Happy New Year 2009!

Hope you all have your new year's resolutions all lined up. Only 1/2 a day left to decide. I have given up on those. Every year I think I might try to lose weight, but my clothes still fit the same. This year I would like to reflect on what I am thankful for in the past year.

I am first of all thankful for my relationship with my Savior Jesus, and my faith that He takes care of all things, takes the pressure off. Knowing you can't do it all and knowing you don't have to is such a blessing. I am thankful for my family, we have had another year with Daniel, he will be 11 years old Jan. 6th, WOW. Daniel had less surgeries and hospital visits compared to last year, I think. He now has comfort with his bladder, thanks to Dr. Teague & Terri. Overall Daniel is doing really well. Michael is still a wonderful student and soccer player. Jeff has job security with Publix Supermarkets. People are eating out less because of the bad economy and eating at home more, which equals to buying more groceries.

We moved into a new wheelchair friendly home, very thankful for that, makes life much easier to take care of Daniel and our backs. My parents and Granny moved within 10 miles of us, from FL. It has been wonderful being able to see them weekly. Michael has enjoyed having them close by, another opportunity to get away from us once in awhile.

I know there is a whole lot more to be thankful for so here goes a quick list:

Friends, health,
doctors, family, family, family,
church, nice December weather,
nurses,
work/job,
a van with a lift

Hope you all have a great New Year!

Tis the Season!

Tis the season to try not to eat too many cookies, not spend too much money, not scream too much in your car while trying to drive with all the extra traffic. I hope you all are remembering the real reason for Christmas. The birth of our Savior, Jesus Christ. Remember it doesn't matter if you get just the right gift or not. Give the gift of the true Christmas story, this will last a lifetime. Wishing everyone a very Merry Christmas.

Lazy Blogger.

I seemed to have fallen off the blog wagon. I have been reading several blogs while ignoring my own. Daniel is doing well, I won't go any further with that, when I start to brag on him something seem to always happen. But he is such a sweet lovable boy. I cannot believe he will be 11 years old next month. I am so thankful for these 11 years and what is has taught us as a family.
I have not even started with Christmas shopping yet. I figure the closer it gets, the lower the prices go. And if that doesn't work there's always gift cards. I hope everyone is enjoying the wonderful cooler weather. I am glad not to be sweaty all the time. I'm sure you wanted to know about my perspiration problem. I will definitely get back on before Christmas. Bye.

Happy 15 Anniversary!

Fifteen years ago I don't think I could have forseen my life as a wife of 15 years. Yes, I saw myself as a wife, but not with all the life experiences my husband and I have shared over the past 15 years. We have had quite the journey. I am thankful and richly blessed to have such an adoring husband. Jeff is an outstanding husband. No, he is not perfect and niether am I, but as far as husbands go, I pretty much won the lottery with this one.
We have had many up's and down's over the years, more than the typical marriage. We are blessed with 2 wonderful boys.I believe after all these life experiences we have shared together our marriage has grown stronger. Of course this did not occur all by itself. Our faith in our Lord Jesus Christ has seen us through all of our trials over the years. He has taught us understanding, patience, and unconditional love. His love for us has seen us through the difficult times, and His blessings have made the good times that much richer. Today I thank Him for His love and presence in our lives. I look forward to many, many more years together.

And we know that in all things God works for the good of those who love Him. Romans 8:28

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.

Surgery update

Well, we finally made the BIG decision to have the bladder surgery. On Friday we went in and saw Dr. Julius Teague and had our surgery for the vesicostomy. We stayed over one night and came home about 3pm on Saturday. The surgery went well, things are definitely flowing. We will probably have to change diapers more often, but Daniel should be much more comfortable after the surgery pain is gone. We were told that Daniel being able to urinate for 10 years on his own was pretty good. Many kids like him that are born with a neural tube defect (encephalocele) have problems with their bladders.

Botox : Not just for Faces!!

We are getting settled back into the school everyday, soccer 3 times a week and keeping up with work. The weather has been hot this summer. We only camped 1 time this summer. My husband and I had a discussion about this not to long ago. We sure miss camping but don't seem to find the time to go. We discovered the main reason is that we would miss church on Sunday. We decided that going to church is more important than a camping trip. The messages we get from God will be useful to us for spending an eternity with our Lord and Savior, but the camping trip will be fun for the moment. We are okay with missing camping, although we are hoping to go camping one more time during the week before winter comes and it's too cold.

Jeff and I are having a hard time making a big decision lately. Daniel is getting really, really close to needing a pretty major surgery on his bladder. Daniel has been diagnosed with a neurogenic bladder(due to the encephalocele). This means his brain is not telling his bladder to work properly. He is able to void, but not completely. This builds up sediment in the bladder and causes stones to produce.
Daniel can pass these stones, but they are very painful. If they become multiplied without passing he has urine retention, which also makes his bladder spasm and painful to urinate. We have been doing botox on the bladder every 8 weeks to relax the bladder and hopefully make things easier to pass. Some of these have been effective. Although lately the botox doesn't seem to be giving enough relief to Daniel. We are praying we pick the right surgery for Daniel to give him comfort and relief. He is at the point of hurting almost every time he voids. He is not sleeping well and that = us not sleeping well either. We are thankful that Daniel has been able to urinate on his own for 10 years even with the diagnosis of an encephalocele. I know this surgery is inevitable it's just finding the right time to decide when enough botox is enough. The risk of putting him under to do this procedure every 8 weeks is not a good solid answer in my book if we are keeping Daniel's comfort in our decision making. Dear Lord, please help us to make the right decision. Amen

Been a long time!

