Tuesday, November 25, 2008
What are we up to? Well, Kinnick is still working on getting used to her new glasses. She does pretty good until she runs out of toys to play with within reaching distance, then she takes her glasses off and plays with them. However, she keeps them on for a few hours at a time. Carver is still working on sitting. He still has a long way to go, but he makes a good effort most of the time.
Carver's incision is healing very nicely. The hematoma is already completely resolved. His hair is starting to grow back. He'll be ready for a hair cut in another 2 weeks. Activation day is set for December 16th. What a great Christmas gift - hearing! We can hardly wait to see his reaction to sound.
Kinnick got her first haircut - complements of Nurse Marci. She wears lots of hats at our house. Kinnick looks like a smaller version of Katie Holmes, now. So cute!
Kinnick is starting to show some interest in crawling. We put her in a crawling position and rock her back and forth. She used to HATE putting her hands on the floor. She's starting to like it. Hopefully we'll have her crawling over the next couple of months.
Both kiddos had to get 3 shots the other day - Hepatitis A, Flu shot, and DTAP. They weren't too happy about the shots, but really didn't have any negative effects after getting them.
Kinnick and Carver will get their second Synagis shots next week. It seems like they just got their shots. They're both doing pretty good right now. Kinnick is sounding a little junky, so hopefully she's not coming down with cold number 4. She needs to grow. She still weights 17 lbs. Carver weights 19 lbs 2 oz. We stuff them until they about split at the seems, but they still don't gain weight. It's crazy.
We're going to celebrate Thanksgiving at home this year with no visitors. Kinnick and Carver will enjoy Gerber 2nd foods sweet potatoes, ham, and applesauce.
I hope everyone has a wonderful Thanksgiving.
Thursday, November 20, 2008
Not much going on here. We have a couple of new nurses starting. Nurse Jane will start December 1st. I can already tell that she is going to be a great addition to our family. I'm excited for her to start. She'll work Mondays and Fridays. Nurse Marci will work Tuesdays, Wednesdays, and Thursdays. We have another nurse starting this weekend. Her name is Maria. She'll work Saturdays and Sundays.
Carver is still recovering from his first CI surgery. What I thought was swelling has turned out to be hematoma (blood pooled between the skull and scalp). My pediatrician wasn't too concerned about the bleeding. I'm worried about it. We see the surgeon tomorrow. I'm hoping this won't slow down activation. The bleeding could take a month or more to go away.
Carver has started looking at the lights during vision therapy. This is a pretty big deal. He's avoided them in the past. This shows that his vision is improving. He has cortical vision loss. With this type of loss, it takes lots and lots of therapy to get working vision. It's not much, but the more we do, the more he will get.
Monday, November 17, 2008
Kinnick sat up all by herself today - from a laying position!!! She has been trying so hard to do this and finally she did it. She sits for long periods of time, but has only been doing it when we put her in a sitting position. Now she can sit or lay whichever she wants. Don't know what this will do to her night feeds.... that will be another story.
I can't remember if I posted letting everyone know that we qualified for over $4,000 per child for equipment. We are ordering new activity/feeding chairs for each of them on Monday. The chairs are nearly $1,500 a piece. They can eat in these chairs or play in these chairs - kinda like the bumbo only better. The rest of the money will be spent on a gait trainer and hopefully a stander for Carver. This is still being discussed with PT. They don't feel like he needs one. I on the other hand REALLY think he needs one.
Saturday, November 15, 2008
Carver is doing much better today - no fever. I can see some bruising now, but really no add'l swelling.
I forgot to mention that we seen our Neurologist again this past Tuesday. We seen his PA the last time we were there. I asked the Neurologist about the diagnosis that we were given for Carver by his PA. After looking at both Kinnick and Carver, he gave me the following diagnosis for each of them. Carver has Spastic Quadripersis CP. I suspected this because I felt like the CP was not isolated to just the right side of his body. What does this mean? Lots of physical therapy. We'll just have to work even harder to get Carver moving. The good thing is that Carver is doing much better sitting. He's still very wobbly, but he's making a better effort. He's also been able to get up on his knees and elbows with no help. So, he's really trying to move. Of course, he's still rolling all over the place. Kinnick has Hypotonia - she's very floppy. She can sit and stand, but she's just really weak. She's been working really hard on getting into a sitting position by herself from a laying position. She'll still need a lot of Physical Therapy, too. Both babies are continuing to make progress, so this is positive. We'll see the Neurologist again in 4 months. Hopefully both babies will be doing something new by then.
Friday, November 14, 2008
Post surgery update.
