Late May update....

As hard as this is to write, we wanted you all to know...

We do not have any inspiring updates today, Carson's disease has been progressing. His body has started to require less fluid, we have decreased his water intake by half. With the decreased water he has had less secretions, so we have taken him completely off Robinul. We had been seeing pretty significant water retention. While his body is getting less water and we are seeing the retention go away, Carson has had dryer eyes, mouth and bowel movements. We have been using eye drops and brushing his teeth more to help keep hydrated, as well as more Miralax. Carson has also stopped responding to us, his sister and other stimuli. Although we can not know for sure, we (and the doctors) believe his brain damage is spreading to his brain stem effecting all the autonomic processes. These processes include: heart rate, urination and eye movements. He has not been urinating on his own for about 2 weeks now, we have been having to catheter him every six hours. Carson has pretty much slept this entire week, awake only for a few hours each day that we can tell. As with the last 3 1/2 years we do not know what the future will bring, we are just enjoying every moment. I am looking forward to a week off of work the first of June, I plan to stay at home and enjoy my children. Please continue your prayers that Carson will not suffer and for Jeff and I that we may remain strong as our journey with Carson continues.

More pics March and April

Cameryn Nicole has arrived

Here are some first pictures of Cameryn. More to come of Carson and Cameryn.

She arrived on Wed, March 16 at 12:47 pm. She was 7 lbs 6.5 ozs and 19 in long. With the exception of her hair, Cameryn looks just like Carson did! Mom and Baby are doing well and the boys are also adjusting well. Carson loves being a big brother.

Carson and Cameryn Pictures

Here are the first pictures of Carson and Cameryn...more to come soon, she is due for arrival in just a few weeks!!

2-20-2011 update...

I know finally an update!

Winter:

We have had a pretty good winter. Carson has been on antibiotics a few times for colds and a UTI. We have stayed out of the hospital!!! (please knock on wood for us) Carson's seizures have been up and down, we have changed meds and have them pretty controlled right now. Tegratol has been gone for a long time. We tried to get him off Keppra as well but got down to 1/2 ml 3xday and had to increase back to 1 ml 3xday, much better than 5 ml 3xday! We have also decreased Phenobarbitol and increased Sabril. We are currently holding strong waiting for warm weather to stay!

Beginning of spring:

We plan to get Carson back in school after spring break when the weather will stay warm also when the majority of germs are gone. All of his teachers and therapists have been coming to the house this winter. We made it to Coco Key Water Resort (in Independence MO) last weekend for Julianna's birthday...we had a blast. Carson went down his first water slide on his cousin's lap! We also enjoyed the lazy river. Carson's current weight is 19.2 kg (42.25 lbs) and 37 inches long. Our big growing boy!

Diapers:

Carson outgrew disposable children's diapers a long time ago. We switched to cloth diapers around Thanksgiving and they have been working much better. Carson holds his bladder until the last minute, so when he goes it is fast and a lot, the cloth diapers hold all it needs too and are bigger than disposable. The diapers we have him in are called FuzziBunz, we do have to add extra inserts in them also. I wash his diapers once a day, much better than the floods we would have several times a day in disposables.

Schedule on side:

We have changed Carson's schedule a while back. With updates in formula, water, meds and timings! Check it out, we have quite busy days! Thank goodness for Carson's nurses. We currently have a nurse 6 days a week, 12 hours at a time. We are looking to fill our Sunday shift.

Baby:

Baby Cameryn Nicole is expected around March 23. She and I are doing great and growing big. I have been told we need to add pictures. I plan to get pictures of Carson and my belly, I will add them as soon as I take them.

I will get some new pics up soon and try to update sooner than 4 months from now.... Thanks for thinking of us and hope to see all soon!

Happy Halloween!

Here are some long awaited new picures...we have had a busy start to the fall. We went to the Pumpkin Patch with his class, carved pumpkins, trick or treated, and even caught a few smiles on camera! Enjoy....we sure have been!

Carson gave use several smiles the other day, but of course not for the camera. What a gift...seeing your child smile...it melts my heart every time.
Carving pumpkins. Nurse David is helping!
Happy Halloween!

Roar, I'm a scary bear!
Seriously mom, do I have to....hurry up!
Our big brown bear.
At the KC Pumpkin Patch.
They had this awesome jumping pillow. He kept peeking at me wondering what I was making him do.
EWW this is gross!
Cool seeds.
What pumpkin should I choose?