An MRI of the brain showed improvement over what it was last year, which the doctors like. This follows the theory that progression of the disease will stop and that it could actually improve. I didn’t get to hear all of it, but I imagine it’s the buildup that Hurler’s causes that is continuing to be cleared out. In other words, (if my theory is right) the missing enzyme that was introduced with the transplant is doing exactly what it should be doing.

Glasses is no longer necessary anymore either. His vision has returned to one of a normal four-year old. He normally had an astigmatism, but apparently that has gotten much better. So with his corneal clouding being minimal in addition to the astigmatism getting better, they see no reason for him to wear glasses anymore.

His facial features also continue to improve and lose the “Hurler’s” look which is also common in post-transplant kids where the coarse facial features that they have will slowly fade away. The doctor commented again this year at how much less he is looking like a child with MPS.

Otherwise, almost all the tests that the doctor received was normal or he thought there was nothing to worry about.

Unfortunately, it sounds like there may be some surgery needed on his left hand within the next year due to a potential development of carpal tunnel’s syndrome in his left hand. Occupational and Physical therapy was recommended, but the doctor stated that whether it’s three, six, nine months or a year … surgery on his left hand will probably be necessary.

All-in-all though, it’s what we expected. While the transplant does fix a lot of things – there can still be issues that will need to be dealt with. But, for the time being – outside with getting him to a few doctors and into the therapy, it’ll be back to a normal life for him once he gets situated in Michigan again.

Otherwise, it was mainly routine things that happened today – he had an MRI today and I believe he got his behavior evaluated, so hopefully some good news comes out of that. Tomorrow at around 3, I will be taking off for North Carolina, so I wouldn’t expect a big update on what happened tomorrow unless I choose to do that over my phone.

But Friday evening I plan on making the big post, where all of this results are given by his transplant doctor. The only thing we won’t know are his T-Cell count, which tells us the percentage of donor cells in his body – we’ll find that out within the next few weeks.

All that really happened was that they did something along the lines of a nerve-function test. They did this on his hands to determine any potential carpal tunnel syndrome that he may be developing. Apparently, the boy didn’t like it and essentially had to be held down … which probably didn’t make things much better.

No results were really given (as in, what the person doing the testing saw as good or bad) so we will most likely get the results on Friday. Though, a nerve-function test was never done in any of the other post-transplant checkups … so I’m not sure if this is new to the general testing for Hurler’s kids, or if this was specifically ordered.

That was his only appointment for today. Tomorrow will probably have a bunch of more testing – including an appointment with Dr. Fitch, who is the pediatric orthopedic doctor down there. He’ll be the one looking at his knees, curled fingers and curved back – so it’s kind of a big deal for us. If anything will need to be done or suggested, the doctor will probably let them know – and then the results will be sent for Dr. Prasad to see and discuss with us on Friday as well.

He has adapted to staying in a hotel quite well. Despite asking to go home after getting off the plane while heading to the hotel, he crashed from roughly midnight until 10 a.m., and even then he had to be woken up. Generally, with his sleeping issues, we don’t like to “stir the pot,” so to speak – so putting him in an environment that he isn’t used to makes us worry that it may screw up his sleeping schedule or keep him up all night … but apparently everything went fine.

So what’s the point of updating this site with a new look? Honestly, it’s for a variety of reasons. First, I should explain that from a technical side, it has been moved to a database-driven engine, which means I can do an easy backup and restore if something goes downhill. What this also does is this helps with Search Engine Optimization which helps get this site out there for people to find. Treatment for this disease is still often misunderstood – people may not realize that there IS a treatment for this, regardless of how tough it may be. Had I not searched for days for a possible treatment, Logan would never have gotten his transplant.

So honestly, the purpose of this is to help parents whose children are diagnosed hopefully find out that there is something that they can do about it. They can read up on it, find out how Logan did and hopefully learn that they can do something about it. Hurler’s Syndrome affects 1 in every 100,000 children, so most doctors are misinformed on what can be done … if they even know about the syndrome at all.

Will I continue to update this site with his progress? Honestly, I guess it depends on the reactions that I get. If there appears to be a genuine interest, then I will continue to update the site with new pictures, videos and updates.

