Sunday, August 31, 2008
Kinnick still has her cold. It hasn't gotten any worse, but it's still hanging in there. She finished the last of her antibiotic. I'm hoping it doesn't get worse, now. She's still getting breathing treatments every 4 hours plus her usual breathing treatments. She doesn't seem to mind the breathing treatments - she even tries to help.
We are trying to teach Kinnick to take steps. We put a short box (couple inches tall) in front of her and let her step up. She's finally catching on. She tries to climb up us, now. You can tell that she doesn't have a lot of trunk strength, but she's trying hard.
Carver and Kinnick both have 3 teeth. They both have 2 on bottom and 1 on top. Carver is still pretty cranky. I think he still trying to get his 4th tooth. Kinnick's 4th tooth looks like it could come in any day, but it doesn't seem to bother her. She has a high tolerance for pain. I think it's because of all of the pain she has gone through.
Carver is still eating good for us - when he leaves his hands out of his mouth. He is very self focussed. His teeth are bothering him and that is all he can think about. I think it's because he can't see or hear. Anything that is going on with his body seems to really keep him preoccupied. He even throws a fit when he poops. It's crazy.
I got a denial from the insurance company for the cochlear implants. So, this has slowed things down. I guess this is pretty typical. They want multiple pieces of support to show that he is deaf. I thought the ENT sent the info, but apparently not enough info. They're sending more next week. What a frustrating process. In the mean time, Carver falls further and further behind. Since this has pushed us out at least another month, I went ahead and tried Carver on 1/16 lt of oxygen during the day. He's doing great. If he continues to do well, I'm going to change him to 1/16 lt at night. I'll wait 2 weeks. When we were in MI, the nurses took Carver completely off oxygen sometime in the early hours of the morning. He was satting 100 when I got there. I was a little surprised since there was not an order to reduce the O2. The order showed that he was on home continuous O2. However, it was nice to see him doing so well without his oxygen. I still have problems at night where he quits breathing for a few seconds at a time. Some nights are worse then others. I know the oxygen won't make a difference, but it scares me to ever quit using the monitor. Luckly, we now own the monitors. After so many months of rental, the insurance company buys the monitors.
I think Carver has been attempting to see things the last few days. If he's laying on his stomach and I pick him up, he turns his head and looks as if he's trying to see who picked him up. I've even caught him peaking at the lights during his vision therapy. He doesn't look long, but he does take a quick peak.
That's it for now. Hope you all have a good holiday!
Wednesday, August 27, 2008
We're already back! This was our fastest trip, yet!
We arrived at WBH in Royal Oak around 3pm yesterday and we were home in Wichita by 4pm today. Both kiddos had their EUAs (even Kinnick with her cold). We had super nurses and doctors. I can never say enough good stuff about WBH. The staff is unreal and the hospital feels like a 4 star hotel. I took a friend with me, so there was always help and someone to visit with. This makes the stay so much nicer. She's a great person and a joy to be around.
We didn't get any really good or really bad news. I'll start with Carver. His right eye looks great. The retina is attached with minimal scar tissue. His left eye is starting to develop a cataract. It's still very small, but it will eventually cause him to need his lens removed from this eye. The fluid under this retina has reduced significantly. This is positive. We are hoping the fluid is gone and the retina has a chance to attach before we have to remove his lens. If we have to remove the lens before this happens, we run into a bunch of eye pressure issues and possible cornea issues. I talked to the doctor about him avoiding looking at anything. His right eye is so good, but he's not using it. He doesn't appear to be processing sight in this eye or the other eye. She said that this does happen with some kids with severe ROP. Some will eventually start processing while others do not. This could be a neurological problem related to his grade 4 IVH with hydrocephalus - only time will tell. She thinks it could also be related to his limited sensory inputs (no hearing or sight). She thinks it is possible that his processing will improve when he gets his Cochlear implants. Carver will need to go back to MI to be seen again in 6 months.
