up there. For Bailey you go over and try to teach her all there is about the light switch and being on the box. You don't really understand until you have a child with special needs.
I had to move the box because I was afraid she would get hurt. She did not have her new glasses (another story for later), and I knew she had limited vision. She later found the light switch on the stairs. I always know when she is on the stairs because the hall light will start going on and off.

12/10
She likes wearing things on her head. She doesn't care whether it is a pair of pants or a crown. She also gives sweet little kisses.

Catching up on November

2011-12-23T21:56:00.007-06:00

11/10
I had noticed that Bailey's pack n play had a small hole in the side. It was the pack n play we got 9 years ago with Tyler. I love this pack n play because it is so deep. She sleeps in our room in it so I did not think anything of the hole. I also did not notice the hole was getting bigger. Well.... I went in to check on her during nap time and this is what I found..

11/13
We (I mean I) decided to have a yard sale. We made just enough to put pine straw in our beds. The yard sale was not worth the time and effort, but on the plus side we did get the yard cleaned. The same day we discovered a certain little girl out of her bed again. When she saw Lee she went and stuck her head back in her bed. I guess she thought he could not see her out of the bed. LOL

We started working on the Christmas tree on November 27. The big kids were not very interested in helping with it at all. I was disappointed, but the little ones were crazy about the "lights." I am sad to say we still did not complete the tree.

My Little Indian

2011-11-18T12:22:00.005-06:00

Brianne decided to dress up as an Indian for school today. I waited till the last minute to get anything because she had not mentioned dressing up. She came home all excited yesterday telling me she could dress up as a Pilgrim or Indian for school. Off to Hobby Lobby we all went to buy fabric, leather, feathers, and paint. Tyler and Brianne painted the material. They had a good time and really that is all that counts.

This is Brianne's side. She went with the draw her cousins and brother theme. Tyler stuck with Indian symbols.
Someone could have mentioned that the paint bleeds through the material. It got all over the table. Thank goodness it was one of the table in the garage.

Dear Doctor,

2011-11-17T08:58:00.014-06:00

Dear Dr. K****,

Guess what?! I beat prematurity! I just thought you might want to know that since this is Prematurity Awareness Month. My mommy sure doesn't like you very much. You said so many awful things to her when I was in the NICU. My lungs did not "fall apart," and I even came home from the hospital with no oxygen or respiratory medications. Maybe you should learn some bedside manners so you don't hurt another mommy's feelings.

Sorry I have to go. I have more tables to climb and toys to throw out of the toy box.

Wyatt

P.S. Don't tell my mommy and daddy I know how to get a pen and write on the wall.

Dear Dr. B*****,

You helped me beat the odds. My mommy thinks you are the bestest person around. You always called her at just the right time to give her an update. I think she might have lost her mind without some of those phone calls. Thank you for never giving up on me. My mommy was so glad when you allowed my brother to be transferred back to your hospital. We love all the nurses too especially the ones that carried me around and held me when I was bigger.

Love,
Bailey

P.S. Please tell all those nurses thank you for teaching me how to make my mommy and daddy hold me all the time. I now have mad skills.

Prematurity Awareness Month

2011-11-15T22:00:00.000-06:00

November is Prematurity Awareness Month. Show your support by wearing purple this Thursday, November 17.

Sorry I got a couple of the dates wrong. I will correct them later. Her current picture is Nov 6 and his should be Oct 16.
Jessica I love the idea of seeing the picture of you in the purple. Please send us a picture!

The Hospital

2011-11-13T11:55:00.005-06:00

Although the babies were still sick the day after Halloween, they took the time to say goodbye to "bony." Of course Tyler named him bony.

Wyatt also took the time to make Grandaddy proud and play mechanic.

Now that they are getting better we begin the long process of trying to get back the weight on them. Wyatt is only down to 20.5 pounds (insert sarcasm). When Bailey goes for her synagis shot I plan to ask the doctor what they could have done differently this time.

11/4
Maw and I took Brianne for a girls weekend. The first night we stayed in Helen, GA. That was one LONG drive. It would not take that long if we could avoid Atlanta.