So how is the boy doing? He’s doing great. Medications are a thing of the past and he is a normal, healthy child. He is still struggling with language, but that’s just something he’ll slowly overcome. His spinal cord is starting to curve quite a bit, so it’s something I am hoping the doctors will look into. Otherwise, progression of the disease has halted as expected, he is still over 95% on this donor cells and his hearing has actually improved – a possibility that can happen, but it’s not normal.

He will be going down to Duke for his annual checkup next week – so I may post the results up here so that parents can see how a child with Hurler’s is doing roughly three years after his transplant. And honestly, it’s crazy to think that all this happened over three years ago – sure doesn’t seem like it’s been that long.

Logan’s birthday went really well and my family had a huge party for him.  There were lots of gifts, food, and two huge cakes with jungle animals on them.  We all sat out until late in the day just spending time with each other.  We left around 8 so that we could get Logan home and get Logan into bed at a decent time.  He stayed up for a few more hours, running around like a madman until he finally crashed.

He spent most of the next day sleeping and we thought that it was perfectly normal, he was just tired, but then he slept most of the next day too, and we just couldn’t wake him up, he would just go back to sleep.  On Monday I called the hospital and they told me to come in and that they were admitting him.  I brought him in and they immediately took us to PICU where he first had a CT scan.  Then they did an EEG on him, which is where they stick about 27 different electrodes on his head and monitor his brain waves.  Both of those tests came back just fine.  After that, around the time that Dave got out of work and came to the hospital, they did a spinal tap on him.

After a little while he woke up, and, later in the evening we were transferred to another room off of the PICU floor.  He didn’t sleep well that night and we were up most of the night, sleeping for only about four hours.  I hated not sleeping, but at least it was good that he was awake for a little while.  In the morning they sedated him and did an MRI on him, it took almost two hours for them to do it.  When Dr. Mageed came in he said that Logan was tired because he had pressure on his brain from fluid being on his brain.  When they did the spinal tap it relieved that pressure.  He said that if it kept happening than they will have to put a shunt in.  So home we went again.

The next week, Logan started school at a local school for the oral/deaf.  He goes for three hours a day and he even gets to ride a bus there and back since the school is about 20 minutes away.  The class has two other little boys in there who are younger than Logan.  One of them has just learned to walk just like Logan.  Their names are Evin and Kaleb and they are both adorable.  His teacher’s name is Jenny and she has been working at the school for 9 years now, so she is used to working with children his age.  There is also a helper in the room named Pat.  The first day of school was really hard.  There was a mixup with the school bus and so we ended up taking him to school ourselves.

While I wanted him to be there with other children, learning to use his hearing aids, I was terrified to let him leave.  What if something happened to him if I wasn’t there?  What would they do?  They didn’t know him, they wouldn’t be able to understand him like I did.  I think most of all I was scared for me, not for him.  I didn’t know how to be alone without him.  So, leaving that classroom was some of the hardest steps I had to take.  I had to hurry before I changed my mind, and I cried going out the door.  Thankfully Dave had taken a few hours off so that he could be there with me.

That was a couple of weeks ago now and I am a little more used to it.  But, I’ve been sick lately and Logan has had a very aggressive ear infection that we’re on antibiotic #4 now to try and clear up.  There is one other thing though, please today pray for Alyssa’s family.  Today is the one year anniversary of her death and I’m sure that they could use everyone’s love and support.

There is also some more bad news.  Logan went to see Dr. Martin and they evaluated him.  They tested his occupational and physical skills as well as his cognitive skills.  It turns out that Logan is behind in all areas.  And I don’t mean that he is just a little behind, he is very behind.  And I don’t mean for a normal child, I mean for a transplant child.  She had a graph that showed two curves, one that represented children that didn’t have transplants, and the other one represented children that have had transplants.  In all areas Logan was below.  It breaks my heart to even say it.  Every parent just want their child to be where they’re supposed to be and it’s really hard to know that Logan’s not there.  She said that we should increase the amount of therapy that he’s getting.  He’s already getting all three therapies twice a week, and so now I guess it’s going to be bumped up to three times.  I don’t think that we’re going to have much time for anything else.  I don’t know how many hours they think that I have in a week, but I’ll do anything that I have to do for him to catch up.

