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Posts from the ‘Medical’ Category

Kick in the Gut

So sick of OMS……repeat SO SICK OF OMS.

I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health.  It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics.  It has been a bur in my saddle.

I called our local hospital and they said they could do it.  Yay.  Then the nurse from our doctor’s office called and said she was facing resistance.  She said that because Hunter is “medically fragile” that they will not see him.  He is not a do therapy and get better kind of kid.  He is a do therapy and maintain his status type of kid.

I’m surprised I heard anything past “medically fragile.”  I think I did miss a lot because tose 2 words, used in a sentence with my son, cut me to the core.  The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. dependency on medical care for which daily skilled (nursing) intervention is medically.  Maybe I knew that, deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.

The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition.  I sit here and watch him and I see that he is shakes….I see that he struggles with walking….I hear his speech issues….his food issues….his eye twitching…..and I think he is medically fragile.  There is no cure.  There are massive drugs he has to take to maintain his health but those drugs have massive side effects that has adverse effects on his health.  It is a double edged sword.

This disease is horrible.  It is uncertain.  It is uncurable, by man’s standards.  I hate it but I’m reminded of my sweet friends Mr Cliff and Ms Jan…..as I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine*  It does not say “be joyful when things are great and everyone is behaving and healthy.”  It says to be joyful ALWAYS.  Be thankful in ALL circumstances.

So…what am I thankful for?

He is alive.

He is with us.

He has an amazing support group.

He has doctors who are going above and beyond.

We get the same nurse for every treatment.

I have a great relationship with his mom.

I am able to email his mom and keep her up to date.

My sisters.  My brother.

My parents and my mother in law.

The support of so many people that I know and love and that I don’t know.

A wonderful church, who prays for him.

All our prayer warriors.

Kids who see a need and meet it.

There is so much to be thankful for………….even on the bad days.

 

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Opsoclonus Myoclonus Syndrome Update

It has been 6 mths since Hunter was diagnosed with Opsoclonus Myoclonus Syndrome.  You can read about it here:   The Rogue Zebra Has Been Caught and Named  It has been a LONG HARD road.  I cannot even describe how hard it is to watch him, day in and day out.

Everyday is hard.  I cannot even remember what it was like when he was “normal.”  Where he was 98% potty trained, speaking well, able to eat, sleep….just being sweet.  Now, our days are filled with Parkinson type shaking, slow and methodical speech, hypersomnia or insomnia, not eating well, not drinking well, rages that are beyond a 3 yr old rage.  His eyes dancing, falling all the time….I mean it is hard.  You can see our videos on YOUTUBE.

We are all tired.  Hunter is frustrated.  We are, currently, at the hospital getting another round of IViG therapy.  It is a 7-10 hour IV push.  If we do it too fast, he is throwing up, lethargic, arms/legs hurting, head hurting, and all sorts of fun side effects.  When we can stretch it out, some, he has some symptoms but not all of them.  He is usually symptomatic for about 7-10 days after treatment.  Then we have about 10 days of little symptoms, and then it gears back up before our next treatment.  He only has opsoclonus when he is tired…..but within 30 minutes of starting the IV, his eyes started dancing.

Our attending physician (pediatric neurologist), spent a lot of time with us, today and for that, I am grateful.  He listened to my fears, we talked things through, he was as encouraging has he can be with me and he is wonderful with Hunter.  This disease is 1 in 10 million…………most doctors, nurses, ERs, or pediatric neurologists never see this in their lifetime and there is no cure because we don’t always know the reason for onset.  Most times is neuroblastoma that is encapsulated within the chest cavity.  It can and is removed but it does not stop the symptoms.

There is a treatment that we are adding.  ACTH (a mega type steroid that helps your body to produce the hormone cortisol).  It is a beast.  Side effects sucks.  We will do that in combination with IViG (immunotherapy) and Rituximab (chemo).  We start this new drug in January, so we shall see. It is hard to administer (IM shot) and it is hard to get off of.  The longer my son has these OMS symptoms, the more it takes affect on his brain and causes permanent damage.

