Why Not Me?
Thanksgiving was this past week and like many of you, we are still recovering from all the wonderful food. This time of year is so fun...
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Life with NKH
Tarah OSullivan
- Oct 12
- 3 min
Seven...The Year of Completeness
Your seventh birthday, Bubby. It is hard to understand all your little seven year old body has lived through. Last year when your heart..
650 views
Tarah OSullivan
- Sep 14
- 4 min
His Peace
27 “Peace…I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither...
303 views
Tarah OSullivan
- Jul 14
- 4 min
Being Comfortable in the Uncomfortable
If I could explain the last year in one word it would be …uncomfortable. It is hard to explain all that we have walked through over the...
773 views
Tarah OSullivan
- Mar 5
- 5 min
O2 Crisis and Canceled Church Plans
Today we got up at 5:30 am, started our normal routine of getting showers, kids up, dressed and fed, Drake and Vivian’s meds and food...
689 views
Tarah OSullivan
- Jan 18
- 4 min
Calm After the Storm
Our sweet girl finally started to settle around Saturday evening. Thursday and Friday the seizures had slowed to not consistently coming...
566 views
Tarah OSullivan
- Jan 13
- 5 min
Dead End Roads...
We took Vivian into the ER Wednesday night to have her evaluated. Her body was on day three of fever, hundreds of seizures, and throwing...
1,507 views
Tarah OSullivan
- Jan 12
- 3 min
Update on Vivian..
Vivian fought hard all day and the seizures have been so relentless. She spiked a fever of 102.3 this am and we have done medicines and...
896 views
Tarah OSullivan
- Jan 11
- 7 min
It started Monday night...
Vivian started to seize ever 20 minutes shortly after I got home Monday night. I had meetings all day surrounding the foundation, growth...
1,381 views
Tarah OSullivan
- Dec 26, 2022
- 1 min
Merry Christmas
In 2016, I stopped sending Christmas cards. Although our family had enjoyed this for years prior, I could not bring myself to take the...
64 views
Tarah OSullivan
- Dec 8, 2022
- 5 min
Life is but a Vapor...
Yesterday I was sitting with our PT discussing some pretty severe issues we are seeing with Drake’s scoliosis and his poor little legs. ...
1,075 views
Tarah OSullivan
- Dec 5, 2022
- 6 min
The Crippled Lamb and Crying Over Hamburger Meat
Ever heard the saying “don’t cry over spilt milk”... Well, last night I cried over hamburger meat. Before you try to guess, no I am not...
318 views
Tarah OSullivan
- Aug 21, 2022
- 6 min
You Made It To Three Little One...
Today is Vivian Faye’s Third Birthday...a birthday we were told she would never see. A birthday a few days ago, we were not sure if we...
665 views
Tarah OSullivan
- Aug 9, 2022
- 7 min
Update: 20 Days Post-Cardiac Arrest
It has been twenty days since Drake’s heart stopped...unexpectedly....and twenty days since we got to witness our Lord and Savior move...
1,442 views
Tarah OSullivan
- Jul 30, 2022
- 11 min
Medical Miracle
It has been 10 days since our lives drastically took a turn. I think now that the dust has slightly “settled”, we can all start to try...
4,715 views
Tarah OSullivan
- Dec 17, 2020
- 4 min
Update 12.17.2020
Update 12.17.20 My goodness what a busy few months it has been. Kids’ schooling, Drake and Vivian med changes, my school schedule,...
163 views
Tarah OSullivan
- May 2, 2019
- 3 min
May 2nd - NKH Awareness Day
Today is NKH Awareness Day. It is a day that families affected by NKH across the world rally for awareness and funding to help bring...
135 views
Tarah OSullivan
- Dec 7, 2018
- 4 min
New Treatments
Drake is doing well. We are still seeing good seizure control from the Amoxicillin (antibiotic) which is a complete God thing. A few...