Carver ran a little higher temp yesterday evening. His temp got up to 101.1. I was a little worried, but it quickly went down with motrin. He slept good. He woke up whimpering a bit around 5:00am, but slept well the rest of the night. When he woke up at 5:00am, I gave him another dose of motrin and he went right back to sleep until 8:00am.
This is a picture of Carver yesterday evening when he was running his 101.1 temp. He looks a little miserable, but didn't complain too much. He's hanging out with his new animal friend that Nurse Marci's Mom gave him when she visited him in the hospital. Thank you Anita! Carver loves his new friend.
Here's Carver first thing this morning. He looks a little more swollen, but woke up in a good mood.
This is a picture of carver from this afternoon. You can see a little bit of the swelling in front of his ear, but there really isn't much to see.
Here's another picture from this afternoon. You can see a little swelling behind the ear and down the neck - again, not much to see.
Another close up picture from this afternoon. You can see his ear sticking out a bit from the swelling, but overall I think he looks pretty good. We haven't seen any blood from the nose, ear, or really anywhere other then a bit that you can see under the tape.
He's had a little bit of a cough and he is gagging more then usual, so there may be a little drainage going on. He still has a slight temperature 99.0. I'm hoping the temp will be gone by tomorrow. I called the doctor today to report the 101.1 temp and he still wasn't concerned. He said this is typically with Chronic Lung babies post surgery. The intubation causes the throat and lungs to get a little junky which causes the fever. He's on an antibiotic, so the doctor isn't too concerned. He'll be on the antibiotic through the weekend for sure and up to 10 days if necessary.
1 day closer to activation!
Thursday, November 13, 2008
We stayed one night at the hospital. The doctor was in to see Carver at 9:00am to remove his bandage. We were home by noon :o)
Here is a picture of carver right after the bandage was removed. The incision wasn't nearly as big as I thought it would be. It actually looks pretty good.
Carver is still running a low grade temp (99.0). The doctor insists it's nothing to worry about. He's been a little fussy today, but overall he's had a pretty good day. He's careful not to roll over onto his left ear. It's a little swollen and sore. We'll see the doctor next Friday to have the tape removed.
The day we've been waiting a LONG time for....
Today Carver got his first Cochlear Implant - Left ear.
This is the Ear they are going to Implant first - can you see the black "X"?
This is Carver a few hours after surgery.
The surgery took about 2 hours including prep time. The doctor was pleased with how well the surgery went. He said that Carver had a normal mastoid anatomy. However, he noted that he had a poorly developed round window niche and membrane. He said that he sees this often in small children with profound hearing loss. I'm not sure if this is related to the extreme prematurity or what caused this.
Carver cried and whimpered the first 12 hours after surgery. He got one dose of morphine (this probably wasn't necessary), tylenol, and motrin. He woke up several times in the night crying for just a few seconds. By morning, he acted like he felt much better. He started running a low grade temp (99.0) about 4 hours after surgery. The doctor wasn't concerned with the temp. Carver's acting like his head is heavy or that he is dizzy. I understand that their can be some blurred vision and dizziness the first few days after surgery. So far, no complications. We're looking forward to activation day - in about a month if he heals well.
Our first experience with St. Francis Hospital was very good. The staff was all very nice and made our stay comfortable.
Thanks for all of your thoughts and prayers!
Tuesday, November 11, 2008
Tomorrow is the big day! Carver gets his first Cochlear implant. We have to be at the hospital at 6:30 am. Nurse Marci has agreed to come to work early to take care of Kinnick and Aunt Tonya is going to spend the night tonight. She's going to stay until Nurse Marci arrives and then she'll take big brother Hayden to Preschool. What would I do without such wonderful help! We are expecting at least one over night stay at the hospital. We're going to St. Francis Hospital this time. We haven't used this hospital, so I'm hoping it's a good experience.
I'll post before and after pictures as soon as I can. Please pray that everything goes well and that Carver is on his road to the hearing world!
Monday, November 3, 2008
Kinnick got her new glasses. She's not sure what to think of them. We're working on getting used to them. She keeps running her fingers down her nose and then tries to push the glasses up her nose. She thinks that her cannula is on top of her nose.
Kinnick's lenses are so magnified that it makes her eyes look huge. The right eye (+18) is magnified more then the left eye (+10). Her glasses are a light pink, but it's hard to see that in the pictures.
A few Halloween pictures...
Kinnick was an Iowa Hawkeye cheerleader and Carver was an Iowa Hawkeye football player for Halloween. They didn't get to go out, but enjoyed passing out candy with mommy and nurse Marci.
Big Brother Hayden in his homemade pre-school costume - a giraffe. He was an Iowa Hawkeye football player for evening. Aunt Tonya and Uncle Bill took Hayden out trick-or-treating. He got way too much candy!