Home Sweet Home

It feels so good to be home!  Let me first say that.

Boston went well, which was such a relief.  LJ's labs were all good.  The only thing was, his prograf level was a little high, so the dosage was decreased, with repeat labs on Monday.  His liver function tests were better though.  Right now the doctors are planning a meeting in the next couple of weeks, to determine the change that they are going to make with his medication.  LJ was taken off his cellcept which is one of his immune system suppression drugs, because of his elevated liver enzymes.  Now that he is off of that, he still needs another medication to replace it.  He has to be on 2 immunosuppressants, right now he is just on one, and the steroid prednisone.  Hopefully, they will find a mix that keeps his liver happy... soon.

Aside from that, everyone in Boston was so impressed by how well LJ is doing.  They were all so happy to see us, and see that he is doing good.  That is one thing that I LOVE about Boston Children's Hospital; they are very positive, and supportive.  Those things are extremely important to me.   I mean, I have heard some discouraging, and just downright hurtful things from doctors when it comes to my son and his health, so to have positive people involved in his care....I need that.  Anyway, in the past year, LJ grew 6 inches in height, normal is 3 inches on average, so needless to say, my baby is tall.  Everything else was good with his check up, which was such a relief.  It ended up being a good trip to the doctor.

Everything actually went pretty smoothly that day.  We were on time for everything at the doctor's and, even got to the airport a little before our pilot arrived.   I have to send a huge thank you to everyone at Angel Flight !!!  They are AWESOME!!! we had two amazing pilots get us to Boston, and back.  The best part is, they volunteer to fly you in their personal airplane....for FREE!  It is such a great resource.  Everyone is so friendly, I love it.  The only catch is that someone has to volunteer to fly us.  If no one does, we usually drive.  Either way, I appreciate any help that we can get.  Like I said before, it is so much easier by flight.

Of course we took a bunch of pics while we were gone, here's a few.....

LJ throwin' up the peace sign in the hotel room

All smiles, but know he so tired

My baby know he wanna walk so bad

LJ doing duck lips, lol :) 

On our way home, getting ready for take off

LJ got his Mr Potato head pilot

Snatched the camera for a selfie :) 

Knocked out before the plane even took off.  My baby was exhausted

UPDATE!!!!!:

I found this video of LJ when we were getting ready to fly home.  I had to share it with you guys.  I love to hear my baby's voice.  Just follow the link, I had to show you all this cuteness :)

Ballin' On A Budget!!!!

Whoa!  Spending all this money today got me thinking.  Being a single mother is not easy, especially when your little one has medical issues; trust me, I know firsthand.   Among all of the challenges, and obstacles we encounter, is the standing concern of finances, and just making it on a daily basis.  Now, like many of you ladies out there, I love to shop.  I mean LOVE to shop.  I swear, I get a rush when I make a purchase.  I joke, but sometimes, I think I have a real addiction.  Whenever I am going through something, and I can't seem to make myself feel better, I always turn to retail therapy as the solution.  Let me first say, I am definitely not wealthy.  Not in any shape, or form.  I struggle a lot, and I pinch pennies like crazy.  One thing that I always make sure that I can do though, is splurge a little every now and then.  It really helps me out :)   I make sure that I stick to a few simple rules to be sure that I get the most out of each and every shopping experience.  I don't just have myself to think about.  I have a son, and we like to look good.  Looking good is important; it makes you feel good, and I feel even better when I can look good without spending a fortune.

Here they are Ladies, my tips for Ballin' on a Budget........    

                                       Ballin' On A Budget 

     

    1. Stick to the basics

It is so easy to be drawn into all these bold, beautiful prints on some of these fabrics.  This is especially true for women's clothing.  While these designs are nice and everything, they do exactly what they are meant to do, Stand Out!  When you wear something with a design that covers most of your garment, that makes it so much more noticeable when you repeat it.  That means the more "extreme" clothes you have, the more clothes you need, unless you want to look like you wear the same thing everyday.  By keeping it simple, and basic with your bigger items, like jeans, dresses, sweaters, and coats for example, you can wear a certain item frequently, and just change up accent pieces, and accessories.

