FEBRUARY 23
Sorry that I haven't updated in a few days but Friday was a very busy day and this weekend I was quite sick.  Friday was an extremely busy day for us.  Since there was a large storm forcasted in Michigan for the weekend AngelFlight wanted to leave early on Friday to get us home before it hit, so the plane was scheduled to leave at 11:30.  Duke was wonderful about accomadating us.  They told us to get there before eight and they would get us going as soon as possible.  At 8:30 they started the medicine that he needed to have and Dr. Prasad was in soon after that. 

Dr. Prasad said that from Logan's counts he is doing wonderful.  Everything is thankfully, where they are supposed to be.  He also said that Logan looks amazing.  He even got his camera out and took some pictures of him.  He said that as for adjusting his medicined or him being around more people, that that would probably start happening around 9 months post transplant.  I know that Deb said that he can fly a commercial flight at 9 months.  That will be nice because I don't like flying in little planes, it's too scary for me. 

So, after we left Duke we were off to turn the rental car in.  OH MY GOD, you would think that Dad was asking the people to do rocket science.  Since we were turning the car in a day early we thought that we should get some money back.  Well, it turned out that they charged us for the week because according to them it was cheaper.  That meant that they wouldn't refund any of our money.  This didn't make sense to either of us so we were trying to figure out why they wouldn't take a day off the bill.  Well, I don't know exactly what was going on (I was sitting down with Logan while Dad was at the counter) but I kid you not this lady took half an hour to tell us this simple policy.  I was wondering if she had two brain cells to rub together.  Then, her computer shut down on her and I started getting really annoyed.  I kept asking Dad what time it was because I was afraid we were going to be late for our flight and throw off everyone's schedule since we had three planes that we were taking.  So, by the time we were done with the moron woman we got into the shuttle and told them where we were going.  Well, the driver must have been from Africa or South Africa so he was really hard to understand.  That wasn't frustrating actually, the frustrating part was that he had never heard of our terminal.  Finally he stopped to ask one of the police officers that are around the airport and he told us that it was out off the general airport area and that the shuttles weren't allowed to go there.  So here we are on a bus with all our luggage (two large duffel bag, one small one, a diaper bag, and a car seat) and now we have to go BACK to the Alamo and call the terminal to have them send one of their shuttles to come and get us. 

The nice thing is that when we were at the Alamo, for the second time, the pilot called us and told us and told Dad that he would come and pick us up.  The funny thing is that whenever the phone goes off Dad never realizes what it is and so I had to tell him twice that it was his phone before he answered it.  Whenever the phone rings he starts to look around for the sound.  It's hilarious.  He told me that the first time his phone rang he was in the hardware store and it started going off and when it rang he started looking around at the merchandise trying to figure out where the noise was coming from.  What can I say, that's Dad for you.

So, the pilot came and got us and we were taken over to the terminal where our plane was.  This one was the same size as the last plane that we had had.  So I was sitting next to Logan and Dad was sitting across from Logan.  I had finally become a little comfortable with flying in small planes, well a little more comfortable, and so I fell asleep for a little while in the plane.  Then I woke up for a few minutes because we were hitting a little bit of turbulance because there was a lot of wind.  So, I kind of dozed off again for a few minutes again and then, out of nowhere, the floor went out from under me.  I sat straight up, wide eyed, and clutching the arm rests.  Dad started laughing at me, so I know that I must have looked ridiculus.  Logan slept through the entire thing.

The second plane was the really small kind and Dad sat up from and Logan and I were in the back.  We acutally had the same pilot that we had the first time, the single pilot, not Doc and Colonel (thank you God).  So this was the small plane again, and I don't know if I told you before but this thing was so small that it had a parachute.  I'm not talking that everyone in the plane had a parachute, I'm saying the PLANE ITSELF had a parachute.  And believe me, I knew EXACTLY where that parachute was just in case of an unexpected heart attack.

Then there was the third plane and finally we got a big one, the one that I saw in Isiah's pictures.  A big plane I was so happy.  It was the first time throughout all of the planes that I wasn't completely terrified.  I was so happy.  The only problem was that it was cold.  In fact, through the entire plane rides I was cold the entire time.  But at least we got there safe and all in one piece.  The rest of that night was pretty boring.  Dad and Mom went home and so did Dave, Logan, and I.  We stopped by McD's and went through the drive thru and went home.  We spent the rest of the night watching stuff that had been recorded on our DVR.

