New Dew!

I guess this is the day for scary things, being Halloween and all. Today I am venturing out for a new hair style. I have an appt today with my hairdresser to do something drastically different to my hair today. I don't think it's a midlife crisis, I'm only 30 something? I am just plain tired of flat hair. My husband, Jeff, has no idea I am doing this today. Hopefully he won't see me and think I went out and bought a new Halloween wig. I figured if I don't like my hair I can cut it and it will grow back. Or I can march down to the famous Wig Palace store here in Anderson!

Daniel continues to do well. He is still adjusting, but overall doing well. He is sleeping much, much better at night. We are thankful for that. God has been so gracious to our family. We are thankful for our family, our children, home, food on the table, wonderful supportive friends, a great church family, all the people who come into our home weekly to help us take great care of Daniel, and the knowledgeable and caring doctors we have. I could make a much longer list, but it would take too much time right now. If I can figure it out, I may post some pictures later.

Quiet as mouse.

Daniel is still doing well since surgery. He is breathing so much smoother. We never realize how loud his breathing is, now that the pressure is off his brain stem he is quiet as a mouse. We have to keep checking on him to see if he's awake. We go back for a follow up appt. next week.

I follow this blog called www.mycharmingkids.net . It is an awsome blog of a mom who just had this miracle baby today named Stellan. He was diagnosed with a heart problem in early pregnancy and not sure what the outcome would be. But praise God he is here as of this morning and doing well. Check out her blog, she is a woman of faith and has many encouraging words to say.

Going home today!!!

We will be heading home in a couple of hours. Daniel is getting his last dose of IV antibiotic right now. When Dr. J comes in and gives us the go ahead we will be on our way home. Daniel had a very good night. He only needed morphine one time and then we have kept up with tylenol. Daniel seems to be very comfortable, thankfully. Maybe we can stay away from the hospital for awhile now. Happy Fall ya'll and enjoy the weather.

Daniel is doing well!

Daniel's surgery went well today. It only took 1 1/2 hours to get line placement. Dr. J said he removed fiberous tissue and bone from the base of Daniel's skull. This should relieve pressure and make him much more comfortable. If all goes well we may be able to go home tommorow.

Surgery Tomorrow.

We will be heading to the hospital tomorrow morning at 6am. Surgery is at 8am. Our biggest concern is IV placement. Since this is a big surgery, with possible blood loss, Daniel will need 3 IV lines. One regular IV, one for a back up, and one arterial line for internal blood pressure readings. The last time Daniel had this surgery it took 2 days for line placements, hopefully this will not be the case tomorrow. We are praying the nurses have good aim in the morning and that the surgery goes smoothly. Dr. J is the best, he seems to always hit the right spot to make Daniel feel his best. I will update tomorrow.

Surgery on Monday

Daniel is scheduled to have surgery on Monday morning the 27th. Dr. J will be removing the bone that is growing back in his skull. If everything goes well, we should be home in a couple of days after the surgery. Thank you for praying, will update after surgery.

Surgery again.

We went to see Dr. J today to read the results of the CT scan. Daniel's man made holes in his skull are filling in with bone. It seems like the lower one closer to the brain stem is what has "islands of bone" forming in the area. Needless to say that is what is causing the starting of the symptoms he is having. We will have surgery sometime next week. Will update more later. If you happen to be reading please leave a comment sometime. Thanks for caring.

Sleepless in South Carolina

When will the roller coaster slow down? We are finally recovering from our last surgery with the vesicostomy. Now we are concerned about Daniel's skull trying to fill in again. I'm sure this requires some explaining. Daniel's intial problem , the encephalocele, caused brain damage. Evidently the part of Daniel's brain that should tell his skull bone to stop closing up doesn't work. Our neurosurgeon, Dr. J, (one of the best doctors we know) is going to review the CT scan we had done today at tomorrow's appt. with him. Daniel has several man made soft spots to keep his brain from having pressure in areas like his brain stem. When these openings start to fill back in with bone, fibrous tissue, or scar tissue he starts to have symptoms. Some of these include, Darth Vader type breathing, decrease swallowing, which causes major slobber production, uncontrollable gagging(because of the extra slobber), and less sleep than usual. Daniel is having all of the above. We believe we are only in the beginning stages of this. Daniel has this happen about every year to year half and Dr. J has to go in and remove the part of the skull or tissue that is causing the problem. We have now gone 1 year and 7 months, which is our longest stretch yet. Hopefully we will get some clear answers tomorrow.

In the mean time we are trying to catch zzzz's when we can. Daniel seems to like to stay up at night and be quiet and calm during the day when there are other things to do. So, if you can find a way to bank up on sleeping, deposit some our way, please.

High and Dry and Steriods

Well, our doctors appt went well. What a difference a weekend can make along with prescription steroid cream. Daniel is finally feeling comfortable from his vesicostomy surgery. The wound looks great and the skin around is looking wonderful too. We also found new diapers that will help keep Daniel dry and that will keep us and our house dry as well. They are called Attends and they will go up high enough to were the opening to Daniel's new bladder comes out into the diaper without leaking. Hopefully we will get them soon. We have a stash from the Family Connection loaner closet for now until the new ones come in.
Now we have to deal with our little Sam dog that has horrific allergies to who knows what. He's starting to look like a Chinese Crested with all the hair he is missing. He takes about as much medication as Daniel does. Poor little guy can't keep from scratching, can't blame him though, who can resist scratching when you have an itch. Hopefully some good ole steroids will help him too!

Flood Gate is Open!!!

We are having some sleepless nights at our house. Daniel is still adjusting to his newly rerouted bladder, and so are we. Hopefully things will be better soon. Right now at this point we are washing more blankets, pillows, and clothes than we would like. It's like someone has opened the flood gates. We went from not so much to way to much. Thank goodness urine is considered to be sterile, our house should be almost completely sterilized by the end of the week. We go back to the doctor on Friday. Maybe they will enlighten us on how to help with our new constant flow of urine. Until then stay well and stay dry.