Logan J. Stout

Ever since his release from his latest hospital trip Logan has been doing very well.  In fact, on the 10th of this month Logan took his first steps.  I was right there and it was very exciting to see!  He has been doing it more and more lately.  Most of the time he side steps, but he will go forward and backward sometimes too.  He has really discovered the toilets and now likes to play in them which is absolutely disgusting, so, needless to say, we keep the bathroom doors closed all the time now.  I hate it when I find him playing in the toilets, it makes me want to get sick it is so gross.

We had a small party the other day to celebrate the one year anniversary of his transplant.  I meant for it to be a party without gifts, but I kind of forgot to tell people that, so he received some very nice presents.  He reiceived things like a toy truck, some pegs and a hammer, and even an adorable little chair for him to set in.  The pegs and hammer were a gift from his Grandma and Grandpa and while they are really nice, he really likes to use the hammer.  This wouldn’t be a problem except that he doesn’t use the hammer on the pegs, he uses it on us.  Dave’s Mom, Carley, came and stayed the weekend with us and we had a very nice time.  She lives almost two hours away and we don’t get to see her often, so it was nice to be able to spend the time with her.  Especially since I haven’t seen her since before we left for N.C. last summer.  Dave’s Dad and Stepmother were also able to make it to the party which is nice because they live in Indiana and we don’t get a chance to see them very often either.  We are probably going to go up for a day to their cottage here in a couple of weeks so that we can spend a day with them.

Logan has a doctor’s appointment tomorrow and he will have his operation site looked at from where they put his port in.  If everything looks well than he will be able to start taking baths again.  If that’s the case than tomorrow night he will have the first bath that he has had in a year.  I’m really excited to see him be able to play in the water.  His Grandpa Howard is also extremely ready to bring Logan into their pool.

We leave this weekend for Duke for Logan’s one year check-up.  It’s hard to believe that it’s been a year since he had his transplant.  So much has happened.  I am so glad that it is all over though and life is almost completely back to normal.  I wouldn’t ever want to live through this past year again!  We are going to vacation on the two weekends while we are down there since, due to all of our medical issues, Dave doesn’t have any more vacation time left.  In Durham there are some historic sites that we can visit, including a plantation and a graveyard.  In one of the neighboring cities there is also a planetarium, so we might go there.  We are also planning on going to the beach and spending part of a day at the ocean.  I’m really excited about that, I have only ever been to the ocean once and it was about 12 years ago.  I’m terrified of sharks though, so I am also a little bit nervous.  But we could really use the vacation, and it will be nice to spend the time together as a family doing something other than sitting around the house or sitting in a hospital room together.

We had a very good thing happen to our family the other day, my cousin Jason and Jamie had a little boy, Jackson James Howard Ramsey.  This is one of Grandma Sharon and Grandpa Howard’s grandchildren.  I haven’t seen him yet, but from what I’ve heard he is absolutely beautiful.  We really needed this good occasion, losing my uncle has been very hard on our family.

Logan has been sleeping in his crib with me in my bedroom for the last couple of weeks, so that is really exciting, we just hope that he continues with the cycle.  We are worried that taking this trip and putting him into a hotel bed instead of a crib is going to mess it all up though.  You see the hotel only has two cribs and they are first come first served and I don’t think we can haul a pack-and-play along with all of the rest of our luggage.  Hopefully though this won’t mess with the progress that he’s made and he will come back using his crib just like he did before.

Well, that is pretty much all that is going on right now.  With the economy I haven’t been able to find a job yet, but I’m going to keep looking and hopefully something will come up.  Oh, the book is almost finished, I just finished my third draft of it and it won’t be long now.  I’m really excited, a contact of mine said her organization Save the Cord foundation, might be able to help me get it published, so hopefully they will be able to help.  I’m really excited about the possibity of it being published!  Well, that’s pretty much everything.  Talk to everyone later.  Love you all.

To say that life around here has been boring would be a lie.  We went to the zoo the other day with my brother and sister in law with their kids Tyler and Emma.  Logan had been really really tired that day and slept through the entire day.  We didn’t think much of it until he started breathing strange.  He was almost acting like he had the hiccups, but he didn’t have them, his body was just hitching like that.  So, we decided to call the doctor who told us to get him to the ER right away.  He was still lethargic when we arrived there.  Soon after we were initially seen they were already talking about admitting him for the night.

So, after about five hours in the ER (I just love how quick they are) they got Logan up to a room.  They had been trying to get an IV started, but they couldn’t access a vein.  We had just had Logan’s central line taken out on Thursday and so they couldn’t use that, so they decided to put in a temporary central line in his thigh that went into his femoral vein.  It took the doctor an ultrasound machine before he could finally find the vein and place the line.  His skin under the tape was all bloody and it was kind of nauseating to look at.  They then used this to hook him up to anti-virals, saline, and anit-biotics.  He was still so tired.  We were actually able to get a regular hospital bed and he just slept on my chest.  He would wake up in the middle of the night and sit up a little bit, just to later collapse on my chest.

The next morning he woke up and he acted just fine, like the day before hadn’t happened.  He was happy and babbling, playing in the bed, and jabbering to Dave and I.  When the doctors came in I thought that they were going to tell us that he would be able to go home that day, but they told us that he wouldn’t be able to go home until Wednesday.  They had to run tests to see if he had a virus, and I’m guessing that they wanted to keep an eye on him so if he started acting like he did before.

It was quite a boring four days.  On the second day we had switched out the bed for a crib and so Logan was able to play in that.  One good thing about the crib is that, using the bars he was able to stand up and walk around it, this made him very happy.  His Grandma Sharon and Grandpa Howard came to visit and Grandpa Howard taught him how to high five, so that is now his favorite new thing to do.  Mom and Dad also came to visit that day too.

On Tuesday Logan finally received what we had been asking for forever now, a port.  This is kind of like a central line that goes underneath the skin.  We have been asking for this because it gives them easy access to his blood just like a central line, but since it’s under the skin he can go into the water with it.  We just have to wait the ten day period after it’s put in to make sure that it’s completely healed.

The surgery itself was really quick.  We went into a medium sized room where they gave him the sedation with us right there and then we left.  We were given a pager that would tell us when the procedure was over.  We went to the cafeteria to get something to eat while Mom and Dad waited in the waiting room.  When we got back I quickly flipped through a magazine and by the time I was done they were paging us telling us that the surgery was done.  It’s technically an outpatient procedure, so it’s quite simple for the doctor’s to do.  Logan was initally awake after the surgery and was happy and kicking, but once Dave picked him up he went to sleep and after that he slept for a couple of hours.

We got out today afternoon.  When we got home Logan took a couple hour nap and he was quite upset when he woke up.  He hated when I had to change his pants and wouldn’t even let me get his jeans back on.  After a while he perked up and started playing around the house.  He is currently on Dave’s lap.

Well, we got some good news.  Brett’s mom, the little boy who passed away a few months ago, is pregnant!  So that is something that is very happy for that family.

Not much else is going on right now.  I am looking for a second shift, part time job, but so far that hasn’t panned out, but we’ll see.  So, until later, bye everyone.

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.