Wednesday, December 30, 2009

December 30th, 2009

It seems like we waited forever for Carver to get a Pony Gait Trainer. Then it came, and he was a couple of inches too short to use it. Well, check out his moon shoes :o)

It's going to take him a while to figure things out, but he's able to move it. He's even moving left foot/right foot. I think he likes it.

I love seeing him up and mobile. I can't wait to see how he does over the next couple of months. Way to go Carver! I love you soooo much!

Sunday, December 27, 2009

December 27th, 2009

Despite the fact that Carver's seroma continues to show it's ugly head, he is doing very well. I love that we are trying new things with Carver besides trying to get him to say something. I mean, let's face it.... Do we expect our newborns to repeat what we say at a couple weeks old? No, so we shouldn't expect a child who receives a CI to repeat words quickly. We've taken a step back and are working on prelinguistic communication. This would be similar to signing or using gestures to communicate. For example, when a child wants something, but he can't tell you - he will stand, grunt, and point at something. When you ask the child to give you something, they show that they hear you and understand by giving you the object. So, instead of expecting Carver to say something, we are expecting a response to our questions/commands. If he wants something, we expect some sort of gesture. Already, I can tell Carver to "Give me five, five, five", Carver will lift his hand and hit my hand 3 times. If he misses my hand, I show him where my hand is by helping him hit my hand. It's the best thing in the world. I know that he understands me and he is responding. Similarly, if I pull a pop tube open/shut (giving him a sound clue of what I have), and then say, "Do you want to get it?", He will reach out and grab the pop tube. We then raise it up/down to the count of three - one, two, three, then we pull the pop tube open. He helps raise it up/down as we count to three and laughs when we pull it open. He's also doing so good at meal time. Before every bite, we say, "Bite, Carver?", and he opens his mouth really big for the bite. I know this may not sound big, but to me it's huge and it feels really good. I'm so proud of my little guy.

Friday, December 25, 2009

December 25th, 2009

We had a nice Christmas with all of the kids. Everyone was up early and ready to open gifts. I thought I would share some of the fun.

Wow, all of these are for me? Where should I begin?

Thank you Grandma Woolley for the yearly Hawkeye ornament.

Carver got a new hammer that makes noise and lights up when you bang it.

Rainbows has been lending us some really neat books. We have to return the books in March. So, with help from Grandpa Woolley and Pat, we were able to purchase 3 of the favorites - That's not my Bear, Something Special, and Geraldine's Blanket. Thank you Grandpa Woolley and Pat.

Kinnick and Carver will be 3 in March. You know what that means....Kinnick has no idea what kind of seat she is sitting on.

Carver got a new toy that we can push up to his big Bumbo seat. It has lots of lights and noises.

Kinnick got a new shopping cart - they start shopping young these days.

Big brother, Hayden wanted to show off his new WII game - Star Wars Clone Wars.

Big brother, Gage wanted to show off his new Ipod Nano.

Big brother, Harrison wanted to show off his new PSP. He got one last year for Christmas and someone stole it at school - bummer.

Big brother, Gregory loves trains and wanted to show off his new LEGO train.

Big sister, Kirsten is finishing her 2nd year of college. She applied to Dental Hygiene school and we are hoping she is accepted. 125 - 150 apply and only 40 are accepted each year. We got her a bigger book bag to carry all of her medical books.

All in all we had a very nice Christmas. Now we need to find room for all of new toys and gifts.

I hope everyone had a very wonderful Christmas!

A little Pre-Christmas Gift Opening

Kinnick and Carver are blessed to have 3 very caring nurses. I don't know how we got so lucky, but we did. The gifts from the nurses just kept piling up, so we decided it was time to open them.

Wow! I wonder what's in this box.

Let me introduce you to Mr. Jangles. Thank you Nurse Jane. Mr. Jangles is super cool!

Wow, a book that sings and talks to me. Thank you Nurse Jane.

We got a kick out of Carver when we put his new Hat and Mittens on. He didn't know what to think of them. He just kept banging his hand. Thank you Grandma Gray (Nurse Marci's mom). And, thank you for the cute purple monkey!

