Happy almost August!!

Hello All-

Carson is doing well, he got over his cold/allergies. After his extra secretions were gone he had a slight asthma attack and needed some prednisone to get over it. All is great.

Carson has been gaining one pound every two weeks for the last two months. With a little twisting of Carson's Doctors' arms, they prescribed Lasix for one week. This was going to tell us if his weight gain was from water retention or too many calories. With in the one week of being on the diuretic, Carson lost a few ounces as well as cm from his feet and ankles! It was working, so he is now on Lasix twice a day. We will see were we go from here.

We are also getting ready for school, yes that is right, school. Carson will be going to Harmony Early Childhood Center starting in the middle of August. As Carson is getting close to becoming 3 his current therapy services he will age out off, they stop at 3 years old. Carson will be in a classroom with other kids and will get all of his therapies at school. His nurse, David, from here at home, will go with him to take care of him. They will go on the bus to and from school, hours are Mon thru Thurs, 820 to 1120. We feel we owe Carson and the school district the chance to see if this works for all parties. If it does not, the therapists from the school will come to the home to work with him. I am very nervous about letting Carson out of the house and sending him to school, but we have to give him a chance....

We will be updating this blog again this week with Carson's birthday party details!!! FYI Sat, August 14 at 500 pm. More to come.

Happy Fourth of July!

We had a great weekend. The Bowman's were in town and we all went to the T-bones baseball game on Saturday night and had a blast. Carson was very awake with his eyes wide open, he also loved the fireworks are the end. What a great outing, it was well worth it. Although now we are paying for it, Carson is very cruddy and wheezing. On Sunday night we did some sparklers in the back yard until the rain finally pushed us inside.

Carson has been good the last month, holding is own, he has been back on top of the roller coaster. We hope to get over this cold/allergies soon and be back on top.

Enjoy the pictures and videos.

Happy Memorial day, too many pictures and an update...

Thank you to all those out there who have and still are fighting for our freedom.

We are all enjoying an extra day at home and just relaxing.

Carson has been well lately. We have seen a few extra seizures with this last full moon, but seem to be back to normal now. Last week we had several tests run on his blood to check all kinds of things. We were mainly worried about his extra water retention, edema. Carson had gained another pound in 2 weeks and seemed to be more puffy. Checking his blood was able to tell us if he needed a diuretic (to make him pee more) or to add more protein (sometimes if the body doesn't have enough protein the water does not move like it should). While we were taking some blood we decided to run all the tests we could. CBC, BMP, Chem 7, liver and kidney function. So any way, to our surprise all his tests came back normal! His bilirubin was a little low, but nothing to be concerned with right now. No meds are needed for his extra fluid, to help get rid of it we are going to do more movement and massaging. We are so happy to hear this great news!!

Just me and my dad.
These kids wear me out!
But I love them.

Cool dinosaur, thanks for sharing with me.

Matthew helping brush my teeth.
Look how big I am!
Me and my new shoes.
I am catching up to my mom.
So cute.
These are my new Crocs...
Look out, they may bite!
Wow, look at these rolls.
Big yawn.
Hair cut with Aunt Jen.
First time using the buzzer, no too sure of this.
But all is good when all said and done.
I was telling Aunt Jen all about it.

Me and my cousins.
Yea, that is the spot.

Happy Memorial Day

Thank you to all those out there who have and still are fighting for our freedom.

We are all enjoying an extra day at home and just relaxing.

Carson has been well lately. We have seen a few extra seizures with this last full moon, but seem to be back to normal now. Last week we had several tests run on his blood to check all kinds of things. We were mainly worried about his extra water retention, edema. Carson had gained another pound in 2 weeks and seemed to be more puffy. Checking his blood was able to tell us if he needed a diuretic (to make him pee more) or to add more protein (sometimes if the body doesn't have enough protein the water does not move like it should). While we were taking some blood we decided to run all the tests we could. CBC, BMP, Chem 7, liver and kidney function. So any way, to our surprise all his tests came back normal! His bilirubin was a little low, but nothing to be concerned with right now. No meds are needed for his extra fluid, to help get rid of it we are going to do more movement and massaging. We are so happy to hear this great news!!

