Hopeful Thoughts

I know personally that sometimes life can get you down.  Trust me, I have experienced some things in my own life that you wouldn't believe.  It can be hard, and sometimes it seems like there is no end in sight, but it is at those times that we need to walk by FAITH.  That is the only way to make it through.  If there is anyone out there reading this blog, feeling discouraged, down, and just like the weight of the world is on your shoulders........I feel you.  Sometimes you just need a good word, and here's yours........ God Bless!!!!

   

Please share, and Repost!!!!

AMEN!!!!! I needed this!!!!

Updates, ...it's been a while

I hope that everyone is doing well.  I feel like it has been forever since I wrote a post, but things have been crazy in my life.  Of course, I had to get back and update y'all on what's been going on.

First of all, and most importantly, ... LJ had his labs rechecked on Wednesday of last week, and they were much better.  The level of his immunosuppressant had went down since the decrease in dosage.  I was so glad to hear that.  I hope that we can stay in this safe place for a while.  Fingers crossed!

I still have to reschedule his MRI because he needs to have another physical, so that one is still in the works, and I will keep you posted.

Today was also Day 3 of school for my little man.  Today, he got a little sad after I left, but it only lasted a few minutes so I'm told.  I am so proud of him.  When his little friend saw him, he screamed his name, and ran up to LJ, it was sooooo sweet.  There was even a little girl that just started, and she was even excited to see LJ.  I love it!  He seems to be adjusting well, and that's good because school is right around the corner.  I didn't get any pictures today, but I really wish I did.  The good thing though, is that he is getting to do kid things.  He can finally get to know what it's like to NOT be so different from everyone else.   It's so hard to explain, but if you are the parent of a child with any sort of disability, then you know exactly what I mean.

I have been having so many ups and downs myself.  From car troubles, to health issues, and stress because m fiance's birthday is Thursday 11/19, and it is bringing the most serious bout of depression for me.  I am struggling, but Lord knows I will not keep fighting.

Prayers are always going up for good, and better days.

Throwbacks over time

My 2 Loves when life was so much better; LJ was just a baby

My little man watching a dvd on his personal player :)  at 2

LJ ready to jam to some music at 3

Playing with toys a the doctor's office this year

Day 2

So today was LJ's second day pf Pre-School.  So far, so good :).  I am so proud of my baby.  He has been doing so much better than I imagined.  I was even told that he did better with group activities with the other children today too.  That's my boy!  It's so nice for him to be able to do more than go to doctor's appointments.  I feel that that was starting to consume his little life.  Of course we have to do what we have to do to make sure he stays as healthy as he can possibly be, but my baby needs a life outside of the hospital.  Hangin' with family is always great, but now he can be with his peers.  He loves it too, and he was so proud of himself for staying the whole time today too.  When I came in to pick him up, he said "Mommy, I was at school all day.  I did it!"  I love my bad boy sooo much.  He's getting so big, and learning so much.  I feel like he is a totally new person everyday when he wakes up.  His vocabulary is developing so fast, and he is so observant, and curious.  He asks a million questions.  It's the perfect time!

LJ was off as soon as we got there.  

Ran into his new buddy on the road

Progress!!

Great Day :)

Today was such a good day!!! I am so excited!!!  It was my baby's first day of Daycare.  Yes, I said it....Daycare.  I know to many people this is not a big deal at all, but for us, and what we have been through, it is a HUGE deal.  I am so proud of my little man, you have no idea.  

LJ has been at home with me his entire 4 years of life.  I kept him like the boy in the bubble kind of.  I have always been so scared, and so overly cautious about everything.  I just want to keep my baby safe, and I basically felt like the only way that I could guarantee that, was if he was always with me.  He has only ever had two sleep overs at my sister's house very recently.  We are inseparable, and have been that way since the day I brought him home.  I realize now, that maybe I could have been a little bit looser on the reigns.  He needs friends, and socialization.  So, now my baby is going to Preschool/Daycare.