One day, there will be a reason for OMS and there will be a cure….heck, it could be Dr. Sweeney who finds the cure, on Hunter….who knows.  I’m thankful for the knowledge of Dr. Wendy Mitchell and her consult with our case….just because she is kind and she has seen a lot of these patients.  I’m thankful for our OMO nurse, Kim………., Dr. Sweeney for listening, emailing me back, wanting all information.

God is good….even in times of trials and pain.  He is teaching me.  He is refining me.  He is telling me that I do not control every aspect of life and I cannot control OMS, but He can because He is bigger.

May a cure be found.

Any questions……..please ask!

Military School? Good or Bad?

G is 16.  She has been with us since she was 6.  We had a 3 day honeymoon when she moved in and then BAM.  It was over and life was a struggle.  Gracious, the behaviours, the lies, the manipulation…..bad memories.  After several years, we had had all we could handle.  I could not physically do much because she may be short, but she had grown in strength and was starting to get physical.  We made a tough decision to send her to military school 3 1/2 hours away…..for 22 weeks.  We had one visit for a few days, over July 4th, weekly phone calls that lasted about 2-3 minutes, and letters/emails.

As a family, we stepped back and we began to heal.  Military school was not what we thought it was going to be.  She gained more weight while she was there because the kids found ways to get out of PT.  Her excuses ranged from she was going blind to she was lame.  I finally had to forbid her to go to the nurses station 12x a day.  The nurses also, unbeknownst to me at the time, forbade her from going because it was excessive.  She watched movies that we would NEVER allow that are 100% inappropriate for adults, much less, troubled teens.  I had to let it go.  I started looking at it as a break.  A much needed break for all of us.

We took this time to reconnect, heal, talk about things, work through some things, and focus on peace.  We had forgotten what peace was like.  The kids wrote letters/emails to each other and my prayer was that healing would begin and bridges would be built.  Bridges were not rebuilt.  My kids disclosed such painful things that they had kept to themselves.  It hurt my heart and frankly, I didn’t want her to come back.  During her time away, our baby was diagnosed with OPSOCLONUS MYOCLONUS SYNDROME and was hospitalized for 2 weeks.  There is no way I could have handled G and being 4 hrs away for 2 weeks.  I also had surgery and was able to recover.

When time grew closer for her to be done and come home…..I had already mentally and physically prepared it.  I had already set in motion a few places that she could go because I anticipated that things would not be different.  It broke my heart, but my other kids were afraid, the baby was not well, and I was spent.  I had had enough and my tolerance level was in the negative.

Bart went to go and get her….well, go to the graduation and then bring her home.  I was only 2 weeks out of major surgery.  My big girls had to work and my sister watched the baby.  They got home and after an hour or so, she made her way upstairs to my bedroom, where I had been resting.  It was not a “Little House on the Prairie” reunion.  It was stoic and tense.  I laid out the law for her.  I was not going to yield, I was not going to put my kids in danger, I was not going to deal with what I had been dealing with.  It was a one strike and you are out policy.

It has been 2 1/2 months since she has returned home.  In that time, I can count on 1 hand how many times I had to have a conversation with her or correct her.  I can count on 1 finger how many times things escalated to an almost point of no return.  For the most part, she has been able to self regulate.  She is NOT medicated.  She was on a lot of medication and mood stabilizers before she was gone and during most of her time at military school.  I took her off of two before she left and she ran out of one at the end of her time there.  When she came home, I was recovering, Bart didn’t know where her meds were and neither did she.  She has done incredibly well, shockingly enough.

I once thought she had torched those bridges and relationships with her family…like ashes and then a wind storm and it blew the ashes from here to there.  I now see, that she just singed them pretty well.  It has taken a bit of time for some of the kids to warm back up and allow forgiveness to take place, but there is still healing.  Her relationship with Big Daddy has gotten a bit better.  She accepts discipline, she self regulates, she is getting her schoolwork done, she is quick to do what is asked, and she laughs again.  We all do.

