Sighs of Relief

I got to breathe easy today after a night of serious prayer and many tears.  I was so worried about the testing that my baby had to go through this morning, and what the results would mean for us.  We didn't even expect to be getting such off the wall news about his bladder and this reflux that seemed to have come out of nowhere.  This was such an unpleasant surprise, it knocked my socks off to be honest.  I had spoke to one of the urologist last night, and she was telling me what to expect from the procedure and what the possible outcomes could be.  We talked about some worst case scenarios like surgery and catheterization at home.  The thing that really was scary to me was that she kept going back to the possibility of LJ needing to be catheterized at home.  I was scared to death thinking about having to do this to my little boy everyday.  I was dreading the the thought of him crying and begging me not to do it.  He loses his mind every time he needs to be catheterized for any reason, like testing, or to get a urine sample.  I was sick to my stomach, and I am still shivering even thinking about having to put him through that on a regular basis.  The testing that was done was the most extreme form of testing that they do.  LJ had a catheter in his bladder, and a probe in his rectum to measure the pressure of his bladder during filling and when he releases urine.   I was so relieved when the doctor came in this afternoon and told me that the head urologist was pleased with the results of the urodynamics study though.  My heart was literally in my mouth when she walked through the door.  They did recommend that we come back in about a month to repeat the test, and they started him on Ditropan, a medication to help relax his bladder.  They also want LJ to participate in something called Bio feedback, which I don't full understand, but it is something that will teach him how to work on tightening the muscles of his bladder, like through exercises.  It is suppose to be playful and taught through games and videos for children.  I was definitely happy to hear that.  All of these things are so much better than my baby having to uses a catheter a couple times a day.  If it was something that I needed to do, just as I had to perform his dialysis at home, and take care of his broviac when he had it, then I would do it, but for his sake, I would prefer that he have the least amount of painful or invasive things to endure.  I am so thankful that God truly answered my prayers on this one.  It's the thing that most people don't even think twice about that some of us pray for.  Thank you God!!!

Surprises

Today has been a day full of surprises, and not in a good way.  LJ and I were supposed to go home this afternoon, but that didn't happen.  We are still here at Boston Children's Hospital waiting for some answers, but there are a few different issues that have arisen since we got here.  Originally, we were coming to find out some answers to why LJ is having all of this diarrhea, but now things have gotten worse than what I thought.  During what was supposed to be a routine yearly work up, LJ had an ultrasound of his kidney and a VCUG (voiding cystourethrogram; a test to look at how well the bladder, kidneys and urethra are working.  It is administered by inserting a catheter into the child's bladder, which is obviously uncomfortable, and drove LJ crazy.)  After the VCUG, the doctors noticed that LJ had some reflux into his kidney that had not been there before.  Now, tomorrow, he has to undergo more painful and invasive testing called urodynamics.  This I am not exactly too sure about because I have yet to talk to the the urologists about the extent of the testing that he will be going through.  Some testing can be relatively simple, but others can be more extensive.  We just have to wait again until tomorrow to see what happens, and what the results are.  We still don't have anymore answers about the diarrhea, except that before we got here, I found out that LJ tested positive again for C- Diff.  This time though, they are going to try a different medication since the vancomycin didn't help before.  Other than that, the actual scope didn't reveal anything except that his colon and intestines look healthy,  They did biopsy some of the tissue to see if there was anything else that could be found under the microscope.  We are waiting to hear back about that also.  So, once again, not many answers, just waiting, until tomorrow.  Prayers continuing to go up, always trying to stay positive.

Back in Boston

It's been a while since I've been able to post anything.  We have been so busy though.  LJ and I just moved out of our apartment, and he's been doing really good adjusting to Kindergarten.  We've been dealing with this ongoing battle with whatever "stomach bug" he's had since forever it seems like, and it has led us to Boston, which is where we are now.  We flew here this morning so LJ could be admitted.  They are giving him something to clean out his system tonight (good times!!!), then tomorrow, he is scheduled for an endoscopy.  They are going to look for any signs of infection, inflammation, or anything that can give them any information as to what could be causing my baby to still be suffering from this tummy trouble.  It's so crazy that with all of the complex issues going on with him, this is the most pressing thing going on in our lives right now.  If he didn't have this to deal with, he would be doing so good, because otherwise he's been doing really good.  So, tonight, we're here, waiting for this procedure tomorrow, hoping for some answers......Waiting!

On another note, I think we are going to start making more videos, that way we can keep you guys posted a lot easier.  So be on the look out for those!

Catching Up

     It's been a long time since I posted anything, and we have been BUSY!!!  LJ finally got out of the hospital, the day after my last post, which was a blessing.   And.....He started school!!!  That was such a big step for my baby.  I am so proud of him.  My baby is getting so big.  Now, even though he's started school, he still has some of the same issues lingering in the background, which is the frustrating part.  We are still dealing with the forever ongoing tummy troubles; that is mostly it actually, but that is enough on it's own.  His labs are starting to become effected from it now, so my baby has to have a scope done, which means he has to be admitted into the hospital overnight and sedated; the whole nine yards.   I am really dreading it.   This has been going on so long though, and the doctors have absolutely no answers, so they want to take a look inside to find out what's going on.  I just hope they are able to finally tell me something after this is done.  I don't want LJ to have to go through this to still have unanswered questions.  So, we have that coming up when we go to Boston.

