Merry Muscles in Action

Carver jumping in the Merry Muscles: Carver has always enjoyed hanging his head over the side of things. He used to do this all of the time in his baby swing. He is very capable of keeping his head in the back of the jumper, but insists on hanging it over the side. Kinnick keeps saying that Carver is "Done". She's very impatient and can't wait for her turn to jump.




Kinnick jumping in the Merry Muscles:

January 26th, 2011

We had a follow-up appointment with Carver's Neurologist this past Monday. We didn't actually see the Neurologist that did his Botox. Instead, we seen his PA. It's easier to get in to see her. I told her that I wasn't all that impressed with the results of Carver's Botox. I think it helped some, but it just wasn't as fabulous as I had dreamed it would be. Well, the PA started looking at Carver. She took his shoes and socks off and then twisted his ankles around and bent his legs, etc. Then, she said, "His ankles feel great." Ok....well, I attributed that to getting new Cascade DAFO's. Carver had crappy AFO's that caused his ankles to tighten up. So, we went back to DAFO's. His ankles were always good with the DAFO's. Then after talking some more, I said that I just didn't feel like the Botox did much for his hamstrings. I wondered if next time we could get a little more in his hamstrings. She looked at me funny and then looked at her computer. Then, she said, "Dr. didn't do any Botox to Carver's hamstrings." What? He was supposed to do 65 units to the adductors and 35 units to the hamstrings. She said, "No, he did 65 units to his adductors and 35 units in his gastrocs (to help his ankles)." Holy crap! No wonder his hamstrings are still tight. So, I looked back at the paperwork that he gave me after our last meeting. Per the paperwork, he wrote - "PT alert - Significant spasticity in the Legs. More in addutors and hamstrings." Then, he wrote - "Plan - Schedule Botox injections: 65 units in adductors and 35 units in gastrocs. Bilaterally - total 200 units." I hadn't read the paperwork because he verbally told me the plan. The verbal plan was different then the written plan. Clearly, he screwed up! What a complete waste! The PA said that she would make sure that the next Botox injections would include the hamstrings. You think?

Art work by Kinnick

The things that Kinnick and Carver do never ceases to amaze me. This weekend, I found Kinnick at her art easel coloring. She has special crayons that can be used on a white board. It's really hard to tell the difference between most of the colors. They are all very dark and the wrapper is the same color on all of the crayons. She was frustrated because she couldn't find the "blue" crayon. I helped her find the "blue" crayon and she finished her art work.

Not bad for a little blind girl.

January 12th, 2011

It's been a while since I posted an update on Kinnick and Carver. Life's been a lot busier, lately. I returned to work Full time in November. Then there was Thanksgiving, then Christmas, then Dad's Cancer. Adjusting to Full time hasn't been too bad, but it doesn't leave much time to do the things I need to do at home. I'm hoping that with the holidays being behind us, I can finally get adjusted. There are still so many things that need added to my schedule. Kinnick and Carver both need eye appointments. Their eye appointments take forever. I'm not talking about eye appointments in Michigan. I'm talking about vision appointments here in town. I haven't been to the dentist in forever, so I need to make an appointment to get my teeth cleaned. I need to start working out regularly. We're in desperate need of a vacation. We've looked at a few places, but we don't even know where we want to go. Kinnick and Carver's IEP's are due in March, and I'm dreading the process. I'm still worried about their health. I know they would do great in school, but the health issues continue to be a problem.

The results of Carver's botox are starting to show. I'm not seeing the huge differences that I was expecting. It's made a difference, but not to the extent that I expected. His legs are more relaxed, but still scissor easily. He's not as tight as he was before. I can tell that the muscles are a little looser.

We got the Merry Muscles jumper that we ordered before Christmas and the kids love it! It's much more size appropriate. I need to post a video to show how much fun the kids are having in it.