More ups and downs continue...

The ups and downs have been continuing for Carson and us. The first 4 weeks of April were very rough, he had a hard time getting used to the increased Phenobarbital. He slept pretty much all of those 4 weeks, he had a few hours a day when he was awake. The last week of April Carson was awake the majority of the days, alert and talkative. It was great to play with him! Carson's body temp has been staying pretty close to the 97 mark, our new normal.(very different from last year, when he would get hot very easily) Carson has also had two episodes of very low bradycardia (heart rate). One episode was in the middle of April, his heart rate went to 38 beats per minute, yes 38. This was a very scary moment, but as soon as he was aroused his heart rate came right back up. The second episode was last Saturday (May 1), it dropped to 48 and again as soon as we aroused him, it came back up. All we can attribute this to is he disease and body weakness (due to inactivity and meds), his heart beat has gotten weaker and runs normally in the 80's. To give you a point of reference, a typical boy child his age runs 125 beats per minute. We are still living a day at a time, and loving every minute we have.

OK, OK, take a deep breath....on a lighter note here is a funny story that happened to me over the weekend.

I was doing my usual grocery shopping at a local grocery store. As I was waiting in line, the woman in front of me was paying, the checker being a young boy bent down to wipe/pick his nose with a little piece of paper towel (clearly too small for the job). I was waiting for what a 'normal' person would do, use hand sanitizer! But he did not, all I could think about was that he was then going to touch all my groceries...oh no he was not. I quickly go the sanitizer out of my purse and asked, "Did you use some hand sanitizer (waving mine in the air) after what you just did (gesturing picking my nose)?" The pore boy got all embarrassed and flustered, he had no sanitizer at his check out station, he had the ask the next checker for some. All the while, the sacker, clearly a friend, trying to contain his laughter! I then went on to say that I had a fragile boy at home and I do not need to take any more germs home than I needed. So moral of the story, where have your grocery checkers hands been before they touch all your groceries?

Have a great day and keep us in your prayers...keep looking at the bright side, Carson was sent to us for a reason and has been our blessing!

Happy Easter 2010

Here are some pictures from Easter. We went to Nana and Papa's for a few hours to visit with family and have an Easter feast.

The Bowman family.

Carson with Great Aunt Stephanie and Great Uncle Ruben.
Carson with Great Grandma Latshaw.
Carson with Great Aunt Karen.
Carson with Great Aunt Karen and Great Uncle Sam.
Carson with Great Grandma Latshaw.
Carson with Aunt Jen.
Here are the original day care kids... all getting so big!!

Addy, Henry, Carson and Matthew.

Rough month....

Carson has really been keeping us guessing a lot the past month, and not the good kind of guessing.

The first situation is that Carson's body temperature dropped, there were two days where he went down to 93-94 degrees. (Normal is 98.9. 93 borders on Hypothermia). We were very scared. Jeff came home from work to hold him, we had his stocking hat on, and several blankets from the dryer to warm him up. He has since been holding steady around 97. From what the doctors can tell us, the reason for this temperature drop is that his disease is progressing....

The second situation has been with in the past few days. He has been having a lot of seizures, they have been clusters of 'little' seizures and the clusters have been back to back. We don't think he got any sleep on Sunday night, so on Monday night we gave him Roxicet (pain med) to help him sleep and try to break the cycle of his seizures. Tuesday morning he was a little better but by the afternoon he was bad again and we had to give him two doses of Diastat (Valium). We were expecting for that to knock him out...nope....he did not go to sleep until 10:00 pm when we all got in bed. (Yes you can say it, he is SPOILED! But well deserved.) Today, Wednesday, Carson has still been having a lot of seizures, but have not been all back to back. We are not sure if we will need another Diastat tonight, will have to see how it goes....

The third situation is not about Carson. There is another family going through what we did 2 years ago. There 4 month old son was diagnosed with Menkes two weeks ago, they live less than 5 miles away. Jeff and I have been in contact with them, actually they came over to our house a week and a half ago. We are glad that we are available to help support them and help with questions they have. We will be seeing them in the future again and hope to become friends....

That is about all I have right now...I am sure I am forgetting something.