2.  Buy accent pieces

 This is very important in order to diversify your wardrobe without spending a lot of              

 money.  Accent pieces, like scarves, belts, jewelry, and even some pieces of outerwear,

 breathe new life into any outfit.  A plain black dress can take you from day to night,       

 business to pleasure, or work to play with the right necklace, earrings, scarf sweater, etc.,   it    can be one of these, or a combination.  It's up to you.  The possibilities are completely  endless, and it is sooo much cheaper to buy a new scarf, than a new dress.

3.  Shop off- season/ Sales

I don’t care what anybody say, this is one of the best ways to save money ever!!! I buy winter clothes in the summer and summer clothes in the winter.  Everything is always on clearance heading into the next season.  How could you resist?  I know I can't, and I don't.    I find some of the best pieces when I shop at the end of the season,  and I always get compliments on my clothes.  I mean hey, I'm not a celebrity, I'm not worried about all that craziness.   I just know I buy what I like, and what looks good on me.  Sales are a no brainer.  Everything is better on

sale, and be sure to use extra coupon codes, and discounts whenever available.

4.   Shop online

It is only my personal opinion, but I must say, shopping online is better than in store.  That is when you are shopping for something other than food :)   When you shop online, you get access to things you don't get in-store.   There are always online only deals, and such a broader selection online.  You can find items that aren't available in-store and everything.  Not to mention, if you sign up for Ebates.com, you can earn actual cash back on your purchases.  Earning money for shopping, I'll take it!!


 5.  Be realistic

Now this applies to several areas.  You need to be realistic first and foremost, with your money.  Don't  try to shop  above your means. If you have $100 to spend, it would not be smart to go buy a pair of jeans for $75.  You gotta be realistic with your needs and wants.  Also, please be realistic with your size when clothes shopping.  It might sound silly, but it can save you a lot of money.  I know how hard it is to admit to gaining a couple pounds, for instance.  If you shop for the size you were, or you wish to be, I guarantee, you will not get much wear out of your clothes.  Besides that, when you do wear them, they won't look good on you.   Like I said, looking good, helps you feel good.  So what if you have to size up, wear it with pride, and you will get a whole lot of wear out of each item.


6.  Feel good about your purchase

For me, this is a big one.  I will never make a purchase that is not an absolute need, if I don't feel god about it.  I mean, something that is only  a couple of dollars will get left behind if I don't feel like I am getting a good deal.  I make it a point to not buy anything unless I get excited about it.  A little weird, I know, but I work hard for my money, and I better be happy to let it go, or else I'm holding on to it.

                  Well, there you have it.  Just a few things to help keep your pockets happy :)

                                                             Thanks for reading!!!

Boston!!

Today we hit the road, or the air, should I say.  We flew to Boston this morning, and it was a pretty quick flight.  I hate flying , but it is the quickest way to get here.  The funny thing about it, is we usually drive, but I guess flying is the preferred travel method since I have LJ.  He loves riding, but he gets hot, and impatient; especially nowadays, he thinks he is the boss of everything.

So here we are, in Boston.  LJ has a doctor's appointment tomorrow, then we are headed back home.

I always get so nervous whenever we come all the way out here.  I feel like they are going to hold us hostage.  I get flashback of transplant time, and how long we stayed here for.  Being that this is where he had his kidney transplant, they basically have the final say when it comes to his care; as far as his kidney goes, that is.  My baby has to have blood work done, and get a check up with nephrology. Sounds simple, but it is going to be a long day.

Wish us luck everyone.  I will let you guys know how his appointment was.

My little man on Airplane Mode

Just woke up, hair lookin' crazy, ready to land

Motivation for this Monday

Last throwbacks of the night

Every time I get into pictures of my baby when he was small, I get lost in the memories.

There were undoubtedly some really rough times, but thinking back, those were the best days of my life.  It was a time when I looked forward to the possibilities of every day, even the scary things.  A time when I thought that love could and would conquer everything.  I will say that not one thing has changed since then,... Everything has!