Carver is doing a little better in his Pony. He needs prompted to move, but once he gets going he really likes it. It's nice to see Kinnick and Carver at the same height. Today, Kinnick raced around the kitchen next to Carver while pushing her corn popper.

Kinnick has had an ongoing cold that has required the use of oxygen during the day on several occasions.

We still haven't received our approval for Carver's cochlear implant. Not that it matters, Advanced Bionic's recall is still in effect, so we couldn't get the implant yet, anyway. I'm frustrated that it is all taking so long, and I haven't really had the time to check on it.

There are so many things to talk about, but it's late. I'll update more later.

Thanks for all of the thoughts and prayers for my Dad. I truly appreciate it.

New blog for updates on Dad

I have created a new blog to provide updates on my Dad's fight with esophageal cancer. Please feel free to view the new blog at http://www.beatingesophagealcancer.blogspot.com/

Cancer Sucks

I recently posted about my Dad being diagnosed with cancer of the esophagus. Unfortunately, esophageal cancer often doesn't present symptoms in the early stages of the disease. The symptoms are not obvious, at all. For example, some of the symptoms are indigestion, heartburn, acid indigestion (caused by chronic acid reflux), hoarseness, chronic cough, and hiccups. The most common symptom is difficulty swallowing. However, the latter of these symptoms doesn't appear until the more advanced stages. Just to give you an idea, my Dad still hasn't had any difficulty swallowing and he is at Stage IVA. His cancer was found when he went to the doctor due to a swollen lymph node in his neck. He thought that it was related to an illness that he couldn't kick. At this point, he was already at a Stage IVA. Esophageal cancer is considered to be a stage IVA when the cancer has spread to nearby or distant lymph nodes. A pet scan revealed that Dad has a tumor in a lymph node in his neck, a tumor in a lymph node in his armpit, a tumor just below his diaphragm where 2 lymph nodes come together, and then the primary source - his esophagus and upper stomach. Mom originally said the tumor in his esophagus is 5 in. It is actually 5 cm.

Today, I attended my Dad's appointment with his Oncologist. I don't know much about cancer and I wanted to understand what we were up against. Esophagus cancer found at a Stage IVA doesn't have very good survival odds. My Dad's cancer is at the base of the esophagus and the top of the stomach. Removing the cancer at this point is not recommended. The surgery is horrible and the risks are very great. This is something they would attempt at a Stage I, II, and maybe III. If there was nothing else they could do, they may attempt it at Stage IV, but the risks are overwhelming and don't carry very good odds. The plan of attack for my Dad will be to start Chemo right away. He goes in first thing Wednesday morning to get a Port-a-cath. Then, later that afternoon, he will have his first round of Chemo. He will repeat the Chemo once every 3 weeks. They will do another pet scan after 2 rounds to see if the tumors are shrinking. If they shrink, then this is good. They will continue the Chemo once every 3 weeks until the tumors are no longer noticeable on the pet scan. If the Chemo doesn't shrink the tumors, they will try a more aggressive Chemo. This will also take place once every 3 weeks, and will be tested to see if the tumors shrink. If this doesn't work, then they will try radiation. At this point, his cancer is not curable. It's "treatable" with the possibility of putting the cancer into remission. It is optimistic to say that there is a 10-20% chance of putting the cancer into remission. These odds are no different then bringing Kinnick and Carver home alive from the hospital after being born at 23.4 weeks gestation. I come from a family of very strong men and women. We are all fighters. My Dad is ready to kick this cancer's butt! Please pray with me that he has the strength to remain positive and the courage to fight this terrible disease. Please pray that the cancer doesn't make him really ill and that his quality of life doesn't have to suffer. Please pray that the Doctors have the knowledge and skills to address the cancer head on without missing a beat. Please pray that my Dad is able to beat these odds.

My heart is so heavy. My Dad is such a strong man and doesn't ever show his emotions. He's such a private person. I know he is hurting and scared, and that really hurts me. I feel so helpless.