     On a happier note, LJ is doing really good in school.  He has such a good time in class, and is adjusting a lot better than I had originally thought that he would.  He participates a lot in class, and the other students like him a lot.  He even has a little girl that he says is pretty in his class, even though I told him he better slow down.  I so happy for him though.  The only thing is that when he sees me, he always has like a little melt down, and I have to give him his milk while he's there right now because I don't let the nurse do it, but that's another little story, lol.  I'll let y'all know about that one tomorrow.

My Big Boy with his teacher

Havin' fun at school 

   

Home on the Horizon

     Today wasn't such a terrible day as far as news goes.  We are still in the hospital, but the good thing is, LJ's labs were looking much closer to normal.  His creatnine finally started to come back down to his normal range, it was 0.66 (normal for him is closer to 0.50) after lingering at around 0.8 for a few days.  I think that the Prednisone helped bring it down because it helped with the inflammation, and the tacro level coming down helped too, just like Courtney (transplant coordinator from Boston) said.  His levels were stable today as well, so no adjustments were made to his medication doses.  According to the doctors, is his labs are still stable tomorrow, we may be able to go home, and continue to deal with the diarrhea outpatient.  I had to let the doctors know today that I did not appreciate the fact that Boston Children's was not notified of LJ being admitted until 6 days after we were here, especially when I asked the doctors here to call them.  The protocol for his medication that was followed just recently, should have begun 5 days ago when they identified the infection, but since Boston did not know about it, this was not done until recently.  I was, and still am highly upset at the fact that I had to contact Boston for answers to questions that Rochester should have known, and for feeling like I was kept in the dark about the seriousness of my child's infection.  Of course I got a bunch of meaningless and insincere apologies, but I had to let them know how I felt.  I am soo ready to get out of here, and so is my baby.  I just want to get home, and get back to my own bed, get him back to sleeping normally, getting ready for school.  I think he will be going very soon as long as we can keep this diarrhea under control since he doesn't have Cdiff.  As long as he's not having bad episodes, to wear he is going to end up having accidents at school, they will clear him to go.  I don't want him to get embarrassed at school either though, and he has to be feeling better.  Other than that, I don't want to keep holding him back, he needs his therapies, and to socialize and learn.

Lord, I pray that my son's labs look even better tomorrow than they did today.  I pray that we leave this place and only have to return for scheduled visits for years to come.  I think my baby is in terrible hands when he is here, and I really wish there was another hospital in the area that could provide him with the care he needs.  I have n idea why they give this hospital as much credit as they do, maybe it's just the poor staff.  Whatever it it, they need to take better care of their  patients, inpatient, and outpatient alike.  Hopefully, very soon we will see them from the outpatient side though,

Unanswered Questions

Being in this hospital is really stressing me out on a whole 'nother level.  Now it's not like this is the first time LJ has ever been in the hospital, so that's not even it.  This time, I feel like he's in here, and for all of this time, nobody knows much of anything, at least that's what they are telling me.  It's like, his diarrhea is still up in the air after numerous tests, and more tests are literally being ran as we speak.  Then there is the issue of why he was admitted in the first place.  The urinary tract infection that J has, is actually Pylonephrytis, which is a kidney infection.  This was just told to me today..8 days after he was admitted.  I am furious at the fact that I wasn't told about this before.  it basically is a bad UTI, and the symptoms of it are fever/chills, pain with urination, possible blood in the urine, all things that LJ was having, but the point is that nobody told me this.   All the attending doctor did was apologize for that, but it was a dry apology.  If you ask me, she didn't even mean it.  Another thing is that they couldn't even offer an explanation for why my baby's levels have skyrocketed the way they did, but today, they seemed to have dropped down a lot, which is good.  Another thing is...on top of everything else, Boston didn't even know that he was in the hospital, and when I found that out, from putting 2 and 2 together last night, it drove me up a wall.  So, I email our transplant coordinator there, and she said that they only found out because they called last night looking for LJ's labs.  I had been told days ago that the doctors here would follow up with Boston.  Last night though, they came in and told me they were starting him on a low dose of Prednisone for his infection that is to accompany the antibiotic per Boston's protocol, I knew they had lied to me, so I had to talk to Courtney (the transplant coordinator).  Since talking to her, I've calmed down, and she had answers for all of my questions, being that I got 0 from here.  Her thoughts were that his levels may have jumped up as a result of the diarrhea worsening due to the broad spectrum antibiotics he was placed on from coming in just recently.  She also said that the Prednisone helps with inflammation of the kidney and can help with the creatnine, and so can the stabilization of his levels, the tacro (Prograf) in particular.   Now, the diarrhea is something that is STILL being worked on, but if my baby can get back to where his kidneys are in good shape, I will feel a lot better.  I am still very disappointed and disgusted with this hospital and it's staff, but LJ is who's most important, forever and always.  So, fingers crossed until tomorrow I guess.

Stuck Here

We have officially been in this hospital for a week now, and we have no idea when we are going home.  When we first came in LJ was so sick he didn't want to do anything but sleep.  Now, thank goodness, he is feeling better, but things are still wrong in so many other ways.
 
