SEPTEMBER 28, 2008
Although Logan had a rough night by throwing a few temper-tantrums, his blood pressure stayed low again. And when morning came he was his normal self - friendly and playful. He's giggling more and is starting to talk again. No new words, but saying what he said before he got real sick. The doctors say if he keeps this up, going home in a few days is a real good possibility. I've put some new pictures up in the "In 5200 / Road to Recovery" gallery and I also put up a picture gallery of his birthday which should all be up.

Our media section will be getting some new pieces soon. The various articles that the Pioneer ran as well as a story that will run about a high school football game being dedicated to Logan. We're waiting for the pictures from that, but once we get them we'll put them up.

Again, please keep Liam's parents in your thought and prayers. He was another Hurler's baby who passed away on Thursday at 5 p.m. And keep your thoughts with Alyssa as well. From what their site says they will be giving her a Tracheotomy to help open up her upper airways. They also say she has fluid in her stomach, and around her lungs and heart. If the Tracheotomy doesn't work to open up the airways, they say there will be nothing else they can do to save her.

SEPTEMBER 27, 2008
Logan is finally off of his Nicardopine. This was the IV blood pressure. What this means is that if his blood pressure continues to stay low, he may be leaving this upcoming week. He is still doing really well - he's smiling and playing a lot more and we even got a response from him today. He was able to motion for "more" (which is putting your fingers from both hands together) which is a big thing because it's his first method of communication with us.

Unfortunately, Alyssa has been put back on the ventilator but she is on the road to engraftment. Today was the first day her ANC was above 500 - so while she is still in the PICU and they're figuring out why she had to be put back on the ventilator there is a chance that she may engraft in the next few days. Please keep her in your thoughts.

Liam Larrow, a Hurler's baby who was being treated in Florida, passed away at 5 p.m. on Thursday. Please keep his parents in your thoughts and prayers as they are going through a very rough time right now.

SEPTEMBER 24, 2008
Well, we have some good news today.  Logan's blood pressure has gone down enough that they were able to lower his Nicardapene drip.  He was on four, mililiters, I think is how they measure it, and they went down to three.  So that is really exciting news.  If it keeps up the way it is currently going me might be able to go home sometime next week, which would be fantastic. 

Please keep Alyssa in your prayers, she is having some setbacks in PICU, and she needs all the prayers she can get.  There is another family out there that needs our prayers.  There was a little boy named Manuel who was around Logan's age who died yesterday.  I'm sure right now his family could use all the prayers that people can think of.

The total amount raised for the benefit is in. $15,213! That amount is way over what we were expecting to be raised. Thanks to everyone who made this possible. This will take care of a lot of Logan's upcoming medical bills.

SEPTEMBER 23, 2008
You know the saying ... No news is good news. Logan's WBC continues to slowly go up - he's at about an 8.0 right now, which I believe is now a normal, healthy range. They still don't know when he'll be leaving 5200 because his blood pressure is still an issue. Infact, he's on three oral medicines, a patch and a IV drip to help with his blood pressure. The hope is to get him off the IV drip because he can't go home with the drip. So it's just a waiting game to get his blood pressure down. They lowered his steroids today so hopefully that will help a little bit. Other than that, nothing has been happening much.

From what I've read Alyssa is finally off the ventillator but they're keeping her in the PICU for the time being. Her WBC and ANC levels seem to be going up a little bit so let's hope they start to climb. Isiah has also been doing well. He's been needing oxygen at night so they've held off on his discharge. After he goes through three consecutive nights without oxygen they'll look into getting him ready for getting out of 5200. There is also a new Hurler's baby on the unit, Erin Biggs. She has begun her chemotherapy, so lets hope that she goes through the process without any road bumps. And finally another boy on the unit, Manuel, passed away this morning so keep his parents in your prayers.

Also, the final tally is up on the benefit. However, I want to do an animation like I did for the benefit. So I will plan on getting that up tomorrow afternoon.

SEPTEMBER 20, 2008
Friday was an excellent day in 5200. I'll save the best for last though. First is that Logan's birthday was finally celebrated and saw almost everyone from the wing come down and experience his first birthday. We even received presents from some of the patients on the wing - which we weren't expecting. Although Logan wanted nothing to do with the cake and ice cream, everyone else had some and there was enough of the cake left over so that the night crew could also (an intentional move by Marva)

Logan's attitude is also picking up. Ever since his Great Aunt Sharon and Great Uncle Howard came down for a visit he has been smiling more and playing more. He even popped out a "squinting smile" which he just started doing before he got really sick. On top of that, he slept in his crib all night for two nights in a row but not last night. He still has a tendency to be crabby but all around he is getting back to his old self.

