Invasive or Less Invasive?

LET'S GO WITH LESS INVASIVE!!

Tuesday was a VERY long day! We had a head CT/ shunt series in Greenville first. I HATE CT's! Usually Dr Troup orders them with sedation but this time he didn't. (Sorry  Radiology nurses... I warned you!!!) I told you from the start that he was going to throw up...twice.... you'd have to restart the CT 2 times and I'd end up laying on top of him and holding his head down! So...what happened? Threw up twice, restarted the CT twice and I ended up laying on top of him for the procedure! Good thing I know my son and took an extra pair of clothes. Left GMH, went to Troup's office. (neuro) CT looked great, shunt working and draining like it should! So what now? He throws up twice a day...power vomits. I buy new car seats like they are going out of style and I spend more money cleaning my carpets in the van than I'd like to.

Dr Troup suggested :  It could still be his shunt. He has a type of shunt that drains constantly and SLOW. It could be building up pressure and not draining quickly enough so he could go in and change the valve to a different type. (require surgery)

Admit Landen to the hospital..put in a "bolt with a pressure gage on top" and try to INDUCE vomit. This will tell him at what pressure he starts to throw up...adjust his shunt with the information he gathers from that. (require admission and surgery)

Refer him to a GI in Greenville (since Levine's GI Dr's aren't good either) and run tests to see if he is digesting his food "normally" (require more scans and throwing up and tantrums, more hatred for Dr's, and depending on the results....surgery)

Or... he's aspirating and that's what we will deal with the rest of his life....or he is having migraines which can cause him to throw up..he does tell me his head hurts and slaps the back of his head....At this point, I don't know what's going on but we CHOSE the LESS INVASIVE...GI appt in Greenville and go from there! (Apology in advance to the nurses and GI Doc we will be seeing soon! My son HATES Dr's and nurses of ALL kinds... no matter how funny you are and no matter what kind of sticker you offer him! Just saying!!!!)

A few picture updates...

Landen LOVES his backpack and thinks he is going to school...until I told him I couldn't go with him! He quickly changed his tune on the whole school thing! =)

Yesterday he said, "mom, walk, backpack, school, c'mon"  Which meant he wanted in his walker...with the backpack on, and I was going to school with him! He walked towards the door and said "c,mom mom!" I told him I couldn't go to school with him that schools don't allow mommies to come with them. He started to cry and said "me, home" =)

Wesley C. Jonas "Wes"

6 years ago today I lost someone I love very much! I can't even begin to express the pain I feel inside on this day every year. I miss him so much! I miss him every day but this day the pain hurts the worst! Wesley Charles Jonas...My brother!!! =(

 I remember the day before his accident we were at my parents house and the kids were in the pool.(It was seasonably hot that year) Wes comes running outside with just his M&M boxers on and jumps into the pool splashing me and the kids. I regret leaving that day. I regret not staying and spending more time with Wes. When we left that night I remember him standing in the kitchen (of course with just boxers on) he was fixing him a hotdog and he looked up, smiled real big as we were leaving, and I said "Bye Wes, Love you!" I soooo wish that I had given him a hug and held him tight! If I had known that that was the last image, the last words, the last mental picture I would have of my brother I would have stayed there forever!!!

                      ~Sept 27th 2006...The worst call of my life~

It was 8ish' Wed morning on Sept 27th when my mom called and asked If I had heard from Wes. I told her no, that he was probably still with his girlfriend and he would be home soon. She said "he is never late for work, I am scared something is wrong".He worked for my dad and they always left the house at the same time every morning. I assured her that if something were wrong he would have called dad. I told her that he was probably arguing with his girlfriend and that made him run late. When I got off the phone with my mom I started calling Wes. When he didn't answer time after time after time I started to pray. I prayed my entire way to work that Wes was ok. I got to work and called my mom to see if he had called. She said "No, something is wrong I know it." Before I got off the phone with mom, I said "call me once you hear from him." I started seeing my patients and forgot all about the conversations with my mom until I was in a room with a patient and I kept hearing the receptionist calling my name over the intercom for line 1. I blew it off b/c I was with a patient they could take a message. A few seconds later, the receptionist knocked on the door and told me I had a call and it was an emergency! My heart stopped, and I felt sick to my stomach.  When I answered the phone, all I heard was my mom crying, and saying "Tosh, I'm sorry but he's gone!" I kept telling her "No! Tell me the truth." That was the worst day of my life! I never got to see my brother again. I never got to say a proper goodbye! The rest of the day was a blurr. The next day I got to go say goodbye to my brother but not the way I wanted. A cold room with a funeral home assistant and I could only see and hold his hand. They wouldn't allow ANY of us to see any more than his arm..up to his elbow.