Kinnick's eyes have not changed since her last visit. They are not better, nor are they any worse. She still has a small amount of fluid under both of her retinas. We are hoping the fluid will go away over time. If the fluid starts to build, we will run into the issues that I mentioned above with Carver's left eye. Right now, the pressure in her eyes is normal. I talked to the doctor about the light sensitivity that Kinnick is experiencing. She said that she will always be more sensitive to lights. This is because of the removal of part of the iris. One of the functions of the iris is to contract and retract with lights to help control the amount of light that is being let into the eye. Since part of the iris is removed, the pupil is more exposed, so you get a reaction that is similar to having your eyes dilated. This stinks! She's writing a note to my eye doctor to get glasses or contacts (with sun glasses). Kinnick has very poor vision - shadows and light perception. However, with lenses and a lot of therapy, it is still possible to see a lot more then most people would expect. The retina is attached to the optic nerve which is attached to the brain and we all know how the brain can rewire in these little ones. Kinnick really works with the little vision that she has - watching her, you wouldn't even know that she doesn't see well - unless you pay a lot of attention to her 3rd and 4th eyes (her hands). Kinnick will need to go back to MI to be seen again in 6 months.
It was a short visit, but we did get time to squeeze in a quick visit with our preemie mom friend, Stacy (Conner's mom). She came to the hospital to visit Kinnick and Carver. It's so nice to have friends that can relate to all of our issues. I miss Stacy, David, and little Conner. I wish we lived closer.
Thank you for all of your continued prayers! They mean a lot to us.
Monday, August 25, 2008
Just a quick note. We are leaving for MI tomorrow morning at 10:00 am. The doctor said to go ahead and send Kinnick. I hope they're able to sedate her. She's still pretty junky. She's back to her 1/8 lt oxygen, but still sounds bad.
I won't have my computer, so I'll post when we return.
Saturday, August 23, 2008
Today, Carver ate soooo good. He is eating everything that Kinnick is eating with the exception of meat. We haven't pushed that one, yet. But, it won't be long. Carver is also rolling from stomach to back now (he was already rolling back to stomach). When he wants to get somewhere he just rolls till he gets there.
Kinnick has caught a cold. She's up a bit on her O's. She sounds terrible. We're hoping she's better by Monday. Otherwise, the trip to MI will have to be rescheduled. Anytime her chest sounds bad, they won't sedate her. We try so hard to keep the kids healthy. We have a family of 9, so it's nearly impossible to keep the house free of germs. We don't take the kids anywhere except to the doctors office. We rarely even take walks (could probably count the number on 1 hand). It's too bright outside for their eyes and it seems to really bother them. Hopefully Carver won't catch the cold. I have it and it's miserable - I caught it from Kinnick. I rarely catch anything.
Friday, August 15, 2008
Thursday, August 14, 2008
Just a couple of updates...
I met our new Case Manager today. We lost our Case Manager when Kidscreen dissolved with the new TA Waiver. This is our Medicaid Case Manager. I was a little nervous about getting a new Case Manager, but she was fabulous. She's already mentioned a lot of good things that she can help us with in the future. I'm excited to see everything she has to offer. She even wants to go to our Doctor appt's with us. She used to be an NICU nurse at Wesley Hospital where Kinnick and Carver spent 5 months of their 7 month NICU stay. She's been doing Case Management for the past 15 years and seems to be very knowledgeable. We're excited to have her on board.
The other update is around our Pulmonologist appt that we had today. She wants to avoid any changes with oxygen until after eye surgery and cochlear implant surgery. Both of these surgeries are within the next month (hoping the cochlear is within a month), so this shouldn't slow us down too much.
Oh ... one more thing. Carver is eating good for us. We've only G-tube fed him 1 day feed in the last 3 days. We're crossing our fingers that he continues improving.
Tuesday, August 12, 2008
Ok, ok, ok..... I guess I better post :o). I don't like disappointing people that visit our blog.