Saturday morning we went to the Cabbage Patch Hospital.

Brianne with a couple of nurses in the preemie baby room.

This is one of the Grandmothers in the toddler room.

I wonder what Brianne is thinking about when she looks at all those babies.

Baby Caitlyn was just born. Brianne gets to adopt her.

The doctor is giving her baby its first checkup and dressing it to leave.

Brianne taking the pledge to adopt her baby.

Brianne leaves with her new baby daughter that she named Caitlyn Whitney.

The front of the hospital
It has come a long way. It use to be a very small building. I wish I had a picture of the old building.

Saturday night we stayed in Auburn. We took Maw to eat at Cock of the Walk. YUM!! If you ever see one eat there!

Bailey thinks she made out like a mad bandit when we brought home this skirt for her. I was really surprised that she would wear it since the material might feel funny to her hands. She has even brought it to me so I will put it on her.

Denial

2011-11-11T10:28:00.002-06:00

Just wanted to put it out there that I am in total denial about the size of clothes my children wear. There is no way that Brianne is wearing a size 6. I bought a pair of jeans in a size 6 and thought they would never fit her. I almost cried when they fit. She is too darn tall. I also refuse to admit that Bailey is still in a size 12 month. She is 2! I have been packing up her 12 month clothes from last winter. Lee put a pair on her, and they fit. I refuse to acknowledge this. Poor Wyatt is in an 18 month size. Poor fellow I hope he is not always so short. What did I do to my poor babies?
Tyler finally made it to a size 8.

Halloween 2011

2011-11-02T17:52:00.006-06:00

Again this year the babies are sick for Halloween. The first year they were in the NICU fighting for their life, the second year they had colds, and this year they have the stomach virus. We all ended up with the virus (all 6 of us!!). Wyatt has lost so much weight you can see the bones in his head. He is really pitiful.
Although we were all sick I tried to make Halloween fun for the big kids. We carved a pumpkin on Sunday. I tried to get pictures and videos of all of them touching the pumpkin "guts." I think Tyler definitely had the most facial expressions.

Brianne just wanted to go wash her hands.

Wyatt was picking out imaginary pieces of the pumpkin. I don't think he ever actually touch anything.

Bailey refused to even let Lee put her hand down in the pumpkin. I am telling you the girl knew it was food so she wanted nothing to do with it.

The pumpkin definitely looked better lit up at night. Tyler would pick the hard one to do.

For Halloween night we took all four to Ra Ra's mom's house. It is the first and only house the babies have trick or treated at. The babies then went home, and I took Tyler and Brianne to a Church festival and trunk or treat event.

Cheering and the Pumpkin Patch

2011-11-01T17:06:00.006-06:00

October 18
The high school cheerleaders had a special night where the elementary girls could cheer with them. The Saturday before the game they practiced with them. This was a highlight for Brianne. She talked about it for weeks before. It was fun for the girls and very cute to see them cheer.

The little girl who sits on Brianne's back reminds me of Bailey. I hope one day to see Bailey on that field.

October 20
Another new thing for Bailey is wearing people's shoes. She doesn't put them on herself. She brings them to you to put on. She really enjoys them if they make noise when she walks.

They continue to enjoy the balloons.

Why do they have to read my books?

October 26
Brianne had a field trip, and I actually got to go. We started the day with the firemen coming to the school to talk with them about safety.

We then went to the pumpkin patch. The "farmer man" told us all about pumpkins. Brianne enjoyed holding the rotten pumpkin.

We then rode the hay ride to pick out a pumpkin.

Playing in the corn

We then went to Cracker Barrel for the kids to make biscuits. We also enjoyed a nice breakfast there. The field trip ended with a trip to the library. It was a fun packed 4 hours.

After we got home we took them to a local pumpkin patch to pick out a pumpkin.

Poor Tyler was at school when we went.

Oh another new thing I saw Bailey do this month was driving a car on the floor. Go Bailey!

Happy Birthday, Wyatt and Bailey!