     After running a bunch of tests, from blood tests, to getting urine samples, and more stool samples,  they finally came to the conclusion that LJ must have gotten a urinary tract infection.  By this time, we had already been in here for a couple days.  They already had been giving him all the antibiotics just in case, since he was having fevers and throwing up so he was covered, which was good, they just needed to find out exactly what kind of infection he had, if it was a true infection, so they could reduce the antibiotics down to the exact one needed to treat the particular bug that was attacking his system.   Now, at first, the consesus was that it wasn't likely for it to be a urinary tract infection because they are rare in boys.  The reason that I knew it had to be something like that was because of the way that he was acting when he went to the bathroom and when I changed his pamper.  He would cry and whine, I felt so bad for him.  My baby kept asking me to put Vaseline down there, but he wasn't sore or red, so I knew something was not right, and I was right, that's exactly what it was.  Come to find out, because of the diarrhea being so loose and frequent, that was an easy way for him to gt the bacteria in his urine stream.  So, back to the long term issue with this diarrhea.  The real crazy thing is though is that when they re- tested him for Cdiff, it came back negative this time.  Imagine my surprise.  So now here is another dilemma.  All the doctors are confused because they have no idea what is going on with the diarrhea as to why he still has it.  They have been running several tests on his stool since he came in, and NOTHING has come back showing any kind of infection to this day.  LJ was on precautions, meaning the doctors and nurses had to gown up before entering, and we couldn't go anywhere but his room.  Yesterday, they removed the precautions because I was flipping out.  I said "How can he still be quarantined when his tests are negative for Cdiff?"  The doctors and nurses were like deer in headlights, but eventually, later that day, the precautions were removed.  So today, for the first time since we've been here, LJ was able to go to the playroom.
     The big thing now, which they are baffled about, is his immunosuppressants.  For some reason, ever since we've been here, his levels have been all out of wack.  Right now they are to the point where they are actually being held off and on because the levels are extremely high.  They are so much higher than they have ever been and this is starting to make me nervous because when i ask them why is this happening, all they can say is they don't know.  At first they tried to blame it on the diarrhea, but I was like, um, no because he has had that since January and has been totally fine as far as blood work. so try again.  This afternoon they told me that they are going to be starting my baby on a low dose of Prednisone, which is a steroid, that he needs to be on while he's on the antibiotic for the UTI.  I'm going to be calling Boston in the morning though, because, this is something that should have been started days ago when he first started the antibiotic; which makes me believe that until they got nervous about his levels constantly rising, they did not keep Boston in the loop about LJ even being in the hospital, and that is a problem for me, so I have to find out for myself.  Sooooo, Until they get my baby's levels back under control, here we are...in this awful place.

Playin' peek a boo, I luv that smile 

Love of my life 

Flashback Friday

I forgot to add this video yesterday.  I was a little lost in my feelings, missing my Bae, and dealing with all the hospital stress.  Here is a cute video of LJ when he was just a little Peanut.  We were all together as a family, and everything seemed so much easier back then.  Lord knows I miss my love, and so does my baby.  I LOVE U BAE!!!!

That's ME!

Admitted

Here we are....in the hospital, just as I predicted.  I could tell by the way things were looking over the weekend that when I brought LJ into clinic yesterday, he would need to stay.  My baby just was not himself, and with the drop in wet diapers, that was a red flag right there.  Of course, just like they always do, they tried to send us home from clinic, saying that he dint even have a fever.  LJ was literally shaking because he had the chills, and I kept telling them, either his fever is just about to spike, or your thermometer is broken.  No longer than it took us to get from clinic to emergency, his temp went from normal to 104.  This was about 8 minutes at the most, and I think that's being generous.  Now, if I would've went home, I would've had to come right back.  I can't stand this hospital.  His fever has gotten as high as 106 since we been here and they still don't know what the exact cause is.  They have taken urine samples (it was terrible having to put my baby through getting a straight cath), stool samples, blood cultures, and no information yet.  All we know for sure is that he was dehydrated, which he is getting IV fluids for, so his kidneys took a hit, luckily not too severe, but pretty bad.  One doctor had the nerve to say, "Well, he is sick."  Well DUH!!! That's why we're here genius.  I swear, these people kill me.  So now LJ is NPO (nothing by mouth) and getting only IV fluids.   He is getting a few broad spectrum antibiotics since they don't know exactly what is going on yet, and we are waiting to see if anything shows up in these cultures.  Meanwhile, I just want my baby back......and we still are dealing with the Cdiff in the background of all this.  I find myself feeling like i just want to break down, but it's not me who has to go through it, I just deal with it.  My little boy is the one who is actually living it, I 'm just bearing witness, and that' what is so painful, that's all I can do.  I'm just here, but I am his biggest advocate, and I have to fight for him, this I do know, and that is all that keeps me going.