135 views
Tarah OSullivan
- Nov 4, 2018
- 6 min
How Great Thou Art
We have been home from our second hospital admission for about 6 days now. Drake had to be admitted, twice in two weeks, due to...
106 views
Tarah OSullivan
- Oct 30, 2018
- 4 min
Biochemistry
Drake is doing well. We brought him home on an antibiotic in a continued effort to starve off any bacteria that may, or may not, be...
38 views
Tarah OSullivan
- Oct 29, 2018
- 6 min
Talks of Coming Home
Drake had a good night. He is very weak, but that is to be expected considering all he has been through. The labs are all coming back...
91 views
Tarah OSullivan
- Oct 28, 2018
- 5 min
Round Two - Second Hospitalization in a Week
We had to admit Drake to the hospital again last night due to his white count being very elevated on Saturday when we took him into the...
27 views
Tarah OSullivan
- Oct 25, 2018
- 3 min
First Day Home
Drake is struggling a bit. His seizures have been coming about every 10-15 minutes all day. I will take him to our pediatrician tomorrow,...
9 views
Tarah OSullivan
- Oct 24, 2018
- 1 min
Coming HOME!!!
Look who is coming home today!!!! Praise the Lord!! We have all our equipment in tow and they are letting us care for him at home under...
5 views
Tarah OSullivan
- Oct 24, 2018
- 3 min
Day Four at the Hospital
Drake had a good day yesterday. Sorry we didn’t write, as our day was full. It was right around 1 am before we got settled enough to try...
9 views
Tarah OSullivan
- Oct 23, 2018
- 2 min
Hospital Day three
Monday Morning Update on Drake: I wrote our doctor early this morning, after Drake had gotten his 5:00 am medicines. Our glycine labs are...
3 views
Tarah OSullivan
- Oct 21, 2018
- 4 min
Day Two At The Hospital
We were hoping to go home today, but it doesn’t look like that is going to be a possibility. Drake is still struggling to regulate his...
23 views
Tarah OSullivan
- Oct 21, 2018
- 6 min
Hospital Update
10-20, 8:45 pm Update on Drake Drake's oxygen is stabilizing. We thank you all for the prayers and texts and messages. I am sorry we have...
25 views
Tarah OSullivan
- Oct 19, 2018
- 4 min
The Unknown
Drake is fighting a virus right now. He started Wednesday with a slight fever, yet his seizures have been very calm. Sadly over all, he...
19 views
Tarah OSullivan
- Jul 24, 2018
- 2 min
Faith, Hope, Cure for NKH
In the past ten days we have lost two children to NKH. Two beautiful children ….gone…to a preventable death…… Two families have suffered...
93 views
Tarah OSullivan
- Apr 29, 2018
- 5 min
Future Plans
We wanted to update on Drake’s progress and the foundation’s direction. First, let me say… thank you…..thank you for all your prayers,...
73 views
Tarah OSullivan
- Apr 9, 2018
- 5 min
Using the Insignificant
Eric and I just came home from a cross country drive up to Notre Dame University in Indiana. We spoke with researchers, directors, and...
61 views
Tarah OSullivan
- Mar 18, 2018
- 4 min
Another Child
Drake is doing well. He has calmed down from the seizures we were seeing the week before. His weight has increased, so we are seeing...
95 views
Tarah OSullivan
- Mar 7, 2018
- 4 min
I saw God Today...
Drake is struggling a little right now… we made an adjustment to his meds where we dropped a WHOLE dose of sodium benzoate (artificial...
78 views
Tarah OSullivan
- Feb 26, 2018
- 3 min
Growth, baby steps, and hope
Drake is doing really well right now. He is still loving his new physical therapist, and the improvements we are seeing in his physical...
60 views
Tarah OSullivan
- Feb 18, 2017
- 4 min
Choosing Life
Thank you all so much for your prayers for Drake and our family. We think we are out of the valley and Drake’s seizures are starting to...
42 views
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