JUNE 25 - I apologize that it has been so long since my last update, but I honestly just forget to update now. This has been a pretty big month for Logan. Earlier in June he learned how to stand up. He has progressed so that he can now walk along furniture, which is also very exciting for us. We have been working toward this for so long and he is finally doing it. He is also trying to stand up on his own without the aid of anything, but so far has been unsuccessful in that.
One of his physical therapists has suggested that he might need a type of molds that would go around his calves so that he could strengthen them, so she is going to talk to his other physical therapist about it. The only problem that he has at the moment with walking is that he walks with his feet almost completely turned out to the sides. He also walks with his legs really far apart. Gail, his physical therapist, wants us to work on moving his feet closer together.
Since his visit down to Duke we have been able to go down on his cyclosporine. Again, his cyclosporine is an immunosuppressant that keeps his new cells from attacking his body. When he is completely off of this medication then he will has his full immune system back and will be able to be back out in public again for the first time in a year. He started out at .3 mg and they are taking him down by .05 mg every week. We are currently at .15 mg, so we are very close to the end. In probably about a month he will be completely off that medicine. Then, when he is off that medicine the doctors will start taking him off the rest of his medications. We're really excited about that. I know that he went a year without us giving him medicine, but I honestly can't remember what that was like, I'm so used to be on his medicine schedule that I don't remember life before it.
Since we are lowering his cyclosporine we really have to be on the watchout of any signs of GVH. He has had a couple small patches of it on his body, but they go away when we put his medicine on it, so that's really good. I just hope that we get him off this medication without him breaking out in it. If he does come down with a bad case of it we will have to go back up on his medicine and we will have to wean him off of it slower. They say that for some children it can take up to a year to get them completely off of it. A month seems so far away as it is, I don't want to have to wait any longer than that.
His sleeping schedule is still really messed up. What makes matters even harder is that he has now become extremely attached to Dave. He wants Dave to rock him to sleep, and when he wakes up in the middle of the night he wants Dave. It's so bad that when Dave goes to bed, or in the middle of the night when he wakes up he will actually go to Dave's door and pound on it until Dave get's up with him. If he went right back to sleep it wouldn't be such a big deal, but he'll stay up for a couple of hours and that is taking out of the hours that Dave sleeps. So, he can't go to sleep until Logan goes to sleep, and he has to get up when Logan does in the middle of the night, which usually occurs nightly. For example, last night Dave was tired and went to bed at 11. We had a long day and I figured that it wouldn't take long for Logan to fall asleep. Instead he became extremely upset that Dave went to bed and started crying. When I set him down to see if he wanted to crawl around and play he went right to the bedroom door and started pounding on it and crying. I picked him back up and brought him back into the chair with me where he proceeded to cry on and off for about the next two hours. He has also learned a new trick with the remote and has somehow managed to, in the last week, buy three movies off our On Demand. He ordered one last night without me even realizing it. I didn't even know about it until Dave brought it to my attention this morning. But at least this time he ordered a movie that I actually wanted to see, so at least it worked out in my favor.
I'm sad to say that this month hasn't been all well for us. David's grandmother passed away about a month ago. She helped to raise David since his mother was a single woman with MS, so this was especially hard on David. She was cremated and so at the end of next month we will be going down for her funeral. This was also very sad for me because I don't remember my grandmothers, they died when I was very young, and Dave's grandmother was the only grandma that I've ever had. She was a sweet woman who would often tell me how happy she was that I was part of the family and how much she loved me. Since we couldn't bring Logan down Dave went down alone to see her before she died. She recognized who he was and he showed her some pictures of Logan that we printed out for her. I'm sorry that I didn't get to see her, but I did get to say that I loved her over the phone, so we both were able to say our goodbye's to her.
We also suffered another loss. My Uncle Punk died last Sunday of cancer. We had his funeral yesterday. He was a very wonderful man. He was so kind and generous and he loved his family. He also had this laugh that I have never heard anyone else ever come close to. It almost sounded like the cartoon character Goofy, but not quite. If anyone were to hear his laugh they would never forget it, and they would be hard pressed not to laugh along with him. It was such an infectious laugh that you couldn't help but laugh along with him. His death was kind of sudden for me. I saw him on Monday and, even though he wasn't looking well I didn't imagine that he was that close to death. On Sunday, Father's Day, we went and saw him and I knew that it wouldn't be long. I told him that I loved him and I kissed his cheek, I don't know if he even heard me or not, but at least I was able to say it. I got the call from Dad the next morning saying that he had passed.
