Wednesday, October 28, 2009
Here's my little walker....
Here's the little climber....
You know your child is too big for their baby swing when they can climb into it, close the tray, and start swinging without help.
Carver got another toy from the Deaf/Blind... guess who we found playing with it? It lights up and plays music when you put the shapes in the bucket. Kinnick prefers to play without the shape sorter lid.
And... now she is learning to go up/down the stairs.
Monday, October 26, 2009
Carver got his Right Ear (CI) activated today. It was GREAT! We had a much better response with this ear then we did the other. It was VERY obvious that he could hear when they turned him on. It will be some time before the brain understands what the new CI is hearing. However, we are told that it won't take as long as the first ear. This makes me even more excited to see what's to come for Carver's hearing.
Kinnick appears to have yet another UTI. The UTI's are coming way too frequently. I'm starting to think that she has some Kidney problems. We started giving her Cranberry Juice. I'm hoping that by adding this to her diet that maybe we can get the UTI's under control. In the meantime, she'll have to see the doctor tomorrow and I'm sure we'll start doing some testing. We really need to get to the bottom of what's causing the infections.
Sunday, October 25, 2009
Saturday, October 24, 2009
Ok, I'm in disbelief.... Kinnick has been walking, walking, walking since I posted. She doesn't want to stop. She just keeps going. She has been walking between 2 people for quite a while, but all of a sudden she has just taken off. She's all over the house. It's crazy! I love it!!
Friday, October 23, 2009
It's been a busy week. Next week will be another busy week. Carver gets his second ear activated on Monday. On Tuesday, Carver will have another sleep study. K&C have therapy sessions Wednesday and Thursday.
Yesterday, K&C seen their Dentist - she's the nicest lady. Neither of them have cavities, so they were allowed to join the "No Sugar Bugs Club" and got their names on the wall. Kinnick is missing 2 teeth (the 2 next to her eye teeth - 1 on each side). The Doctor said that the permanent teeth are also missing. My Mom was missing these 2 teeth, so was my older sister, and my older sister's first son. Stinks, because eventually she'll have to get 2 fake teeth to fill in the gaps. Right now, she has the funniest smile - gaps between every tooth. The Doctor said that it might not be real noticeable because she has such a small mouth. However, I remember how self conscious my sister was, so I want to get them fixed as soon as it makes sense to fix them.
I bought some PattiBobs for Kinnick's shoes. They are shoe inserts with really good support - better then the support they get from baby shoes. She seems to be more "stable" in a standing position, now. In fact, today she was letting loose of the wall, cabinets, and etc. and just taking off walking. She would just head in the direction of my voice. I'm so proud of her.
I'm excited to see how Carver responds to his new ear and the ability to localize sound. It's going to be a whole new world for him. I'm also excited to see if it makes a difference for him when it comes to balance. His balance is just so off. He's been trying really hard to sit from a laying down position, but just can't seem to figure it out. His tone is holding him back. Anytime he tries to sit up, I try to rush over and show him how to get to a sitting position. He gets a really big smile on his face once he is sitting. I know he still has a long way to go, but he's trying.
Wednesday, October 21, 2009
We're home. It was a Looong night. We got home around 11:30 today. Kinnick made it through the night without pulling out the PH probe. The cable and box attached to the PH probe was only about 2 1/2 feet long. They want you to do everything that you do in a "normal" day. HA! First of all, you can't even get food by 2pm. Luckly, I brought my own and was able to feed her shortly after 2pm. So, she had already missed one meal. They druged her for the scope, so she didn't feel well. Therefore, she wasn't interested in eating or drinking. She just wanted to cry and sleep. She couldn't get up and move around because she had a box attached that gave her 2 1/2 feet of room to move around - oh, the 2 1/2 feet starts at her nose, so really, by the time it hits the ground, you have even less room. She couldn't get down to play because I wasn't about to let her scoot across a hospital room floor with her hands. So, I wouldn't say that the test represented a "normal" day. I was able to see the PH levels at all times. It was very clear that she was refluxing bad when eating. Her levels dropped in the 3's. I was told that any level under 4 was bad. I'm not sure what this will mean. I asked her doctor what we would do if the levels came back bad (before the test started) and she said that we would have to re-do the Fundo. I'm not ready to re-do the Fundo. The surgery is horrible and she didn't handle it well the last time. Not to mention, she had to stay in the hospital for a week. We should have the results within a few days. They also took some mucus swabs from her lungs and washed the lungs with saline. The saline was suctioned back out and sent to the lab with the mucus swabs for testing. This should tell us if she is aspirating - which is highly likely based on what the doctor seen. While this will give us the answer to why Kinnick keeps getting lung infections, I'm not excited to hear what the treatment plan will be.
