Monday, March 30, 2009

My tiny movie stars...

Okay....not movie stars, but in the video
James is wearing a green vest and Gavin is in a l/s t-shirt They had fun on this shoot.
Debi Deberry is the voice of Jimmy Nuetron.

Happiest Day video

Friday, March 27, 2009


When Gavin does things that are not allowed we tell him he's making a bad choice. We also give him choices for behavior to help direct him.
The other day I told him he had two choices, sit at the table and eat or go to his room(he had been asked to eat some dinner many times prior to these choices).
His response:
"Mommy, you have two choices. Be nice to me, don't yell at me, don't tell me to eat my dinner,be nice to me"
Glad it's sinking in.

Tuesday, March 24, 2009

James treatment

At 28 weeks pregnant while getting a routine US, a mass was discovered on our sweet baby James' neck. It measured 4cmx4cm and was thought to be a fluid filled mass. WE were uncertain of what the outcome would be at that point and saw specialists, had an MRI fo James through my belly, and had weekly US until delivery. I cried and prayed every day in hopes that he would be able to eat and breathe at birth, wishing that there was no mass! I really rarely think about how terrified I was today, but this week I've been remembering.
At birth the mass was very evident and disfiguring. James was beautiful. I remember feeling very protective and sad, but he was so perfect. I just wanted everyone else to see the perfect boy I saw. I prayed and touched him. I massaged the spot and rubbed my hands together and layed them on his neck to use "energy". Whatever worked was my motto!! I remember going to the store and a well meaning lady saying "oh, what happened to him", she probably thought something bit him or he was having an allergic reaction:( It was so hard for me to say, he was born with a mass...and watch her face as she realized this was a birth defect, not a horrible reaction. I felt bad for her, but also angry that my sweet baby didn't look perfect to her. Not angry at her, just at the world in general.
Miraculously at around 1 month the mass seemed to be shrinking. It really looked smaller to our family. I know, in retrosepct, James was just growing. As James grew the mass stayed the same size and seemed to move inward. It became less detectable(looking back at picture it is still very much there, but it looked so much smaller than when his whole right side was hugely swollen at birth) and today is hard to see unless you know he has it. I can see it clearly and feel it and continue to wish it would just go away, but I know that is unlikely. I also know through MRI's that it has not shrunk, it is just the same size that my sweet tiny boy was born with and now he is much bigger.
We've spent the last 5 years trying to find the right Dr. A Dr who would be our partner, really explain our options, and treat James kindly. Dr. Bauer was perfect for us. We found him and loved him and this is one of his specialties! We hoped he could be the Dr to help us, but he referred us to Dr. Edmonds in Houston.

We made the trip to Houston today for our 1 hour appt w/ Dr. Edmonds. (He is doing the study on lymphatic malformations and OK432 that we hoped James could qualify for instead of the very scary surgery that would likely impact his trigeminal nerve). Good news~he qualifies because his mass is macrocystic rather than microcystic for the most part and we feel good about the Dr. and his explanation of the treatment. We also feel really good we did not do surgery because it is so risky and according to Dr. Edmonds you almost always end up with some damage to the facial nerve.
Bad news~we'll be spending alot of time in Houston. The treatment will most likely take 2-3 procedures and we'll spend 1-2 nights in the hospital the first trip. If all goes well we may not have to stay overnight the second and any subsequent visits.
The procedures causes swelling and infection so James will have a fever for about a week after each procedure. He will likely have irritation(pain:() in his neck where the mass is during this time because the bacteria will cause an infection to hopefully cause the body to block and shrink the mass. We are hopefull that these will be the only side effects.
We have to treat the mass because chances of severe swelling and or infection that requires emergent care are likely without treatment. We want to take care of him before school starts so now is the best time. Treatments should start next month.

Thursday, March 12, 2009

Monday I went with Mom to her appt to hear the results of the CT scan. She had chemo on Wed.

Mom looks good and is able to do almost everything as long as she takes breaks. She is seeing clients, shopping for herself, and driving back and forth to Dallas for her Dr. appt's, labs and chemo.

She is responding well to chemo. The nodules that fill her abdomen are shrinking and there is hope. I was surprised to hear how much cancer is in her abdomin and surrounding area's though. I was also extremely upset to hear that the cancer is in her lymph nodes, around her liver and her lungs and much more aggressive than I thought in December. There is just nothing good I can say about the cancer!

The Dr's believe it will be good to reverse the ostomy next month. It is hard to absorb nutrients and stay hydrated with an iliostomy. Dr. Mathews believes Mom is doing amazingly with it, but really feels better if it is reversed. Dr Tate will do a test next month to make sure the blockage is gone and then proceed with surgery a week later if all looks good. Mom is a bit nervous about having to recover from surgery again, but up for it.

The plan for now is to continue with chemo for as long as it is working. They will finish the 6 course treatment at 3 week intervals and then spread it out to every 4 weeks.

James and Gavin have really been concerned through this. I think it freaked James out when Mom was in the hospital.He saw how upset I was and could't dcide if it was because of my Mom or for her...poor sweetie. Gavin enjoyed using the leg massager's and climbing on the lounge chair.
She has been bringing treats up. Last time she brough some fruits and nuts in cute carrot containers. They told her that they liked candy better. This trip she brought gingerbread women cookies up. James said " I really wish they had candy on them" so she is going to look for candy eyes next time. Gavin and James spent time coloring and doing activity books with her this time.
They have both noticed her hair loss and each had a small reaction to it. James asked "Is that Noni with no hair?" Gavin just looked for a long time trying to digest if she truly was bald. Now they've moved past and seem to think it's just the way things are!