Wednesday, November 25, 2009

November 25th, 2009

Picture updates:

My climber continues to climb....

Carver learning to hold his own spoon. He's not self feeding. He's just getting to know his spoon :o)

Kinnick doing the "fishy" song, concerned about what Carver is doing.

Carver looking mean with his beat up eye - he scratched himself.

Friday, November 20, 2009

November 20th, 2009

Another busy week....

On Monday, Kinnick received her first Synagis shots of the season. She's big enough now (21.4 lbs) that it requires 2 shots - one in each leg. Poor girl. I feel sorry for her, but it's better then getting a bad case of RSV.

On Tuesday, Kinnick had a sonogram done on her Kidneys and a VCUG. These tests were done to see if there is something wrong with her Kidneys/Bladder. You would think that after having 6 kids, I would know how to read a sonogram, but NOPE. I have no idea what I was looking at, so I have no idea what was/wasn't seen on the sonogram. We've gotten to know the Pediatric Radiologist at Wesley, so she was kind enough to tell me that the VCUG did not show any signs of Kidney Reflux. So, it sounds like we'll be able to rule that one out. We did find out that Kinnick can hold her pee for a very long time.... Hopefully this will come in handy with potty training some day.

On Wednesday, Kinnick and Carver both got their H1N1 shots. We didn't have any negative reactions to the shots and are happy we got them.

On Wednesday and Thursday, we had visits from Kat Stremmel. She's such a breath of fresh air. She is following Carver's progress with his CI's as part of a Grant that is interested in the outcomes of Blind/Deaf children with CI's. She is a wealth of knowledge. She is helping us understand what we can do to help Carver achieve the most he can with his CI's. And, boy do we need her help. She met with Carver's entire team of therapists (VI, Hearing, OT, PT, SLP, Nurses, Nurse Case Manager, myself, and Bob (my husband). I think we had a total of around 12 people in the room. Kat helped everyone connect to what it will take to teach Carver to communicate. The therapists helped connect Kat to Carver's physical strengths and weaknesses. Based on 30 years experience, Kat is able to take Carver's strengths and weaknesses and formulate a plan of action to kick Carver's communication into full force. She has so many great ideas that are so easy to include in any of our day to day routines. Things that are very simple, but you just don't think about them. For example, most people know that when the microwave beeps, that someone takes some type of food out of the microwave, right? We know this because we hear the beep and we see someone take the food out of the microwave. How do we connect the microwave with food being heated? With our ears, eyes, and nose. Well, Carver hears all sorts of sounds now. However, he has no idea what any of them mean, and he can't see. So, we have to come up with a way to connect Carver to the sound and meaning of the microwave. We can do something as simple as putting him in his highchair before we heat his food, then when the microwave beeps, we draw attention to the beep, "Carver, did you hear that beep? Your food is ready", then we bring him his food. During meals, we can connect him to meal time by handing him a spoon as soon as he is placed in his highchair, and put on his bib - indicating that he is going to eat. We can ask him if he wants a bite before giving him a bite. He can let us know by opening his mouth or shaking his head "no". He can help wipe his own face. We can hold the cloth in his hand and guide it across his face. He can take his bib off when he is finished eating - indicating that the meal is complete. Then, he can put his own dishes into a tub when finished. All of these are learning opportunities that we've been robbing Carver of by doing these things for him without saying anything. It's so easy to just do things for Carver without thinking. This will be a whole new way of thinking. The way Kat explained it to us is, "Nothing is free". Carver will have to work for everything. If he wants a toy, we will hold it out and ask him if he wants the toy. If he wants the toy, he will either have to say something (make a sound), or reach out and take the toy. When we want the toy back, we will ask Carver to give us the toy, and he should be able to hand it back. When we are ready to put the toys on his tray away, Carver can help throw them into a tub. By putting them in a tub, Carver learns that there is a place that toys go when you are finished with them. They don't just magically disappear and reappear later. Hopefully later he will return to the tub to find the toys. If not, we can bring the tub to him and let him reach into the tub to find a toy to play with. This is just a small sampling of the things that we covered over the course of 2 days with Kat. We met for about 2 1/2 hrs both days. Kat is going to come to our home once or twice a month for a while to help us build all of these things into our daily routines. I can't tell you how excited we are about this. Teaching a Blind/Deaf child communication is not easy. Do you know that there are only about 10,000 Blind/Deaf people. Of the 10,000, only 3% of them are profoundly Blind/Deaf - like Carver. This should give you an idea of how many people have actually worked with children like Carver to help teach them how to communicate. Lucky us, we got one of them - Kat! We have a lot of work ahead of us. Having Kat on board makes me feel a lot better about how we get started on this long road.