More later. I'm exhausted.
Monday, October 19, 2009
Today, Kinnick and Carver had swallow tests done. Neither appeared to be aspirating while eating/drinking. Of course, the test is a moment in time. Kinnick never gagged at all while eating today. A lot of days, she'll gag and vomit. Carver fell asleep while waiting on Kinnick's test to complete and then he didn't want to eat - he just cried. He ate some and it was obvious that he was delaying swallowing - leaving some food at the back of his throat. This will put him at risk of aspirating.
Tomorrow, Kinnick goes in for the 24 hr PH probe study, the lung swab, and the Fundo check. I'm not looking forward to this at all. She will be on the Ped's floor with all of the sick kids. I don't know why they would put healthy people on a floor with a bunch of sick kids - it's crazy. Speaking of sick kids, Carver was running a fever tonight. Always something...
Ok, some good news...
Today, I received another notice from Cobra. They have changed their minds and are giving me the 11 month insurance extension that I requested - based on Disability!! I didn't expect this at all. I had to call to confirm since I received a denial just last week. I was thrilled to say the least.
More good news...
We received approval for all of the equipment money that we requested for Kinnick and Carver through the MR/DD waiver. Carver is getting the full $2,500 for a Pony Gait Trainer and Kinnick is getting over $2,300 for all of the equipment that we requested for her. Hopefully everything will be ordered over the next couple of weeks.
Wednesday, October 14, 2009
Well, the battle with keeping Cobra has come to an end. I got my final denial letter. They are using the original date of disability to deny the extension. I knew there was a possibility that the timing of the disability would cause them to get denied - and it did. So, this just means that we will have to move to Bob's insurance - PPK. His insurance isn't as good as the BCBS. However, we are lucky to have insurance, so I really shouldn't complain.
On a fun note, Kinnick and Carver tried their costumes on and we captured a million pictures. Unfortunately, they wouldn't cooperate so that we could get a good picture.
Tuesday, October 13, 2009
So, we have a date that the Project Director (Kat) of the National Consortium on Deaf-Blindness is going to meet with Carver's team of therapists to discuss a communication/language plan for Carver. We are all going to meet November 19th.
Purpose of Meeting:
1. To collect critical information from assessments to determine how vision, current hearing, fine and gross motor and current cognitive development impact communication, auditory perception, prelinguistic communication, receptive and expressive communication (What of his skills might be used to facilitate communication/language; what needs might need adaptation and accommodations.) with a child who has a significant vision loss and CIs. (Team members will bring summaries of most current assessments to discuss potential impact on communication).
2. To plan as an interdisciplinary team to develop a Communication Map to determine what supports might be needed to aid auditory perceptual development.
3. To review "Evidence-Based" practices in Cochlear Implants and Routine-Based Intervention (a best practice in early childhood) and assist the family to use techniques to embed multiple skills across routines.
4. To share critical information so that all members of the team and Kathy can all use similar intervention techniques for Carver.
Kat has worked with over 100 kids like Carver. I'm excited to get everyone together to learn from Kat. Hopefully, we'll walk away with a great plan for Carver. I've been really stressed over his progress and have felt like we don't really have a plan.
Saturday, October 10, 2009
Did I mention how much I love Carver's new chair?
This morning, I was able to put him in his chair while Kinnick had breakfast. He was able to look at some visual stimuli. What a great chair. He just sits up so good in it.
Kinnick loves Carver's new toys. She knows that Carver's bells are normally on his tray. So, she scoots over and pulls herself up to the stander tray and then presses the button.