So please, to all of you out there, please pray for both of our families as we mourn those that we have lost. This is a very difficult time for all of us and we could use all the prayers that we can get.
On the web front, with Logan almost being off his medicines, I [Dave] decided that I will be shutting the site down sometime in the middle of August. This site was meant to be used as an easy way for people to stay updated on Logan's progress, which it did. While he was down in North Carolina, we did daily updates but as things started to calm down, we updated less and less. We're now at the point where the site is barely updated anymore just because Logan is doing so well.
So, any pictures you would like to keep, feel free to download them and Meg and I will have them on our computers as well. Just send us an e-mail and we'll grab them for you. If you have any other requests, send them to dstout @ live.com.
JUNE 5 - Logan's dad, reporting here ... Logan has done well with the Cyclosporine so we go down on it again. His weaning schedule is to go down by .05MLs every week as long as he shows no sign of GVH. He is currently at .3 so if he continues to do well, he will be off the Cyclosporine by July 17. As he goes off his Cyclosporine, he will go down on his blood pressure medication. And when he is finally off the Cyclosporine, they will stop the anti-fungal and anti-viral medication.
I also got an e-mail on Thursday that gave his cell donor percentage. We were told that all of his cells were donor. Whether that means 100% or not I'm not sure of (it could be 98% or 99%) but it's good news. The only thing we're waiting on now is what his immune functions were when we went down to Duke.
I was able to get Logan to take a few sidesteps while holding onto the couch, so now that he can stand up on his own, it's time for me to get him into taking his first few baby steps. He can walk no problem holding onto my hands, but not by himself just yet. Regardless, he just keeps getting better and better.
JUNE 1 - Hello everyone. Well, by the time you read this we will be back from North Carolina. We would update the site while we're down here but we need Dave's computer to do it, and we don't have it with us. We arrived down here two days ago. We left for our first plane at noon and the most amazing thing happened. While we were waiting in the terminal a man saw David carrying Logan around with his mask on so the gentleman asked us if we wanted to switch a seat with him because he was flying in FIRST CLASS. I couldn't believe that this man was willing to switch seats with us. I was so grateful and all that I could say was "God Bless You." So from Grand Rapids to Detroit I was in First Class. It was really nice. They give you a towel (why I don't know), and a tiny little pillow. They also give you bottled water, peanuts, and some type of crackers. The bad thing was that there was bad weather in Detroit and they got the order to wait to leave once everyone was on the plane, so they didn't want to let us off the plane for fear that they would get an earlier okay to leave and then they would have to get everyone back on the plane. So we got to sit there for an extra 45 minutes. I didn't mind too much though because the man nice to me was really nice and I had Logan to keep me occupied.
They gave us these giant graham cracker type things and Logan really liked them. The only thing is that Logan has a strange habit; if he has any type of cookie or cracker he has to touch everything around him with it, and that includes running it through his own hair. So, while he's eating it I'm trying to keep him from touching the guy next to us with his cookie. When I explained what Logan was trying to do he let him touch his newspaper with the cookie, but I was going to be damned if I was going to let him touch some stranger who had God knows what, with his cookie. So that was an interesting fight, especially because I was trying to make it look it like it wasn't a fight. One of the bad things about the ride was the fact that Logan completely refused to wear his mask, a habit that has started lately. He didn't wear it through any of the first flight, he would only wear it if we were walking around, and even then Dave usually was holding both of his hands.
The second flight was about two hours long and this time we sat in coach, of course. It wasn't too bad of a flight, Logan and I slept most of the way down. Both of us using Dave as a cushion. By the time we got our car, ran to the store for some food and pop, and got into our hotel room it was around six. Dave worked for a little while, while I watched television with Logan and played with him. Logan decided that he didn't want to go to sleep and didn't end up crashing until 12:30. Dave let me go to sleep and watched him play until he slumped over on the floor. He waited a few minutes so he could be sure that he was good and asleep and then put him in bed with me.
Yesterday was the day with the most appointments, which were only a very few. We started at 9 and were back at the hotel at 1. Logan had to get an echiocardiogram on his heart, then he had to have blood taken. He then had some x-rays taken of his chest, and somewhere in there was the Pulmonary Function Test, which is, if you remember where they make him scream and test that.