His WBC jumped up five points today, so he is at 7.6 today. But now for the best news we received all day - and for a long time. On Monday, they drew his blood to see how much of his blood had the donor cells. They tested three specific things geared towards his recovery and the most important thing they were looking at, the T-Cells, were 95% donor cells. This is great news because according to the doctor that gave us the report - it is now under the assumption that his body is now producing that missing enzyme. They will do a test again in three to six months to look specifically for that enzyme but the fact that 95% of the cells he's now growing are donor cells is fantastic. The reason they don't look for that enzyme now is most likely because although the enzymes are being produced there isn't enough to get an accurate number. For example, if they drew today the report would most likely show a small amount because the enzyme has only been produced in his body for a few weeks.

When we first talked to the doctor about it he said he was thinking that 50 to 60% donor cells is an acceptable number ... so the fact that he's at 95% is excellent news. The other levels they looked for that they said weren't important were around the 75% donor cell range. And as time goes on the new cells will continue to take over until it is near 100%.

Had his cells been his and the donor cells hadn't taken over, then the transplant would have been a failure and we would have had to start over. But this is excellent news. It gives a great feeling that the transplant and everything was a success. The real test will come in about three to six months. If those come back with good numbers then we are in the clear.

SEPTEMBER 17, 2008
Logan has been doing very well lately.  He is starting to act more like himself, is playing, and now has his days and nights straightened out.  That's a huge development since now we get to sleep at night instead of Grandpa being awake with him the entire night.  All we have to do now is get him to sleep in his crib instead of having to be held the entire night.  Last night they gave him medicine to help him pee before we went to sleep, and when we woke up in the morning, I was completely covered in pee. That was a great experience, but it's not like I'm not used to being peed on.

Sadly, we won't be going home this week.  They have him on a blood pressure drip that can't be taken home, and so they now have to get him on an oral medication.  They also have a couple of other medicines that he has to be switched to orally.  So, they're thinking that he will be out probably late next week at the earliest.  It's very disappointing, but there's nothing we can do except wait.

Alyssa went into surgery yesterday where they put a tube into her stomach to help drain all the extra fluids from her body and that went well.  She seems to be doing well generally, so that's great.  Please, still pray for her and her parents.

On the Web front, I've taken down the sidebar counts. Logan seems to be at a steady 2.5ish for his WBC (he was 2.4 today) and his HGB and PLT's aren't as a big deal like they once were now that he's engrafted. I currently have no plans on any sidebar feature until they cement down a day for him to be released. They have completely taken him off of his pain drip so his "tower" looked a bit empty today. And it should probably be mentioned that the high blood pressure is most likely caused by the steroids - which they lower every two days, so hopefully as they lower he steroids, his blood pressure will go down.

SEPTEMBER 16, 2008
Big update today Web site-wise, but I'll get into that later. Logan has been doing fine, his counts have been going up and down but this is common. They did his weekly check of his ANC and it was 1,775 which is well over 500. His blood pressure is still an issue so the doctors may hold off on him going home until the following week if it doesn't resolve itself. Otherwise, he is completely on track. Today was apparently the first day that he's been acting more like himself. He was apparently more playful, active and threw out smiles like he used to. The second that I, Dad, showed up though he became grumpy. Go figure.

The benefit was a pretty good success. They don't have the definite total of how much was raised but we have an idea. Instead of spoiling it, I plan on doing a flash animation like I did to tease the benefit dinner because the amount that was raised was an amount we never thought it would be. Again, thanks to everyone who organized the event, it was a big success.

Good news is that Isiah has engrafted without getting hit by the brick wall that both Alyssa and Logan got hit with. His WBC is up in the 8.0 range, which is amazing and a really high number since his transplant, which was less than three weeks ago. Alyssa is still hanging in there. Unfortunately, she is going into surgery tomorrow (today) to put a catheter in her stomach to get rid of the retained water. And she also got more cord blood to try and boost her engraftment. She is still at .4 for a WBC with less than 200ANC. So keep her in her thoughts.