For a gal that is 5’1″ tall…she gained weight while she was there.  Since she has been home, she has been continuing her PT twice a day and we’ve thrown in a 3 mile walk several days a week.  She has lost 14 lbs since being home.  Her skin has cleared up, she is learning proper eating, she has stopped stealing food/gorging, she has cut out soda, and she has learned portion control.

All in all military school was not as disciplined as I thought it would be, but God is bigger.  He gave us all a time apart to gather ourselves and to realize that, somewhere deep down, there was still love.  Don’t get me wrong FASD still sucks.  RAD still sucks.  I have to “parent” her more than what I should, if that makes sense.  Chronologically, she is 16 but mentally/emotionally/physically she is between 8-13.  It just is what it is.  I’ve accepted it and she has accepted it.  She just asks a LOT of questions and I don’t get irritated because I think she “should” know the answers….because she doesn’t.

I feel like a huge cloud has lifted off of our family.  I know that it will not always be easy.  I know that we will have bad days, but I also know that I remember why I chose her, through adoption.  Her eyes sparkle when she smiles.  She is tenacious.  Her laugh is infectious.  She tries really hard and she is wonderful with the baby (most days).

So, this is what it is like to have 7 abnormal kids 🙂

Maybe, I need 8 abnormal kids…..who knows…..

 

 

 

That Moment…..

When you have had a good day.  You have worshiped Jesus with like minded believers.  You have snuggled with your family, taken a good nap, got sugars from an amazing 3 yr old warrior…..and then, like an iron skillet to the face……it hits.

A wave of depression.

A wave of failure.

A wave of insecurities.

A wave of realities.

A wave of irrational thinking.

A wave of tears.

My Lady always fussed at me because of my “stoic” facade.  She would always tell me, especially when she asked that I recount the moment when she had her stroke and the year or so afterward, because I would fight back those tears.  She would hold my hand and just tell me to release my emotions….that it was cleansing to my soul and that there is no shame or judgement if I cried.

So I cried.

And she would hold my hand…hand me tissue…and then ask me to repeat the story.

We went through that routine about once a week until she got really sick…and then she stopped asking.  I cried every single time.  There was not a moment that I did not break down into tears.

When my Lady died….my person died….my confidante….my friend and what seemed like my only friend.  I could jot over to her house in 3 minutes…..and be fulfilled and ready to tackle the world.  I had a chair.  I had space.  I loved her ice cubes.  I would crunch and she would advise.  I would lay my head in her hands and know that I was loved, understood and prayed over.  I had no one to cry too.  I had no one that I could confide it.  I had lost my person.

Psalm 56:8 says You keep track of all my sorrows.  You have collected all my tears in your bottle.  You have recorded each one in your book.”  How humbling is that that my Jesus (and your Jesus) collects ALL our tears in a bottle and He records them.  There is not one tear that He misses.  That humbles my heart.

I am still stoic, to a point…my mama always said she knows that I’m stuffing stuffing stuffing down my emotions until there is one little thing that breaks me and then WHAM I am letting it ALL out.

I texted her, late one night and all it said was “I love you, mama.”  That was it.  Nothing fancy, nothing indicating anything was wrong…just a simple statement.  No more did I hit send and the phone was ringing….I rarely call her “mama” unless something is wrong and she is so tuned into me that she knows that she needs to diffuse, listen, encourage, pray and sometimes let me cry.  She’s good like that.  There are times when I just need her.  I need her love.  I need her support.  I need her to listen.  I need her to let me cry and then I need her to tell me to go and wash my face.  I cannot or do not want to imagine my life without her and the unconditional love that she supplies me every single day.

Today was a good day.  We had an excellent service.  We came home and all was well…until it wasn’t.  I had that wave roll over me and I sat, in my room, unable to breathe.  I felt my tears welling up and I just pushed them down until I just couldn’t anymore.

Big Daddy came up and we laid down and I talked….he patted.  I cried……he patted harder.  I snotted……he patted even harder.  I just told him how I felt like such a failure, as a wife, mom, sister, daughter, friend….how alone I felt.  How I was 1/2 way to 80 and I have wasted my life.  He, in his sweet self, informed me that I was *more* then 1/2 way to 80, that I was almost 1/2 way to 90.  Good pep talk, Big Daddy….good….that comment made me cry even harder.