Here's Kinnick with her new Hat and Mittens. Thank you Grandma Gray! And, thank you for the cute pink monkey.

Wow, another one for me?

Thank you Nurse Marci for the cool Barnyard friends. I love all of the sounds the animals make. And, thank you for all of the cool clothes. We're going to need another dresser.

How about these cool boots? Thank you Nurse Marci for keeping me so "Hip". And, thank you for the cute outfit to go with my new boots. I can't wait to wear them.

The list doesn't stop here. Nurse Tracy got to come one more day to see Kinnick and Carver. She gave Kinnick and Carver the best Color Explosion Glow Board. You write on the board with markers that glow in the dark. As you know, K&C can only see lights and shadows, so this is a neat way to color and still see something. Great idea! We love it. She also gave them more music, a book, a rattle, and another vibrating teether for Carver.

Thank you all! We are so blessed to have such wonderful nurses.

Thursday, December 24, 2009

December 24th, 2009

I thought I would post a picture of Carver using Kinnick's KidCart. It looks a lot like a stroller with attachments for support. Carver is able to sit up in the KidCart where he is unable to sit in a normal stroller. The KidCart also tilts if they can't hold their own head. I really don't think that Kinnick is going to need this long. I have a feeling that Carver will get more use out of it then her. He is getting a tilt-in-space wheel chair that looks more like a wheel chair. The difference is the weight of the tilt-in-space vs the KidCart. Also, I think the tilt-in-space grows a little better with the child (can be adjusted as he grows). You can adjust the KidCart, too. However, it just starts to look a little odd when they are bigger. The tilt-in-space is very heavy. We'll probably use it for school and around the house. The KidCart can be put in the back of the vehicle easier then the tilt-in-space. Insurance only pays for 1 wheelchair every 5 years, so it's difficult to pick one that will work now and for 5 years with a growing changing child.

This picture was taken at the doctor's office the other day.

Friday, December 18, 2009

December 18th, 2009

It seems like the appointments never end....

K&C both had EUA's to check the pressure in their eyes. Carver's is in normal range. He has scar tissue blocking nearly all of his pupil. This prevents light from getting into his eye - leaving him without much vision at all. He is scheduled to have this removed 1/5/2010 by a doctor here in town. Kinnick's eye pressure continues to be too high despite the added eye drops. She will require another specialized eye surgery that has to be done in MI. We're trying to get the MI eye appointments scheduled. It's always a bunch of work to get everything booked. Lots of insurance approvals and travel arrangements.

I can't remember if I posted about Kinnick's PH Probe study, or not. She had over 100 episodes of non-acid reflux incidents. They believe this is what's causing the lung infections. We're scheduled to see the GI doctor the first week of January.

K&C got their 2nd H1N1 shot today. Kinnick got her 2nd synagis shot on Monday. She's getting old enough to know what the alcohol smell means - I'm not talking about the vodka tonic that I need to assist with the shots - jj.

K&C have nasty colds. They seem to be tolerating them pretty good, but I'm a nervous wreck. I'm always afraid of the worst.

Carver continues to have a large seroma over his second CI. We tried a steroid and an antibiotic. The seroma went down in size, but quickly returned. The doctor said that we could go ahead and use the CI. We're going to just wait for the seroma to dissolve. He said it could take up to 6 months. They could aspirate the fluid, but just sticking it with a needle could introduce infection, and that wouldn't be a good thing. So, instead we'll play the waiting game. However, he has been doing very well with just one CI. We've been using some of Kat's ideas around prelinguistic communication type activities, and he's really catching on. It's very obvious that he knows what we're saying, and he knows when certain items are being presented to him. Kat will be back on 12/28/09 to help with some more activities.

I got Carver's approval for another year of medicaid. I sent in to have Kinnick's approved. This always stresses me out. We have private insurance, but the medicaid is a huge help. Our medical bills are still out of control.