LJ and big Josh back in happier times

I love his face

My Angel

I can't resist

So much cuteness

a Little spikey hair

Hiding from the sun

Strange lab draw today

I had to take LJ to the doctor today for repeat labs.  These were the follow up labs since LJ was taken off one of his immunosuppressants last week.  I always get so nervous when my baby has to go more frequently than normal to get his blood drawn.  On a positive note, the transplant coordinator in Boston said that his labs were improved today, so that was a blessing.
There was something else though.  When the nurses drew LJ's blood, these little red dots started to pop up on his skin, instantaneously.

 my baby's arm right after blood work

 I literally watched it with my own eyes.  This had happened the last couple of times we came for blood work, and when I asked the PCP.she said it was probably from holding his arm tight.  Sure enough, today, I saw it happen.  It scared the life out of me though to actually see them popping up.  I emailed Courtney (transplant coordinator in Boston) to tell her about it, and asked what she thought of this happening.  She did say to watch it to be sure it goes away quickly, and if it persists to let the doc know here at home, but she would give them the heads up.  She said it looks like "petechiae" and being that I never heard of this, I immediately went online.  I read so many things about these bumps, a lot of which were very scary.  It turns out though, that it was exactly what I thought, and the bumps came from the tourniquet being too tight when he was getting his blood drawn.  The nurses also use a heating pack, which may or may not exaggerate the issue.  I will be keeping a very close eye on it to be sure it goes away within a day or two, there is not doubt about that.  I tell you though, if it's not one thing, it is definitely another.

#TBT video

 When I stumbled across this video of my baby laughing at his Dad, I had to post it.  It brought tears to my eyes, but, I remembered to be thankful on this Thursday.  I am, and will forever be thankful for the time that LJ did get to spend with his father.  All be it very brief, he did have a chance to meet his  father, and although I wish it was not a relationship that came to such an abrupt end; I am thankful for it.  I am more thankful that my son still has me, and I will do anything in this world for him as long as I live. 

Yesterday, LJ and I were playing in my living room.  We were rolling around, and working on his standing, when my baby looked up at me and said, "Mommy I'm so happy".  My heart literally melted.  I just grabbed him and held him so tight, whispering "I love you" over and over.  I kissed my baby what must have been a hundred times.  It's moments like this, that life is truly made of.

Have a Wonderful Wednesday :)

This face makes my day,.....Everyday!!!!    He is the only motivation I need.  I love you baby!!!

No words!

Happy Monday Everybody!

I am feeling drained, but trying to remain positive.  LJ is still trying to get over his cold, but in good spirits as always.  He was scheduled to have the MRI of his back tomorrow, but since he has a cold, I decided to reschedule.  The doctors told me its always a little more of a risk when children have colds, because of the anesthesia.  So, better safe than sorry.  It's not like it is an emergency that he have it done now.  The doctor wanted to make sure there was nothing going on that they didn't know about that could be causing LJ's scoliosis.  He already had a head MRI, which showed nothing, now they want him to get one on his back.  I have no idea why they didn't do it at the same time.  I swear sometimes, theses doctors do some of the dumbest things.  Now, I don't have to worry about that headache.  At least not for a couple weeks.  I hate when my baby gotta be put to sleep anyway.  Other than that, my Pook woke up in a good mood, and that always makes my day.  He even had a good physical therapy session today.  We on a roll :)

Have a Magnificent Monday!!!

Changes

How much easier said than done is that one?!

I try to tell myself this, over and over.  I say that I will start sticking to it, but it never works.  Today, for example,  I get LJ's results back from his lab work.  Now, I had already known that his LFT's (liver function tests)  were slightly elevated 2 weeks ago.  That;s why he was getting his labs redone this week, to see f there was a change..... There was, the levels were even more elevated.  Me, myself, I start to panic.  I remember last time this happened, back in the summer, we had to rush to Boston Children's for testing; LJ got an ultrasound, and a bunch of blood work.  Of course, I was expecting the same thing.  We are supposed to be going on the 26th, which is just a little over a week from now, so I guess they let us slide this time.  