Saturday, November 14, 2009

November 14th, 2009

It's been a while since I've posted. We've been so busy with appointments.

Kinnick had her PH Probe study done. They found that she refluxed more then 110 times in a 24 hr period. None of the refluxes contained acid. This just shows that the Prevacid that she is taking is controlling the acid. However, it also shows that the fundo-plication is not working. I have no idea what we do from here. I have an appointment with the GI doctor in December to discuss the findings. I'm pretty sure that they're going to want to re-do the fundo. This is a pretty big stomach surgery, and I am not interested in it, at all. However, something has to be done to get the lung infections under control. The reflux could be the cause of the lung infections. It's possible that the stomach bile is getting into the lungs causing the infections.

Kinnick and Carver both had EUA's to measure the pressure in their eyes. We didn't receive very good results for Kinnick. The pressure has gone up to 37. At this level, damage can be done to the optic nerve. In addition, it will keep her from seeing much of anything. I have no idea how she gets around the way she does. At this point, we know that she really doesn't see much more then lights and shadows. Carver's pressure was at 23. His pressure is also increasing. In addition, he has so much scar tissue in his only good eye that the doctor said that he probably wasn't seeing anything out of this eye. This means more surgery to remove the scar tissue. Sigh...

We received the results from Carver's sleep study. He is still having mild sleep apnea and is still having desats. This is an improvement from the previous study that showed severe obstructive/central sleep apnea. So, the T&A removal did help. However, he was ordered to remain on 1/2 lt of O2 while sleeping. They will repeat the sleep study again next summer.

Kinnick goes in Tuesday for a sono on her kidney's and a VCUG. They are checking for Kidney reflux due to her repeated UTI's. This takes place in the Hospital. Anyone that knows me knows that I hate taking my kids to the Hospital for anything - especially this time of the year.

Kinnick will get her first Synagis shot of the season next week. Carver didn't qualify this year. He hasn't had lung problems this year.

Kinnick and Carver will both get the H1N1 vaccine next week - finally. I've been stressed out over it.

Nurse Jane is now cancer free! She will be coming back this month. We're excited to have her back. We're sad to be losing Nurse Tracy. She has been a huge help and we've really enjoyed having her.

Wednesday, November 4, 2009

November 4th, 2009

We still feel like we're getting a really good response from Carver's new CI. However, he has some swelling at the implant site - enough that it is bothering him. So, we've had to cut back the amount of time that he is wearing this CI. Hopefully the swelling will be gone in a couple of days. Otherwise, he has to go in to see the doctor.

We fitted Carver in a Pony gait trainer today. We have the blessing we were waiting on before ordering the gait trainer. I was impressed with how good he looked in the Pony. He needs to learn to walk - right foot/left foot. I'm hoping that with some work, he'll figure it out. It's really important to me for him to be mobile in an upright position. I'm really excited to get it ordered. Hopefully we'll have it before Christmas.

Kinnick is just taking off. She is a climbing machine! We can hardly keep her off things. We're working really hard to teach her how to get in a standing position (in the middle of a room) without any help. I don't think it will be long. I believe that once she figures this out, she'll be running - no more scooting. She still gets tired really easy and breaths heavy. She just has really crappy lungs. It doesn't seem to stop her. She goes until her legs give out. She's running in her Kaye walker - so.... I'm pretty sure we're in for some fun real soon.

Tuesday, November 3, 2009

November 3rd, 2009

Carver loving his bear.....

Once again, big sister Kinnick is stealing my if there aren't any other toys laying around to play with...