It was a Hit and run car accident and no one was ever found or charged for my brothers death. He was 24 years old!

I think of him often, pretty much every day. I can be driving and hear a song that reminds me of him or Zach will say something that I can totally hear Wes say, or Landen will be doing something silly and I can see Wes laughing at him.
 I remember his smile, his laughter, his goofiness, his love for martial arts and his desire to fight in a MMA (mixed martial arts) arena. He was training to do that. He had his black belt that he earned when he was a teenager. I often wonder where he would be now if he were still with us. I can see him fighting professionally and loving it.

One day I will see Wes again. Until that day, I will continue to love him and think of him and remember him each and every day. I will tell Landen all about his Uncle Wes and what a great young man he was and that one day he too will get to meet his Uncle Wes! Today, he will go with me to see Wes at his grave site. He won't know what we are doing there and I'm sure he will just try to pull up all the flowers on EVERY grave and want to get down and crawl all over the place but I want Landen to know that his uncle/ my brother was loved very much and every year we will go and place flowers and say a quick little prayer for the uncle he never had a chance of meeting while on this earth!

To my dearest family, some things I'd like to say...
but first of all, to let you know, that I arrived okay.
I'm writing this from heaven. Here I dwell with God above.
Here, there's no more tears of sadness;
here is just eternal love.

Please do not be unhappy just because I'm out of sight.
Remember that I'm with you every morning, noon and night.
That day I had to leave you,
when my life on earth was through,
God picked me up and hugged me and He said, "I welcome you."

It's good to have you back again;
you were missed while you were gone.
As for your dearest family, they'll be here later on.
I need you here badly; you're part of my plan.
There's so much that we have to do, to help our mortal man."

God gave me a list of things, that he wished for me to do.
And foremost on the list, was to watch and care for you.
And when you lie in bed at night,
the day's chores put to flight.
God and I are closest to you....in the middle of the night.

When you think of my life on earth,
and all those loving years
because you are only human,
they are bound to bring you tears.
But do not be afraid to cry; it does relieve the pain.
Remember there would be no flowers
unless there was some rain.

I wish that I could tell you all that God has planned.
But if I were to tell you, you wouldn't understand.
But one thing is for certain,
though my life on earth is o'er.
I'm closer to you now, than I ever was before.

There are many rocky roads ahead of you
and many hills to climb;
but together we can do it by taking one day at a time.
It was always my philosophy and I'd like it for you too...
that as you give unto the world, the world will give to you.

If you can help somebody who's in sorrow and pain,
then you can say to God at night...
"My day was not in vain."
And now I am contented....that my life has been worthwhile
knowing as I passed along the way, I made somebody smile.

So if you meet somebody who is sad and feeling low,
just lend a hand to pick him up, as on your way you go.
When you're walking down the street,
and you've got me on your mind;
I'm walking in your footsteps only half a step behind.

And when it's time for you to go...
from that body to be free,
remember you're not going...
you're coming here to me.

"Focks, Baces, and Dilemas

Landen got his new focks (socks) and  baces (braces) the other day...Finally!! It's been 3 weeks since we have had any braces for Landen  since he is growing and gaining weight so quickly. His weight the other day...33lbs. Holy Cow..Yikes.. No wonder my back kills me!

Lots of Dilemas lately~
Dilema 1.~  Landen has become terrified of vitalstim and it is absolute torture to try to get the probes on him. So, we are going to stop it for now and see how things go but it's not looking good.