Then it all came bursting out like the water of a broken dam.  What would I do if he died and he left me all alone?  Why did I start watching a movie that I knew scared me and now I’m afraid spiders are in my bed?  Why doesn’t he love me?  Does he hate me?  Do my kids hate me?  I’m worthless.  I’m useless.  I have accomplished nothing in life.

Pity Party:  Party of 1 please….your table is ready.

There is Truth that I MUST remember…..

What does Jesus say about me?  In Psalm 139:14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”  If I want to get REALLY technical…I can throw it back to Genesis 1:27 with “So God created mankind in his own image, in the image of God he created them; male and female he created them.”  I was created in the image of God.  He created me to look like Him!  

How crazy is that?

So, knowing that….why do I have these waves?  I don’t know why I get in these funks.  Maybe it is still working through the grief I feel, but then again, my Lady just recently went home….and these waves have come for as long as I can remember.

It is that battlefield of the mind…..satan has wreaked havoc on my emotions and mind.  I have felt the closeness of Jesus all day long and then BAM….out of left field comes a wave of blech.

I am so incredibly thankful for my husband.  He is a steadfast rock to my shifting emotional sand.  I am thankful for new beginnings.  I’m thankful for what Jesus did on the cross for me.  I am thankful for Truths.

Tomorrow is a new day full of new beginnings.

We all have the same 24 hrs in a day.  Will you allow satan to have a foothold in your thoughts or will you choose to capture your thoughts with the Truths of Jesus?

Turning the Page of a Book to a New Chapter

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Welcome to this new chapter.  I could’ve cropped this picture to show a close up of my baby’s beautiful smile, but when I saw his hands….I thought….nope, this is real life.  Behind that smile is fear, excitement, worry, anticipation, exhaustion, and hunger.

My baby came to us when he was 5 yrs old, after a long intense battle to bring him to America.  Being a child of color, older, and a boy his odds were against him ever getting adopted.  See, little black girls turn into sweet gorgeous black women.  Little black boys turn out to be thugs, murderers, etc.  There is a sad stigma and that does not mean it is just in America.  There is racism in the country of Ethiopia as well.  If a male child is 3 or younger and “caramel” colored….he is a good child to be adopted.  If a male child is 4 or above and darker….well….that is a lot of odds.

How can one look at that face, those eyes, that smile and say he is going to be ANYTHING but a child of the King and a warrior for His kingdom.  This baby………….this baby………..I cannot even.  My heart simply bursts with love, pride, gratitude, and thankfulness for what the Lord did in our story.  I seriously cannot even.

We did not know he was deaf for almost a whole year LOL.  He was learning the language and learning how to live in a family and acclimate to the USA.  That was his only job.  To learn to be loved, to know he is safe, to help him with his loss and grief of not being with his family and his beautiful country.  He was, at one point, trilingual.  He was LOUD.  He could speak and worked hard at his broken English until he mastered it.  After almost 6 yrs, he stills says a few words wonky LOL.

On his birthday, my mom calls to sing to all the kids.  She always calls in the morning.  I answered the phone and I knew it was her, so I went ahead and called him upstairs and I handed him the phone.  Now, remember, he is an Ethiopian who had only be home for 8 mths.  I put the phone up to his right ear so he could listen to her sing.  When I did, he said “mommy…I no hear in that ear.”  I laughed and said he was a funny boy and I put then phone up to his right ear again.  He said “mommy, I no hear in that ear.”  He switched ears and smiled as she sang.  He is a man of little words so as he was grinning (he thought she could see his approval), he handed me the phone.  I was sitting there, with my mouth opening, looking at him like he an eyeball that had just sprouted up on his forehead.  I held the phone and I could hear my mom speak, but all I could say was “what do you mean you can’t hear in that ear?”  He said “I no hear in that ear.”  I could’ve caught flies with my mouth.