2011-11-01T08:42:00.016-06:00

October 15 Wyatt and Bailey turned 2! Oh what a long way they have come in 2 short years. I found some pictures on Lee's phone of them in the first few weeks of being in the NICU. What a scarey, lonely time for us.
This is Wyatt a few days after his first big surgery. He would have been between 1 and 2 weeks old.

In this picture Bailey is around 2 weeks old. It is the day after she was transferred to South to be put on the oscillator. It is the first time I had ever touch her. I was so glad to find this picture on Lee's phone.

October 15, 2010
Wyatt and Bailey on their 1st birthday
October 16 the day of their 2nd birthday party
We again kept their party small due to the RSV, flu, and cold season.

Grandaddy was a bad boy and let Wyatt play in the cake.

Brianne was sweet and helped them open their gifts. She has also grown and changed a lot in the last year.

First time on his 4-wheeler

A video of Wyatt riding his motorcycle for the first time.

Mr. Steve, Tyler, and Brianne playing frisbee.

Enjoying Bailey's bean bag the next day.

Tyler says Bailey is studying her cards. If you look at her leg you can see her band aid where she went to the doctor for her 2 year old check up. She got two shots. One vaccine was for hepatitis. The other was her RSV shot which she will get every month for 5 months. We are so thankful she was approved by insurance to get it. It cost nearly 5K per shot. Wyatt did not qualify so we are just praying he doesn't get RSV.

Tremendous Cognitive Growth

2011-10-26T14:19:00.010-06:00

The last month has been so great for Bailey. She has started doing things that Wyatt has been doing for months. It is those small things that we as parents take for granted when we have an ordinary child. It may be a little boring hearing about what she is doing but posting it helps me keep up with it. I certainly did not have time for a baby book.

On October 2, Lee and I were letting the kids run around in the backyard. Wyatt is like a little monkey. He goes up and down the play set all the time. He goes down the slide on his belly or any way he pleases. This night I glanced at the swing set and guess who was up in it? Bailey Railey the little stinker.... We will have to watch her. Of course for this momentous event we have pictures and videos.

She will now go down the slide. She even goes down on her belly. She is dangerous though because she doesn't realize the boundaries of the set. As you could see at the end of the video she was trying to get down by going through the railing.

Wyatt still loves to swing in a big swing on his belly. It is so cute to see him holding his little feet up.

10/4
Brianne's class had community helper dress-up day. She wanted to be a chef.

10/11
Bailey "played" with a Barbie. She willing took the Barbie and looked and explored it. A month ago she would have threw the thing away from her.

10/12
She pushed a shopping cart.

Wy-man and his playmate Mac

Conference at the Beach

2011-10-23T09:39:00.004-06:00

We went to the beach September 22-25. Lee had a conference he had to attend so we took Tyler and Brianne with us. They only missed school that Friday. We had so much fun! One of the restaurants at the hotel had a breakfast buffet, and Brianne decided that was a must for us. The first morning we went without Lee, but after Brianne told him all about the food he decided to miss the conference the next morning to go with us. The weather was great, not too cold not too hot.

We made memories that we will not forget. I would venture to say we had more fun here than at Disney World.

The Good, the Bad and the Messy, September 2011

2011-10-09T19:34:00.010-06:00

Putting all medical issues aside, what is the hardest part so far about twins? Together they can tear something up in a matter of minutes. Take for instance a roll of toilet paper. Wyatt will sneak into the bathroom and get the roll. He will share his bounty with his sister. A whole roll of paper can make a very big mess. You will find pieces of it for days.

The therapist brought a blow up pool for us to put balls in for therapy. It was a wee bit too small.

Bailey thinks mommy got a bigger, better pool.

I am not a good estimator of size. It was very overwhelming in size at first. After a while it doesn't look as big. LOL The kids have really enjoyed it, and I think it has help with some of Bailey's sensory issues. Bailey's sensory issues (untreated and undiagnosed) affect everything Bailey does. She has very poor finger strength because she has been unwilling to pick things up like a normal toddler. It is also another reason she doesn't eat. I have tried to think up ways to make her get use to touching things she doesn't like. I have been taking play-doh and mashing it between her fingers. I also make her hold my hand when we walk through the house doing some tasks. She has become more willing to hold hands. She even comes and takes my hand to lead me to the door. She loves to go outside.