I wouldn't know exactly what went on because while everything was happening I was in the emergency room. It seems that traveling had upset my back so much that I could hardly move by the time we got to the hospital. After being there for a few mintues they brought me down there in a wheelchair. I laid in there for an hour before anyone even came into see me, and that included the insurance people. The doctor figured that I had strained my back while traveling and he gave me some medicine to take care of the pain. Usually when I go to the ER with pain like this they gave me something really powerful that all but takes the pain, but this doctor didn't do that. He just gave me some percoset along with a prescription with it. I am still in about just as much pain as when I went into the hospital. It's not like they gave me any time to see if it worked though. They just gave me the medicine and sent me away. Usually they'll wait to see if the medication worked, but this place didn't.
When Dr. Prasad saw Logan he was really impressed about how well he was doing. In fact, he couldn't stop going on about how well he is doing. They are going to start dropping his dosage of Cyclosporine, which is what we've been waiting for for a long time. Dr. Prasad said that since Logan hasn't gotten GVH when his Cyclosporine levels are low he is going to drop his dosage faster than he usually would. This means that he could be completely off of it in two months. So, that is great news. He also expects to be able to drop the dosages of his other medicines without any trouble, so we're almost in the clear. When all is said and done he will only be on his multivitamin, which would be great.
Logan has started doing something that is fantastic. He is starting to pull himself into a standing position on a regular basis. It is so exciting!! He has done it four times so far today. At one time he wanted Dave's controller to his video games and I've always said that if he would stand up and get it, he could have it. Well, he stood up and grabbed it, so I let him have it. He loves that thing.
MAY 23 - I know that I just recently updated the site, and I'm not really good about doing it, not nearly as good as I should be, but I feel that this needed to be posted. Logan is doing well, the bug is finally out of his system and he is acting like himself again. It was scary there for a while even when he was out of the hospital because he was still so lethargic and he slept in my arms all the time.
It brought back so many terrible memories from when he was sick. Those horrible days in the hospital when he was hurting and I was helpless to help him. I cry as I write this because the memories are still so painful, him on our laps, or him laying in his crib with the oxygen mask attached to him. Of the nights that I cried myself to sleep worrying that he was going to die and that I would lose my baby. I find myself listening to a song a lot lately. It reminds me of how I felt, it's from a father's point of view and the child in the song is a little older, but I feel it just the same. It's by a Christian artist named Mark Shultz. I know it's ironic that I'm listening to a Christian song right now while I'm still angry with God, but I still levitate to it.I heard it on an episode of the Home Makeover show with Ty Pennington that's on Sunday nights. It goes like this:
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
CHORUS
Can You hear me?
Can You see him?
Please don't leave him
He's my son
This latest hospital visit has really scared me. I'm terrified once again to bring him out of the house. From what we know he got this bug from the hospital somehow. The damn hospital, where he's supposed to be safe. It reminded me of how fragile his body and his life still is. I'm scared about this upcoming trip to N.C. because I'm scared of he might catch on the plane or in the terminal. The fact that he once again hates wearing his mask doesn't make me feel any better. I'll hold his arms down so that he can't get it off if I have to. But I'm so scared, especially with this swine flu, the doctor says that it's safe for him to travel this way but that doesn't completely reassure me, I'm still scared. It's scary because to look at him he looks like any other child, no one would know how unsafe he is to look at him, but he is in such danger when he goes out into the world. The doctor told me that we were lucky he got this virus when he did, because if he had gotten it any sooner it could have killed him. I know that I usually just write about what is happening with him and I leave my feelings out of these updates, but I can't help it this time, this time I want to share it with you all. With my friends and family.
This will also help with my book, it will remind me what I was feeling. I forgot to say that Logan was put on two more medications in the hospital, an anti-viral, and another one which I have no idea what it does. They also upped his Magnesium dose from twice a day to four times a day, the medicine that I have no clue what it does is also four times a day. I feel like I'm giving him medicine every time I turn around. Some times the days go by so fast because of this. Dave isn't worried about this, but I guess I'm just a worrier, I can't help it. I've seen him close to death and I never want to see or experience that again.