On the Web front, you'll notice that there are a few minor changes. I've taken down all the benefit information since it's passed. Another change is that the MPS Links to the right has been changed to Hurler's Kids and I've put their pictures to go with their names. There are three new videos up in the videos section. One was the DVD that played at the benefit and the other two were recorded right before he got real sick. And there are tons of new pictures in the rennovated pictures section. There are a few new pictures of Logan and about 24 pictures from the benefit. All pictures are now organized by category and each category only has one index page. However, each image has a thumbnail version of it. The end result should be easier access to pictures for the readers without the large load time. To get a bit more technical, when you accessed the old index pages it was actually loading the actual picture which is near 100KB everytime. The thumbnail versions are about 2K so the load time for the pictures should be much quicker. And finally, I've changed the way the updates were done. They're now filed by month instead of weeks. This was done on my end just to make the maintenance a bit easier.

SEPTEMBER 13, 2008
His WBC made a jump today after two consecutive days of a pretty dramatic drop. It had originally gone from (basically) 3.0 to 2.0 to 1.0 but now it jumped back up to 2.2. The fluctuation of up and down is pretty common but if it had dropped again to around 0.5 the doctors said they may have been a little concerned about that.

They are still aiming for a Friday discharge. The main issue is getting him off his pain drip (which he isn't getting a constant flow it's just by button press) and his blood pressure medication. If he can't get off those two then he can't be discharged for the most part.

He is eating again - it's not much, but we've been feeding him about three to four ounces of formula every six to eight hours. We're (I mean me) a little worried about giving him too much because his stomach could still be irritated and could throw it back up. But if he does get his appetite back, it's one less hurdle he has to face when he's discharged.

Otherwise his attitude is still about the same. They lowered his steroids and will lower them again on Monday probably but I'm updating the site at 5 a.m. while he's in the crib so obviously he's still not sleeping well. But he is starting to play with some of his toys some more so I'm hoping he'll return the way he was in the next week or so ... but it could take a couple months, they say.

The radio segment for the benefit was a success, and we were able to get the recording which is available on the media page. And speaking of the Web site, I may be doing some construction on it this weekend. I'm looking at changing the method for archiving updates, adding a few new links, redoing the sidebar and general cleanup of the site. Usually as things change, pages and graphics that are no longer used are left on the Web server. So every month or so I'll delete everything off the server and re-upload everything. This won't mean a loss in pictures, videos and updates or anything but there may be a five minute period where the site is not available. I'll probably do this when I update the site with the benefit results.

SEPTEMBER 11, 2008
Hi everyone.  Sorry we haven't written in the last couple of days but it has been pretty busy around here.  Mr. Logan has his schedule backwards, so he now sleeps during the day and is awake at night, that is, when he decides to sleep.  That is one thing that he isn't doing much of.  I think all together between last night and today he might have slept 4-5 hours max. 

What's even worse is the fact that he seems to be getting even more irritated and ornery every day that goes by.  The doctors are saying that this is due to the steroids and it should stop once they get him on a low enough dose.  However, they don't know which dose that would be, and they say it is going to take them a month or two to completely ween him off the steroids since they have to do it such a little bit at a time.

We did find out some very exciting news the other day though... they're planning on releasing Logan from the hospital next Friday!!  As you can imagine, we're very excited about this.  This doesn't mean that we're coming back to Michigan, but at least we won't be living in a hospital anymore.  More exciting news is that we might not have to stay here nearly as long as we thought, and we might actually be home for Christmas, which would be a blessing.  The only bad thing about that would be that we wouldn't be able to go to any large family gatherings as to Logan isn't allowed to go to places with a large group for about a year after transplant.  That would mean no clubhouse, and probably no going over to Uncle Chuck's house.

When Logan gets out there are very strict rules that we have to follow.  We will be responsible for all the medicine that he will be on, including IV's that he will have to have at some time during the day.  Another thing is that whenever he leaves the house he will have to wear a mask during the entire time.

Well, there is one thing that needs to be mentioned, and that is the benefit that is being held this weekend by our family with the help of wonderful people who gave donations.  There's a link to it above this message here where you can check out more.

Please keep dear little Alyssa in your thoughts and prayers.  I haven't been able to talk to her parents, but last I heard she was doing a little bit better.  Our love goes out to her and her family along with our prayers.

SEPTEMBER 8, 2008
Hey everyone, hope y'all are doing well. Logan thankfully is doing a little bit better everyday. Today he even let Grandma hold him, which was a pretty big deal. He still doesn't play or smile yet, but he's on his way there. Everyday he's up a little longer and is in a slightly better mood. Basically today though, he really liked Mommy and Grandpa.