Since his LFT's are elevated again though, that means another change in his immunosuppressants.  That is something I get nervous about, because I want to, and I'm sure the doctors want to as well, be sure that he is covered as far as his new kidney is concerned.  He will now be going from using the immune system medication cellcept, back to using prednisone, which is just a steroid.  This is supposed to be temporary until the doctors in Boston decide on which would be a better combination of medicines.  Prednisone comes with long term side effects, and is not desirable to use on children long term.  LJ was on it for a little while before, and they say it will be an even shorter time this go around, so we will see.  I just hope that we can figure out a good mix for him soon.  With all the changes, my baby has to deal with things like diarrhea, and hyper activity; the prednisone tends to make children hyper, and the diarrhea came with the start of the cellcept.   When he can be on long term, and tolerate well, is what we all have to figure out.  

There is always something that comes along when things seem to be going relatively smooth, or at least, as smooth as they can go for the life that we are living.  Always something to shake things up.  I just wish things could just be ok for a while, like a loooong while.   Why is it always that the good times fly by, and the bad times seem to last forever???? I guess I'll never know!!!

Have a safe and blessed weekend!!!

Memory Lane on this #ThankfulThrowbackThursday

Now, I couldn't let a Thurday go by, without taking the opportunity to go through my pictures, and show y'all some adorable pictures of my LJ; the reason I wake up, and have the strength to go on each day; My whole entire life, in one tiny little body!!!!

My little handsome man loved music since he was tiny

Him and his fitted hats! That boy loves the Yankees, and don't even know who they are :) 

Just a man and his music :) 

Fitted cap again, as usual.  This time it's Daddy's favorite team, Dallas Cowboys :) 

Me in a nutshell........

Stay Blessed Everyone :) 

#Thankful Thursday

On this wonderful Thursday (which just happens to be my older brother's 40th birthday),  I was feeling like I have been a little ungrateful lately.  I felt like, for a minute, in the midst of all this chaos in my life, I forgot to be thankful. Now, I usually make it a point ever day, at least, every night, to think of at least 2 things that I am grateful for.  There is always so much more, but it should never be a problem to come up with 2 off the top of my head.  Last night though, I was so angry, so full of rage... for so many different things.  It was like the devil rose up in me, and I could think of a reason to be mad at any and everyone, and just had an overall bad attitude.  Anybody who knows me, knows that I can go from 0 to 100, in about 3 seconds, but this was different.  I couldn't shake this feeling,... this ugly feeling.  Right now, I can't even tell you what it was, aside from depression, but that's the best I could do.   I feel like I have the weight of the world on my shoulders at all times, and i guess, sometimes it gets too heavy before I even realize it.  But enough of that!

Today, I woke up, and looked at my son, my little miracle, who is getting so big.  As I was getting up to get dressed so we could go to the doctor's to get LJ's labwork done, I had all these flashes of much harder times.  The times when I wondered how I would get out of bed,....when I just didn't even want to get out of bed, let alone anything else.  I thought about my son, and all that he goes through, and still smiles so bright, and laughs so hard everyday,...even when he is sick.  It was like it just hit me, as it often does when I need a reminder.  I am so Blessed!  How could i ever forget that, or even let it fade from my mind at any time.  Yes, things have been bad, but they could always be worse....always.  And trust me, I have been in situations where it was like, it cannot possibly get any worse than this, ...and it did.

So, I got a reality check, courtesy of myself, lol.  It was very much needed though, because I swear, I didn't even like myself yesterday.

A little Inspiration today

Update on my trip to the Emergency room

So, I finally went to see the neurologist after the seizure that I had out of the clear blue sky a few weeks ago.  After doing some more testing, and a long discussion about my family, and personal history, ....I still have nothing.  The doctor has no idea what is going on as of this point. He did have me schedule a repeat EEG, I was told that I had one in emergency, but he couldn't find the results.  So I have to go back, and get these wires hooked up to my scalp for 90 min to see what happens, if they find any answers as to why this happened.   That's scheduled for 10/23, so I'll let y'all know how it goes.   It's so frustrating, and extremely scary to think about all the possibilities.  I always try to be a positive person when it comes to tough situations like this.  I know from experience, that positive thinking truly does yield positive results.  I can't let my imagination run wild until I actually know what is going on.