One day, while we were waiting for him to have an MRI I had to use the restroom and as I was walking down the hall I saw a familiar face, it was Rachel’s mom.  She told me that they were still there and they had moved back into the house.  It seems that Rachel has GVH of the gut.  The poor little thing didn’t look much like herself, but she still smiled at people just like her old self.  She was going to have a feeding tube put in.  While we were in the hospital with her she was able to have her feeding tube taken out.  So that was really sad.  Her mother said that she also couldn’t walk and had to use a walker, they had just started showing her how to use one last Monday.  I said goodbye and went to the bathroom.  When I got back to Dave I was nearly in tears and was close to a panic attack.  I’m so afraid that something is going to happen to that little girl.  GVH can be so dangerous, even fatal.  Her mother gave me her website but when I tried it, it didn’t work.

Well, after all of his tests were done and we were done at the hospital we left the area and headed to a town called Asheboro.  They have a zoo there.  We were originally going to go to the beach, but there is a small hurricane there and so we decided to hit the zoo.  It was absolutely amazing there, not to mention huge.  They had everything.  We saw polar bears, cougars, alligators, elephants, zebras, and even giraffes.  The park was so big that it would take 40 minutes to walk from one end of it to the other, so instead of doing that we took the little trams that they had there.  Logan slept on and off almost the entire time.  There was a mix up at the hospital with his blood pressure patches and he ended up getting one put on that was twice the dosage that he should have been getting, which we didn’t know at the time, and so he just slept.

If anyone out there and is on Facebook both Dave and I are on there if you want to add us as friends.  The only thing is that I am known as Megan Ramsey Stout (obviously Ramsey being my maiden name).

I am really excited, this Friday will be Logan’s second birthday.  Dave and I are going to have dinner and a cake, and then next weekend we are having a huge party at my parents house for my side of the family.  Then, we have to plan a date for Dave’s side of the family.

Deb came into the room while they were accessing it and we caught up with her.  It was really good to see her again and I was jealous that she was so skinny, like always.  Of course, nowadays, most people are skinnier than I am.  She gave us somewhat shocking news, she is leaving the transplant ward of the hospital and is moving to another area.  So from now on we will be working with Andre, at least after this visit.  I will really miss her, I love Deb, she works so hard for what’s best for Logan.  But at least in her place we get Andre, he’s a nice guy.

After talking for a little while it was time to go down for his MRI.  We got down there, and after waiting for about an hour for a room they sedated him.  It took two doses of the medication to get him to go under.  And then, when he finally did, his eyes were still open, it was extremely creepy so I closed them for him.  They took him to get started while Dave and I stayed behind to quick eat our lunches.  For some reason we can have pop in the MRI room, but we can’t have food.

I had to use the restroom and as I was walking down the hall I saw a familiar face, it was Rachel’s mom.  She told me that they were still there and they had moved back into the house.  It seems that Rachel has GVH of the gut.  The poor little thing didn’t look much like herself, but she still smiled at people just like her old self.  She was going to have a feeding tube put in.  While we were in the hospital with her she was able to have her feeding tube taken out.  So that was really sad.  Her mother said that she also couldn’t walk and had to use a walker, they had just started showing her how to use one last Monday.  I said goodbye and went to the bathroom.  When I got back to Dave I was nearly in tears and was close to a panic attack.  I’m so afraid that something is going to happen to that little girl.  GVH can be so dangerous.  Her mother gave me her website but when I tried it, it didn’t work.

Just like last time Logan woke up partway through the MRI and started to completely freak out.  I quick ran to his side on the other side of the nurse and started talking to him, but that didn’t seem to do a bit of good.  So, they gave him some more sedation and he finally went back under.  He stayed under for the rest of the procedure.

When he woke up he was a little cranky and he was very wobbly.  He looked like a bobble head doll.  We gave him some of Dave’s french fries and some Sprite and then he was off to sleep.  We had decided to go visit 5200 that day so while he was sleeping we took him up there to see Laura.

The trip up there felt so familiar, like walking around in a house that you used to live in.  The paintings on the glass windows had changed, but that was the only difference.  As we walked down the hall to the doors I felt a feeling of joy and agony wash over me at the same time.  I was joyful because my son was alive thanks to these people, and I was in agony because Alyssa wasn’t.  Part of me just wanted to turn around and go back to the hotel, but I really wanted to see Laura and I wanted her to be able to see Logan and how he looked.  Logan was still asleep at this point.

When she saw him she couldn’t believe how big he was.  I gave her a hug and thanked her for taking such good care of him while he was there.  We visited with her for a couple of minutes and then we left and went back to the hotel.  Logan was still sleeping so we laid him on the bed.