Even Worse

     Just when I thought that I had my hands full dealing with this Cdiff, LJ got sick out of nowhere the other day.  My poor baby got a fever out of the clear blue sky, and now, on top of everything else, we have to try to find out what is going on here.  He dealt with it pretty good all weekend long, but earlier, I noticed he stopped having as many wet diapers as he usually does.  That is where the red flag goes up.  Anybody who has a child with kidney issues knows, when there is a change in wet diapers, it's time to get to the doctor, so tomorrow, we will be right at the hospital.  It's hard to tell though, because he has the diarrhea, but I put a urine bag on him about 30 minutes ago just to get some kind of an idea for when I bring him in tomorrow.
     It hurts my heart so bad when my baby is sick.  I mean, he deals with so much, and he is such a trooper.  He rarely ever complains about anything.  I am truly blessed when it comes to that.  He deals with frequent blood draws, and all the poking and prodding that goes on at the hospital.  LJ has to go through so much more than other children his age, and he does it all with a smile on his face.  When he gets sick with things that are normally not a big deal for other children, they are always a big deal for him.  I hate seeing my Angel in pain, or unable to do the few things that he normally does.  Its bad enough that he can't run around and play, enjoy most things that he wants to, but to see him totally unable to interact just tares me apart.  I would give anything to take away all of his pain, to make all of his ailments my own.  I feel so hopeless, so helpless when my baby looks at me and asks me what's wrong with him.  I tell him everybody gets sick sometimes, but he says he's always sick.  It hurts me so bad.  He's so smart... too smart.  I just want to make him better.  It seems like it's always something though, and I don't know why, so I don't even really know what to tell him.  What do I say to him?  I ask the same questions that he does.  I try to stay positive.  I pray constantly.  I don't know what to do anymore.  I'm not going to stop praying, but I would be lying if I said that I don't get scared.  All I can do is keep going.

Where Do We Go From Here

It's been 3 weeks now since school started, and my poor Angel hasn't even had a chance to start school yet.  I feel so bad for him.  I know that he's only in Kindergarten and not missing that much yet, but it's the whole experience that he's missing out on.  The biggest thing is missing out on his therapies.  Most importantly, his physical therapy.  Our social worker at the hospital sent a request to his school for tutoring and services while he's out, but I haven't heard anything about that yet.    We've been to see Gastroenterology and Infectious Disease to try to get some stuff figured out as far as this whole Cdiff infection and getting rid of it once and for all.

     At our visit with GI  we decided to make a change to LJ's formula.  I felt that since he has been using the same formula since after transplant, it was worth trying something new.  I had been reading more about Cdiff and the fact that it needs to be fought off by "good" bacteria in the gut.  If  LJ is not getting enough "good" bacteria from the food he is eating, then it would be hard to combat the bad bacteria.  So, now we are in the process of switching him to Pepatamin Jr. with Prebio which has some of the "good" bacteria that he needs to help fight off the infection.  He has been tolerating it well, which is good, and we are slowly increasing to switch him completely to this formula.  LJ is also back on the Vancomycin, which he is getting 4 times a day, but unfortunately, it seemed to have slowed the diarrhea down the first few days he was on it, and now, he is back to going just as much as before....Ugh!  When we went to see ID, I spoke the the doctor about the different treatment options that are available.  She told me in adults, they do something called fecal transplant surgery, which is just as crazy as it sounds, but it has an extremely high rate of success.  It''s out something that they are trying on children, and not something thy do at all in this area anyway.  Plus, with LJ being immunosuppressed, it would not be a good idea to transplant somebody else's fecal matter into his intestine, regardless of his age, so that is out.  The other options, are to try another taper for the vancomycin, which we are doing, and we are going to add a probiotic to his regimen at the same time, to combat the bad bacteria.  If no improvement is seen in a couple weeks, then there is another medication called rifaximin, that is supposed to help with this overgrowth of bacteria, and we will be giving that a try as well.  For right now, that is the game plan.  Once we get to that step, they are going to run some more tests to see if there is anything else going on besides the Cdiff that could be making this harder to fight off once he has been treated long enough to where it should be going away.  Lord, I hope and pray that it goes away this time.  Not only do I want LJ to get to school, but I hate seeing my baby suffer like this.  He goes through enough outside of all of this.  It just seems so unfair.  My baby can't seem to catch a break.  Every time I turn around it's something else, or the same thing over and over, but always something.  I just want my boy to have a chance to be a child and have some time where his life seems somewhat "normal", whatever that is.

Heaven is Real!

I didn't know whether I should or not but I have to share this story with you guys.   So, last night like many night I had a hard time sleeping and I was up crying thinking about Josh.  No a couple of weeks ago around the anniversary of his passing I had asked for a sign just to know that he was watching over us.  So last night and I was dealing with one of my regular struggles when I got in the bed to lay next to my baby and I couldn't sleep as I lay there I started to doze off but I was struggling and all of a sudden I saw Josh and he talked to me he told me that he was watching over us and that he always watches over us and he sees me when I'm crying and that he wishes that he could hold me but for some reason when I'm crying it's hard for him to get to me and he said that I have to allow him to come to me so he said that I allowed him last night to get through to me and he asked he told me that he wanted to cuddle with me and I tried to ask him questions I told him there was so much I wanted to talk to him about it he said he didn't want to talk he just wanted to lay with me because he missed it so much and he just wanted to lay there, so I just turned around so we could cuddle.  I tried to reach behind me to feel him,touch my Bae.  I felt nothing but, as I lay there I could feel his body behind me and he whispered in my ear and he said Bae, I'm right here with you and he looked over at Jay and he said look at my boy.  The tears roll down my face and he told me he loves me and that he was always with me and he just miss being with me but he said that it was hard for him to come to me when I was crying.  I couldn't understand it, I still don't understand it but that's what he told me so I didn't tell anybody else this.  I just figured that I will post it here because I had to just get it off my chest but I haven't slept so good probably in almost all the years that he's been gone and it was comforting, but I probably cried as much today as I ever have I just know that is so hard, everyday is just hard and it doesn't get any easier.  I LOVE U BAE!!