However, tonight's blog isn't about Logan, it's about my adopted niece, Alyssa. Listen everyone, we need to pray for this little angel. She is in PICU right now, as I have said before, but she is not doing well. She is bleeding in her lungs and they don't know why. So we need everyone out there tonight or tomorrow, whenever you read this, to take a minute and say a prayer for her. She is such a sweet little girl and she just, well, just has to pull through this okay. Please also pray for her parents and grandparents because we can all imagine what it would be like to be in their shoes and they need our prayers too. They need every good thought going out to them that we can possibly muster up, and get on there over to their guestbook and show them how much we're thinking of them. Love all of you out there reading this. Good night.

SEPTEMBER 7, 2008
So, today was the day that we've been waiting for, Logan engrafted! We're so excited about it. We talked to the doctors about what happens next and he said that they start taking him off the IV meds and making them into oral meds. They'll do this, one med every day, over the course of the next week. Other than that, they are going to be coming down on his steroids and pain medication.

Basically, he said that we might be able to leave the hospital in about 2-3 weeks! I can't even explain how excited I am about that, to finally be out of the hospital. We would still have to take him back to the Children's Hospital everyday so that he can have his levels checked, but that isn't a big deal as long as he isn't in the hospital anymore.

On another good note, Logan is finally getting his first tooth! In fact, it might be more than one, but it's too hard to tell, but there's at least one.

Please keep praying for Alyssa. She is still in PICU, is on a ventilator, and is sedated all of the time. Her parents Lee and Laura could really use our prayers during this very difficult time in their lives, especially when she should be on track with Logan.

SEPTEMBER 7, 2008
According to nurses, Logan has officially engrafted. Now, although it's different with every kid, their goal now is to ween him off of his constant medications and look to getting him discharged. That entire process could take two weeks. But, it could be longer or could be shorter.

On Monday, they will be drawing his blood and sending it out to see if his new cells are the donor cells or his original cells. Obviously, the hope is that the cells will be 100% donor and if that's the case it is assumed that he now has that missing enzyme. But they won't know that for sure for another four months or so. But it's just a general idea that if his new cells are his donor cells then that missing enzyme is there.

Logan has been terribly, terribly clingy these past few days. Infact, I (Dave) have had to hold him all night so I've only been getting two or three hours of sleep a night. He generally begins to cry once we lift him up to put him in the crib. We're thinking that he's spoiled to being held so we have to fight that demon all over again. Infact, while updating this site and the sidebar counts, he's been letting me know that he's not happy sitting up in the bed with his toys. He's slowly making progress each day on getting back to normal. He now focuses on us, knows we're there and is also starting to play with his toys a little bit.

So I believe the new goal now is to ween him off his constant medication - like his pain medication. Now that he's engrafted, his engraftment pain should lessen since his body no longer has to work in super overdrive to make his cells.

Alyssa is still in the PICU but she's slowly getting better, from what I've read from their site. Please keep her and her parents in your thoughts.

SEPTEMBER 5, 2008
His White Blood Count stayed the same today making it the third consecutive day above 0.5 so they are now looking at his ANC. Even better news is that his first ANC count came back at over 500, easily. This means he is one day into the three ANC checks. This is very good news. If this keeps up, he will be considered engrafted by the end of the weekend. The general goal after kids engraft is to prepare them to be discharged. This differs from every kid, though, so there's no set path. It's the doctor's call. Obviously, they'll want to ween him off some of his medications, first - and that may take awhile.

Logan is doing a little bit better today. His attitude has been the same but he's staying awake longer. He gave Meg a long night last night and I'm thinking he'll give me a long night tonight as well. But the fact that he doesn't seem to be in constant pain and more awake and alert than yesterday is a good sign. They are also switching some medications so that they can get him off the steroids completely.

Apparently, the only person he's been liking lately is the person that is holding him. He could care less about anyone else not holding him, so I'm curious on how I'll get him in a bed to sleep. But luckily, I have some movies to tide me over if I have a long night.

I'll try to update his counts when we get them because we are very excited to see his counts now that he's leaning towards being engrafted so I'll update the counts when I get a chance.

Update: Please keep Alyssa in your thoughts. She was admitted to the PICU (Pediatric Intensive Care Unit) overnight, because she seems to be going through the exact breathing problems that Logan went through last week. She is now hooked up to a ventillator, according to their site. Also keep her parents in your thoughts as they are having a hard time dealing with this right now.