I put the phone to my ear and said “Martha….he says he can’t hear out his right ear….I gotta go and figure out what the heck he is talking about.”  We got off the phone and I looked him square in the eyes and said “WHAT THE HECK DO YOU MEAN YOU CAN’T HEAR OUT OF THAT EAR?”  He took his hands….clapped them on my cheeks…pulled my face nose to nose with his face and said “MOM, I NO HEAR OUT OF THAT EAR.”  I asked if he heard out of that ear in Ethiopia….he just waved his hand like it was nothing and he said “No.  I no hear in that ear in Etopia (that is how he pronounced it).”

I think I sat there staring at him for 30 minutes.  I’d plug one ear and talk…he could hear me.  I would plug the other ear and talk….he could hear me.  I did not get it.  At all.  I turned all the fans on, made him turn around, and I whispered…he heard me.  I am stumped.  In a last ditch effort to understand what was going on, I got in the van with him, turned up the radio, lowered all the windows and whispered…he heard me.  Either he was insane or I was insane.

I took him to an ENT.  We did hearing tests…he was in the “sound proof” booth and the lady said some words and he repeated while one or the other ear was plugged….he did it.  She said he was fine.  In another moment of “I am such a bad parent because if he is hard of hearing in that ear, I didn’t know and didn’t do anything about it but the audiologist said he was fine but I want a second opinion from a friend because she is good at what she does and she is free and I will leave this alone if she tells me that he is fine I will just assume I am nuts and he is nuts and we are all just nuts.”  Yes….that is the long run on sentence that took place in my head.

I headed to see my friend Susan Brown.  She did all her of her initial stuff and then put him back in the booth.  I sat in the booth with her.  This time, was different.  She said things, but she covered her mouth.  When she did that, we discovered that he is stone cold deaf in his right ear.  See…..what I didn’t realize was that he was reading my lip and everyone else’s lips.  Most people are deaf from either their outer ear to their eardrum OR from the eardrum to their brain.  Jude is deaf from the outer eardrum to the brain.  He has all the mechanics of a “good” ear….he is just deaf.  We are guessing he was born this way, which explains SO much.

When I took him from Susan to the NEW ENT…Jude was pretty stoked.  I told him we were going to see Dr. Jones.  With his wide eyes….he said “we are going to see DR JONES?”  I said yes we are…he is going to check your ears.  I asked why he was looking at me like that and he said “Dr. Jones?  As in Indiana Jones?”  I smiled and said “No, Dr. Shawn Jones.”  Let down.

As we were talking, I asked Dr. Jones if this could be hereditary?  He said it could be and why do I ask.  I explained to him that my mom was born without a bone in her ear and that she was deaf.  I told him that she had surgery and they placed a metal plate in there and now she can hear.  At that moment, the dr was staring at me, the nurse was staring at me and Jude was silent.  I couldn’t figure out the silence.  Dr. Jones leaned WAY in to me and he said “Brandi, is your mom black?”  I said “No.  She is a little short redhead, why are you asking me if she is black?”  He smiled and said “Brandi….your son is black.”  Duh…..I forgot.  I don’t think about things like that so I was felt pretty stupid.

Well, after many visits, many types of hearing aids that did not work….learning some sign language to help him in crowds…..5 years later…..yesterday was the day we turned the page to a new chapter.

Yesterday, we were in Louisville for Dr. Severtson to perform a BAHA surgery.  Now, normally this surgery would have a titanium screw and in about 6 mths or so, once it is healed, you *snap* a hearing aid on behind your ear.  The sound bypasses the ear canal and goes straight to the brain.  The post requires A LOT of attention and maintenance.  We were going to do that because, the older Jude gets, the more it bothers him about his hearing.  I get that.  Our dr was recently approved to do a new type of BAHA hearing aid.  Instead of the titanium screw, he put in a magnet.  This takes 2-3 mths to settle in and heal.  Once that is healed, we go back for the processor.  His hearing aid will also have a magnetic on it and it will just stick to his head, behind his ear and it does the same as the original.  This is good because there is zero maintenance.  You get your processor quicker.  He is the first in our area to receive it, so we can hopefully help other families.  More importantly, he will be able to hear out of both ears for the first time in his life.  How freaking cool is that.