It's been a really busy couple of weeks. I got my 15 year old enrolled in High School, my 11 year old enrolled in 5th Grade, and my 19 year old enrolled in college (and paid for).
We've finalized most of the plans for our trip back to Detroit for more ROP surgery. We are getting another medical flight and approval for an overnight stay the night before surgery. I've also gotten my approval for lodging and food. All of this helps a lot! I'm taking Kinnick's "best friend" with us just in case we get sent to the hotel with the babies for a couple of days.
We were approved to keep our nursing and our medicaid card. I'm pretty sure we'll continue to qualify at least until the babies are off G-tube feeds and/or oxygen.
Kinnick and Carver are both doing fabulous on 1/8 lt of oxygen day and night. They're ready to try 1/16 lt during the day. We see our Pulmonologist on Thursday, so I'm going to wait and see what she says. Cold season is just around the corner, so I'm not sure how aggressive she wants us to be. In addition, both are getting ready for possible eye surgery and Carver is getting ready for his Cochlear implants.
Kinnick's feeds have been going really good. I still need to find a way to get another 8-12 oz of fluids in her during the day. Until then, we have to G-tube feed her at night. Carver is eating really good for 1 of my nurses. So, with her out the rest of the week, we're going to see if we can get him to do the same for me and the other nurses. She was able to feed him all of his feeds today during the day. So, 5 oz of food/drink for all 3 meals. I still have to G-tube another 8-12 oz of fluid at night. So, definitely making progress.
Kinnick is prop sitting really good. Carver is doing pretty good, too. He still likes to flop his head around. Kinnick is playing a LOT in her exersaucer. She stands really good and turns in circles. She doesn't see well, but seems to find all of the toys and plays with them. Carver struggles in the exersaucer due to the floppy head. However, he seems to like the jumperoo. He tries to stand in it.
Kinnick still doesn't like laying on her stomach. So, no crawling in site. Carver loves being on his stomach. He's starting to really hold the majority of his upper body weight with his left arm. If it wasn't for his bum right arm, he would be crawling. He doesn't have any problem getting on his knees. He just struggles getting his upper body off the ground with 1 arm. If we support his chest for him, he does pretty good - even rocks.
Oh... Carver got his first tooth today! Finally! I was starting to wonder if he would ever get any teeth. He's 16 mth old. Kinnick has 2 teeth on the bottom. She's had them forever, but no signs of any new teeth. Kinnick's teeth are yellow. I talked to my pediatrician about the color and he says that it is just a sticky coating that will come off when she is able to have them cleaned at the Dentist office. I'm not sure what color Carver's tooth is going to be.
Sorry it has been so long since I posted. It just seems like a lot has been going on - time gets away from me. I've also discovered craigslist.org, so I've been selling stuff that the babies no longer need. I made $675 last week just cleaning house. I'm addicted now.
Saturday, August 2, 2008
Another day at our neighborhood pool doing OT/PT.
Mommy and Daddy with Kinnick and Carver. Isn't it funny how Kinnick looks like Mommy and Carver looks like Daddy?
Shana and Daddy with Kinnick and Carver. Shana is/was our OT. Today was her last day with Rainbows. We are sad to see her go.
Kinnick ready to go home for a nap.
Carver with Nurse Marci - He's pooped!
Carver having fun with Daddy.
Kinnick playing with toys in the water.
Kinnick getting used to the water.
Shana (OT) and Kinnick.
Kinnick slowly entering the pool. The water was cold today.
Mommy and Carver getting used to the water.
Kinnick with Pam and Daddy with Carver. Pam is our PT. We really like her. Kinnick made it through the whole class without crying. Kinnick still struggles with stranger anxiety. I think she's finally "ok" with Pam.
Daddy with Carver. Every time Daddy dipped Carver, bubbles would come up Carver's shorts. Carver thought it was funny.