It's a very good Daycare for medically fragile children.  So far, I have been pretty impressed with how they have dealt with him, and how attentive they were to him never being in a school environment before this.  LJ had a ball today too, which was a huge surprise.  I was expecting him to have such an extreme meltdown, but he didn't.... he was good.  I tried to stay at a distance to get him used to me not being right there.  I even left for a little while, and he didn't cry at all when I did.  Everybody was impressed by that.  He did have a little fit when it was time to do table reading with the group.  He cried for a while, but they were able to calm him down.  Everyone kept telling me what a great job he did, and how much he exceeded everyone's expectations for his first day.  LJ got so much praise for having good manners.  The caregivers told me they were not used to the other children using manners, but LJ was very polite.  They had me feeling like a proud Momma.  I love my baby..., or should I say my big boy now :)   He even made a friend on his first day.....and he already said he can't wait to go back.

Of course, you know I was in there taking a million pictures for your viewing pleasure :) 

                                               Have a wonderful Tuesday!!!!

Yeeees!

Clairebear

I was just sitting here thinking.  What else is new.  I was reminiscing about some of the things my baby and I did this summer.  It seemed to just fly by, and i don't remember doing much.  Then I thought, I did do something awesome this summer.  On June 19, 2015, I was lucky enough to have the privilege to speak about the love of my life, Mr. Joshua.  I was invited to a dinner celebration thrown by the Clairebear Foundation, at which I was the guest speaker.

My baby and I before the dinner

LJ, myself, and my sister Mira ( LJ's biggest fan!)

On our way to go speak and eat, lol

LJ was so sleepy, but he was a good boy, love his life!

My beautiful Mom sneakin' pics 

LJ was ready to nap

My gorgeous Mommy and I

Us again

Oops, she tried to get out of that one :) 

During my speech.  I didn't even need my notes :) 

I ACTUALLY GOT A STANDING OVATION!!!! I could get used to this :)  

Now Clairebear is such an amazing foundation.  Taken straight from their Facebook page, a brief description, The mission of the Clairebear Foundation is to help families that have a critically ill child who needs medical care far from home. By easing their financial burden, the Clairebear Foundation allows these families to focus on their loved one. The Clairebear Foundation was founded in 2007 by Mike and Alisa Colyer in loving memory of their daughter, Claire.

The Clairebear Foundation has helped LJ and myself so much over the years.  They have assisted with things like traveling expenses for our many Boston trips, among other things,  You can find out more about the Clairebear Foundation and all the wonderful assistance and support that they offer for families of children who are medically fragile by clicking any of the links to take you to their website.   

It was such a pleasure to be able to tell my story, and meet the founders, as well as so many others that have contributed.   I wish that I could do this everyday.   I feel like public speaking is my calling.  Well, one never knows what the future may hold. 


Have a truly Blessed Sunday Everybody!!!!!

Mike, Alisa (Founders of Clairbear) and myself.  They are AMAZING people.  I love them!

My handsome man and I after dinner.

A Mom Moment

Everyday I try to think positive, and keep a positive attitude, especially in front of LJ.  Sometimes though, I have to say, like most people, stuff does tend to get the best of me.  It always seems like everything happens at once.  Like they say, "When it rains, it pours."  I mean, from financial, to social, to emotional, and even physical stress, it gets crazy.    It takes a lot of prayer, and a lot of patience, but I make it through...barely sometimes.

Today, I'm just having one of those days.  I'm stressin' about a bunch of different things.  None of which do I have any control over, as usual.  So, what can I do?  Just deal with things the best I can as they come.  That's all we can ever do.   Sometimes I get myself all worked up about things to the point where it makes me feel sick.   I tend to obsess over things, but I will be the first one to give somebody advice telling them to relax.  How ironic is that, right?!  Well, all I can say is, I am a work in progress.  I know I am working hard to stay positive today though.  I'm trying to be thankful for what is going right, but that list is growing smaller.   I always thank God for my son, and his continued health and strength, but goodness...  I am having a serious moment.  Lord give me the strength.