Dilema 2.~Without vitalstim he will continue to aspirate and continue to throw up and he will always need the G tube. As of now he still throws up atleast twice a day...power vomits...not just a little spit up. We have probably spent well over $700 on car seats in the past 2 years b/c of how much he throws up in the car. In fact I just bought another one yesterday b/c you can only clean the car seats so much before they start stinking and you can't get that smell out.(So make that $800 on car seats!) =)

Dilema 3~ If Landen keeps gaining weight it's going to be really hard for him to walk and put weight on his little teeny tiny legs. Hellllloooooo chunky monkey!

On the upside of things~  Landen is the happiest little boy. He is loved beyond words, he loves his bubba and sissy like crazy, he is talking more and more, he has a great sense of humor, he knows how to melt my heart with his huggs and kisses, he is such a loving little boy, he is smart, he has his PT wrapped around his little finger, he is just a joy to have and I am blessed beyond words to be his mommy. Even the investigator that came to our house (for DSS Adoption) said, "Gosh, I've never seen a child sooooooo happy." She kept saying, "He really is happy all the time, isn't he?"
When I look at my sweet boy I think "My cup runneth over"

"TO BE A CHILD IS TO KNOW THE JOY OF LIVING,
TO HAVE A CHILD IS TO KNOW THE BEAUTY OF LIFE!"

HOMESCHOOL~

I've had several people ask how homeschooling is going and I want to say... I LOVE IT!!!! Both of my kids are very smart and I think most people have the perception that homeschooled kids don't do alot of work or they aren't smart...NOT TRUE! You have to have 24 units to graduate highschool...After this year, Lexi will have 25 and she's just a Junior. She will be going to a 2 yr College next year  (her Senior year) to earn double credits for graduation. Colleges LOVE that!

As far as Zach... He is too smart. All advanced courses and even taking Spanish(Rosetta Stone) with Lexi this year. He will have 2 yrs of a foreign language by the time he is a Freshman.

                                Other reason I LOVE homeschooling...

1. We use Abeka curriculum which is used in private schools and built on academic excellence and christian character. Public schools do not use these books because they teach from a Christian perspective....How sad is that? That's what is wrong with the world today!

2. We have the freedom to pray before school, during school, after school, bless our lunch, etc.  If these practices were allowed in schools I truly believe the schools would be a much safer place to be, kids would not be so unruly, less bullying, more well behaved kids. I also believe that these practices need to start in the home.

3. I can give my son the scriptures and have him read them as an elective and get credit for it instead of him taking some class where he has to carry an egg around and make sure he doesn't drop it! I'm sorry but carrying an egg around and "taking care of it like it's your baby" is a waste of time when you can teach your children GOSPEL PRINCIPLES AND TRUTHS!

These are just a few reason why I homeschool my children. It's not for everyone. I even had a mom at therapy the other day ask me why I am punishing myself by homeschooling, and adopting another special needs child... My answer to her... I LOVE my kids. I LOVE the fact that I have the freedom to teach my kids gospel principles at home and can add that to our daily curriculum. I also said... "Do you see him ( Landen)? Do you see how happy he is? That's why I want to adopt another special needs child. I can't imagine where he would be if he stayed with his birthmother. All I know is that he is happy, he is healthy, and he is MINE! I also told her that If I could financially afford it that my husband and I would have about 30 kids in our home... EVERYONE deserves to have a family...reagardless of their disabilities. Everyone deserves to be loved and to feel safe and to have a home with 2 parents that will love and protect them. THIS IS NOT A PUNISHMENT!!! Shame on her!!!


"TO BE A CHILD IS TO KNOW THE JOY OF LIVING,
TO HAVE A CHILD IS TO KNOW THE BEAUTY OF LIFE!"

 LANDEN IS DOING HIS SCHOOL WORK TOO!!!

 TAKING A BREAK FROM SCHOOL WORK TO EAT HIS LUNCH (THAT HE THREW UP LATER)..... =( 

 WATCHING A LITTLE TV WITH HIS BUILD A BEAR FRIEND

 READY FOR SOME CHURCH...

 USC MASCOT....GOOOOOOOO COCKS!!!

