Reflecting on my Facebook Posts from the Beginning

Reflecting on my Facebook Posts from the Beginning of our journey.  I mean, not all of them, but the ones that pertain to Hunter and our journey.  Boy, these are painful to reread.

6.7.17

Guys…needing prayers. Yesterday afternoon, Hunter (3) began shaking and was unable to walk. We went to Lourdes and they gave him antibiotics for zero reason and sent us home. Luckily, I have friends that are very wise. We were told to take him to the ER in Vandy. We finally got here around 1:30 and at about 5:30 we got a room (7304). Please pray that we can find the reason he cannot walk and why he shakes uncontrollably. Also…I am not able to be with my Lady and she is having a procedure done this morning. Please pray we find answers. I am not sure how much more I can spread myself. Please add Hunter and my Lady to any and all prayer chains and churches. Thank you. 

6.14.17

UPDATE: We are home BUT we are leaving again in the morning. One of his tests came back which indicates inflammation in his brain. We will be home for 5 days and he will be on high doses of steroids. Please pray that we find the answers. Also for my family left at home. I can see all my babies tonight but it is so hard to be away from them.

6.15.17

Got to see my kids, husband, mama and daddy, my Lady and a couple of friends. Also got to shower, pet my dogs and eat with most of my family. Now…back to Lville for a sucky 5 days of heavy steroids Still no dx. Sigh….holding onto the Rope. Pray for safe travels, easy placement of IV, my crew at home and for this time to pass quickly.

6.16.17

Waiting on dr #572 to come in this morning. Getting ready for round 3 of heavy steroids. Good times had by all. #not #day2nortonschildrenshospital #nosleep#overitalready #letsgetdxandgohome #sotired

6.17.17

UPDATE:

Steroids suck on a kid but good on infection.
Baby is …. wowzer …. emotional.
No walking alone today.
His speech is beginning to be impaired….so there is that.
We are shooting to come home Monday if all goes well.

My baby took 10 unassisted steps tonight!!!!!!!!!!!! Yes, Richie Clendenen, this was worth putting in color!

9.30.17

Please pray for my baby….he is not doing too well after his IVIG infusion yesterday. Extremely symptomatic and throwing up.

10.10.17

My boy is in a lot of pain…prayers for an easy night would be welcomed. Thanks.

10.18.17

V and I had to swaddle Hunter while I pulled his stitches out. He was so brave and then Noah walked in the room to watch.

H: Noah…..go away.
N: But I wanna watch.
H: No Noah….go downstairs, you do not need to see this.

Noah left the room.

11.10.17

Me: Kim can you keep Hunter overnight Monday night?

Kim: Sure what’s up?

Me: I just found out I have to take him to Louisville on Tuesday for his IVIG treatment and I need you to keep him.

Kim: Ok….but isn’t he the reason you are going to Lville?

**Pause of realization**

Me: Well crap…..forgot he was going.

Morning of champions.

12.13.17

Heard the words “Hunter is medically fragile” today by our pediatric neuro nurse……made me vomit in my mouth a little. Those words should not be in the same sentence. Sigh……

1.5.18

Brother calls for a bathroom renovation idea and I cry because it has been hard today…..like ugly cry where he couldn’t understand me. He was encouraging and led me to Jesus instead of letting me wallow. He said God knew he needed to call me tonight. Wow. Another part of my rainbow. Thank you, brother. I love you.

1.7.18

I lied. He is still up at almost 130 am. He has been in bed since 845 and he is still wide awake. I am about to lose my cool. OMS………I believe I hate you.

1.13.18

Sometimes reality sucks…..but then….there is Jesus. Pray for us as we attempt to head home. Safe travels and no vomiting would be nice. 

1.14.18

Please say a prayer as Hunter and I head off to Louisville in the morning for a couple of days. Tomorrow is IVIG day and Tuesday is chemo. We will also be retesting to check to see if he has any cancer markers and redoing a lot of bloodwork. Its gonna be a tough couple of days for him. Thanks 

1.16.18

He. Has. Been. Up. Since. 4 am. God give us both strength.

Home…..Bart and Ben rescued us. Victoria cooled my jets. Alyssa shoveled the sidewalk, finished and put away laundry, cooked supper and got my diffuser going, Noah shoveled the apron so we could get in the garage, Gigi cleared out the van, Daniel did his chores, and Jude….well, he is just cute. Jay texted to check on us and pray for us. So thankful for my husband, my kids, my family, and my prayer warriors.

1.17.18

Guess who was granted a wish from Make a Wish???????? So excited. Something fun for a change. Thank you Jesus  He knew we needed that.

1.22.18

One had their truck almost die.
One was told she possibly overdosed her son.
One picked up wedding invitations.
One applied for graduation from WKCTC.
One asked to see her birth mom for her birthday.
One humbled himself to help a friend in a crisis.
One listened to 4 chapters of the Civil War and remembered it.
One popped on his hearing aid like a beast.
One has had a rough day with walking/talking/eating.

2.6.18

Friends, Neighbors, Countrymen….lend me your eyes. I’m here to announce Hunter DOES NOT have Friedrich’s Ataxia (1000x worse than Opsoclonus Myoclonus Syndrome) and as of now, he DOES NOT have Neuroblastoma. Thank you, Jesus!

2.12.18

‘Roid rage……it is alive and well today, in my house. Anyone want an almost 4 yr old for a while? He’ll be sitting by the mailbox waiting for pickup.

2.15.18

Well….that was like jumping naked into a nest of iridescent baby ticks. #rushour#Lville #45minutesfor2miles #overit #IVIGday

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