MAY 18 - Logan's story was featured on a Save the Cord Foundation article. Save the Cord is a foundation that aims at getting the word out about umbilical cord blood and the stem cells that umbilical cord blood has. For those of you who aren't aware, Logan received a Cord Blood transplant to halt the progression of Hurler's Syndrome. Check out the article by clicking here.
MAY 17 - I'm sorry that we haven't updated lately, but we have been busy. About two weeks ago, on Monday, Logan was acting lethargic and was running a fever. We called the doctor's office and they told us to take him to the emergency room. We were there for about five hours, then they finally sent him home.
The next day was exactly the same thing, he was completely lethargic, laying on my lap with his eyes half open, not conscious of what was going on. The doctor's office called to check on him and after hearing how he was feeling she insisted that we take him back to the emergency room. While we were there they had to catheterize him, which about made me sick (he's not circumcised and they had to pull the foreskin back, which was really horrible to watch). After another five hours and a spinal tap and a CT scan the ER the doctors decided that it would be best if he were admitted. So, at about 11 at night, we were there at 5, they took us up to our room for the night. Since Dave had to work the next day I was the one who had to spend the night with him. I didn't know how he would sleep in a crib since he wouldn't do it at home, so they brought a bed in and we shared it, it was uncomfortable for my back and that night I didn't sleep very well.
The next day in the hospital he was the same as the two previous days. They gave him more antibiotics the night before and so when Dr. Mageed (our doctor in Michigan) came in that morning he was pretty sure that whatever Logan had, it was viral. They would come in everyday and tell us that it wasn't this virus or that one. It went on everyday like that for days, it was really frustrating. He was extremely sick and we didn't know why, it was also scary. Not knowing how he got it, what had happened, if we had put him in danger some how without knowing it or if it was something that we couldn't do anything about. It was really hard to watch him be so unanimated, all he wanted to do was sleep.
Mom and Dad came up and he just laid on them and did nothing. We were all sad to see him like that. He spent six days in-patient in the hospital. Some days he would perk up and even play on a mat on the floor for a little while, but most of the time he was just too tired to do anything. He would play for about an hour and then he would be exhausted for the rest of the day. They're were many days that he seemed good enough to go home, but the doctor would keep him for another day. His levels would some days be perfect and others they would be off. One of the main things that was off was his protein level. That was what he was lacking, so we were trying to pack him with all the meat and protein that we could. Mom and Dad were even bringing in Reese's Peanut Butter Cups so that he got the protein from the peanut butter, plus that way they got to spoil him with some candy. It was pretty amusing.
After running hundreds of tests on his blood they finally figured out what he had. It was something from the same strain of a cold sore virus. They said that he would have contracted within ten days and he would have gotten it from a child since adults get this strain by the time they're 4 or 5. The only thing that we can figure is that he got it at the hospital, either when he went in for his weekly checkup, or when he went in for physical therapy. It makes me nervous now to send him to the hospital, but what can I really do? He needs to be seen by the doctor, and he needs his therapies. We'll just have to make sure that they clean all their toys and mats off before he touches anything.
Even after we got out of the hospital Logan was still not feeling well, it took until Friday for him to perk up. He spent Monday through Thursday laying on my lap, just like he did in the hospital. But when I took him into the hospital for his check-up the doctor said that his levels were fine and that he would probably act tired since he was still fighting off the virus. He said that he would have good days and he would have bad days. Today, Saturday, he is still very active and moving all around the house, so I think he finally has this bug out of his system, thank God. My back is killing me from sitting in a chair and holding him for so long and I have been extremely sore lately.
When we got home we got some bad news. Dave's mother had called earlier in the day and informed us that his Grandmother had fallen and when they got home from the hospital she had a stroke. She couldn't move and she couldn't talk. They were told by a woman (who we learned later was hardly involved in the medical field) that she would only make it a day or two. So that night Dave went down to his mother's house to see Grandma. We would have brought Logan down but his Mom's house is so smokey that it isn't safe for him to be in there. The next day David's brother, who is a doctor, went to visit and when he examined Grandma he realized that she didn't have a stroke, instead, when she had fallen she had hurt herself and was bleeding into her brain. His brother said that it could be three days or it could be three months, but she is going to die from this. It's okay though, she is 91 years old and she is ready to go. They couldn't understand much of what she was saying, but she understood her saying "Open the pearly gates, I'm ready to go home." So, we hope that she goes peacefully and soon. Please pray for her and for David, and his family as they go through this extremely hard time.
