Sunday, December 29, 2013
Tuesday, November 26, 2013
Thursday, November 21, 2013
Monday, October 28, 2013
Thursday, August 29, 2013
Thursday, June 20, 2013
In Michala's typical personality she wanted to go first. After Dr. Flamini saw the pinches & scratches on Michala & me, he agreed it was time to try some medicine for her. We are starting her on respiradol. It's used regularly for patience with Autism so hopefully it will help with her aggression & pain. Please pray that this is a step in the right direction.
Her seizures are getting progressively worse so we are increasing her Sabril again. If this doesn't work we will decrease & try onfi. Every time we think we are running out of options a new med is approved. So thankful for that. As we were discussing her seizures Dr. Flamini coughed & Michala had a startle seizure. He adjusted her VNS. She has about half a battery life. Not sure how long that will last before she has to have surgery to replace it with her new adjustment.
Abe was next. Within a little while of talking about him he started having a seizure. Not something we wanted to happen but glad it happened in the neurologist office. His last EEG showed activity all over. That's typical for his Lenox gastaut syndrome but so hard to control. The truth hurts so bad sometimes. He is having several seizures a day. We are increasing his banzel. Praying this will help & give him some more seizure free moments. His VNS was adjusted & is also at 50% battery life. Dr. Flamini said your children are so complex.
We saved our sweet angel Mary Elizabeth for last. He has never treated her so we went through her history with him. That's always hard but such a healing time for me. After examining her he said he does think she has had another stroke. This is when I took a deep breath almost like a gasp. Again the truth hurts & my mind started wondering when would the next stroke hit, how would it be & how would it affect her. That one I need some time with. He said that he would be glad to order an MRI but was concerned about putting her to sleep for it. He went on to say the results wouldn't change anything. These words rang in my ears & still are. The results won't change anything. He is concerned about how tight she is. We are going to try baclofen. Please pray this helps her.
Thankful we have made it through another day by the grace of God. Thankful for all the love, support & especially the prayers. Thank you!!!
Wednesday, May 22, 2013
One kid. One idea. Help inspire someone to never quit!
Kevin Jr. (my 8 year old son) wanted a website to share stories and inspire others..
His idea became a reality...
Check out his you tube video!
Help us spread a ZeroQuit Attitude… One Kid at a Time!
Thank you for helping us spread the word and achieve our goal of 1009 pledges by Kevin's 9th birthday on August 2, 2013!
Visit his WEBSITE to take the pledge… Share it on your FACEBOOK page and TWEET it to your friends, family and followers!
the Andrews family
Tuesday, May 21, 2013
Saturday, May 11, 2013
Monday, April 22, 2013
Before I continue to share these feelings I want to say I am not looking for sympathy. I do want to ask ya'll for prayers please. I try so hard to cover up & mask the struggles. If not I would be crying a lot more often. I am admitting that being a caregiver 24/7 is exhausting. I have hit a wall & been knocked down hard. Each time I try to stand back up & dust myself off I am knocked back down.
I just received a message from a prayer warrior in my life. It was just kind of out of the blue. She said I am one of the strongest women she has ever known, but I don't always have to be. I don't always have to be. Wow! What powerful words. Just someone giving me permission not to have to be strong.
I don't want to be strong. I want to lie down in my mommie's lap & cry until I fall asleep.
The world can be such a hard, dark & lonely place. That's the world I am experiences lately. A world of sickness, disease, handicaps, seizures, fear, worry & heartbreak.
I fear waking up & one of my babies have gone to be with Jesus. I worry that I am missing something that is going on with them medically. I worry that Mary Elizabeth will get sick before we find her a new doctor. I fear getting old & who will take care of my babies. I fear getting old & my babies not being here anymore. I worry about Marlee Anne having these fears.
Am I doing all I can do? Am I doing the right thing? Am I doing what God wants me to do? Am I doing his will? Am I becoming more like him? Am I being moldable?
The sad part about this battle with satan is that I know what's right. I know that God's got this. I know the scriptures. I am praying the prayers. I got the praise music going. I can't go it alone. I have said many times this takes a village. Well I need ya'll. I need that village lifting me up. I need prayers for an attitude adjustment. I need to change my thoughts & ideas about all this. I need the fear & worry to be gone. I know all that's possible.