Pesky Bug

I've been doing a lot of reading over the last couple of days even weeks trying to see if I can find out any information on why my baby keeps getting infected with this nasty little bug.  I was able to find out that the spores from it can live for weeks and actually even months on hard surfaces if you don't wash your hands really good which is a terrible thing to think about.  The article that I read talked a lot about the good bacteria versus this bacteria which is the bad bacteria and how we can get overpopulated with bad bacteria if there's not enough good bacteria to keep it in check which I think is the issue in my son's case because he doesn't eat a lot of table food which is what creates good bacteria and is able to fight off some of that bad bacteria.  I just know that I need to speak with his doctors and we have to come up with a plan together to try to figure out a way to fight this in a productive way so that we can keep him healthy because the thing is that I really want him to start school and I want him to be able to stay in school and most importantly I want him to stay free from this sickness because not only is it irritating but I know it has to be painful for my baby.  I'm sure that the way it originate it was probably threw his use of antibiotics because it started with a broad-spectrum antibiotic which was Amoxicillin and that's where this whole nightmare began back in January but now the main thing is to figure out how to stop it so if you guys want to check out the article that I was reading for yourself I have the link right here, but for me I'm going to try to find out what we have to do working with his doctors to try to figure out a way to keep this nasty bug and check before it gets any worse.

Ready or Not!

So LJ was supposed to start school on Wednesday but I guess you will be doing that we were all set with getting supplies and new clothes and about a week or so ago I got a call from his daycare saying that he had an upset stomach they told me LJ had been having loose stools that day at daycare so I called the doctor and they told me they wanted to have a stool sample they figured since he had recently stopped his vancomycin for his C diff infection, it might have just been a side effect.  Little did we all know, somehow he had got the infection again so now because of the fact that seed if it's contagious LJ can't start school on Wednesday like we had originally planned and now I have to wait for the doctor to let me know what the next steps are as far as him starting school.  I feel so bad for my little man because I thought that we were on a good track.  I thought that things were getting better since he had been on the antibiotics, but I guess once he stopped everything seem to go the wrong way again.  I don't when this is ever going to end.  I just know that I don't want him to fall behind when the school year is just starting it's like we take two steps forward to take 10 steps back.  It's one headache after another I swear.  I just know I want to hurry up and find out what we're going to do,  what the plan is and when I can hurry up and get my baby started in school because I want him to get used to the routine and get used to making new friends.. just the whole process.  I just want to get the ball rolling.  I think I'm more anxious than he is as far as get him back on track with his therapies; Physical Therapy, occupational therapy, speech,  everything just to get him back where he needs to be I'm anxious to get him back into Physical Therapy working on walking and I want him to be at his full potential.  I want him to be working on everything that he could be working on as far as physically and academically.  I want LJ to be challenged every way possible.  I just don't want my baby to fall through the cracks, that's the most important thing to me.  He's ready I mean he we've been to open house I've taken a tour of the school he seen his classroom, I've met his teacher, we're ready to go so all we have to do is get my baby healthy and we are all set we are ready to do this. We're ready to take on the school year.   LJ is excited and I don't want him to lose his enthusiasm.  He is ready to do this. We gotta get my baby in tip top shape.

Riding the Wave

     I would be lying if I said that I am not glad that the day is not over.  I got no sleep last night, and the the entire day was like a complete blur.  All I tried to do was stay busy, doing anything to keep myself from crying all day.  LJ stayed home from daycare and kept me company because I really wanted to spend the day with my baby.  All night last night, all I could do was look at the clock and think of what I was doing at different times 4 years ago.  No matter how hard I tried to sleep, I kept getting up, staring at the clock, staring at Josh's pictures on  my wall.  The pain is numbing.  It washes over me completely, like huge waves.  I feel like I'm drowning in an ocean sometimes, most times, and I can't swim.  It's hard to try to explain, especially to someone who has no idea what it's like to lose someone that you loved so much, someone that you still love.  How do you explain that all you want to do is just look into their eyes before you fall asleep at night?  How can you make someone else understand that all you want to do is just snuggle up under that person's arm and tell them about your day? What about when I just want to sit there and stare at him just because....how can I explain that?  It's so hard, and it hurts so bad.  It consumes me, and everyday I feel less and less like myself because everyday is one more day that I live without him.  That is one more day that I face the reality of my life never being what I wished for... what we dreamed of.  I am still fighting to make sense of it all.  Still trying to learn to swim.