Today for example though, my baby is sick.  He has a cold, and it's kicking his little butt.  He has a runny nose, and a little cough.  Just looking at him, watching him battle something so simple as a cold, knowing that it is never simple with him... I get scared.  Not just scared about his cold getting worse, but scared about not being 100% for him.  I am my baby's rock.  I am all he has, just like he's all I have.  When it really comes down to it, there is NO ONE who can take care of my baby even close to the way I do.  From medications, to eating, to appointments, and even just what he likes, there is no one who could assume that responsibility if need be, and that is scary for me.  My son does not have his father, and even though all of his grandparents are alive and well, as far as I know, LJ doesn't have a real relationship with any of them, for different reasons.  That is fine and well, I have done a great job alone, and I can continue to, as long as I'm ok.  I have to worry about my baby's well being at all times, and I have to make sure I am well enough to take the best care of him.

Got a lot on my mind today, but I know that God gonna work it out for me.  Even when it seem like he not working, he is definitely on the job.

Stay Blessed Everyone!

Exciting Evening

Last night was such a big night for us.  It probably wouldn't be a big deal for most people, except that LJ is definitely not most people.
I guess I must have caught him in a good mood last night, because I actually got him to taste some cake.  Well, actually, the frosting.  It was whipped cream, and there was a little bit of strawberry in it too.  It's so funny because I just got an email yesterday afternoon, from the occupational therapist.  She was making suggestions on things to do to get LJ to start exploring foods.  Here is what she had to say:
"Joshua is a beautiful and very bright little boy – he has tremendous potential and I genuinely believe that will go on to do great things in this world.  His loving nature, playful personality, determination to master the things that are important and meaningful to him, and the loving support that he receives at home will take him very far! 

I did want to share some of those feeding suggestions, as we had talked about….the main thing is to get him comfortable with handling foods and sticky non-food items (e.g. shaving crème) …. this will really help with the ongoing desensitization.

OK, here goes….

1.      Encourage Joshua to play with tactile media such as shaving cream, play doh, and silly putty. He may need to touch these things with gloves on, or using wooden or plastic spoons

2.      Involve Joshua in play with food to help desensitize him to the feel of different foods. Paint with, or drive trucks through, pudding or jelly, cool-whip or whipped cream on a tray – have wipes available or wet facecloths so that he knows he can clean his hands.

3.      Starting with thicker foods such as jelly, mashed potato, peanut butter, or thick Greek yogurt, place small dots of food on Joshua’s lips and encourage him to “find” them with his tongue.

4.      Progress from licking potato chips to dry foods that melt such as cheese puffs or bits of arrowroot cracker – he can gently nibble or suck on these (the crumbs will disperse in his mouth.)

5.      Offer thicker foods (mashed potato, scrambled eggs) and encourage him to try very small amounts. You can vary the taste by adding salt/pepper or small amounts of hot or barbecue sauce, or ketchup.

6.      Have wipes and a bowl available for him to spit food into if he needs to when trying new food.

7.      Keep a list of new foods (with pictures if you can.) Encourage him to separate the foods he likes from the ones he doesn’t (e.g. on the refrigerator.) Use this to talk about food and also as a menu to help him choose items to try again. Introduce vocabulary words to help him talk about the tastes and textures that he doesn’t like.

8.      Reward food bravery in ways that will be meaningful to him. Examples include offering a sticker whenever he tries something new, or accruing tokens towards a small toy or other incentive."

Then, last night, we were having birthday cake, and LJ asked for his slice, like he always asks for food, but he started playing with it this time, instead of pushing it away.  Then.... he put the spoon to his lips, and licked it!!! SUCCESS!!!!  I was in shock, it's been so long since he tasted things.  This is such a big deal for my baby.  I am so happy for him.  

My baby was taring up that whip cream

Some more Throwbacks

I just could not resist sharing these pictures, especially after seeing that video of my baby with the breathing tube.  I had to put up pictures of happier times.  LJ is still in the hospital in all of these, but he was doing so much better.  No more breathing tube, or feeding tube in his nose.

