I think I forgot to write about sissy's opthamologist appt. he was supposed to fit her for glasses but he called us and told us Sis wouldn't be able to see. Her right eye picks up light (sometimes) is what he said. Meaning that it's a brain issue not so much the eye. She did have the stage 4 brain bleed at 1 wk old so that wasn't so hard to believe. But I was certain that she could see.
We called our friends at Delta Gamma and asked them to look at Emily. They are a little more patient and work with all types of vision problems. Lindsay brought in a big light and put a red cover on it and Emily looked right at it. She followed red toys and even grabbed at them. So basically it is a brain issue but she can see. Lindsay said that kids with her issues seem to like the color red. When she gets used to looking at that color we can add other colors one at a time. When there are too many colors at once it kinda confuses her I think. So I think I will probably get her glasses anyways.

Dougie is eating baby food like a champ!! YAY he takes at least 4 jars a day along with his bottles. He's even getting a little fat belly...it's so cute..still no butt.......maybe he'll get that next.

Well Sis seems to be doing pretty good, she's up to being on her c-pap for a 12 hour period. She's tolerating it pretty good. She does get tired near hour 10 but she fights her way through. We are so proud of her!! We talked to the doctor Thursday and the middle of next week he wants to try her on a bi-pap machine. From what I understand it's like what they give people who have sleep apnea. Hopefully she will do good on that and maybe we can get a medical supply company to give us one so she can come home. That would be so amazing for us to have all of our children together at home.

Dougie is doing pretty good with his tiny walker. It's hilarious it's sooo small. I never would have guesses they made them that small. He's cruisin along. I even put the tennis balls on it so he could glide across the carpet better. He's growing like a weed. We're finally up to 18 months clothes. It's amazing when I look back at pictures of how small they once were. I never gave up hope of making it this far with them but at times it was extremely difficult. (to put it mildly)

Tyler is in school 10th grade this year. We will both be so glad when he graduates LOL. So far he likes it. We had to go in and get his schedule changed he wanted P.E. but they gave him home ec. Not happening is what he said.

We've been busy getting ready for the big party. Handed out invites at the hospital. NICU, PICU, TCU, Chaplains and a couple of friends. It's a long drive and we know most people won't come but I wanted them to know we were thinking of them and wanted them to celebrate with us.

Tomorrow is our anniversary, 7 years, doesn't seem right. We have been through more in the past 7 years than most couples face in a lifetime. I figure if we can make it through all this we're in the home stretch. LOL

Well we're still waiting on a vent or for Emily to come off of it all together. She's been doing good on her c-pap tests and they've stretched them to an hour each time. This week she has an over growth of bacteria in her trach, nothing new for her. She always has bacteria in there but once in a while she'll get an overgrowth. No biggie for her.

Dougie got his walker yesterday. Oh my gosh it is so tiny!! He can really get to goin with that thing. Not much else to add this post.....trying to get Tyler ready for school and the babies party planned. Things are going pretty good.

It's the middle of August and I guess Sissy decided she doesn't need the vent after all. The docs. have been coming down off her settings for the past couple of weeks and over the past few days they have been trying her on a c-pap. She's doing absolutely awesome with it. She is still on the vent for now but it's not giving her extra breaths. She only gets the pressure support when she takes a breath, so basically she's running the show. I asked the nurse what the next step was and she said they would probably increase her time on the c-pap and then before too long try her on a trach collar. I'm so proud of her.Dad and I are going down to see her tomorrow. I can't wait!!

I've been working really hard with Dougie to eat baby food and I have kinda just been letting him run the show. Now over the last week I have been making him take at least 15 bites of baby food at least twice a day. Tonight he ate almost the entire jar of baby food. He opened his mouth and took bites like a big boy. Today him and T.T. (big brother) went and got their hair cut together. They both look so handsome!!

Well here we are it's already August. I can't hardly believe it. I thought Sis would have been home for a while by now. No such luck. My friend Treena rode with me today so that I could make the drive down to see Sis. I get so anxious when I'm getting close to her room. I love walking in and seeing her big smile. I usually walk in and say Sissy mommies here. She will grin from ear to ear. I always let the nurses know when I'm coming down. Makes an easy day for them because I do all her trach care and bathe her, get her dressed and now I can even put her in her stander since they've shown me how to use it. She is such a beautiful girl. She absolutely makes my day. Over the last week they have come down on several of her ventilator settings and she's handled it like a champ. The doctor says he might try her with a trach collar before too long. She will still be on oxygen just without the ventilator. That is such good news. But because we've kind of been around that block before we take everything the doctors say with a grain of salt. We always have hope but not to the point that we will be disappointed if it doesn't work.

One of the babies NICU nurses stopped by while we were eating lunch. It is so good to see them and to be able to tell them how things are going. They were their babies too for a long time. People I would consider family. We talked about the progress with both babies and how upset all the NICU nurses were when they heard Sis couldn't come home for a lack of ventilator. Dougie got to give her a hug and of course we had to show her all the things he can do. She was so proud of him. We were so lucky to have all the wonderful nurses that we did in the beginning and even now. They become such a part of our lives. The care they took of our babies means so much to us. They have a special place in my heart and I love them for what they've done for us.

It won't be long and I guess we get to spend 1 more birthday at the hospital. We will take a big cake up so we can spend the day with Sis. Last year her room was full of nurses and doctors (some who came in off work) and family that drove the 2 hours to be with us. It was a special day even though she was so sick. This year will be different she'll be alert and able to have some fun too. Even though it'll be at Glennon we will try and make it special for them both.