The recovery is not fun.  He has to keep his head wrapped for 3 days and not wash his hair for a week or so, but in the end…..it will be awesome and that is what I have to remind him.

I am so stinking excited.  He is excited too, but he is hurting pretty good and his incision site itches….which is driving him bonkers.  All in all……welcome to his new and improved HEARING story 🙂

Wisdom from a 3 Yr Old

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Meet Hunter

The day after I came home from my hysterectomy, he was missing his mama because I had been upstairs resting.

Every night, before bed, Hunter crawls up in the bed with me and we snuggle.  This particular night was no different, but I warned him that my belly was hurting.  To help in his understanding, I showed him my bandaids on my belly and told him he needed to be gentle.

In his wisdom, my sweet baby looked up at me and said “Mama, we need to put some oils on your belly to feel better.”

Uhm, yes we do, sweetness……I have officially become an oily mama with an OMS baby who LOVES his oils.

Love that I’m teaching him about alternative ways to help heal and nurture our bodies with natural solutions instead of synthetic medications!

BTW:  He chose wintergreen for me to have on my belly 🙂

Closing the Chapter of My Life

I had a small moment, yesterday, and really it is quite silly.

As I was in the bathroom for the umpteenth time, my brain (and emotions) got the best of me.

I realized that I had just permanently closed the door to ever carrying a child, in my womb, again.

Like ever.

Not that I wanted too carry another child.  I knew (know) the risk to my health and I know my age, but we have always regretted our decision to get Big Daddy’s vasectomy 13 yrs ago.  We felt like we took matters into our own hands and we did not leave them in the hands of God.

My friend is due to have her son, any day now.  It is such a beautiful thing to bring life into this world and I am honored to have brought 3 lives into this world BUT it does not take carrying a child in your womb to become a mom.

Maybe the Lord is stirring in my that we are not done yet.  That this is the close of one chapter, but another chapter is opening up.  In my mind’s eye….it seems like it is a stretch to bring more children into our home.  We have no room, we do not have enough beds, we have kids with some serious needs that we are addressing…

But…..

What if He takes one mountain from the Atlantic Ocean and crushes it into the Pacific Ocean.

Hey, it could happen 🙂

So, I had a Hysterectomy

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Well….well….well….well…..

A hysterectomy is a little slice of hell with a side of pain.

The surgery was laparoscopic.  They took my uterus, cervix and fallopian tubes.  They also evacuated the large grapefruit sized fibroid that was taking up residence in my uterus.  While they were “all up in my stuff”, they also helped my bladder out a little bit.  She needed a little assistance to stay up and where she belongs.

My dr and nurses were rockstars.  I was not apprehensive one bit.  I remember them saying that they were giving me happy juice.  I didn’t feel like that was necessary because I was not nervous, scared of freaking out.  I was a bit dizzy but that is because I was laying flat and my Meniere’s was kicking in.  The next thing I remember is being done and back in my room with my husband and my mom.

My sole goal…was to pee LOL.  I attempted that feat and let’s just say it was a failed attempt.  My poor mama has been with me through LOTS of unsavory times in my life.  I’m so thankful for her and her attempt at getting me to pee by running water LOL.  Headed back to my little room….did some checks and such and then I forced myself to pee so I could get out of that hospital.

Yes, I left the day of my surgery.

No, Big Daddy was not thrilled.

I left with a bandaid on either side of my belly button and then on top of my belly button.  I also had 2 “catheters” that were inserted one on each side.  It held this numbing medication that kept my belly numb from Friday till when I pulled the second catheter out yesterday.  I was not sure it worked…one ball was deflating at a normal rate, but the other was not.  I had to go in on Sunday and come to find out, that it was clogged, so they fixed that.  I pulled one ball (when it deflates, the medicine is gone) out on Monday night and then other I pulled out on Tuesday night.  I thought it was clogged again because it was not deflating and I really really REALLY wanted a shower….

So…

I took it out.