Wyatt loves to go in Brianne's room when she is not looking. He will dress himself up while he is in there.

Little mischief maker

Oh, the terrible little sneaks... Bailey has decided she wants to go up the stairs now. We will hear rats upstairs and guess who it is. We have a gate, and we would just prop it up on the wall so the big kids could come and go. I had B and W scared of the gate for all these months, but now they double team it and put the gate on the floor and go about their business.

My sweet boy

I really dislike these balls. The big kids sit on them while they watch tv. They constantly roll side to side and off of them. It is VERY annoying. You will tell them to get off of it, and the next thing you know they are on them again. They even have Wyatt doing it. Lee has threatened to use the knife on them (on the balls people not the children). ***even as I type Brianne is holding onto my dresser squeaking around on that ball. Get off Brianne!***

Brianne is bossy and thinks she can tell Wyatt what to do. I caught her spanking Wyatt so I had to discipline her and put her in the corner for time out. Wyatt went over there and started whacking her with a foam bullet. I told him to stop so he put himself in time out also. He was very upset with himself.

The newest way for Wyatt to take a picture is pulling up his shirt. He even tries to do the same for Bailey.

9/7
Bailey has started climbing into the toy bin. Wyatt has been doing this forever. I think the first time she climbed into it was actually on 9/6.

It is usually Mac Mac in the box with Bailey and Wyatt aggravating him, but today Bailey said she would trade places with him.

My bright idea was to put a shower curtain down for us to let them play with their therapy box of beans. Not a good idea on my part. The crinkle of the curtain was too much fun for them. We have since started using a sheet.

He has on Tyler's shirt and somewhere under there is a pair of Brianne's panties.

Sometimes you just gotten hate the camera

Kisses

2011-10-04T18:05:00.003-06:00

Today October 4, 2011 Bailey kissed her glow bug. You may not think that is a big deal but for us it is awesome and a small miracle. She also "fed" MacMac on Sunday by herself for the first time. For months Wyatt has been going into the garage and getting Mac a can of food. He then takes it over to his dish and pretends to shake it over his dish. Bailey has refused to hold the can (sensory issues in her hands) so I would put her hands on the can and walk her over to the dish. I would then shake it over his dish. Sunday she took the can in her own hands and walked over to his dish. Tonight she even hit the can on his dish. Small miracles but steps in the right direction.....

August Appointments

2011-10-03T08:49:00.009-06:00

I don't think I said anything about any of our doctor's appointments in August. It was a very busy month. On August 11, we went back for Bailey's 3 month followup appointment in Atlanta for her glasses. The next day Dad and I took them to the newborn followup clinic for their 18 month checkup. At this visit they have a psychologist do an evaluation to check their development. Their actual age was 21 months, 27 days and adjusted age was 18 months, 21 days. Wyatt scored the following:
Cognitively: 19 month old
Language receptive age: 16 month old
Language expressive age: 15 month old
This is suppose to mean Wyatt is at least 25% delayed in language skills and qualifies for speech therapy with early intervention.
Bailey scored the following:
Cognitively: 12 month old
Language receptive age: 7 month old
Language expressive age: 5 month old
We were encouraged to seek out services through early intervention. What a joke that is! Bailey is already receiving 2 hours of service a month with her "special instructor." They had a speech therapist come evaluate her, but she will not be seeing her. Her special instructor who is a vision therapist will work on her speech and all her other issues. She has never had any training in speech. It is the craziest thing I have ever heard or seen. We saw a different doctor this time. She asked if I had any concerns, and I asked about Wyatt chest and rib cage. I assumed that Wyatt might be released this time, and I want to know what we should do when he is older to clear him for any sports he might want to play. Oh that opened a can of worms. She went off on a tangent about how it could be restricting his breathing, and he may be crying when we put him to bed because of sleep apnea. She wanted him to see a pulmonologist and have a sleep study. I don't have to worry though because the social worker from the clinic never called to discuss anything about our visit that day. What a waste of money. If you have never seen his chest wall here is a picture.