Carver got his Pony gait trainer the other day. He's about an inch too short to use it. I'm going to have to be creative to figure out a way to make it work. I really want him walking in it. We also got Kinnick's wheelchair/stroller. It's a kidcart. I've actually been using it for Carver. We love it. It breaks down very easy. It has trunk support, head support, a seat belt, and a chest support/belt. It also tilts. He was finally able to go to an appointment without laying in his stroller. He was able to sit up and see the world around him. Carver is also getting a wheelchair. His isn't finished, yet. They custom make them. The kidcart is pretty generic, so it doesn't take long to get.

Tuesday, December 15, 2009

December 15th, 2009

Kinnick and Carver playing together. Kinnick just climbs right up onto Carver's stander and helps herself to Carver's toys. She's able to push the button attached to the bells, while Carver uses the switch that lights up and vibrates. Yes, he's also sampling the harness - he's multi-tasking.

It's amazing the little things in life that we don't think about. Kinnick enjoys feeling the dishwasher while it is running. It's warm and it vibrates. She likes to hold her hand and cheek up against the dishwasher when it is running. She also sits in the laundry room when I'm doing laundry and holds one hand on the washer and one hand on the dryer. She won't leave until I start both of them.

And yes, that's Carver's AFO. Some days we're lucky to find them. For some reason, Kinnick loves to carry around Carver's AFO's.

Oh, and I almost forgot to mention Kinnick's big news..... She is able to stand up in the center of a room now without help!! I'm so proud of her.

Wednesday, December 9, 2009

December 9th, 2009

Loving the new Stair System.....

BTW... Carver's vest isn't for fashion, it's holding his "Lena". The device that is recording sounds (his and ours) for the study we're involved in for Deaf/Blind with CI's.

Tuesday, December 8, 2009

December 8th, 2009

We received the new Stair System for Kinnick and Carver. It's soft and can be changed around. There are a couple more mats that go on each side of the tunnel. I left them off to save room. My great room is out of control with equipment and toys.

We're trying to get Kinnick to crawl through the tunnel. We put her favorite snow globe at the end of the tunnel, and away she went - just didn't crawl. Instead, she scooted. It's a start.

She's able to climb both sides of the Stair System. We've also been putting Carver on his knees up against the stairs.

Carver working out on the new Peanut Ball...

We were very fortunate in receiving our equipment this year. The State cut all of the funding off for the year just the other day. Luckily, we had already ordered all of our equipment for the year. We still have a Pony Gait trainer coming and some really cool swings and swing set.

Sunday, December 6, 2009

December 6th, 2009

We're getting excited about getting Carver's new Pony Gait Trainer. I can't wait until he has something with enough support to help him learn to walk.

We put Carver in the baby walker. He moves around a little, but his legs cross and get in the way. He seems to enjoy being upright and mobile.

Miss Kinnick is a walking machine. She walks all day long. She falls a lot, but she prefers to walk now vs bum scooting.

Found a Peanut, Found a Peanut, Found a Peanut just now... Kinnick and Carver got a new "Peanut Ball". They both love it. It's just the right size for both of them. This is the new favorite exercise toy. Thank you MRDD Waiver special funding.

Friday, December 4, 2009

December 4th, 2009

We had our "Transition" meeting with Rainbows and the Public school system (USD266) yesterday. We will have to "Transition" from our current Early Intervention group (Rainbows) to the Public school system when Kinnick and Carver turn 3. This was our first meeting and was set up to familiarize the Public school system with K&C needs. It was also an opportunity for us to ask questions about the services that the Public school system has to offer. It has been really nice having Rainbows' therapists come to our home for services. Once we transition into the Public school system, all of our therapy will take place in the classroom. They have class 3hr/day 4 days a week. This doesn't mean that we have to go 4 days a week or even for the full 3hr/day. All of this can be discussed and scheduled based on what's best for K&C. It is possible that the therapists could come to our home if necessary. When I say necessary, I mean medically necessary. Right now, I'm not sure if it is medically necessary. I'm a little concerned about all of the lung issues that Kinnick continues to have and how being in a Public school with many, many children is going to impact her. I understand the need for early intervention, but I can't risk health for the extras that would be offered in the classroom setting. We still have some time to think about things. I really liked several of the teachers and their enthusiasm. I also liked how willing they were to accommodate any and all of K&C's needs. It pretty much sounded like they would make sure they got anything and everything they needed. They also seemed very open to trying the school setting first and if we found that K&C's health begins deteriorating, then we could go to homebound therapy. I was excited to meet the TOD (Teacher of the Deaf). She was very willing to meet with Kat to go over our plan of action for Carver and was willing to share in the opportunities that the Grant has to offer. A couple of the teachers even asked to come to our home to do their evaluation on K&C. Each of the Public school system therapists will have to evaluate K&C to determine frequency of therapy. This is always a fun one for me, because I never feel like we get enough therapy ;O). Overall, I would say that I was pleasantly surprised with the staff and am looking forward to seeing how things go with the first IEP draft.