Within about 10 minutes, I realized that the ball was indeed, working and now I was hurting.  Like not just a little tug or a little pain….like I could not stand up straight kind of hurting.  I got my shower….and then I went back to bed.

The things I have noticed so far……I pee a lot and it is orange (thanks to the pyridium that helps my bladder from having spasms), take stool softeners to help but do not take too many or you will never leave the bathroom.  Take your meds…..for the love of all that is good and holy….take them. I have cut my painkillers in 1/2 and I’m trying to only rely on my 800 mg ibuprofen.  Laying on your side…just don’t.  Really, trust me.  Where big clothes and get some undies a size up.  There will be swelling and tight drawers are no fun.  You will not lose weight over night LOL….yes, I thought that and it was a stupid thought.  Every time you get up to go and pee…walk walk walk.  Even if it hurts walk around.  You will cry.  Not necessarily out of pain, though it is not fun…just my emotions are all over the place.  I cried at a youtube video.  Simply could not pull it together.

Give yourself grace.  I had the least invasive surgery, but it is still MAJOR surgery where organs (plural) are removed.  1 week of nothing but rest (only climb stairs twice a day), week 2 join the rest of your crew but sit on the couch.  Do not lift.  Climb.  Dance.  Run.  Exercise.  After week 2, you just need to take it easy for the next 4 weeks.  6 weeks of a whole lot of nothing.  If you do not listen to your body…rest when you can….you will have scar tissue and that is something that you will pay for…forever.

So….I’m resting.  My family is waiting on me.  I’m showering, napping (some), sleeping at night (little), and eating…some.

Here’s to hoping I feel way better sooner rather than later.

 

 

Getting Ready for My Girl Party

I, hope, I am getting a hysterectomy on Friday!  I went to the dr about a month ago, with some issues.  I am one who struggles with admitting that I don’t feel well.  Power through, that’s my motto.  I also use the phrase “I’m fine” a lot.  I have not been to the dr in a couple of years for my physical.  I also have not been to the girly dr for about 5 yrs because, frankly, I thought I was crazy.

I went, I conquered and no one touched me.  Win Win.  I did, however, raise the concerns of my dr and he convinced me to come back, early and stay all day long.  All.  Day.  Long.  Staying at the girly dr all day long is much like the 7th level of hell.  Plus, it was hot in there….like residing in satan’s armpit, ya know.  Nice people.   Nice nurses.  Nice office.  Do NOT want to be there for that length of time.

I got there at about 10 (I procrastinated) and I went straight for this torture chamber of an office that detects whether I pee unwarranted or not.  Hell, I could’ve told them that.  I can’t walk, talk, laugh, sneeze, cough, turn over in bed without peeing a little bit.  It drives me bonkers.  Most women who have had children, vaginally, have this problem.  We all know the art of talk talk talk…..stop…..cross our legs…..sneeze…..pause to make sure you have stopped the flow….resume talking.

I got through the first level of hell when that was done.  I was done.  It was so bad, at one point, the sweet nurses who were torturing me moved out of the way cause I got tickled and they were prepared for urine to shoot across the room.  I crap you not.  (side note:  there was no crapping on my part LOL…praise God.)

I got out of there and I headed to get my blood work done.  I just realized I do not have the results from that…might need to call.

I had a mini break, so I thought about getting a tattoo while I waited, across the street.  They, sadly, were not opened.  I ended up treating myself to lunch because when you have all of Calloway County up in your business, one deserves to go out to eat.

Finished there and headed back to the dr.  I had an ultrasound down on my uterus.  Luckily, I knew the lady doing it so it made it much easier.  I have not had an ultrasound since I was pregnant with my son 16 yrs ago.  It was strange.  She put the stuff on my belly (shout out to the person who invented the slime warmer, it was glorious) and she put that thing on there.

She paused.

I sat straight up with a look of sheer panic.

I peed.

I guess the blood running out of my face was an indication that she needed to speak.

With a look of shock and awe in my face….I screamed “Is that a BABY’S HEAD in my uterus…I swear on my life if you turn that thing around and I see eyes and some tiny hand waving at me…I’m heading to meet Jesus.”