I believe that his ribs were broken in the NICU, and they formed back abnormally. He had osteopenia so brittle bones were a problem back then. Who really knows what happened. We do know that it is not causing a problem now so we will not fix it. Another doctor said it would probably not cause any problems, but that he may want it fixed for cosmetic reasons. This is definitely something he will decide for himself. We would not put him through another unnecessary surgery. I think 4 surgeries are enough.

We also went to see the pulmonologist this month. He wants an overnight pulse ox study done to see if Bailey can have the oxygen off. We have not been putting it on her since her sats went back up. She only needs it when she is sick. I hate for it to be removed before we see how she will do when she has another cold. They leave me no choice though and said she can be admitted to the hospital if she has a problem.

Oh, did I mention I got a little R & R in Bolixi when I went to a Respiratory Therapy conference? My parents and Lee spent some quality time with the kids.

Selling for Tyler

2011-09-22T14:01:00.004-06:00

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.

Today's Videos

2011-09-17T17:15:00.014-06:00

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

I Surrender

2011-09-16T12:11:00.002-06:00

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.

Digest #1

2011-09-13T20:21:00.008-06:00

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.

A Shark Among Us

2011-09-05T20:03:00.006-06:00

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.

School Starts

2011-09-05T17:11:00.003-06:00

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

2011-09-05T09:20:00.003-06:00

Roll
TideRoll

Football season has started. Lee watched games all day on Saturday. I am thinking about not paying the cable bill. It won't hurt my feeling because I would rather read than watch television. Oh and the poor fellow is an Auburn fan.

Faces of July

2011-09-02T13:23:00.009-06:00

July 2

July 5
Wyatt and his shoe obsession

July 21
Ssshhh don't tell Tyler it is almost time to go back to school.

July 21
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!

July 22
Such a ham for the camera

July 23

July 25

I bet you are wondering what all the packages are doing on the floor. There is a simple answer with a very complicated ending. We were hunting for Bailey's lens. Yes it had fallen out AGAIN. Was that the hundredth time it has fallen out? Well in the hunt through the house Lee found all of these brownie bite packages. There were 14 packages of empty brownie bites and 1 little debbie under her dresser. I had noticed that the brownie bites went very quickly. I never imagined that Brianne was stealing the food out of the kitchen. I really don't understand why she feels the need to steal food. I hope this is a one time event. I made her pray to God for forgiveness and tried to explain to her why she must ask for food when she is hungry. If you are wondering, we found the lens. It was in the trash can just where Wyatt thought it belonged.

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.

My Baby Turns 5, July 6

2011-09-02T13:01:00.004-06:00

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.

Grandaddy is a big hit with twins. I think this might be because he will let them do whatever they want.

Brianne's cake was a princess theme. Someone did a poor job on it. It looked like someone had played in it.

Mr. Steve and Grandma

Grandaddy, BeBe, and Sophie

Grandaddy and Maw

Bailey decided to get into the presents since she was too little to open her presents on her birthday.

Poor Brianne! Wyatt got into her presents also, and he thought this one was just what he needed.

She got wonderful presents and enjoyed everyone immensely. All the kids love for people to come over to see them.

Laughter

2011-07-31T20:11:00.000-06:00

March 19

I can remember where and when Bailey first laughed out loud. We were in Gatlinburg at a supermarket. It was August 2010 and she about a week shy of being 10 months old. She had laughed at Brianne. For months after that we rarely heard another laugh, and frankly she did not even smile that much. Slowly she has come around and smiles freely. It still amazes me when I smile at her, and she smiles back. I am sure that one day I will take her laugh for granted, but for now when it happens I stop and enjoy.

