December 28th, 2010

Kinnick is feeling better. I think she caught a little flu bug. Christmas day, she had a temperature and a snotty nose. She seemed to feel better by evening. On Sunday, she had diarhea - yuk. Then, last night a temperature, again. Hopefully, we're done with that bug.

Carver got his botox injections yesterday. They put 65 units in each aductor and 35 units in each hamstring. We won't really see the results for 2-4 weeks. He was sedated for the procedure. He was a little crabby afterwards, but I believe mostly due to the anestesia. He always feels crappy after being sedated. Today, he's back to himself. He has a bit of a cold, so that's giving him trouble eating and breathing, but nothing too bad.

I don't get much time to take care of myself. I've been having terrible back pain for quite some time > year. It has finally gotten to the point that I needed something to help with the pain. So, I seen the doctor yesterday. She gave me some muscle relaxers and some prescription motrin. The muscle relaxer seems to really help, but makes me tired. While there, I got in trouble for the usual high blood pressure. My blood pressure was 168/94, so I have to monitor it for the next couple of weeks and then see the doctor again. I've been trying to avoid blood pressure meds (I hate taking meds), but she may not let me out of it this time. I just got a treadmill, so I'm hoping a little exercise will take care of it. The problem is that I have no energy, so it's hard to get motivated enough to get on the treadmill. High blood pressure runs in the family. I'm not a drinker or a smoker, nor am I over weight. I just have bad genes, and a lot of stress. Another thing that I'm dealing with (my whole family is dealing with), is that my Dad was recently diagnosed with esophagus cancer. He's 63 years old. This is a cancer that typically presents itself around age 60. We don't know much about it, yet. I only know that the cancer is about 5 inches long, and at this time, it is not operable. My Dad sees his doctor on Monday to get the course of action. Please pray that he gets the meds that he needs to shrink the cancer, so that it becomes operable.

Christmas Day

I think we had a little too much fun before Christmas. Kinnick has done pretty good this winter, but today was a crappy health day. Kinnick didn't want to get out of bed this morning, and required oxygen most of the day. I gave her some extra breathing treatments, some motrin, and some cold medicine. By early evening, she was able to give up the oxygen, but was still pretty sluggish. Hopefully tomorrow is a better day.

The rest of the family was healthy and had a great day. We opened presents and then stuffed ourselves with Turkey, mashed potatoes, stuffing, cranberries, rolls, and the works.

A visit from Santa Claus

While decorating cookies Christmas Eve, we received a visit from Santa Claus. The front door opened, a gust of wind came in, and there he was.... SANTA CLAUS.

Carver didn't mind sitting on Santa's lap.

Kinnick didn't know what to think of Santa Claus - she kept her distance as if he was Uncle Bill.

Big brother, Hayden didn't mind sitting on Santa's lap and was very excited to get the game that he asked Santa to bring.

The cookie decorators (helpers).

We had a blast playing guesstures that evening. Here is a picture of Uncle Bill acting out a "Jockey". Can you tell? His team missed this one. I thought he made a good jockey.

Thanks for the laughs Tonya, Bill, Tyler, and Miles (My sister's family).

Early Christmas

Nurse Marci and her mom, Grandpa Gray (GG) came to visit a few days before Christmas. They brought several nice gifts for Kinnick and Carver. Kinnick and Carver got the opportunity to practice opening gifts. Wow, I was quite surprised how well they did unwrapping their gifts.

One of the things that Carver got was a drum that lights up and plays music. It's just the right height and is easy for Carver to hold and play. Kinnick was very interested in the new drum and was even a little jealous.

Kinnick quickly forgot about the new drum when she saw her new easel. The easel was just the right size. One side is a magnetic dry erase board. The other side is a chalk board. Both sides hold paper for drawing. Nurse Marci also got some really neat crayons that are for dry erase boards. Very cool. Kinnick has really been getting into coloring. We hang her pictures on the fridge and she frequently visits the pictures.

Nurse Marci loves shoes, so we rarely need to buy shoes in our house. Carver got the cutest pair of chucks - navy blue high tops. We have a really hard time keeping shoes on Carver. These stay on really good.

Kinnick got a new pair of boots - very cute. She kept them on all day. We didn't take them off until bed time.

Thank you Nurse Marci and GG for the great gifts!