Back to the beginning

Another Rough One

     Hump Day is truly fitting for today, for me anyways.  I hope everyone else is having a good Wednesday.  At least the week is half over.  It has been a long one for me, and I am definitely looking forward to it coming to a close.  I didn't get any sleep last night, and I slept off and on today.  It's funny because the day is hardest for me.  It seems like the sunshine is kind of depressing.  At night when I'm up, I don't seem to cry as much for some reason.  LJ talked about his Daddy again today.  he said "Mom, you love my Daddy right?"  I told him of course I do, and he said, "You love, me, and you love my Daddy, and my Daddy loves me too."  I told him that we both love him very much.  I know they say that children are more in tuned to their sense of clairvoyance.  I know he's been talking about his father a lot more than usual these last few days.  I don't mind at all because I want to answer any questions that my baby has, and I want him to always know that his Daddy would be here with him if he was able to.  Lord knows this year has been so hard on me.  I can't believe it has been 4 long years that I have been without the love of my life.  We had so many plans.  Now, I am at a point where I am finally starting to think about what now? Where do I go from here?  I never wanted to do it alone, but I don't even want to imagine loving someone else.  I don't know if that will ever happen, but I am so far from that place right now.  I have to first figure out how to find a way to make myself happy again, just for myself and LJ.  I hate that LJ doesn't get to know me how I use to be.  I try so hard, but I am not that person anymore.  Somebody stole my happiness from me.  I get joy from my son, don't get me wrong, but there is a different type of happiness that comes from being with the person that you love, and that is one that I lost forever.  I have to find a happy place, it won't be the same place, but I have to find one,...for me and for my son.  He deserves to see his mother happy, and we are gonna get there one day.  I know my Bae would want that.

Long, Sleepless Nights

     Tonight is one of those nights that have become way too familiar, a night that turned into this morning.  I can't sleep, and it's normal for me, especially around this time.  Tomorrow is the anniversary of the day that I lost the love of my life.  I can't believe it will be 4 years already.  The time is just passing me by.  I say that because I am still stuck in the past.  I am having such a hard time moving on and it's taring me apart.  So many people have told me that it will get easier, that the pain will subside, but it hasn't.  In some ways, I feel like it has gotten worse.  There has been so many times over the years, that I wanted to just call my Bae.  There were so may times I wanted to hear his voice, see his face, just for a second.  I wanted him to see LJ, to see how much he is just like him, how much they look alike, how much they act alike.  I just want him to see his son.  I just want my son to see his father.  LJ talks about him all the time, and it's so strange because he has been talking about him a lot more lately.  He's been saying stuff like "Mom, my Dad is OK, he feels better," and "My Dad loves me, and I love him too Mom."    It always breaks my heart a little, but he is right in everything that he says.  He asks about pictures, and he asks why Daddy can't be here with us.  I hate having to explain that part over and over.  I know it's hard for my baby to understand right now.   It's not fair that his Dad can't be here.  I don't understand it myself.  He should be here with us.  We should all be together.  I should not be explaining to my son that his Daddy is in Heaven and he can't see him anymore.  We miss him.  It hurts so much, I just don't know how to deal with the pain yet.  At least not in a way that is working to make me feel any better at all.  I don't know what to do, but I have to figure something out.

 

Working on it

I know it's been a little while, but it has been a long month for me so far, and it is just halfway over.  This is just a bad time for me in general and I am trying not to let it get me down.  In a few days, the anniversary of probably the worst day of my life so far is coming up.  I've been trying not to dwell on it, so we'll save that conversation for another time.  It has been the reason that I have been so distant with everything and everyone in my life lately though.  However, as a mother, there is little time for sulking, and sadness.  

  So....Anyway, last week I took LJ to see the Orthopedic doctor about his scoliosis.   I wanted to find out about getting him a back brace since his curve is constantly progressing, and I really hope that he doesn't end up needing surgery.  His physically therapist also came with us so that she could talk to the doctor about LJ getting braces for his legs.  He tends to scissor his legs when he tries to walk and gets excited, and he keeps his left leg on his toes when he's standing.  The doctor said it would be a good idea to have him fitted for AFO's for his legs, so that should help with his standing, and when he's taking steps.   He also said LJ can get a back brace, but his spine is very flexible, and can be pushed straight, so that is a good thing.  The only thing about that is it's gonna take a little while to get LJ fitted, then for the brace to be made and sized.  It's a process, and I understand that.  I just thought it was something that was in the works back in March when he first had the MRI to find out about the scoliosis.   I hate the feeling like things are dragging along when they shouldn't be.  Hopefully,once LJ get this brace, it at least slows the progression of his curve.  We talked about what could be keeping him from walking and the doctor said there are 5 key things needed to walk: Strength, Balance, Coordination, Willingness and I believe the last one was Muscle Tone.  The things that are problematic for LJ are the balance and  coordination, so we have to work on those two.  He has been walking for greater distances with his walker in therapy though.  Every little bit helps.  If you ask him, he says he'll be walking soon.  Only time will tell.