Between the two Logan had another pulmonary function test done.  It actually took a while for him to give a really good scream for the woman, I was surprised.  He was being so good all day long though, he even did really well with the x-rays.  I was allowed to stay in the room so that I could take pictures and he barely cried.

After the PFT it was time for his echocardiogram.  When Dad and I were there when he had it done he hated it and cried.  When Dave and I were there he did really well, so it was a toss up on how he was going to do that day.  It turned out that he did really well.  The woman turned on some Elmo and he pretty much just laid there and watched.

After the echo he had the rest of his x-rays.  This time he wasn’t happy.  Dave went in with him while I stayed out in the waiting area.  I could hear him screaming out in the hallway.  There was a man out there who was waiting for his wife and their son and he said “Boy, he is not happy” and I said “No, definitely not.”

We got out of the hospital early and since none of us slept well the night before we all laid down on the bed and took a nap.  After that we grabbed some dinner and relaxed for the rest of the night.

Logan did not sleep well on Monday night at all.  He woke up a couple of times and then one of the times that I picked him up he had soaked through his diaper.  I, praying, grabbed another diaper and changed him.  He had wet through the bed so instead of laying him back in a wet spot I put him in bed with David and I.  He slept through the rest of the night.

Logan was sleeping and since we would be walking around the plantation Dave decided to carry him.  The sky was looking kind of dark and so instead of waiting for the next tour we just decided to look around on our own.  That was a mistake.  There were many buildings on the property, and even while using the map, it was difficult to tell which one of them was which.  We were never quite sure what we were looking at.  The only things that we were sure of were the main house and the cemetary.  It was nice to look at everything, and we had a map and a paper that told information on each building, but we just didn’t know which one was which.  We just got back to the car when it started to pour.  And I mean pour.

We had just bought a GPS and so we had it navigate us to the Planetarium.  Without a mistake it got us there.  We went inside and we found out that the exhibits were free to look at, but the shows cost money.  There was a free science show around the time that we were there so we decided to go to that.  It was a live science show.  Until the demonstration we walked around the building which was a huge pain because we had to keep going in and up stairs which meant that Dave had to keep carrying Logan and the stroller up them.  The exhibits weren’t all that interesting and I was hoping to find the room with the domed ceilings that are in Planetariums.  We couldn’t find it.  That really bummed me out because that was what I had really wanted to see.

We went to see the show and the guy was very entertaining.  He worked with different powders, one which turned ice water into a gel.  He said that this one was what was used in diapers.  He also showed examples of gravity and centrifical force by swinging a glass of ice water on a board around his head.  But then Logan started getting upset and so we had to leave.

Feeling kind of defeated we grabbed some food and headed back to the hotel.

We arrived in Detroit about an hour later and we had a couple of hour layover until our next flight and it was time to get something to eat and so we rode on the tram that they have there.  We ended up eating at a Quiznos which ended up costing way too much for two subs.  While we were eating they called my name over the loudspeaker and when I went to the desk they had my purse; I had left it in the bathroom while I was changing Logan.  Thank God someone nice picked it up and brought it to a desk.  Everything was in there too.  After a couple of hours of hanging around the terminal it was time to board our second plane.  On my way into the plane, down the long walk I tripped on one of the wheels of the stroller and fell, scraping up my left knee and injuring my pride a lot more.  Logan and I fell asleep on that flight too and we didn’t arrive in N.C. until about 7:30.  We grabbed our luggage and headed off to the Enterprise bus.  When we got to Enterprise Dave wasn’t sure if that was where he booked the car or if it was with Budget.  While he was figuring that out I went back to the airport because we had forgotten the carseat at the airport luggage claim.  When I got back Dave had figured out that we didn’t reserve with Enterprise, but with Budget.  Thankfully it was right next door, so we just walked over.

By the time we went to the market for Logan’s milk, cereal and snacks for us, and dinner for us and arrived at the hotel to check in it was 9:00.  After we ate we went into the pool which Logan absolutely loved.  At first he started with just splashing his hand, but by the time we got out he was splashing his hands and kicking his feet.  He would laugh and giggle while he played in our arms.  He really liked it when Dave had ahold of him and I chased them around the pool, he thought that was a fun game.  After everything was done we finally got back to our room and we had him asleep by midnight.  He didn’t sleep very well through the night and he woke up about three times, and then he had us up at 6:30

Well, I should get going, we are going to go visit a historical plantation and a planetarium today.