December 11th, 2010

It seems like I've talked a lot about Carver lately, so today I'll give you a little update on Kinnick. Kinnick is still doing really good with her primary colors. She is very consistent when telling us her colors, so it's obvious that she can see in color. She insists on telling you the color of everything. We've started working on counting 1-10. We're starting slowly. She's got 1-2 down, and she is now counting 2 items for fun - ears, eyes, toys, books, etc. I'll do a video when she is able to count to 10. We're also working on ABC's. We say each letter, then she repeats the letter. In some cases, she'll say the next letter in line. For example, if I say "H", she'll say "I". She can repeat all of the letters in the alphabet in her raspy little bedroom voice. It's so cute. Hopefully, she'll know her alphabet by the end of the school year. If so, I'll be beaming with pride (as if I'm not already). She hates eating, but will now request bites of her yogurt at breakfast. She refers to yogurt as her "yo-yo", and often wants to carry a container of yogurt around the house. She can clear an entire shelf in the pantry searching for the yogurt. She can open the doors to the pantry, now. You can always tell when she's been in the pantry - it looks like a tornado went through - every time. She's also requesting to "eat" shortly before meal time. She comes to us and says, "eat". Hard to believe because she really doesn't like eating.

So far we've been lucky this winter. Kinnick and Carver have already had several colds, but nothing that has required a significant amount of oxygen. Extra breathing treatments and a slight increase in oxygen has taken care of the colds so far. Each year seems to get better.

Carver's Special Tomato MPS for Feeding

Carver's new Special Tomato MPS came today. This will be used to replace the baby highchair. It should grow with him until at least age 8. At the rate my children are growing, this will fit him until he's a teenager. It will be a bit of an adjustment going from a baby seat to a bigger seat. This seat is lower then a baby seat, so I'm going to buy a small chair on wheels - like the ones you see in the doctors office with no back on them. This will put us at Carver's level, so we can feed him. Other then that adjustment, this should work out great and can also be used for Kinnick.

For fun, here is a picture of Kinnick going for a ride in the back of Hayden's dump truck - wearing Carver's slippers.

Advanced Bionics Recall puts CI on hold

We got some bad news today. Advance Bionics had to recall their HiRes 90K Cochlear Implant. This is the implant that Carver has. They have had 2 out of 28,000 devices confirmed where the device caused pain, overly load sounds, and/or sudden shock sensation in the implanted ear. They have 9 other cases pending. The solution is to remove the Cochlear Implant. The issue presents itself within the first 90 days of device use. Carver's current device is working fine, so no reason exists to remove it. However, this means we can't get another Advanced Bionics implant until the investigation is complete. There is no ETA at this time. We have the choice to go with another manufacture like Cochlear, however we are very happy with our current device and don't want to mess with the complication of trying to get 2 completely different devices to work together. In addition, I don't want the added baggage related to packing 2 completely separate battery packs and chargers. We have enough stuff to pack already. One setback after the next - this totally stinks!

Learned Helplessness

We actually seen several doctors and therapists last Wednesday. We attend a CP clinic about once every 6 months. At this clinic, they bring in a Neurologist, PT, OT, Orthopedic Doctor, Social Worker, Nurse, Nutritionist, Dental Hygienist, Orthotist, and someone who can make adjustments to equipment like wheelchairs.

In my last post, I mentioned Carver's appointment with the Neurologist. Kinnick doesn't really need to see the Neurologist. She seems to be doing just fine - other then delays related to her lack of breath support, lack of vision, and hypotonia. However, even with her hypotonia, she's doing quite well. She's just very weak. The PT suggested some exercises to help strengthen Kinnick's legs - mostly squat type exercises and walking up/down stairs. She also mentioned getting Kinnick a balancing board. So, we added that to the Christmas list.

The PT made some suggestions for stretching Carver. I asked if she thought that Carver was "as far as he's going to go physically". The reason that I asked is because we put him in a sitting position every day and work so hard to teach him to sit independently, but he just can't do it. She told me that she believed he could and would do it. She believes that Carver has "Learned Helplessness". What's that? Well, we treat Carver like he is 3-6 months old. We always watch his head, and we never let him tip over or fall. We guard him at all times when working with him. She suggested letting him suffer some consequences for his actions. Sounds terrible, but I think she has a point. She didn't suggest letting him really hurt himself. Instead, she said to practice putting him in a sitting position while on a soft mat. Or, when there are soft pillows around him. Then, instead of guarding him and catching him every time he leans to one side or tips over, let him fall. This will teach him that there are consequences for his actions and he shouldn't do that. By always catching him and guarding him, we have taught him that he doesn't have to do anything, we'll always be there and help him, and he has no idea that there are really consequences for his actions. We're going to give it a try and see how it works.

