**UPDATE** February 3, 2005 - Please if you could have everyone say a special prayer for Daniel tomorrow for our trip to the renal transplant clinic. I hope so much we can get him on the active list. He has been feeling much better the last few weeks. I think we all know why. If God thinks it's time for him to go on the list then it will happen. Joe ~~ The purer the love the purer the child.

**UPDATE** February 6, 2005 - Just a quick update on Daniel. The trip to Boston was a mess with Daniel coming down ill the night before and vomiting several times on the way there. I was thinking that his feeling better these last few weeks was a sign he was improving but now I feel as though God had just given us a little break and by him getting sick like this was a good way to show the doctors in Boston how thing really are. I was so worried that his blood work was so bad that I stayed locally until I knew what his critical blood counts were. Things are bad, but his potassium only went up a little so we did not have to treat him for his potassium being to high.

The good news was that they feel due to his blood counts and his overall failing health they will more than likely place him on the high priority list as soon as Thursday. We still have to wait for the phosphates and P.T.H. to come back, which wont be back until Thursday. I really feel that with how consistent I have been monitoring him and staying right on top of him everytime he puts a bite of anything in his mouth that everything will be a go as of Thursday.

The hair on the back of my neck has been standing up and for some unexplained reason ( God working ) my brain and body has shifted into high gear. In other words IT'S TIME!!!!!

I received some very promising news from the head of Nephrology at Children's Hospital. He informed me new laws that were passed in November and became affective in January that takes organs that were previously unavailable to children and places those organs in the donor pool for children on the high priority list. That is great news for us. He went as far as saying that a lot of children who have been waiting for sometime now should all be receiving transplants across the country. I was totally unaware of this law and have not found any information about it yet . He also went as far to say that he feels very comfortable with being able to decline ,or pass up organs for Daniel in order for him to receive a better match. He said that an older person's organ such as someone in their 50's or 60's who donates their organs will more then likely not be placed into a child now. They will use that organ for an adult within the same age range who has been waiting and use a kidney from a healthier younger person for Daniel. The doctor really seems very positive about the changes and said that a lot of children that were farther down on the list will all be moved up. He did say that there are a few children in the northeast area that are higher on the list than Daniel who are now in a life and death situation who will of course be first in line. Everyone should pray that those poor little one will get another chance at life, and soon.

It is so hard at times to live this life. But I feel as though God has given me new strength lately . Once again I feel ready to take this on . I just thank him for the coffee break he gave me -- LOL. Oh yes, another thing , The hospital has also finally got their transplant staff filled up and running. You know I had recently expressed my concerns about how the person who took over several jobs at once due to others moving on to other positions was overworked. Well there is a another new transplant coordinator, Clinical nurse, and support staff . One person had been doing it all and now she can go back to her administrative duties of transplant administrator. I think it is. Also she is in charge of the dialysis program . I am am a little relieved about this.

I have to e-mail the coordinator (who has actually given me her personal Phone #) and give her a list of my daily schedule with every phone # and address where I will be. I can no longer go anywhere without them being able to get hold of me. They suggested that I get a cell phone but I just don't see how I can do that. I am going to check into beeper services and see if anyone services this area. I was told it would be a real good idea if I had emergency bags packed and ready to go. So it looks like as of Thursday we will be placed at the top of the Database and must be ready at all times after Thursday the 10th.

Sue can you believe this is happening. It won't be long now. I am very nervous and very emotional right now.. ( Stay away from the coffee)

Over the last week I had such an incredible increase of energy, before I even went to Boston. I have no doubt that the Lord has been, and will continue to provide me with everything we need. I am sure of it. It might not be what I think I need but it will be what He Knows we need. No Matter what .. you know that the power of prayer is so so powerful . It directs the good, positive energy, that is the spirit of the lord, and breaks through all the negative things in our world. The more people praying the more powerful the Lord's spirit will be. It is time now, My little boy needs the will of God now , More then ever. Me and Kelley feel that we don't want to burden our friends near Boston due to serious health issues they're experiencing, if at all possible. They said we can still stay there bless their hearts but if anyone can contact me with a place for us to stay in the Boston area for up to two months I would really appreciate it. If ever we needed help, Sue, the time is now. If there is any information I need to give you for Daniel's web page or if you have any suggestions please let me know . I have to get it in gear now. Joe and Family

**UPDATE** February 16, 2005 - Hi Sue, am in a real hurry, Daniel became very ill today so i took him to his pediatritian and we ran some blood work on him today. His blood counts ,all of them, have all gone up -- some of them significantly -- since our trip to Boston 2 weeks ago. The local Doc called Boston and the message was to monitor him closely. Well tonight he has become very very ill and won't stop vomiting. I just got off the phone with his doc in Boston and they want him there immediately, I am leaving now, 9:42 pm, and I am rushing him to Boston. I will be in touch when I can. Keep the prayers coming. Love ya Joe

The Daniel Reid Fund

NOTE FROM SUE - Thursday, February 17th: Joe called tonight. The three hour drive took just a tad over two hours! Joe said there was little traffic on the road due to the hour, and he hit all the green lights. Little Daniel is now a patient at Boston Children's Hospital. Joe said they arrived about 2 a.m. and it wasn't until 4 P.M. (yes, that is 4 in the AFTERNOON) that they were able to find a bed for him. The hospital is full!

Daniel has been pretty quiet since they began an IV and medicating him for his ongoing nausea and vomiting. I even talked to Daniel, and his little voice sounded so sweet, but weak. I said, "So are you feeling better today than you did yesterday," and his honest little response was, "Well, not much but a little."