Indiana Jones Tyler Style

2011-07-31T14:19:00.000-06:00

March 19

Walt Disney World inspired this video. Tyler has always had a good imagination. Brianne just doesn't seem to want to fall in with his plans. Well, what are little sisters for but to aggravate their older brother.

A Grandfather's Love

2011-07-24T09:36:00.008-06:00

If you are still wondering what was in those boxes, it was a play set. I finally got Lee on board with getting the kids a play set. I think we both know that the twins need a play set because it will be years before they will be able to go to a public one.
Grandaddy put it together almost completely by himself. Lee was here only one of the six days it took him to put it together. I regret not getting pictures after each day. Grandaddy spent 2 days putting it together while we were at the beach.

June 16
This was the afternoon after the 3rd day he spent putting it together. The kids put chairs up there and ate dinner.

I looked and Tyler had put Star Wars Lego men all over. I sure they were fighting it out.

June 23
Wyatt was Grandaddy's helper. He was in charge of making a mess and giving Grandaddy something extra to do.

The 5th day of work

June 25
The following pictures are from the sixth and final day.
I have proof that my Dad used directions for once.

Wyatt is ready to help Grandaddy build the play set. Yes he is in his sleep shirt. It is just too hot here to put on more clothes.

Again Wyatt the ever present helper.... He loves all of Grandaddy's tools.

She loves her Grandaddy. I wonder what he is telling her.

Grandaddy also brought watermelons so the twins got to try it for the first time. Of course Wyatt is willing to try anything.

This is Bailey's reaction to any food coming near her mouth. To get it in her mouth you just hold her hands down.

Poor baby! Her mean parents put food in her mouth.

We finally got Bailey to stand up on the floor. She is so scared the grass will touch her. She enjoyed driving.

Wyatt will climb up the stair and go down the slide all by himself. He loves it. Bailey did not like the slide and preferred standing under the set babbling at anyone swinging.

I don't know how my Dad did this by himself. If I had it to do over again I would have bought it in the middle of the winter so he would not have been out there in the heat putting it together. He had a 2 hour drive just to get here and then he worked on the set for hours. Exhausted and tired he then had to drive back another 2 hours. This is one Grandaddy that loves his grandchildren. If someone had told me 10 years ago my Dad would do half the things he does I would have laughed at them. The first time he went to one of Bailey's appointments with us I was amazed. I am still amazed. Lee and I would never have survived these last 22 months without them.
Don't worry Grandaddy. I am sure Tyler is right now trying to draw up some plans for you to build something with him. He knows you need something to do. Thank goodness I think he has forgotten the wooden car he wanted you to build.

June Happenings

2011-07-24T09:12:00.010-06:00

On the 6th we went to the pulmonologist and was cleared to take Bailey off some of the medicines she was put on in the hospital. This was good because we were planning to leave that Wednesday for the beach. She was on two diuretics which meant she could spend very little time in the heat. Don't get me wrong. We would never let them sit out in the sun for long anyway.

June 9
First time on the beach

Bailey wanted nothing to go with the sand or water. She did not even want to stand on the sheet.

Wyatt did not enjoy anything about the beach either. He got sand on his hands and refused to move his hands anymore. The sound and sight of the waves coming in was too much for both of them.

Tyler loves it all. I did not get a picture of Brianne because after just a few minutes I had enough of the babies. We went to the car. Brianne continues to be scared of getting her head wet. I hope she grows out of this soon because she needs to learn to swim.

Lee's brothers and family came down to eat with us. It was a very enjoyable night. The kids were very good. We took pictures of all the cousins, and yes my group took up most of the bench.

We ended up leaving the beach early due to Bailey getting sick. We hated to leave because Grandaddy, BeBe, and Sophie had just come down. On Sunday and Monday we took her to the doctor, and she got a shot of rocephin each day. On Tuesday I called the pulmonary group, and the RN said I needed to take her to Children's er if her sat was lower than 90%. Her sat that night had been dropping as low as 79%. What an er visit. They sent her home with no oxygen and the wrong dosage of steroids. They also told me an RN from the pulmonary group would be making a followup call. Of course 2 days later no one had called so I called them. After all the mix up was taken care of we got oxygen back in the home again. I think they should refund the $180 er copay I had to pay.