The weekend was a good one, except for me.  I was really congested in the chest and was coughing the entire time and exhausted.  Dave took care of Logan for me most of the time while I tried to rest.  Logan is doing great.  He is really starting to move around a lot.  He has figured out how to get up into the crawling position and he can kind of scootch a little bit.  In fact, yesterday he crawled for the first time.  I was napping at the time but Dave saw it.  I'm honestly terrified because he is very curious about everything and I know that nothing in our house will ever be safe again. 

Well, that is about it for us.  Talk to everyone later.

FEBRUARY 19
Today was a short day for us.  It began with a trip to see another audiologist.  I'm not sure why we were sent to see them, they did the same test on him that was done to him on Monay.  But they did it anyway.  It was pretty boring since we had already done it, but they said that Logan did really well. 

After we got out of that appointment we still had a couple of hours to waste before his next appointment so Dad went to a Duke store and bought a hat and a sweatshirt for Logan.  Then, after that we headed over to McD's for something to eat.  By the time we were done with that it was time for our next appointment which was with Dr. Martin, the doctor that we were supposed to see on Monday but who wasn't able to see us. 

Our appointment with her went really well.  We spent the time talking about his physical and speech developement.  They said that his speech development was that of a 9-10 month old.  She said that children with Hurlers are born with speech problems, and then add to that the fact that he has hearing loss and hasn't had his hearing aids in for quite a while and that explains it. 

When it came to his physical development she explained why he is so behind right now.  The main problem is that right now, due to his steroids, he is weak.  This makes it hard for him to support his weight and to start moving around more on his own.  She said that his head size also has to do with it since he does have a little bit of a bigger head.  This is another symptom of Hurlers, but it also just plain runs in my family, so the poor baby had a double whammy.  She said that he has developed about 3-4 months since he came to see her in July, and that was with him being sick and everything which she said was really good.  She said that the big progession is probably going to start around the one year mark, once he is down a little bit on steroids and he is feeling better.  So that is a good thing.  She said a lot more stuff, but that was pretty much the big bullet points of it.

We were done with all of his appointments by 3, so we went back to the hotel and we've been spending time here ever since.  It turns out that instead of leaving on Saturday, we will be leaving around noon tomorrow.  We would leave Saturday but there is supposed to be really bad weather this weekend and so instead of leaving us down here for the weekend, they plan on getting us home before the storms begin.  The hospital even managed to get us in earlier than our appointment so that we can make it to our plane in time.  So that was really nice of him.  Right now we are sitting here and Dad has demanded that he get the tv tonight since Duke is playing St. Johns.  I tried to argue that Bones and Hell's Kitchen was on, but I lost.  What can I say, he will always beat me out on the tv, he is my Dad.

I was hoping that everyone will pray for two people for me.  The first is Brett and his family.  I haven't seen an update for a couple of days, but it seems that his cancer is getting worse and they don't know how much time he has left.  He is a very sweet little boy, so if you would pray for him.  The other person that I would like everyone to pray for is my mother.  She is going in on Tuesday for major back surgery and she will be in bed for probably the next three months.  Please pray that everything will go well and that this time the surgery will work.

Well, that's really all that's going on right now, so I'll update again tomorrow.  Goodnight everyone.

FEBRUARY 18
Today went well and was longer than the other couple of days.  First, Logan had to go and get a whole bunch of blood taken.  Thankfully he has his central line still and so it took just a couple of minutes for the nurse to take all of the blood.  After that we went down for him to get x-rays. 

Logan really didn't like the x-rays.  They had to do chest and pelvic x-rays for the Pediatric Orthapedist.  First he had to sit up and face forward, then he had to turn to the side, and then finally he had to lay down.  They really did have this really cute thing that they used to protect his testicles for the pelvic x-ray.  It must have been some type of lead, and it was heart shaped and the dressing on it said Save the Gonads.  I laughed out loud when I saw it.

After the x-rays Logan went up for an echocardiogram.  He had spit up all over his shirt and he smelled horrible and so while Dad went in with Logan I went down to the gift store to pick him up a new shirt.  I came back and Logan was crying so I took him  and started singing to him, that calmed him down.  After a few minutes the echo was done and we were off to do a pulmonary function test.