Broken Silence

I have to say this because it has been weighing so heavily on my heart.  It bothers me so much to get criticism and what is considered to be "tough love" when it comes to LJ.  I have done, and I continue to do my very best at raising my son, despite everything else going on with his health and mine.  Truth be told though, life is not easy, and that is just what it is.  I am a first time Mom, and all of this is new to me.  Whether LJ was born with any health issues, or not, I would have a lot to learn just like any other mother.  I just don't appreciate it when my efforts, or my struggle, is downplayed.   I love my family, let me say that; what family I have at least.  Anyway, i appreciate everything that they do for me, I mean, we all do things for each other.  That is what family is about, and I think sometimes people tend to forget that.  The thing is, I also think that with family being so closely involved, they tend to overlook certain things.  Maybe since when they see us out of the house, and LJ is doing well, and looking good, and I'm OK, they might forget that I have rough, sometimes sleepless nights.  It may slip their mind that he had terrible diarrhea for months, or was just in the hospital for weeks, for example.  The point is, they tend to forget what we go through.  In doing so, it is easy for someone to feel that the little accomplishments that I look at as milestones in his development, are just that.  To the naked eye, they may appear simply mediocre, but to me, knowing how far we have come, and what obstacles we face on a daily basis, I take every small step, as a giant leap.  It is just hurtful to be undermined as though I don't do enough as a parent.  I have never been one to ask for sympathy, but just for someone to acknowledge that I deal with a lot, and given the hand I/we were dealt, I think we are doing damn good, i don't care what anybody says.  My baby is leaps and bounds beyond where doctors said he would be today.  No, he is not where I would like him to be, but that is just reality.  He is doing great though, and I refuse to let anybody take that away from him, or me.  From having a medical issues, to losing his father at such a young age, he has a lot to deal with.  For me, having my fist child born with such intense medical issues, and losing my fiance, whom I planned to spend my life with; I am still dealing with the sobering reality of it all.  Anyone who can go to bed at night lying next to the one they love, not having to worry about taking your child for blood work in the morning, or frequent doctors appointments, hospitalizations, etc., there is no way that you can say anything when it comes to my life.  You have no idea what it is like....not even a little.

Progress

Happy Saturday Everybody!! Hopefully everyone is enjoying their weekend.  The weather is beautiful outside, so that is always a plus.  I am so glad that it is not as hot as it has been, but it is nice out.  LJ loves the nice weather.  I think the sun makes him a nicer person, lol.  The girls at his daycare said that since summer, he's been so much happier.  I'll take it!  I love the way he has been acting lately.  It's like, since he graduated from Pre- K, he has transformed,  it is the funniest thing.  I can't believe how much he has changed so fast though.  From the pacifier, to even how he eats.  He is completely done with the "Poppy", and as far as eating, my baby has done so good.  He use to not want to take anything in his mouth.  It's crazy though, because, he use to drink a bottle when he was a baby, and he use to lick stuff just like any other baby; Popsicles, etc.  Then, when Josh past, he stopped taking everything.  The doctors don't want to believe that he shut down after his Dad past, but there is not other explanation I can find.   Anyways, he's been getting speech therapy, and I've been working on him drinking again.  So between the two of us, LJ started on stage 1 baby food a few months ago, but now, he is on stage 3, and he is eating 2 to 3 times a day, and still getting his 3 tube feeds in with his g- tube everyday.  I am so proud of my Big Boy.  He eats the Go-Gurt yogurt for kids, and is drinking juice from my cup too.  I love that he asks to eat too.  It's so exciting.  Now we working on the physical stuff.  He is getting a stander to work on strengthening his leg muscles, and he's been practicing with a walker.  At home, we practice climbing on the couch from the floor.  He is getting stronger everyday,  It is definitely not easy, but my baby is a fighter, always has been, and all he needs is good motivation.  I just have to keep him motivated.  I am going to keep you guys updated with all his improvements, from eating, to all his steps.  Stay tuned, and be safe!

 

Changes

I'm sitting here late on this Throwback Thursday, just thinking about how time flies.  My baby is 5 years old, on his way to Kindergarten, and life is so different than I would have ever planned for my self at this point, but here we are.    I was looking at some old pictures of LJ and Josh, reminiscing of course.  I loved looking at them together.  I love looking at LJ now, and I often fantasize about how their relationship would have grown over the years.  How could I not?  Either way, I know my Bae is proud of our baby, just as much as I am, for everything he has, and is accomplishing.  Things change so fast, out of the clear blue sky it seems like sometimes too.  Just yesterday, I asked LJ could we get rid of the pacifier.  He looked up at me, and just said, "we sure can."  Just like that too, he hasn't used it since, not to sleep with, or anything.  This is only his second night going to bed without it, but it is such a big deal because he had his "Poppy", so he called it, all the time.  My baby is making some big boy moves out here.  He is changing so much, right before my eyes.  He's not a baby anymore.

I love this picture so much 

My baby in his car 

My little man in his boat 

My big boy playing his game earlier

Class of 2016

Happy Tuesday Everybody!! Today my baby graduated from Preschool.  I am so proud of him.  He did so good.  Even after being out of school for such a long time, after being in and out of the hospital, he did great.  My little man is going to Kindergarten in September.  I can't believe how big he is getting.  Time just flies by, it's so crazy.  I remember my sister talking about  how he would be going to school soon when he was just a baby.  It feels like it was just yesterday, but it snuck up on us, and now it's right around the corner.  We've been slowly trying to work on getting to bed earlier to get prepared for school. It is gonna be such a big transition for him.  I'm excited and nervous at the same time, but i know he will do good.  I just want to make sure that this school gives him everything that he needs in all areas, not just academically, or medically, or vice, versa.  Since we were in the hospital so much recently, I didn't get a chance to go to tour the school before it let out for summer, but hopefully they have some type of orientation for students and families before classes actually begin.  If not, I' sure there is something that can be arranged.  I am definitely going to look into it.  Anyway, LJ was so excited to see everybody at the ceremony today.  He loves being the center of attention, so when he heard his name over the microphone, and saw his picture on the big screen, he was all bashful.  It was adorable.  I love my little man.  It was a very nice ceremony, for all of the children of Daystar, but there were only 3 actual graduates.  It was LJ, and 2 others, he was the only one going to a school in the city school district though.  He is going to do awesome, I know he is.  I can't wait.