Joe said there is a team meeting tomorrow that will determine the next step. He is fairly certain they will start Daniel on hemodialysis at this point. The transplant itself may only be 2-4 weeks away, so he wouldn't have to be on dialysis too long. Whether Daniel will stay at Boston during this time, since he's on the donor list, Joe won't know until tomorrow.

Soooooooo, that's the latest. Some cards and a package have arrived at Daniel's grandpa's home, and they will be bringing them to him on Saturday (his birthday) -- I'm sure Daniel will be so excited. For those of you who have been following Daniel for the past four years, you may recall that he spent his birthday at the hospital four years ago, too. Something about the month of February for this little guy!

After I hear from Joe tomorrow, I'll send another note out. I told Daniel that I loved him, and he said, "I love you, too." Then I said, "And I want you to know that I am praying for you," and he said, "That's nice." And then I said, "And lots and lots of other people are praying for you, too." His voice got excited, and he said, "That's REALLY nice, thank you!"

Joe is grateful, as well, for all the prayer support.

Friday add-on: Joe called to say Daniel was being discharged for home. He is on the donor list -- that is GOOD NEWS. And he has to return every Friday to Boston Children's until a donor kidney is found. More details probably later today after Joe gets home and Daniel is settled.

**UPDATE** February 18, 2005 (12:05 AM CST) -- Hi Sue, We were discharged around 3:45 today just in time to catch rush hour. I went to our friends' home in N.H. to see how Daniel was going to do, and to wait for the traffic to clear up. I left to come home around 6:30 but the traffic was real bad. Then it finally dawned on me why., I realized that it is winter break for the schools in the area and everyone was headed to the ski slopes. I seemed to take forever to get home and Daniel got sick again and vomited once. So there I was again wondering what to do out in the middle of the Green mountains of Vermont with no signal on my cell, in a snow squall at 10:30 at night. I was very reluctant to leave Salem at all I wish I stayed there, but Daniel wanted to come home for his birthday especially knowing he had cards and a package at his grandparents house. I stayed where I was for a little while to wait and see if he vomited again but he didn't. I shouldn't have given him anything to eat before I left but he was hungry.

It is so ironic that for a long time now it has been very hard to get Daniel to eat anything and he is never hungry , but every time he vomited over the last few days within minutes he complained that he was so hungry. But sadly I cant give him much to eat because he feels nauseated every time he eats. They gave him some meds through an I.V. that worked real well for him and he kept everything down in the hospital even 15 Hours after they stopped giving it to him.

Boy am I tired. I am heading to bed in a minute but wanted to let you know we are home for now. Very reluctantly I might add. I am so worried about him . I do not like the idea of being so far away from Boston. I have very mixed feelings about our decision to not start him on dialysis. We came very close to starting but after a good conference with everyone involved we decided to try and wait a little longer. The reason being is that he is still producing urine. one of his doctors told me that Daniel has the highest blood counts they have ever seen in a child how is still producing urine. So this means his blood pressure is somewhat stable as he is still able to regulate his fluids as long as he doesn't keep vomiting.

The real encouraging news is that he definitely as of this morning on the priority list with only a couple of emergency classified kids in front of him. That is for the whole north east not just Boston if I under stood it correctly. But a lot has changed recently on organ distribution and how children are placed on the waiting list that I am a little confused still.

Daniel is still very very ill. I am so worried about him. But as sick as he is he wanted to stop by Pooh Pas' house ( My Mom ) and read his cards and get his package. I'll tell ya it sure put a bright rosy smile on his face to open those cards but he insisted on waiting until the day of his birthday to open his package from Tennessee ( thank you) He received a very nice card with something special inside ( Postmarked from Houston ) with a note to him saying it was to take his dad out to lunch with . He looked at me and said "Dad I hope you're not hungry tomorrow. Can you take me to the store instead?" LOL I assured him that I believe that our dog Baloo had plenty of food he could share with me in case I was starving. He went to bed clinging to the money, sleeping with one eye open with the burglar alarm next to him ( that would be Baloo )

Well I have got to get some rest. My whole body aches from this tension. I went 46 hours without sleep . I did sleep a few hours last night with one eye open and one hand on him. I will never let him out of my grasp until he is over this and well on the road to a healthier and happier life. The doctors are pretty impressed with how far he's made it with his blood counts the way they are and still being able to produce urine. I have no doubt its all God's doing. It was about 4 years ago that Albany med started him on dialysis when his B.U.N was around 70 and his creatnine was 4.0. When I took him into the E.R. early Thursday morning his B.U.N. was 150 and his creatnine was 12.4. A kid his age and weight should be around 1.0 and B.U.N. no higher then 30. He's still not on dialysis. Now is that a miracle or what. I was told by Dr. Harmon that Daniel has no reserves left . We are clinging on the edge of dialysis and I must now be in Boston once a week and keep a close eye on him .

He will no longer be going to school probably for the rest of this year. I just hope and pray that something comes through soon. We do not want to have to put him on hemo dialysis. Kelley has all the bags packed and we are ready to go when we get that call. In the mean time all I can do is hope and pray and ask for everyone who hears his story to pray for him as well.

I thank everyone fro praying and especially that the kind people who made such a sick child smile on his Birthday. We love you much ~~ Joe, Kelley, Michael, Emily, Rebekah, and the sleeping Kid with money in his hand, having visions of a new Xbox game in his dreams with an angel keeping guard.

GUESS WHOSE BIRTHDAY IS TODAY?