In a pulmonary function test the point is to see how hard the patient can exhale.  In older kids you do this by asking them to breathe out hard.  In babies you have to make them cry.  So that was what we did.  We handed him over to the woman who was doing the test and sure enough he started crying.  If there was a way to get an A on this test then Logan must have aced it.

After that we didn't have another appointment for another couple of hours so we went back to the hotel for a couple of hours.  After a quick nap we were up and at the eye doctors where we spent two hours.  First one of the doctors came back and he used a bunch of toys to try to get Logan's attention while he looked at Logan's eyes.  Logan really didn't like the man shining the lights in his eyes.  Then, out of the corner of his eyes he saw a box of tissues and the fight was on.  He practically tried to leap out of my arms trying to get to it.  He did manage to get a few of them out of the box before everything was over. 

After that we had to go back out into the waiting room until the doctor was ready for us.  She came in and was trying to look at his optic nerve.  She managed to get a good look at the left one but was having trouble with the right one since Logan was wiggling around so much, so she put some drops in his eyes that dialated them and left.  I handed him a maraca that was in the toy drawer and while we were waiting for the drops to work and he started smacking me right in the face with it.  After a couple of minutes of dodging the blows I took it away from him.  That was fine with him, he then preceded to grab fistfuls of my hair and yanked on them.  I took my hair and tucked it behind my back and then he was after the tissues again.  Whenever I try to tell him "no" he just laughs at me.  Yeah, I'm REALLY intimidating, what can I say.

Tonight was bath night for Logan and it was definitely and interesting one.  I had washed and dried him all off and was putting lotion on him when the phone rang.  He doesn't get his baths in a bathtub yet because of his central line, so instead we set him on a towel and use a washtub to wash him down with.  Well, when the phone rang I got up to get it and it was Mom.  I was sitting there watching him while I was talking to her and at first he was trying to reach for the washtub which was safely out of his reach.  Then I turned my head and when I looked back I saw that he had pooped on the towel.  So I yelled "Gotta go," into the phone ran over, flipped a corner of the towel over the poop and quickly wiped Logan down and got a diaper on him.  Yep, never a dull moment.

FEBRUARY 17
Sunday was a very interesting day for Dad, Logan and me.  We all arrived at the airport, Dave, Logan and I from our house and Dad and Mom from theirs.  We went over to the building with the hanger where our plane was taking out from and I saw it.  I had seen the picture of Isaih’s plane that he had taken home and that was what I was expecting.  That was not what we got.  What we got was a plane that was a LOT smaller than what they had.  Yep, I started to freak out.  Thank God I had my Xanax with me and that helped me to calm down.  We got into the plane and it was a comfortable fit, the plane seated five people.  So there were the two pilots, Dad, Logan, me and our luggage all shoved together.  I tried not to think about what was happening when we left the ground and went into the air.  I stuck my ear buds in, turned on my MP3 player and listened to the music.  Logan fell asleep before we were fully in the air, and Dad seemed to thoroughly be enjoying the flight.

The flight was about an hour and a half long until we got to an airport in Ohio where we would be catching our next plane, which, to my sheer amazement, was even smaller than the plane than we were just on!  This definitely didn’t settle with me well and when we all crammed in the small plane there were only four seats.  Dad sat up front and I sat in the back with Logan.  Then it came to my attention, there was no co-pilot, just Dad.  Oh crap!  So there we were in the air and all I could think of was “Please God, don’t let the pilot have a heart attack, please don’t let him have a heart attack.”  That ride lasted about an hour and a half.  Logan woke up partway through and I fed him a bottle.  Then, thankfully we were in West Virginia. 

Logan had gone to the bathroom so I went and changed him while we waited.  We ended up waiting for over an hour in the tiny airport until the pilots were ready.  We met the younger pilot Colonel and by younger I mean that he hadn’t quite hit his eighties yet.  Then I looked over to the main pilot who’s head didn’t even reach my shoulders and I realized that this man has to be about eighty years old.  What made the situation even worse was the fact that one of the men smelled so when we were shoved in the tiny plane I was in the middle with Logan and Dad was in the back and the only thing I could smell was the pilot.  It was horrible!  Then there was the fact that the four of us sat in the plane for half an hour before we even went anywhere.  I couldn’t figure what in the world they were doing, they had a clipboard that they were writing stuff down on.  Dad told me later that the “boys” didn’t just scare me, they had scared him too.  I don’t know if I was afraid they were both going to die in the air, but I was scared.  Can you tell that I’m a little paranoid about flying?