June 16
The many faces of Wyatt

June 21
Wyatt likes to go in our room and get Bailey up from her naps. He thinks he is her boss. I would just like to say a little prayer that I am so thankful that God has allowed us to get a house that had a master bedroom with a study. God knew we would need it in the future. I wake up from the smallest sound so having her way across the room is a blessing. Plus the O2 concentrator is LOUD. I also pray she is soon well enough that I can kick her back out of our room. :)

Big sister giving Wyatt a ride.

June 30
Grandaddy with Wyatt and Bailey before we left to take Bailey to see the neurologist.

What else did we do medically this month? You name it we probably had it this month. We continued to see OT, PT, and vision therapy. Does she eat any better? NO! Although Wyatt is still behind with his eating skills, he does love to try to eat everything we will let him. He still does choke some, but he is getting better. We saw the dermatologist June 29 and Bailey has keratosis pilaris or KP. She needs to use certain soaps, lotions, and detergents. In the future if she cosmetically has a problem with the "rash" there are some other treatments. Hopefully it will improve as she gets older and not be as noticeable. On June 30 we went to the neurologist. He said that the nystagmus that we see is caused from a lack of sight at some point. It started when she went blind in April 2010. He said most likely the sudden blindness occurred due to an infection in the brain that she managed to fight off herself. He said she is a miracle baby. He also feels so strongly that Bailey is not autistic that he is willing to write it in her chart. They both continue to amaze us. To think that 10 years ago they might not have survived.

May 2011

2011-07-23T06:48:00.009-06:00

I think I was absent during the month of May. I took maybe 5 pictures with the camera. I did manage to get some with my camera phone. Low quality but convenient. I will share a few.

May 8
On Mother's Day Lee had to work so the kids and I just hung out at home. This is the one and only picture I got that day.

On May 4th, we took the long trip back to see the eye doctor. I had been telling the doctors and vision therapist that I thought Bailey's eye sight was worse because she was pulling toys and books really close to her face. The eye dr did not buy my story until she dilated her eyes. She said it was time that Bailey get glasses because without them her eye sight would not continue to develop. Duh... I think we needed them earlier than now and it has affected her development. We received the glasses on May 11 and below she is wearing them for the first time. We had them 2 1/2 weeks before we had to send them back because the lens kept falling out. In that 2 1/2 weeks she started gaining some confidence with cruising and letting go of furniture to transfer from one surface to another. Unfortunately the people (I want to call them something nasty) at the glasses store did not get them back to us for a little over 3 weeks.

May 12
In our big girl car seat

Wyatt in his big boy seat
They may hold the record for being able to sit in their carrier car seat the longest. He was walking and could still sit in it. Crazy!

May 16
First time having a McD's chicken nugget

May 17
I wondered how my plastic containers were falling out of my cabinet. Wyatt decided he would really clean out all the dishes this day. Bailey is like the bottom feeder. She gets everything he tosses out.

May 20
I am so guilty. I was unable to take pictures at Tyler's school play. Lee had the good camera in the car with him at work. He ended up working late so I was left with the bad camera and of course the cell phone camera.

May 24
Need I say more? WYATT!!!!

May 25
Tyler doing the "I am out of school dance". Somehow I don't think he will look as happy when doing the "going back to school dance." I doubt he will dance at all.

May 27
Brianne with her teacher at award's day

May 29
See what I have to deal with. I think boys come here knowing how to work the remote. Tyler has even started taking them to his room so he has one.

Just imagine wax paper rolled out all over the floor with all the ziploc bags pulled out and scattered about, all sprinkled with plastic utensils, intermixed with toys................
I don't have to imagine it. That is my life. Oh, you can sometimes add some tin foil in there.

All that fun ends with a nap in his ever loved nap nanny

May 31
Can anyone tell what is in these boxes? Grandaddy is very acquainted with them. He can tell you all about it. More to come in June....