 

A Taste of Crazy

It seems lately I am late for E.V.E.R.Y.T.H.I.N.G.!!!  I can't keep my head on straight! I will leave the house, get down the road and realize I left something and have to turn around or I just simply can't get out of the house on time for the life of me? On days that we have therapy, I seriously feel like I am running around the house like a crazed lunatic until the time I dash out the door. I seriously have too much going on and I'm always in a chaotic rush~ So, what do I do to add to the crazy??? Decide to homeschool my 7th grader ALONG with my 11th grader! Yes, this is a taste of my crazy...and to add another adoption... A Taste of Crazy!

Some days I feel like resigning to my bosses (AKA...my kids) =)
It's those days when I am in my chaotic rush( 6 days out of 7) when we have 3 therapies a day, Dr. visits on top of that, baseball practice for 2 hrs, grocery shopping, paying bills, cleaning house, cleaning up throw up, wiping a dirty bum, being a referee between the kids b/c all I hear is "Mom, Landen is getting on my nerves" , Landen screaming "mom, mom, mom, mom, mom, mom, mom, on and on and on", phone calls making f/u appts for Landen, trying to get everything ready for homeschooling 2 kids, cleaning up toilet paper in the bathroom or plunging the toilet b/c Landen just likes to take toilet paper and flush it in the potty, cleaning up cereal that Landen got out of the cupboard and decided to dump on the floor and kick it all around.. Need I go on? It's those days that I want to resign! So here is my letter of resignation~

08/14/2012
Name: Tosh Black
Position: Doer of EVERYTHING

Dear Sirs and Madam, (Lexi, Zach, and Landen)

I am writing this letter to inform you of my decision to resign from my current position. I have reached this decision after a very long prayer and after our inability to communicate effectively and my ongoing frustration as manager of this establishment (The Black's House) because of the fact that no one seems to hear a word that I say...EVER!!

I have worked for you for ..going on 17 yrs now and will continue to work for you until you can find an adequate replacement that is willing to work for free and meet your unending demands requests! (Good luck with that) I am hopeful that you will find someone that can handle the constant fits, writing on the walls, unending messes, food spills, talking back from teenagers, constant friends over at the house, and constant travel that this job requires... etc, etc, etc.

I am taking away with me some important things that I have learned from working here including how to not pull my hair out patience, almost cursing under my breath communication skills, and removing ink from the leather couch, problem solving skills.

Thank you for this opportunity to be abused serve this Company (The Blacks)

I will end this letter without saying anything else b/c One of you is pulling at my pants leg and screaming "mom, up!" and needs to be changed or fed or bathed or I need to clean up the newly spilled fruit loops on the floor!

(Before anyone gets their panties in a bunch, I don't want to resign from my job as a mom, this was meant to be sarcastic so please don't write me and tell me that I shouldn't be adopting another child if I can't handle the 3 that I already have)

Sincerely,

Mom of 3 and soon to be 4!

(No, this is not me but how I feel!)

Homeschool, back to school, baseball, therapy, vital stim, and Milkshakes!

Well this summer has really been too hot to enjoy! We've gone to the beach, we've gone to Atl to see the Braves, went to all the Allstar games that Zach played in (in 100+ degree weather) we've continued Vitalstim therapy,  OT, PT, Speech, Shriners visits, Ultrasounds, MRI's, CT's and we've eaten lots of Milkshakes (Landen's favorite!) 

Now it's time to get ready for Back to school! =(    

1. Baseball practice and games
2. VitalStim Therapy
3. OT
4. PT
5. Speech
6. Shriners and other Dr appts
7. Homeschool (Lexi) 11th grade
8. 7th graders homework and projects. I'm going to vent for a few minutes on this subject! I graduated from HS in 93' and I paid my dues doing homework and projects and I went to College and paid my dues there as well with papers, internships,etc. WHY ON EARTH do my kids have homework that I have to assist in, projects that need PARENTS to make stuff (I'm not a crafty chick so I usually have my mom help with these things) But it's not just Zach going back to school, it's me too!