Wednesday, December 2, 2009

December 2nd, 2009

We had our big meeting last month with Kat and all of Carver's therapists. We have an action plan in place now to begin working on Carver's Communication and Language Development.

Kat compiled all of the feedback from everyone at the meeting and provided the following initial goals/action plan:

Auditory Perception & Aural Receptive Communication & Language

1. Specific responses to sound play in a social & play interaction

2. Response to environmental sounds in the home

3. Increased vocalizations

4. Increased action on sound-toys

Receptive Communication & Language Targets

1. Use of touch cues/tactile gestures for “names,” directions, choice, greetings

2. Use of objects to “announce” different activities/locations/people

3. Identification of objects that are motivational, used frequently and part of routines.

4. Response to one-concept directions (up, down, bite, bath)

Expressive Communication & Language Targets

1. Increased use of prelinguistic forms and rate of communication ( specifically, extending hand to request object/toy; tapping person to request more interaction, extending object for interaction). Carver currently vocalizes and moves his body to request more. We need to up-the ante so that he is oriented to the other person who is interacting with him and using gestures.

2. Increase rate and type of vocalizations

3. Later – Selecting objects to communicate, paired with vocalizations if possible.

4. Use of communication intents/functions: request more; request, make choices, greetings, offer.

Sensorimotor Targets to Support Communication and Language

1. Use of different objects (washcloth, spoon to mouth, Kleenex) to represent function.

2. Play with objects demonstrating different relations (dumping, putting in, taking out).

3. Continued movement of actions leading to imitation.

4. Partial participation to wipe mouth, throw away, take off.

How will we teach?

1. Follow child’s lead

2. Be responsive to vocalizations & movements

3. The A-B-C’s of teaching…know exactly the behavior being targeted (B) and how much help the child needs under what conditions (A); and provide timely consequences (C) that include the name of the object, activity or person…always lead with the auditory and support with an touch, object, tactile gesture cues, say the name again.

4. Use social interactions that include (a) turn-taking (b) joint activities, and (c) joint attention

5. Use shaping and fading so that you shape a child’s behavior (use a reach for toy to an “extend hand” response and gradually “fade” your support to encourage initiations.

6. Use a “finished box” so Carver will know when activities are finished; let him know that you are removing toys…try to do it within his line of best vision if possible…and gradually fade the sound of the toy so he begins to understand sounds at a distance.

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...

Thursday, October 29, 2009

October 29th, 2009

Ok, we've mastered the stairs, what's next?

Wednesday, October 28, 2009

October 28th, 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

October 26th, 2009 CI Activation - Right Ear

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

October 25th, 2009

Kinnick is on a roll....

Tonight she learned how to climb into her big brother, Hayden's football chair. She loves his chair. It's child size and spins in a circle.

Saturday, October 24, 2009

Walking, Walking, Walking

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!!

October 24th, 2009

Kinnick hasn't ever really paid any attention to Carver. Lately, she has been swinging him in the baby swing. Today while swinging him, she kept leaning over and kissing him. It was so cute. He seems to like the extra attention.

Friday, October 23, 2009

October 23rd, 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

October 21st, 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

October 19th, 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

My little Monsters...

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.

Here's a typical picture of Kinnick. Full of attitude with no time for a picture.

Carver, doing whatever it takes to please the ladies.