It's strange how time passes so quickly. I am trying to get on a routine to blog more often. I seem to get caught up in the daily tasks at hand that don't always seem to get caught up. School has started back and routine is more established.

Michael has started soccer back for club and school. Which means practice 3 days a week plus games. Thankfully both teams he plays on, practice is that same day back to back. Daniel will be back on his homebound school schedule for therapy and continues pool therapy. We are going to surgery every 8 weeks for botox injections in his bladder and cystiscope bladder clean out.
We may have to make a decision in the near future to reroute his bladder, which is major surgery. Due to brain damage from his encephalocele his brain is not telling his bladder to empty properly. We pray we will make the right decision for Daniel's comfort.

I am off to a soccer tournament today 12pm to 7pm. I will hopefully blog sooner next time.

Back to Reality, UGH!

Today we are getting back into our routine that we know as "normal". We just came back from vacation. We were given a second opportunity to go to a place called Camp New Hope (http://www.campnewhopenc.com/). This place is run by some incredible people that dedicate this place to families that have children with terminal illness or severe disabilities. The most unbelievable thing is that there is no charge to come here. They provide the lodge, the groceries, and all their land for the family for one week. We only got into our car one time the whole week, to get pictures developed before we got home. What a time of respite for us, to be able to spend time together as a family without phones, therapy, doctor's appt, and phones (did I say that twice). That is because being able to find 2 hours to take a nap without the phone ringing was priceless.
Our week consisted of alot of doing nothing(wonderful), playing in the New River, watching the Euro Cup Soccer games at 2:30pm everyday, riding the bob cat's (open air mini trucks) all over the 170 acres of mountains we were on, playing lot's of horseshoes, and eating great food.
Daniel had a road named after him for the week, after the week was over we were to take his sign home. Now where we park his wheelchair, when not in use, hangs a Daniel Rd. sign. Daniel also had a bird house to hang at Camp New Hope with his name burned in the bottom. These people are incredible, words cannot express how wonderful and beautiful this place is, pictures do not even give justice to the beauty of nature that surrounds you the moment you pass through that camp gate.
But, now back to reality. Back to routine, therapy, working, and cleaning house. Daniel did awesome on the trip, he loves being outdoors. Our average temp was 73 degrees during they day, you can't beat that, especially coming from home with temps around 100. Thank you Mark and Will for giving to families and Thank you Randy for all you do to keep this wonderful place running. We look forward to seeing you again.

Disabilities Awareness Walk 2008

Today is our annual Disabilities Awareness Walk. I am thrilled to say that Daniel's grandparents will be attending for the first time. It should be a great time. The weather is supposed to be beautiful, sunny and around 78 degrees. Today we will celebrate our children with disabilities. I know in the political world today we might not be using the appropriate language "disabilities". But guess what folks, that what it is and we are going to celebrate them today. God put our children with us for a reason. It may be to teach us patience, kindness, unconditional love, taking notice of lifes miracles "even if they're small ones", appreciating what God has done in our life, even if we are going through some sort of trial. Let me tell you, I have learned all of these attributes and more from our little miracle, "Daniel". Despite being condemned to die, one, two, three times or more now, we have little Daniel, now 10 years old. We are better people because of Daniel. Daniel has taught us much more than he could ever express verbally to us. We now know that just because it seems like there is no light at the end of a tunnel, We will get through it with God's help.
If you sit back and reflect on your life you will take notice of how much we have to be thankful for. Thanks, celebrate the accomplishments of our children today.

Goin' Campin'

Today we are heading out to go camping. We have not camped in over a year. We didn't have much time to or it was just so dogone hot last year. So, today we will venture out (approximatly 16miles from home) to go camping. This is a planned weekend of camping every year around friends of ours sweet little girls birthday. We have great fun sitting around enjoying the lake, food, and talking. It is nice to take time away from the hectic life of being at home. No therapy, no soccer game scheduled, no telemarketers on your phone. Take time to enjoy peace and quiet with your family, you might just like it!

Goin' Campin'

Starting Fresh!!

I had to do a new location for my blog. We moved and the lovely phone company decided to cancel our old email address rather than transfer our existing email along with our same phone #. So instead of spending one more hour on the phone (with someone I can't even understand) I decided to start fresh.
We have moved to a new house. God is sooooooooooo amazing! We found this "wheelchair friendly house", that is working wonderful for Daniel and his needs. We had not put our house on the market when we decided to go look at this house. It came to us on an email and looked great. We already said we would not look at any more homes until our current house had a contract on it. But, we didn't follow through with that statement. We looked at this new house, loved it, put a contract on it on a Sunday evening. Our realtor put our house on the market on Thursday, it was sold by Saturday. Yes, count them, 6 days from start to finish. Knowing the housing market today, we know in our hearts that this was a miracle from God. Everything just fell into place. God knew we could not handle a loooong drawn out process with everything that goes on in our lives.
We have also had a change recently in our lives that has been wonderful. My parents have moved to SC from FL. They are now only 13miles away. This will be great for the boys. It is nice to have family close by and have the help for last minute or unexpected things that seem to happen so frequently.