Little by Little

It's been a few days now, and its hard to say how much better LJ is doing.  The doctors say that by days 4 and 5 that this virus usually is the worst, and that's about where he is.  During the day he seems to have more energy than he did in the beginning, which is good, but he is still coughing a lot, which is still making him throw up.  That's what worries me the most because I know when he throws up, that's him losing out on his hydration, and that's where the problem comes in.  His labs were better today, so that is another good thing.  His creatnine was good at .45.  It hasn't been that low since right after transplant.  All of the doctors were surprised at that one.  They actually wanted to send us home today.  Between the tummy trouble, and him still coughing like crazy though, I wanted to stay another night, just to see what his labs look like tomorrow.  I wanted to make sure that if he had more issues with keeping his milk down, that I could see how it affected his labs.  He did throw up again tonight, so we will have to see what it does to his lab work in the morning, and whether or not they still feel as comfortable sending us home.  I can deal with everything on my own, it's just that I want to get home and stay there.  I am tired of bouncing back and fourth between home and the hospital, and so is LJ.  I mean, he still haven't even had his birthday party yet, and it's almost July.  So, I'm just holding my breath until the morning, hoping that everything OK, and LJ don't get any worse.  This cough needs to hurry up and let up on my baby cuz it's kickin' his butt.

Looking Back

I just came across this video I made for LJ after transplant, and it reminded me of how strong he is.  This is just a small bump in the road that we are dealing with right now.  My angel has been through so much worse, and came out on top every time.   It's never easy, but we will get through it.  He's a fighter, a conqueror.  He will be just fine.

Long Night

Last night I didn't get one bit of sleep, but that's how it is sometimes.  My poor baby was coughing all night, his nose was running, and his was puking off and on until he fell asleep.  After that, I just watched him to make sure he was good.  I was worried about him because I didn't feel like he was getting enough fluids all day compared to what he was putting out, then at one point his diapers seemed to taper off.  I spoke to the resident on call about it, but he swore that they were watching everything, and LJ was not getting too far behind.  They had him on his milk though, and he was spitting up, so I told them that he needed to be switched to IV fluids because it was no way he was gonna get any sleep if he kept on with the milk, so finally at 4 am, they did.  He went to sleep not too long after that.  This morning they did hook him back up to his milk, but he hasn't thrown up anymore, so that's a good thing, but I did tell them to have it going at a slower rate.  So far it's been OK.  Now, he is back to having his tummy trouble, and they tested his poops again.  Surprise, surprise, he tested positive for C- diff again.  So he is back on vancomycin, and now we have to see how much that doesn't work for him again.  It's back to the drawing board with that whole thing.   My baby is really catchin' it right now in this department.  He managed to get a away with feeling better for a day and a half, that is insane.   The plan is to get him on probiotics as soon as he is done with his medicine this time so that this bacteria doesn't gt a chance to repopulate hopefully.  He just never had these issues before, now he can't seem to shake it; this and the cold.  So, we are just here toughing it out til things get better I guess.  LJ said he misses his friends at Daycare.  I felt so bad.  I told him that he will be able to see them soon, he is supposed to be graduating at the end of the month.  At the rate things are going, I just hope that he can make it there to see them before some of them leave for the summer.

Poor Baby

It's hard seeing your children sick.  Not just for children with chronic illness', but for any parent.  For parents like me though, it is just a little harder sometimes.  The doctors found out that LJ has para influenza when they did a nasal swab today.  They are still waiting for his blood cultures to make sure nothing else is going on besides that though.   So, this is something like a bad cold they told me.  Of course I looked it up, and he does have all the symptoms.  They keep telling me that he probably caught it last time he was in the hospital, and he didn't start having symptoms until he got home because it takes a few days to manifest itself.  Like that's suppose to make me feel better or something.  I hate seeing him like this.  He is coughing non stop, and his nose is running like a faucet; it's red from me wiping it so much.  He's been throwing up and his diarrhea is back...wonderful!  He only had a break from that for all of a day and a half.  My baby is such a trooper usually, but when he gets sick like this, it kicks his butt.  He's really tearing at my heart too cuz all he keeps saying is he is scared and wants to go home.  Now, I'm use to him saying h wants to go home, but the scared thing is what's got me.  I just wanna break down, but I gotta be strong for him.  I just wish I could do more.   It's like, as a mother your children look at you like their savior, and when you can't help them, or make it better, you feel powerless, and I feel that way more often than not given everything that my little man goes through.  It's tough right now, but things will get better real soon.

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