He was talking up a storm, if only we knew what he was talking about, lol.

I love this pic. WHAAAAT!!!

My baby is just a cutie patootie right here

#ThrowbackThursday

Here is a video of my little peanut when he was still on the ventilator to help with is breathing.   It breaks my heart when I watch it because he was crying, and I couldn't even hear him  cry.  I had no idea what his little voice sounded like.

Week winding Down

I am so glad that this week is almost over.  It has been hectic, and very unproductive.  If it is one thing that I hate, it's feeling stagnant.  Everything seems to be at a standstill right now, and it is most definitely driving me crazy.
LJ 's physical therapy is at the top of my list of annoying things.  I am getting so fed up.  It's so funny how, when  my baby is doing good, and making progress, everything is fine, its all praises. Like the hour a day, twice a week that you spend with him is doing so much.   Excuse me, I am just so, so tired of so many people being involved in my son's life, and I feel like they are just all in our business just to get a check.  Not to help, not to do, whatever it is that their job actually is, .......but just to get paid.
My son is 4 years old, and from the day he left the hospital, there have been people in and out of my house on a constant basis, for some reason or another.  To evaluate this, or this therapist,  or this delivery, it's always been something.  So many social workers, and all kinds of people.  Most of whom, I would definitely say,have served absolutely no purpose in my son's life.  They have done nothing whatsoever to make any difference in his life.  Therefore, why are they around?  It's understandable, and even very much appreciated, for there to be some people who try to help with taking care of LJ's medical needs, since he is medically fragile, and I had to learn a lot.  However, at some point, enough is enough,  I take very good care of my child, and all his doctors and social workers tell me exactly that.  I just get tired of dealing with people sometimes.  I guess, being that I was in the healthcare field, and I know how it really is with people who are supposed to care about helping you.  There are very few who actually do, more often then not, ...people are just.....people.  My baby has come sooo far in his little life, and it just kills me how everyone else wants the credit for what he has done.  He made it this far because of him, because he fought, he still fighting!  I'm just tired, I need a vacation, please don't mind me.  I just needed to vent!

Have a Blessed Day Everyone!  

The Trip that Changed Everything

On this wonderful Sunday Morning, I finally finished putting the music to LJ's video collage from Boston.   It only took me like a year to do it, lol.  Seriously though, looking at all these pictures had me so emotional.  There were definitely plenty of smiles, and always positive vibes, but I know the story behind those smiles; it was such an emotional roller coaster.  This is a collage of the entire Boston trip when LJ got his new kidney.  I know it is a long one, but I wanted to have the entire journey.  This was a game changer right here.  When we left, we were living a completely different life than the one that we came back to.  My baby waited so long to have a chance at a "normal" life.  This was it... this is it, what we prayed for.  Through all the ups and downs so far, and even the ones still to come... I thank God for this moment in time, for allowing us to be as happy as we can be in the situations that we are in.  My son is my life, he is my reason for living, he is my heartbeat, ...My Conqueror!

                                              Have a Great Sunday Everybody!!!!!!

I was just looking through all the pictures and everything from when we were in Boston, MA for LJ 's transplant.   It is hard to believe it has been over a year now.  It was so rough at first, so many changes, so much unknown.  My baby was such a trooper through it all though, and always kept a smile on his face.

I love this video of him singing the Spongebob Squarepants song.  I had to share :)

Just Riding the wave today.  Trying to stay positive, knowing that I have a reason to stay afloat.

Throwback Thurday..a little late!

I know I'm a whole day late, but I had to put up some of these old pics of my little man.  I do not miss these days at all, but they was definitely a part of the struggle.  My baby is such a fighter.  Some days, I forget that things used to be so rough, and I am so thankful that we are at a point where we can say "used to be".

The first time I was allowed to EVER hold my son.  He was 2 months old.

He's here with a breathing tube in, still looking around, being nosey.  I love him!!

Here is my baby, looking GOOD!  Just a little over a month later.  God is sooo Good!!!

Have an amazing Friday everybody!