Wednesday, October 29, 2008
It's been a while since I posted. K&C are both still sick. Kinnick has been on a really strong antibiotic. She started having diarrhea a few days ago. Today, we stopped the antibiotic and she is being tested for C.diff, rotavirus, and other bacteria. It's possible that the antibiotic killed all of the good bacteria and left the bad ones. She's on a daily probiotic, but that didn't seem to make a difference. We should know more tomorrow when the test results come back. She seems to be handling the diarrhea. She's a little fussy before she poops, but other then that, she's fine. Her lungs sound much better and we're ready to turn the O's down a bit. Carver still has a snotty nose. He blows bubbles out around his cannula all day. We are suctioning him at least 4-5 times a day. His cold doesn't seem to bother him. He just hates the suctioning. On a good note, we were finally approved for synagis shots. This is the shot that we got last year for RSV. It doesn't prevent them from getting RSV, but if they end up getting RSV, it should be less severe. Kinnick ended up getting RSV last year and was only in the hospital 10 days - which isn't too bad according to the doctors. We'll receive the first shot 11/4/08.
Carver's rolling has really helped strengthen his neck muscles. He's holding his head up so much better. His head still tires easily, but just look how good he's holding it up....
We are preparing for Carver's first Cochlear Implant. He is scheduled for 11/12/2008. We cut his hair short so that all of his hair will blend nicely after surgery. He looks so cute!
We're working on Carver's trunk control. He's loving his new exercise. Can you see all of his teeth? He's smiling so big, you can see all 5 of them!
Tuesday, October 21, 2008
Here we go. Winter colds are starting early this year. Kinnick has had no less then 3 colds already. They all seem to migrate right to her lungs. So far, we've been lucky and have not had to admit her to the hospital. We had another very close call last night. I had to bump her to 2 1/2 lt of oxygen just to keep her in the low 90's. This is the most she's been on since last winter. We made it through the night with a lot of suctioning, breathing treatments, and no sleep. I took her to the doctor today and she has an ear infection and lots of junk in her lungs. This is her first ear infection. The doctor gave her an antibiotic shot, some steroids, and an oral antibiotic. She's already feeling better. We have her down to 1 lt of oxygen and she's satting in the upper 90's. She's still coughing up a bunch of junk from her lungs. She won't eat and she wants to be held all of the time. I had them check Carver out while we were there. He's had a stuffy nose and now a runny nose for the past couple of weeks. His is all in his head. His ears are clear (he's never had an ear infection) and his lungs are clear. It's so hard to keep our 3 year old away from the babies toys. Hayden goes to daycare/preschool and brings everything home. He's been coughing for a couple of days. It's also hard for Hayden to remember to cover his mouth when he coughs. We remind him all of the time, but he's 3 and it's just not something he thinks about when he's having fun.
I also wanted to let everyone know that we do think of all of you often. Our lack of phone calls does not mean that we don't care about you. We are just so consumed with the special needs of the twins and the other children in the house. The past 2 years have been very stressful and we're doing everything we can to keep things together. I've had to leave a job that I worked at for nearly 20 years - leaving us dependent on 1 income after purchasing a new home that was a decision based on 2 incomes. Our lives have been changed in a lot of ways over the past 2 years. We're adjusting and things will be fine. Hopefully things will be a little more normal for us over the next 2 years. So, please don't feel like we don't care. We're just exhausted and try to enjoy any downtime that we might come across. I created the blog as a way to communicate consistently with all of our friends and family. I knew we were too busy to update everyone personally and visiting is out of the question until the twins are off technology. Things will and have been improving. Please hang in there. We still love you.
Saturday, October 18, 2008
Kinnick has had the lenses removed from both of her eyes due to extreme ROP. She's trying so hard to see things. So, we're going to replace the missing lenses with glasses. Her right eye will be at +18 and her left eye will be at +10. This should make up the difference for the missing lenses. Both retinas still have fluid under them, so this won't give her 20/20 vision. The hope is that the fluid will continue to go away allowing the retina to attach. It will take about 3 weeks to get the glasses made.
We liked this pair, but didn't like the extra clear piece on the bridge.