Friday, October 9, 2009
Carver's right ear cochlear implant activation has been scheduled for October 26th. He still has a lump above his ear. The doctor says that it is a bruised muscle or a swollen muscle. He didn't have anything like this the last time. It seems to be taking a little longer for this lump to heal and go away. Most of the subdural hematoma is gone. The incision is quickly healing and his hair is already growing back. I'm so glad to have these last 3 surgeries behind us (T&A removal, lens removal due to cataract, and his second CI).
We still have a few things scheduled for this month - swallow studies for both K&C, Kinnick's PH probe study with the lung swab and fundo check, and Carver's sleep study.
We did get some good news on Carver's speach therapy as it relates to his CI's. I signed Carver up for a study that is funded via a Grant through Western Oregon University. I signed him up for the study shortly after he got his first CI. They are studying the benefits/results that a blind/deaf child gets from a CI. They send someone out to evaluate him as he progresses. Each time they come out, they provide tons of feedback (free therapy) to get the most out of his CI's. Not only do they give me free feedback, they pay me for my feedback. The last visit paid $200.00. Anyway, the Project Director is going to come to our home to work with all of Carver's therapists (VI, OT, PT, SLP, Early Childhood Development Teacher). Together, they are going to do a comprehensive evaluation based on Carver's strengths and weaknesses to come up with a therapy plan that will help us get the most out of Carver's CI's. This will include things that can be built into our daily routines that will teach Carver to listen and show us that he is processes what he hears. Carver isn't like many kids that get CI's. Most kids can use their vision to learn, or their hands. Carver is blind, so vision doesn't help. He has CP that effects his fine and gross motor skills, so it's difficult for him to do much more then a 3-6 month old with his hands. It's been a challenge to say the least. The Project Director has worked with kids like Carver for a very long time, so she's familiar with things that work with Carver's limitations. We're hoping to meet around the 20th of November. I'm already excited about getting the final plans.
Thursday, October 8, 2009
Carver got his new "Childrite" seat today. It's like a larger version of the "Bumbo" seat. I'm surprised how well he is able to sit in it. It doesn't prevent his back from curving, so I don't think it's ideal for long periods of time. We have a "Rifton" chair and "TriStander" for proper sitting/standing. This is just nice for floor time, so he can participate in circle time or fun floor activities with everyone else. It's also nice for therapy (hearing/vision). The company at www.childrite.com is offering a $50.00 discount right now on these chairs. They normally cost $200.00, but you can get them for $150.00 right now. Carver is about 32 1/2 in tall and weights 22 lbs - just for an idea of his size.
He looks so big in his new chair.
Carver got his bandages taken off yesterday. Everything seems to be healing like it should. He does have some subdural hematoma and some swelling, but that should all be gone within a couple more weeks. We're trying to schedule his activation day the 3rd week of November.
Kinnick is feeling better and eating better. She still sounds like she has a rattle, but then again, when doesn't she? Her stomach is still gassy and big.
Saturday, October 3, 2009
Carver is doing good. Even smiling a lot more. He has had some sad moments, but overall he's acting pretty normal. In fact, last night I didn't even put his O2 on him. I was afraid that the tubing would rub on the incision. He's on a monitor at night, so I figured - no harm. If the alarm goes off, I'll put the O2 on him. No alarms ALL night.
A happy moment.
We received another toy from the Deaf/Blind organization. This one rewards the child with a blinking light when they put the shape in correctly. Once they have put all of the shapes in correctly, the toy plays music.
How is Kinnick doing? Well, not so good. She has caught another cold. She hasn't been eating well and she is unable to hold her sats during the day. Today, I have her on 1 lt of O2 and at times, we're having a hard time staying in the 90's. So, more breathing treatments and hoping and praying that we stay out of the hospital.
Thursday, October 1, 2009
Carver slept most of yesterday and all night. He whimpered around 5:00am, so we got up and gave him some Tylenol. He went back to sleep until 8:00am. He took a nice long nap today and seems to be feeling pretty good. The bandages were removed today. He has quite a bit of swelling. There is quite a bump above his ear. It's hard to see in the picture, but it sticks out pretty good. I think there's a bit of blood pooled under the skin. His head was shaped a little odd when the bandages were removed (due to swelling), but is slowly looking a little more round. No fever this time, which is nice.
The scar to the left of the bandage is from a central line. I didn't even realize it was there until his head was shaved. I knew he had a central line behind the ear, but never realized how big the scar was until now.