ANYWAYS... An update on Landen and his therapy~

VitalStim is going well (I think). Lets just say he is tolerating it -somewhat-  We won't know if it's really helping until we have another MBS sometime late Aug.
He is graduating from Occupational Therapy at the end of August! =) 
He still has texture and sensory issues that he will ALWAYS have but he has made some huge strides and we will continue to work on those things at home.

His PT thinks Landen is "overweight".  Landen doesn't like to walk in his walker and his therapist thinks it is b/c he is getting fat and lazy. He's 2!  He has hip dysplasia as well so I know it's not easy for him to walk with one leg shorter than the other, no muscle tone in his legs (he gets weak trying to hold up all his weight) and it's not b/c he is fat. I mean he's 2 and wears a 3T and some 4T shirts... but he aint fat! =)
My boy loves him some Mcdonalds! Typically when we leave therapy Landen says "fry- ice cream" and momma gets her fat boy some fries and a milkshake!  He's had his feeding tube for 9 mos now and he use to not be able to eat anything without aspirating/choking and throwing up but since we have been doing VitalStim he hasn't thrown up nearly as much...so when Landen wants something to eat now...anything to eat.... I happily get it for him!

What else?

• He has been casted for new AFO's and we are waiting on those.
• Our Shriners visit Wednesday went well, we received results from his ultrasound, CT, and cervical spine. All were fine. His bladder doesn't hold as much as they would like BUT atleast we are still cath free! There is no damage to his kidneys so that is GREAT and his shunt is draining perfectly. Cervical spine was good, he does have a curviture but it hasn't gotten any worse. GOOD NEWS! =)

Lastly.... We are waiting to complete our HS. Our Social Worker is 99% finished with the homestudy but we have 1% left before we are completely done! Thank the good Lord! Going through this process for the second time around is even harder.  Can't wait to add some pictures of our newest addition when we finally adopt again!

That's it for now!
Will download some random pics from this summer really soon!

Yay for Monkey!

No picutres for this post b/c it would be just PLAIN gross...but......


MY BABY JUST POOPED IN THE POTTY!!!!


:)

Too stinkin' HOT to be outside

We haven't been too busy this summer. It's just too stinkin' hot to get out and have fun! Landen doesn't do well with the heat and having asthma doesn't help the situation. We went outside the other night (at almost 8pm) and we were out maybe 30 minutes cleaning out his pool and taking a wagon ride around the yard. He was pouring sweat so we went inside...about 20 minutes later....the throwing up began. He just gets over heated and then starts vommiting. Needless to say, we won't be going out until winter! :)

Other great news...

We got the results back from his MRI and he DOES NOT need the decompression surgery...yet...and we hope he won't EVER need it. Now I am just crossing my fingers that next week Shriners visit goes well. (He has CMG, CT head, Ultrasound scheduled) I'm hoping there is no reflux and we won't have to cath yet.

We FINALLY finished our homestudy through DSS minus the final fire inspection that will be completed in 2 wks. Now we can start looking through some profiles and see what that leads to! :)  Exciting and stressful time! We are ready for our family to grow again and their are SOOO many children that need loving homes. God has blessed us with 3 amazing children and we are thrilled to see what else He has in store for us.

Last but not least~ We found a speech therapist that will be coming to our house to start VITAL STIM TODAY!!! She will come 3 days a week for the Vital Stim and she'll also come for speech therapy!  This is certainly the best news we have gotten! Now I can see the future without a feeding tube! hip hip hooray! :)

Here are a few pictures of what's been going on...inside the house.

Landen likes to be "work" on his train with his tools. He basically just hammers all over! :)

Monkey LOVES to eat some grits! He makes a huge mess, but what fun is it if you don't make a mess? It just tastes so much better when messes are made!

Landen loves to "boo-boo" on the potty! Although he has never pooped in the potty, he did however pee when daddy was taking this picture...hence the big thumbs up!!! He usually sits on the potty before bath time in the am and pm. His potty training will not be like every other toddler his age. His will eventually consist of catherizing on a timed schedule. In the meantime though, we will sit him on the potty as much as he wants!

Nap time! This is where we end up both during nap time and bed time or even in the middle of the night. Who needs a bed when we have a floor :)

Sis and monkey watching tv from our bed. He sure does love his sissy!!