SEPTEMBER 4, 2008
Well, today wasn't the best birthday for Logan.  He is very sleepy most of the time, and so that is what he does.  However, when he is awake he isn't very happy and he acts scared of everything, even us.  His Elmo doll made him cry.  He cries when a person comes near him, however, he will let us hold him.  On the up side, his counts are up really high for as early in the process as he is, so that is something really positive.  He is also completely off oxygen.  It makes it much easier to carry him around without the oxygen tube having to be near him all the time. 

While before all he wanted was something to drink, he now wants absolutely nothing to do with any kind of drink, and he pushes it away before you can even get it to his lips.  He is more awake and aware too.  When he is awake, he looks at us instead of looking through us.  It feels so much better to see him like this compared to what he's been like, it was very scary there for awhile, terrifying actually.  There was even a few minutes where we were considering the possibility that he had gone blind, but it turned out to be the drugs he was on were making him act like he was blind.  He is slowly getting back to our Little Logan, and hopefully we'll be able to leave this place in a month or so.  Please everyone, keep little Isiah and Alyssa in their prayers, they're really helping us get through this.

On the Web front, I've added about 8 new pictures with more to come tomorrow. I've also just done some housekeeping on the site. Remember, if Logan's WBC is above 0.5 again tomorrow then we start looking at his ANC count, which they are saying is around 450. This is great news because the number they want is 500. So let's hope that the next week or so brings us good news but also don't be shocked or dissapointed if these numbers drop.

SEPTEMBER 3, 2008
Meg's taking care of Logan tonight, so I'm doing updates instead. I forgot to grab his reports to update the sidebar, but his White Blood Count is back at 0.7. Hopefully they'll stay that high for a few days so they can start looking at his ANC.

From what I was told, he did very well today. We found out that for the most part he needs no form of oxygen assistance except for when he's in a deep sleep. And I looked at all of the important levels, and everything looked good for the most part. The levels that they were looking at in his kidneys is back to normal, he's getting plenty of oxygen and his breathing is no longer labored or noisy. So hopefully the worst is behind us.

I guess he slept for the majority of the day. When he woke up though, you could tell he was still out of it. But, when he woke up, he wasn't crying which was the first time that had happened since last week and you could tell he was focusing on things ... mainly the television.

He is still heavily sedated. They are constantly monitoring and adjusting the dose of pain medication because they don't him to become too sedated but they also don't want him to be in too much pain - so they're looking for an even ground.

Tomorrow is Logan's birthday! Unfortunately because he's pretty out of it, his birthday party is getting held off until he's better and more aware of everything. Hopefully that'll be in the next couple of days.

SEPTEMBER 2, 2008
Well, Logan is doing about the same today.  He is now officially engrafting (making white blood cells) and due to that he has bad bone pain which they say that Tylenol for some strange reason helps more than the heavier stuff.  They took him down on his pain medication because he was starting to have hallucinations.  They're also dropping his steroid dose down a little bit at a time to see how he does.  He still can't breathe on his own, so he has a tube we have to keep near him at all times, but he's kind of improving.  They did a test today to see if he has a virus because his breathing is really noisy still.  Mom and I had a sleepover last night which was fun, except the recliner I was sleeping in would occasionally catapult me forward when I shifted wrong.  Thank you everyone for writing in his guestbook, it's the highlights of all of our nights.  Thank you too to all of you who are sending them birthday gifts, its very sweet.  Well, until tomorrow.

SEPTEMBER 1, 2008
Logan seems to be doing much better. Yesterday was a nightmare - he would cry all the time he was awake, would only calm down when he was in a deep sleep but he would get so irritated that he couldn't get into a deep sleep. Right now he's resting, he has an oxygen tube up near his mouth to get some moisture into his throat because he's still noisy while sleeping but overall he seems a lot better. Within the last few days he's barely opened his eyes but he's been opening his eyes and kind of looking around so hopefully everything is getting better.

Another jump in the White Blood Count. This is great news, but don't be shocked if it drops within the next few days. Now, if his White Blood Count stays above 0.5 for three days in a row, then they'll start checking another number called Absolute Neutrophil Count (ANC) which I'll add to the sidebar when the time comes. The goal is to get his ANC above 500 for three days in a row. When this happens he will be considered engrafted and will be able to fight off infections on his own.

Having a WBC above 0.5 doesn't mean his ANC will be 500 right off the bat, though. It can take another couple of weeks for his ANC to get that high.