We got Carver's wheelchair adjusted just in case he is ready to go to school in March. We didn't bother getting Kinnick's adjusted because she's doing so good with her walking and for distances, the school can put her in a wagon.

Tomorrow, we see the Pulmonologist and Carver gets to try out the new Auditory Conditioning System.

Botox and more

We seen Carver's Neurologist last Wednesday. Carver's spasticity in his legs isn't getting better with neurontin, anymore. We tried baclofen prior to neurontin and it didn't work, either. So, the Neurologist has finally agreed to do Botox. Botox (neurotoxin) works in the muscle where it is injected by blocking signals that tell the muscle to contract. Hopefully this will help relax the muscles in Carver's legs and allow his legs to be more functional. The doctor agreed to do injections in Carver's adductors and his hamstrings. Carver also has quite a bit of spasticity in his lower back and right arm. However, due to Carver's size (dosage limitations), the doctor is only able to treat the most needed areas. Carver will continue to take neurontin to help with the other areas.

Carver is really starting to come alive with his Cochlear Implants. It's becoming more obvious that he is not only paying attention to sounds, but learning their meaning. He's also starting to use the little bit of vision in his left eye. Carver is so mobile now - rolling on the floor. He used to stay in the great room and only rolled around in a very defined area. Now, he's rolling into the Kitchen and halls. Sometimes, I walk into the great room and have no idea where's he gone. It's not hard to find him, but always a shock. He loves going to the changing table where we keep a plastic mat. He lays on the plastic mat and scratches it. I think he likes the way it sounds. He has the path to the mat memorized, and can roll straight there without getting lost along the way. He can roll right and left, but prefers to roll to the left. I believe this is due to the fact that he only has vision in his left eye (rolling to the right would be like rolling blindly), and the fact that his left arm has more function then the right. He uses the right arm to push himself over his left shoulder. If he gets in a position (hits a wall or object) and can't roll to the left, he will lift both legs in the air (above the wall or object) and drop his legs to the other side of his body, then push off and continue rolling to the left until he gets to his destination. I've even seen him go back-n-forth between the plastic mat in the kitchen and the great room. When her returns to the great room, he is typically looking for a toy to play with. He doesn't stop until he finds the toy. It's such a pleasant surprise to suddenly hear one of Carver's toys playing music, and to see that Carver has moved to the great room and he's the one playing with the toy - no help from anyone. If he accidentally turns the toy to the off position, he cries and yells until someone turns the toy back to the on position. I'm not sure if this is because he wants to hear the toy, or if he wants to see the lights that light up when the toy is on. Either way, I'm trilled that he notices.

We're still waiting on insurance approval for Carver right CI surgery. So, it's not looking like he'll be activated by Christmas.

Carver has done very well without oxygen at night. I've only had to use it a few nights with colds.

We applied for family support funding through the MRDD waiver. This funding comes up once a year and is typically how we fund Kinnick and Carver's needed equipment. Due to cutbacks, we didn't qualify for funding this year. They excluded anyone that was receiving any kind of funding (regardless of type of funding) from another waiver program. We receive a medicaid card for Kinnick and Carver which provides nursing in the home via the Technology Asisted waiver. Therefore, we didn't qualify this year. We only requested funding for a replacement highchair for Carver. Kinnick and Carver are still using the baby highchair for meals. Kinnick is capable of sitting in a regular chair, but Carver requires full support. So, we're needing a special chair for feeds. Fortunately, my private insurance (BCBS) has agreed to pay for the seat. I didn't think they would pay for it, so we were surprised when they approved the request. Carver should receive his new highchair before the end of year. We ordered a Special Tomato Mobile Positioning System. These cost around $3,000, so hopefully it will accommodate for several years.

I still have lots to talk about, but I'll save it for another post. This post is getting rather long.