Tuesday, December 30, 2008
The drugs have kicked in!! Kinnick is eating again and acting normal. She's still coughing up a bit of junk, but less and less by the hour.
The pantyhose/bandanna solution that we've been using to keep the CI on Carver worked really good today. He was even able to eat with his CI on today. We want him to have it on every waking hour. He's on his last program and doing fine. Still no big response, but he is tolerating it without problem.
Bob and I are going to take a little time away next week. I start my part time job Monday, January 12th - as long as I pass my drug test. Passing a drug test when you're a micro-preemie mom shouldn't be a problem - unless you're too tired and take your kid's drugs. Other then that, there really isn't anything that exciting going on in our home.
Tomorrow is New Year's Eve. Wow, another year is almost gone. Time just goes too fast. I think that the older we get, the faster time goes.
Monday, December 29, 2008
There's not much going on right now. We're working our way through Carver's program settings on his CI. He's ready for the last setting before we go in for new settings (mappings). So far, we haven't seen anything exciting. The settings are set pretty low, so it's not really expected that we'll see much, yet. We're just slowly getting him used to sound. We don't want to overwhelm him or scare him. The hardest part is keeping the darn magnet on his head. The bandanna helps. We've even tried putting pantyhose on his head (like a little gangster hat). The pantyhose helps even more then the bandanna. I'll have to post some pics - they're quite funny. If I put both the pantyhose and bandanna on at the same time, this works even better. The downfall is that his head gets hot and he gets irritated. My pilot caps finally shipped today. I ordered them on the 20th. The holiday really slowed my order down. I'm hoping the pilot caps are the answer.
Kinnick is sick AGAIN. We're still able to manage her at home. She's refusing to eat or drink anything (thank God for the Mic-key button). This has gone on for about 2 weeks. She's been coughing up some nasty green slime and white foam. She hasn't had a temp and her O2 sats look good, so we didn't take her to the doctor until today. They couldn't find anything wrong with her except her usual crackles in her lungs (a little more then normal, but not much), a snotty nose, and a sore throat. They went ahead and treated her for a possible sinus infection and pneumonia. Hopefully the drug will knock whatever is going on and she'll start eating again. Anytime she gains a little weight, she gets sick and loses weight. Grrrrr.
K&C will get their 3rd synagis shots on Wednesday. I can't believe that we've almost made it to January without being admitted to the hospital. We attribute this to having such good nurses. They are all over keeping K&C's lungs clear. I know I say this all of the time, but we are so fortunate to have such good nurses. They are fabulous! We love them and I know Kinnick and Carver love them. Thanks to everyone who prayed for good nurses. We never underestimate the power of prayer. God has really taken care of us.
Friday, December 26, 2008
Oh, what a fun Christmas...
What could this be?
I don't know, but I got a big one, too!
I like my new little guy. He's pretty giggly.
This one is going to help me learn to balance myself.
Did I tell you how much I like my new Elmo? These coins aren't bad tasting, either.
This is my new friend. He has a CI, too.
I really like pushing the button on this new toy!
This guy loves it when I punch him!
I figured out what was in the big package. Every girl needs a good purse!
Saturday, December 20, 2008
Ok, so we are learning as we go. It appears to be impossible to keep Carver's CI on. He's constantly rubbing the back of his head and knocking it off. So, after talking to another CI mom (Jenny), she recommended a pilot cap. I've ordered one, but until we get it, Carver is wearing a bandanna. He actually looks pretty cute with the bandanna on his head. Now, it is staying on for longer periods of time. He still knocks/rubs it off, but 1/2 the time it adjusts itself back into place.
Friday, December 19, 2008
It was a success! Carver was activated today and we got a consistent response. He cried whenever they turned the volume up. He would stop crying when they turned it back down or off. So, we are definitely stimulating the auditory nerve. Now his brain just has to figure out what to do with sound and how to process the sound.
Thursday, December 18, 2008
Today Kinnick got on her knees and hands all by herself. She quickly shifted to her side and rolled to her back, but she did manage to get up all by herself. Of course, I missed it. Nurse Marci has been working with Kinnick on hands and knees for a few weeks. Kinnick learns quickly when she wants to do something. It's so exciting to see her continue to make advancements. Just a month ago she was working on getting to a sitting position by herself. She has completely mastered that task. Now she can sit up and lay down by herself within seconds. Hopefully she'll be trying to crawl over the next month. I'm just so thankful to have such determined nurses. They work so hard with Kinnick and Carver.