The Last of April

2011-07-17T14:41:00.006-06:00

On April 12 Lee and I went to Brianne's class program. They did such a good job. It is amazing what they learn now in K4. They are reading and doing some simple math.

The lady on the right is Brianne's teacher, Mrs. Shauer.

We almost did not get to go to her program because of Bailey being sick. She had just started getting sick and by the next morning she was really sick with fever and all. This was Bailey on Friday night 4/15. All she did was sleep. I posted about our hospital stay back in May, but I did not put in pictures so I thought I would post them here.

Bailey in the unit at Children's
She spent Sunday, Monday, and Tuesday morning like this. It was scary to see her sleep so much.

Tuesday after we came back from lunch this is how we found her. Kids get sick very quickly but can bounce back in a blink of an eye.

Wednesday afternoon we made it to a room.

Saturday I came home to get a few more things that I needed till we got out of the hospital. This is what I found. My poor baby had skinned up his face at school.

The Easter bunny had to come see her at the hospital.

I missed Easter with Brianne, Tyler, and Wyatt. I was heartbroken to miss this special day with them. I am sure they did not notice I was gone because Maw and Grandaddy was there with them.
Grandaddy helped little man get to his Easter basket.

Tyler got a double light saber that he had wanted at Walt Disney World. Brianne got some doll she wanted.

They hunted eggs. Maw does not know much about our camera so she did not know how to take closer shots. I was just glad to get pictures.

Birthday Party

2011-07-17T14:10:00.004-06:00

Our little angels wishes to come,
Too early everyone had to say,
Mother and Daddy had to pray,
They would grow and see the day,
Now they are growing-up big and strong,
They wish for you to come along,
Come sing their first birthday song,
We know it's a little late,
Bailey and Wyatt had to wait.
April 9 is the date.

We originally thought we would have B and W's birthday party close to their actual due date, but things got in the way. So in April we had a late birthday party/Easter party. I am glad we waited so that cognitively they were 1 and not 8.5 months like in October.

Ssshhh don't tell anyone but Tyler was nice enough to ride the kids around in a pink jeep. He would not want his friends to see him.

The girls enjoying a hotdog and chips.

Wyatt was not even interested in putting his fingers in the cake. I was not surprised because he won't pick up his own food. He also did not want to put his hands on the jello cake I made for them in October.

Bailey liked squishing it around in her hands. Of course she did not put it near her mouth, and then got upset when she could not get it off her hands.

By the time we opened presents they were tired, and Bailey was overloaded with the stimulus.

Wyatt did muster one attempt at pulling something out of the bag.

Hannah was so sweet to help Bailey play with her kitchen toy.

The kids hunted Easter eggs. Bailey had the right idea. She waited on the concrete and had people bring eggs to her. She hates the grass and won't go near it. It is one of those nice preemie sensory issues.

My beautiful princess
She is a great big sister and a great help to mommy.

Wyatt loves running around in the grass and isn't scared of anything. He did not mind carrying around an egg or two either.

This is the best picture I could get of them near their cake. I should have taken a picture before the party.

We loved seeing everyone at the party. It is always nice when family can get together.

Bye Bye March

2011-07-11T11:23:00.002-06:00

We ended March with time spent outside. The kids love to eat outside. We are hoping for more cool weather but you know how our weather can be. We have very little spring and fall. It would be nice to have 4 seasons.

We did not have many doctor's appointments in March. Bailey had OT every week and vision and physical therapy once a month. Wyatt continued to master and fine tune his walking skills. He definitely is a medical miracle. Unless you lifted Wyatt's shirt or watched him eat, you would never know he was a micro preemie. Both kids have a mouth full of teeth and don't use them often. Bailey eats only 4 ounces of baby food a day and drinks 18-21 ounces of pediasure. Wyatt eats about 8 ounces of baby food and 3 meat sticks a day. He drinks 18-20 ounces of pediasure. He will now gum a cracker. Bailey is crawling and stands holding things. She will cruise furniture but will not let go of furniture yet. When she walks with you it is holding 2 hands.