Thankfully when Dad asked them if they were going to be the ones flying us home they said that they weren’t.  Now I know that they probably don’t get paid for doing this and their doing it out of the goodness of their hearts, but our lives were still in their hands and that was still scary.

We finally got to North Carolina around six and it was around seven by the time  that we got some food from McD’s and got to the hotel.  We were all so tired that we fell asleep by 10:30.  Logan slept all through the night and woke up at 6 the next morning, just in time for us to get up.

On Monday we had to take Logan to see a behavior and developmental Pediatrician.  While we were there we saw an audiologist who tested Logan’s hearing.  For the test there were three boxes to our right and in each box was a different toy that could be lit up and that would move.  During the test they would first make a sound and then one of the three dolls would light up and move.  After he figured out that a sound preceded a movement he would then, eventually, look at the toys whenever he heard a noise, before they were turned on.  He did really well with the test and the doctor was impressed with how good he acted.  We have talked to some families of Hurler’s children who have said that after the treatment their child’s hearing had improved.  So, when we went in I was hoping that the testing would show some improvement in his hearing, but sadly, it did not.  He still has the same level of hearing loss that he has always had.

After that we had a couple of different women come in the room and work with him.  The first woman, a developmental analyst, came in and started testing him.  At first she would have him take blocks in and out of a can, she had me ask him if he would hand me a spoon, both with my hand held out and once with it not held out.  He gave me it when my hand was out but not when I didn’t.  She also had a puzzle with four shapes, and she gave him a piece to see if he could put it in the puzzle.  He couldn’t quite get the piece in the right spot.  She also put a tiny toy under a washcloth and waited to see if he could pull the washcloth off the toy to get to it.  He did well on that one, he whipped the towel off so hard that the toy went flying across the room.

The other woman came in and she was a physical therapist.  She put him on his stomach and saw how he dealt with it.  She also moved him around a lot to see what areas in his body that he was strong in and where he was weak.  She said that we have to really start working with him to help him to learn how to crawl.  For one thing, when we get him up after a diaper change we’re supposed to pull him up to one arm so that he has to push himself up.  Pretty much, we have to help him a little bit and let him do the rest in almost everything he does from rolling over onto his back to sitting up.  It will be a hard thing to remember to start doing, but we’ll do whatever we can to help him learn to start crawling. After about four hours and all his tests we were supposed to meet with his doctor but she wasn’t available so we have to go back on Thursday to see her.

We went back to the hotel, and we all took a nap.  The rest of the day was pretty boring.  We had Subway for dinner then watched NCIS and The Closer before we went off to bed at 11.  Logan went right to bed again last night too.  I don’t know if it is because he is sleeping in the bed with me, but he has been sleeping really well for the last couple of nights.

This morning Logan had an MRI done.  He had to be sedated, and everything went fine.  Then we went back to the hotel to wait for his 2:00 appointment.  When we went to that appointment, who was a Pediatric Orthapedic doctor we were told that the doctor was two to three hours behind.  When we told the nurse that he had a compromised immune system and so she sent us home and called us when the doctor was ready to see us.  He examined Logan’s back to see if he still had the bow in it that he had back in July.  It turns out that he doesn’t which is a really good thing.  The doctor also checked to see how his knocked knees are doing.  He said that while Logan has knocked knees they don’t seem to be bad.  He did say that if Logan did end up needing surgery that it would be done around the age of ten. We grabbed something to eat after that and headed back to the hotel where we are now, watching NCIS.

FEBRUARY 13
Everything is going pretty well with Logan.  We went to the hospital today for his weekly checkup.  We usually go on Mondays and Thursdays to see the doctor.  Last week his counts were so good that we didn't even have to see the doctor.  The nurses just came into the waiting room and told me that everything was fine. 

It can be hard sometimes to keep Logan occupied because sometimes we can be there for quite a while.  Then again, sometimes you get out in two hours (which is the norm) so I never know.  I don't really like him playing with the toys that they have there because I know that other children have touched them and they probably haven't been washed.  So I usually bring toys from home for him.  I try to switch up the ones that I bring so that he has a new selection, but sometimes he just doesn't want to play with what I give him. 