I broke down and bought a baby walker today for Kinnick. She's struggling with moving her legs right/left. It doesn't seem to make sense to her. The treadmill training that we will start next month is supposed to reinforce this motion. However, it is only 10 minutes once a week. We're looking at gait trainers. This is more of a medical walker. The gait trainer that we are looking at has a harness system that is similar to the harness system that will be used for treadmill training. It is made by Kaye Products. Hopefully we'll get one ordered after the first of the year. I need my PT's help in ordering the correct size. I'm probably making a mistake buying the baby walker, but I thought it might help Kinnick figure out the whole walking thing. It will give her something to work on while we wait on treadmill training and her new gait trainer.
Carver has also been getting on his knees. He can't get on his hands, but he can get on his elbows. He just doesn't know what to do after he gets up. He gets so excited that he just pushes and pushes until he falls flat. He's really showing signs that he can see things. I can't wait to see what he will do once he can hear. We're still scheduled to activate Carver's CI tomorrow at 11:00. I'm crossing my fingers that the weather is good and he gets his first shot at hearing tomorrow.
Wednesday, December 17, 2008
I heard back from Koch today. They offered me my old job part time. I'll start the first of the year. They've been so good to me. I'm looking forward to getting out of the house and feeling a little more normal, but still being home enough to feel connected to everything that's going on with Kinnick and Carver.
Tuesday, December 16, 2008
Carver's activation was cancelled until Friday due to bad roads. What a bummer. I know it's only a couple of days, but I've been living for today. I think the roads are supposed to be bad again on Thursday, so hopefully it won't be cancelled again. The rep that is going to help with his initial mapping is coming from Oklahoma.
Monday, December 15, 2008
Tomorrow is the BIG day. Carver will get his first CI "turned on". We can hardly wait. We have to be there at 11:00. It sounds like it's going to be a crappy day to be out and about. Hopefully the roads will be good. I'll post pictures of the big event tomorrow.
Saturday, December 13, 2008
Our new Rifton chairs have arrived. They are a little big, but we had to order to allow for growth. Kinnick sits pretty good in her chair.
Carver needs a little extra support to sit in his chair. The chairs are great for play, but not what we expected for feeding. The chairs are too short and too heavy to carry back-n-forth between the great room and kitchen. I'm going to try to order locking wheels to see if they will raise the chairs enough to allow a decent height for feeding and allow us to move them without hurting our backs.
Other good news... my PT is back from vacation and agrees that we should order the stander for Carver. She also agreed to order the gait trainer for Kinnick. So, hopefully we'll have something ordered in the next couple of weeks.
My new weekday nurse is doing great. She's experienced with developmentally delayed children. She's going to make a great addition to the team. I'm already seeing some improvements with Carver's standing. Between her and Marci, I think we're going to see some great improvements real soon. Her and Marci seem to have the same drive and determination. We are so fortunate to get 2 really great nurses. This will make going back to work part time so much easier. I haven't heard anything since my interviews last Wednesday. However, they needed to get some questions answered about part time. The job I interviewed for is a new role. They haven't had anyone in the role part time. Hopefully I'll hear something the first part of the week. I was planning to go back to work January 1st. The boss said that she was going to be very flexible with the hours. I would need to work at least 20 hrs a week and no more then 32 hrs a week. I can work 8-12 M-F. If I have a morning appt, I can work 1-5 or 11-2 or whatever I needed to work to get my 4 hrs. If I have to go to MI for eye surgery, I could work a couple of 8 hr days and take a couple of days off to go to MI. It all sounds too good to be true.
Friday, December 12, 2008
Friday, December 5, 2008
Kinnick and Carver got their 2nd synagis shots on Wednesday. They were less then thrilled. They are big enough now that it takes 2 shots - 1 in each leg. Kinnick FINALLY gained some weight. She now weights 17 lb 10 oz. That is a 10 oz gain. Carver also gained some weight. He is now 20 lbs even!! That is a 14 oz gain. I have no idea what we did different this month.
My new weekday nurse is turning out to be really good. Good enough that I have decided to try going back to work part time. This will still allow me to go to appointments and will allow me to still be involved in K&C's daily needs. I have some interviews on Wednesday, so I hope to hear more by the end of next week.
Kinnick is sitting up more and more by herself. I thinks she's got it pretty well mastered. We're still working on trying to get her to crawl - we have a long way to go. Carver hasn't really made any progress. We're still working on sitting.
Kinnick is screaming so I need to run. I just wanted to put out a quick update. I'll try to update more soon.