Then she laughed and said that no, it was not a head, but it was the size of a 23 weeks fetus.

I have a fibroid tumor.

Well, good freaking grief.

She congratulated me on my upcoming hysterectomy.

I left there…ready to vomit and I headed back to the gyn.  There he was, with a new torture device and that sucker had a camera attached to it.

I got in the “position” for a pap smear and I quickly realized that there was plastic EVERYWHERE.  I thought he was going to kill me and then wrap me up and dispose of me (I’ve been watching the Blacklist).

Then………he raised my bed to towards the ceiling.  Creepy and what happened next….well, let’s just say….hurt like nobody’s business.  He was doing a hysteroscopy to “scrape” the inside of my uterus to check for cancer.  He also inserted that camera that was the size of, I’d say, Canada.  Then, he had the AUDACITY to tell me what he saw.

As I was coming up off that table, I looked at him and said “listen….unless you want a wire hanger shoved up your spot and twirled around while we are SLOWLY discussing it, I’d suggest you get what you are going to get and get that thing out and put away.  I’m about to shove my foot up your nostril.”

He did what he needed to do and he profusely apologized for it being “uncomfortable.”  Uncomfortable is like stubbing your toe, accidentally eating a fly that was in your McDonald’s french fry holder, or stepping on a rusty nail.  This was NOT uncomfortable.  This straight up hurt.

He let me regroup and eat some candy to temper my anger and then he gingerly came back in.  He said that my tumor was huge and he, indeed, recommended the hysterectomy.  He also said that my urine thing was off the charts and I just peed unprovoked all the time….like massively.  Uhm, yep….I sort of already told him that.

Oh…just to say, I got my mammogram within the next few days!

All this being said, I’m getting my stuff out on Friday.  I’ve given myself a pedicure and took off all my polish.  I also gave myself a manicure.  I’ve got some freezer meals prepped and my mom insists on coming and my kids are taken care of.

I am SO beyond ready.

Girls….if you have your girly parts.  Take care of them and you.  Do not be stupid like me and suffer in silence, there is no reason too.  There is no shame and you are NOT crazy about how you feel.  You are important.  Eat well.  Exercise.  Get plenty of rest.  Go to the girl dr, the regular dr, the eye dr, and the dentist regularly!

OMS: Where We Are Now

Here we are…almost 3 months into our OMS journey (Opsoclonus Myoclonus Syndrome).  It has not been the easiest time.  We spent about 2 weeks, at onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital).  During that 2 weeks, he had 8 high dose steriod treatments and 1 high dose IVIg treatment.  Once we were released, we went back a month later and we got the first Rituximab treatment.  In 2 weeks, we went back to get the next dose of Rituximab.  We will go back in January to get the 3rd dose.

The steriods were to get the inflammation down.  The IVIg is immunotherapy and it replaces the good stuff in his body.  Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain.  The first dose killed off the majority of them.  The second dose killed off the baby ones.  We were hoping remission would come after that second dose, but sadly, it has not.

Hunter still walks around like a drunkard, basically.  He walks with his feet out, like a duck to steady himself.  Stairs are still a challenge.  Mornings and after naps are still filled with uncertainty as to how he will be.  He is more tremulous during those times and when he is doing something that has focused movements with his hands (ie holding a fork/spoon, pencil, coloring, etc).

He is still highly emotional.  I know that he is 3 but it is almost like have 100 kids that are 3, at the same time.  It is exhausting.  He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well.  There is not an in between. His eye is still turned in (apparently that is normal for OMS kids) and they still twitch….all the time.  It is so weird.

We start monthly IVIg treatments next month.  Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours.  Our prayer is still remission, of course.  Our goals are to continue either/or (or both) get a mobility service dog for him and we still need to raise money to redo our downstairs bathroom to make it more accommodating to him when/if the need arises for constant use with his walker.

I do not know what the future holds, but I do know the One who holds the future in His mighty hands and I will choose to trust and obey…………

Blessings.

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