Lately he has been obsessed with his wooden blocks that Grandma and Grandpa got him for Christmas, as well as the Playstation 2 remote that we let him play with, that is especially his favorite.  He can sit for hours and play with that, but we don't let him since it's not something that really activates his brain and makes him work and think.

We have just started back on Physical and Speech therapies.  They are going really well so far.  Speech therapy would be going a little better if I could actually find his hearing aids, but somewhere between Grandma and Grandpa's they got lost, both houses have searched everywhere but none of us can find them.  So I'm going to call the hearing clinic and see if we can get some loners until we can get him new ones.

Physical therapy has been going really well.  We're working on helping him get in and out of the crawling position and that is going really well.  The therapist thinks that if we work with him this week he'll be able to do it on his own by the end of this week.  We work with him about 3-5 times a day and he is really getting the hang of it, especially getting out of the position, he can already do that on his own.  He also doesn't get angry anymore when he is in this position.  Sometimes he almost get's excited, it's like he knows that this will be able to make him more mobile and he is just ramped up to go.  At the same time I can't wait for him to crawl and I am dreading it.  I'm dreading it because he is a VERY curious little boy and I know that I'm going to spend my days chasing him around the house making sure that he's not getting into anything dangerous.  But I really want him to be able to move around on his own.  I look at other children, most of which these movements come naturally and it makes me sad.  I just think that after everything he's been through why does he have to struggle to do this too?  I just want him to be as normal as he can possibly be, and this is a step in the right direction.   

Logan is eating so much better, well at least the amount that he's eating.  A few weeks ago he was eating so little that the doctor had him on fluids that we ran through the night so that he reached the 32 oz that he needed.  Now he is drinking that on his own, so that is really great.  The only bad thing is that we still have to feed him through a straw.  That is a huge pain in the butt, but we're going to start really pushing him to use a sippy cup.  I'll buy every sippy cup in the store if that's what it takes.

His sleep isn't doing well.  When we first moved into our apartment (which is fabulous by the way) he was sleeping through the night.  There's a full sized bed in his room along with his crib so at first I was sleeping in the room with him to make him more comfortable.  Then I was able to move back into our bedroom.  Then, out of nowhere he started waking up at 4 in the morning and he refused to go back into his crib after that.  Dave had to hold him and sleep with him in the chair.  Now he has completely stopped sleeping in his crib altogether.  Whenever we try to lay him down he will start screaming.  We tried letting him cry it out but last night the neighbors turned their music up loud, so we're pretty sure that they can hear him.  So now we're not going to be able to do that anymore.  I'm at my wits end with this, I honestly don't know what in the world to do.  We're afraid that he is going to go right back into the habit of wanting to sleep in the chair again, and we really don't want to do that anymore.  I had finally gotten myself in a bed and I really don't want to go back to the chair.  Plus, I have, back in North Carolina, accidentally let go of him when I was asleep and he fell on the floor.  I feel so horrible about it, I didn't mean to, all of a sudden I wake up to him crying and he's not in my arms anymore, that's scary.  So hopefully we'll be able to figure out something to get him to sleep in his bed.

We're going back to North Carolina next week for his six month checkup.  Dave has to work so Dad is going down with me.  The hospital managed to find a private plane for us to fly in for free.  I'm very thankful for that because I really didn't want to drive the 20 hours that it takes to get down there.  It took four of us to do it last time and so I think that that's why Logan didn't get really bored, but I don't think that it would go well with just the two of us.  I'm a little nervous though because it is a tiny plane.  They even have a weight limit for each passenger and we can't have more than 50 lbs worth of luggage.  The worst part was when they sent the letter that said that if you were afraid of flying to not go because you could put everyone in danger.  That was pretty scary.  We decided then that it was better that Mom wasn't going with us since she's afraid of flying.  I think she would kill us all.  :)

Well, that's about all for now, at least, that is all I can think of.  Oh wait, one more thing.  Please pray for a little boy named Brett.  He was in the hospital with Logan and they just found out that his cancer has come back and he only has a few weeks to live.  Please pray for him and his family, they really need it right now.  Thanks everyone.  Love you all.

We'll be updating again every day or so next week depending on how the test results come in. Some of the tests that he'll go through is to see how he is doing developmentally, a hearing test and his donor tests so we'll get an update on how many of his cells are donor and how his enzyme levels are doing. We should also mention that Logan is six-months post transplant and according to doctors that is the earliest that the enzyme will really start clearing out the junk