This is the pair we decided to get. They will be a size smaller and will be a pale pink color. They should look similar to the one above with the clear piece on the bridge. She didn't seem to mind them on her ears. Hopefully she'll leave them alone and let them do their work. I'm excited to see what difference they make.
Here are a few pictures of Carver's new Pedi Wraps. These are really helping. They hold his legs straight while in a standing position. It takes a lot of the weight off our backs. He's already starting to make an effort to support his weight without the wraps.
I'm finally getting a moment to post. Here is a picture of my daughter Kirsten's car after wrecking it October 3rd. The insurance company totaled the car. This stinks because the car was paid off and only had 64,000 miles. Nobody was hurt in the accident - thanks to air bags and seat belts.
Here is Kirsten with her new car. We couldn't find a good used car for the money we received for Kirsten's car. So, she got a new Nissan Sentra. It's nothing fancy, but was more in our price range. She liked the sporty GT better. I think she'll be happy with her new car in the long run.
Monday, October 6, 2008
Hi Holli. It's good to hear from you. We are using Home Healthcare Connections. Currently, I have Sat, Sun, Mon, and Tuesdays available. We're pretty flexible - all daytime shifts. We would love to have you as our nurse! You can email me anytime at email@example.com.
Saturday, October 4, 2008
Kinnick is still sick. The doctor ordered a CBC and it showed elevated white blood cells (23,000) indicating that she does have some sort of infection. She gets better for about a day and then runs a temp again. It's crazy. She's still on 1 lt of oxygen. Hopefully things will look better this week. We could sure use the sleep. Carver is still a little stuffy, but definitely getting better. He's been on 1/2 lt oxygen.
Kinnick is sitting really good. Carver FINALLY got some leg wraps to help hold his legs straight so that we could get some weight on his legs/hips. They help so much. It was killing our backs to hold his limp body while pushing his knees straight, keep his heels on the ground, and with our 4th hand, hold him up straight. I'm hoping that once we get some weight on his legs, he'll start trying to hold his own weight up.
We finally have a date for Carver's first CI. He is scheduled for surgery 11/12/08. He will have to spend one night in the hospital - St. Francis. They will activate the CI after one month and we'll begin speech therapy. I can't wait to get it started. The audiologist said that Carver's ABR had the flattest response of anyone he has ever seen. They couldn't get a single response at 120 db in either ear. Hopefully the bad test results are just due to a back cochlea.
My home health agency is starting to look for new nurses to cover my Sat, Sun, Mon, and Tues shifts. Hopefully we'll get another good nurse. I'm so tired of training nurses just to have them leave after a couple of months. It's hard on the babies and me.
My daughter had her first car wreck yesterday. She's been driving 3 years, so it was bound to happen some time. She was driving across town with 2 of her brothers. None of them were hurt. They just got minor scrapes and cuts from the seat belts (all were wearing their seat belts thank God) and air bags. The wreck was not her fault, but it did total her car. This stinks because the car was paid for and was supposed to last till she graduated college. The insurance company never wants to give you enough to replace your car with an equal car. So, I'll be looking for a new car over the next week.
Friday, October 3, 2008
I know it's been a while, but still wanted to post a couple of pictures from the Birthday party. We celebrated Kirsten's 19th birthday (9/26), Harrison's 11th birthday (10/2), and Hayden's 3rd birthday (9/21). The celebration was last Sunday. Kirsten's name was misspelled, but she was ok with it. The cake tasted the same regardless of how her name was spelled. Harrison didn't notice the missing color in the Jets helmet. He was just excited to see the helmet on the cake. It was a nice party with just our family. Kinnick and Carver have been sick for the past week and a half. We were asked to have Kinnick admitted to the hospital Tuesday night, but I was able to convince them that she would get better care at home. She's doing better now and getting back to herself. She's still up on her oxygen a bit, but getting better. Carver just has a terrible stuffy nose with drainage. He's starting to feel better, too. He's still up on his oxygen a bit. I thought we would have a better winter - guess I was wrong. So, we will be on lock down again this year.
The birthday kids!
This is just a picture of my girls - Kirsten and Kinnick. My oldest and my youngest. Kirsten was a little sad at the party. Her boyfriend has been in the hospital with stomach problems, so she not looking real chipper.