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Life with NKH
Tarah OSullivan
Dec 22 min read
Today Is My Birthday!
Today is my birthday, and as Drake and Vivian's mother, I find myself asking for the same thing every year.
"Father, please..."
73 views
Tarah OSullivan
Nov 282 min read
Grateful...
I don't know if I have ever been truly grateful for time. When you are young, all you think about is growing older. When you are older...
372 views
Tarah OSullivan
Aug 268 min read
The First 24
The hours after Vivian's birth was a bit of a blur. We had decided to induce her around 39 weeks and three days due to me being dilated,...
387 views
Tarah OSullivan
Aug 214 min read
Vivian...alive; lively, bubbling with life
I typed in my search bar early this morning.. "What does the name Vivian mean in the Bible?".... The search populated and it caught me...
311 views
Tarah OSullivan
Aug 126 min read
Failing FORWARD...
I avoided this day for weeks... I wanted so badly for him to be able to communicate, to show us something, to PROVE he was in there. In...
1,176 views
Tarah OSullivan
May 1310 min read
Vivian Update..Mother’s Day Evening
I am normally full of words… words that help make sense of things that have happened…words that bring understanding….words that I feel...
1,020 views
Tarah OSullivan
May 69 min read
Living in the Unexpected
Eric and I knew raising multiple children were going to be eventful. Raising five children, two with terminal diagnosis, is on a different
801 views
Tarah OSullivan
Apr 166 min read
Jesus Moment in the ER
She looked at us and then with a exhale stated, “ I am just going to ask..."
"Yes ma’am", we replied, not fully knowing what we were agreei
307 views
Tarah OSullivan
Apr 164 min read
Vivian is home..
All Vivian’s levels stayed in really nice places after her infusion of red blood cells last night. Her ECG came back normal, and other than
291 views
Tarah OSullivan
Jan 242 min read
Prayer Jar
Today, as I did my devotional I was reminded of the need for prayer. Honest, humble, expectant, desperately seeking Father’s will......
87 views
Tarah OSullivan
Nov 27, 20236 min read
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...
455 views
Tarah OSullivan
Oct 12, 20233 min read
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..
752 views
Tarah OSullivan
Sep 14, 20234 min read
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...
327 views
Tarah OSullivan
Jul 14, 20234 min read
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...
840 views
Tarah OSullivan
Mar 5, 20235 min read
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...
700 views
Tarah OSullivan
Jan 18, 20234 min read
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...
574 views
Tarah OSullivan
Jan 13, 20235 min read
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...
1,524 views
Tarah OSullivan
Jan 12, 20233 min read
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...
910 views
Tarah OSullivan
Jan 11, 20237 min read
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...
1,389 views
Tarah OSullivan
Dec 26, 20221 min read
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...
70 views
Tarah OSullivan
Dec 8, 20225 min read
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. ...
1,079 views
Tarah OSullivan
Dec 5, 20226 min read
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...
324 views
Tarah OSullivan
Aug 21, 20226 min read
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...
670 views
Tarah OSullivan
Aug 9, 20227 min read
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...
1,452 views
Tarah OSullivan
Jul 30, 202211 min read
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...
4,748 views
Tarah OSullivan
Dec 17, 20204 min read
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,...
165 views
Tarah OSullivan
May 2, 20193 min read
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...
160 views
Tarah OSullivan
Dec 7, 20184 min read
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...
137 views
Tarah OSullivan
Nov 4, 20186 min read
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...
109 views
Tarah OSullivan
Oct 30, 20184 min read
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...
40 views
Tarah OSullivan
Oct 29, 20186 min read
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...
93 views
Tarah OSullivan
Oct 28, 20185 min read
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...
33 views
Tarah OSullivan
Oct 25, 20183 min read
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,...
10 views
Tarah OSullivan
Oct 24, 20181 min read
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...
7 views
Tarah OSullivan
Oct 24, 20183 min read
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...
10 views
Tarah OSullivan
Oct 23, 20182 min read
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...
7 views
Tarah OSullivan
Oct 21, 20184 min read
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...
24 views
Tarah OSullivan
Oct 21, 20186 min read
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...
27 views
Tarah OSullivan
Oct 19, 20184 min read
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...
20 views
Tarah OSullivan
Jul 24, 20182 min read
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...
94 views
Tarah OSullivan
Apr 29, 20185 min read
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,...
76 views
Tarah OSullivan
Apr 9, 20185 min read
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...
63 views
Tarah OSullivan
Mar 18, 20184 min read
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...
112 views
Tarah OSullivan
Mar 7, 20184 min read
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...
81 views
Tarah OSullivan
Feb 26, 20183 min read
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...
67 views
Tarah OSullivan
Feb 18, 20174 min read
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...
46 views
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