Thankful Throwbacks

Happy Thankful Thursday Everybody!  My son woke up with a smile on his face, so my day is already AWESOME!  I hope that you all have a great day as well.  No matter what the situation, nothing lasts forever.  Whether it be good, or bad.  Today is a chance to start fresh.

Being that it's Thursday, of course I had to show you guys some throwbacks of my little man.......

He was sooo small,... stickin' that tongue out

My baby had a little tooth coming at the top

Tongue action again :) 

My honey bun was ready to hit the street

Strength & Struggle

Follow- ups

Today was such a beautiful day.  The weather was nice, and the trees are so pretty outside.  I had to take my little man for a walk.   

I found out about LJ's labs from Monday......finally.  I was worried because I usually hear back the same day, and I had to send out an email to hear back.  That was strange.  The good thing is, though, LJ's liver function tests were all normal. :)   I was glad to hear that, but his tacro level (the level of tacrolimus, his immunosuppressant, in his blood)  was high, even higher than before they reduced it last week.  So, needless to say, we have to go in for lab work next week.  I don't understand what is going on with his tacro, he has been on the same dose for a while, and it has been within the range that the doctors like for it to be in for the longest.  For some reason, it's jumping up.  We will have to see what is going on.   I'll be taking him to get his blood drawn on Monday.  I have to take my Pookie to see his PCP to get another physical, so that he can have his MRI finally.  It's crazy because he just had a physical on the 1st of October, but it has to be within 30 days.  Well, we gonna try and kill 2 birds with 1 stone.  We'll see how it goes.

Speaking of MRI's, I actually have to get one myself.  My doctor called me and said my EEG was totally normal, but he would like for me to have an MRI.  The good thing is, I can DRIVE!!! YAAAAY!!!  Now we just have to see how the MRI goes.  Wish me luck!!!  I am feeling so drained, from going to the doctors if nothing else.  

Of course I'll let you know how it goes.  Have a Wonderful Wednesday!!

Labs again......

Happy Monday Everybody!!!!

Today, I had to take my handsome man to gt labs again.  The docs wanted to check on his LFT's         (Liver Function Tests), and his other labs as well.   It wasn't too bad today.  I had to watch, and be on the lab techs about how they draw his blood.  I told them they have to be careful, and watch how tight they are holding my baby's arm.  I did not like the whole thing with him getting petechiae the last couple of times.  Of course, they swore that they do the same thing every time, but that is clearly not true, because I was there... and they didn't.  That is why I always say, you are your child's biggest advocate.  You have to be their voice, I have learned this lesson time, and time again.  I don't play when it comes to my baby, and my temper is already terrible, ... so when you mess with Momma Bear's little cub....oh! you better be ready for what comes next.

I still have to wait to hear from the docs as far as how LJ's blood work was today, but when I know, so will all of you guys.  Praying for good results.

Here is my little man at the doctor's office waiting to get his blood drawn

Couldn't get him to look at the camera, too busy being nosey

Have a Marvelous Monday Evening Everyone!!!

Halloween 2015

Happy Sunday Everybody!!!!!   I hope everyone had a nice, safe Halloween with the kiddies.  I know my little man  and I had a good night.  We partied with the family last night, and LJ got to hang out with his cousins and friend.  It was a good time.  I haven't taken him trick or treating in a few years.  I am so scared of things that happen out there on a normal day, let alone when everybody is out there wearing masks.  Nope, we stayed safe and sound in the house.  My baby don't eat candy anyway, so he was happy.  Just wanted to show off that costume :)   My little Super Mario!!! I love it!!!!  Here are a few pics of my handsome man........

Laughing because he threw his hat right before the camera snapped

Mario was trying to get me!

Watching Super Mario Bros. on TV

Trying to put his boots on, he was ready to party

My Pookie got an attitude, but never put the game down, lol