Wow. Look at that last paragraph. I am being very needy. My first thought is to apologize for that but I cannot. I am really in need right now. Please pray for me.
- Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn't leave me the time to nurture and maintain the relationships I really need.I could get super detailed here about the hands-on caring for my child ( Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention.I don't have much time to call or email my friends and even family...and if they don't call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day's when I had playgroups with other Mom's, open-house style, dropping in and drinking coffee at a friends' kitchen table with my child playing nearby.
Wednesday, March 20, 2013
On the way I started praying that God was ahead of us. Literally making a path through traffic for us. The wind was blowing the van so hard. I prayed that the wind would stop. I could still see the trees blowing but the van was no longer swaying. No longer hard to control.
Those of you that have experienced the hospital, ER or any doctors & nurses know how important it is for God to go ahead of you & put the right people in place. As soon as we pulled into the parking lot I could see he had gone ahead of us because of the parking attendant & the parking place.
I walked through the doors of the ER carrying Abe & a trauma nurse walked out. She took one look at him, made a quick call & we were in the trauma room. Like a well rehearsed play the doctors, nurses, respiratory team & techs moved about working on Abe.
After what seemed like an eternity of labs, X-rays & test the doctor said I am stumped. He was stable enough to move to the PICU.
Same thing there. God's steps ahead of us were in place & very visible. The PICU team got to work right away getting him settled & getting him comfortable.
The next two weeks were one of those roller coaster you would like to skip even if the wait time is short. Thankful that God carried us through.
On the drive home 2 weeks of tears flowed. It was a mixture of scared, worry, fear, joy, blessings, peace & so much more mixed in. After only a few minutes of crying I began to sob because the joy of The Lord & the love of God overwhelmed me. This is so not the perfect life I had dreamed of. God is so much bigger than that. On the way home I could not wait to he with my perfect family God created.
I cried also for the 2 little lives that were lost on either side of us while we were there. I pray for their families. I pray for Jack & Kemper as they are still in the hospital fighting a good fight. I pray for Mackenzie as she had another blood clot this morning but survived it. I pray for the families that went home while we were there. I pray for the families that are still in their struggles. I pray for the doctors & nurses & the rest of the medical team as they help to heal these children. May the feel God's guidance & allow him to use them.
The amount of thank you notes that I need to send out is unreal. Sadly they will most likely get placed on the back burner for now. Please know that our thanks is great to those of you that love, supported & prayed for us during this struggle. We are thankful that after all these years we have family & friends that haven't walked away & haven't given up on fighting with us. We couldn't do this without ya'll!!! Thank you so very much!!! Now go hug your loved ones. Tell them that you love them & make sure they know God as their personal savior.
With much love & gratefulness!
Wednesday, March 06, 2013
Well here I am again. Sitting in the PICU watching Abe's numbers on the monitors. Every doctor that comes in says they are baffled. They just don't know.
His seizures have thankfully slowed down some. He is on 10 liters of high flow oxygen in hopes of giving his body some rest. It's working so hard to fight whatever is going on in there. His temp is 103. There is a war raging on inside.
As I watched his body have seizure after seizure back to back I wondered if their is peace in his soul while all of that is going on within him. I wondered what he was feeling & what he was thinking. Could he hear me tell him that I love him? Could he see me beside him? Could he feel my touch?
Each day I ask God to use us. To use our family to minister in some way to someone. On the way up to the ER today I asked God to use us.
Not sure if he used us for the nurses or the doctors we have seen but I hope He did. I had to move the van & coming back up to the PICU I rode the elevator with a dad whose 14 year old son had a stroke at school on Monday. He is being transferred to Scottish Rite tomorrow to the rehab unit. As we stood out in the hall talking my heart was breaking. It all happened so quickly which I am thankful for because I had no time to get in the way or think about what I was going to say, who else was around or who was watching. God's words, God's timing, God's plan & God's will. My heart is heavy tonight for this 14 year old boy named Jackson & his family. You may have seen it on the news. Please lift them up in your prayers!!!
Well I am about to ask for another blanket. I don't know what the temp is in here but you could hang meat. They are keeping it cold because of Abe's fever. I am freezing. Please keep Abe in your prayers. Also please pray for Mike & the girls!
At least they gave Abe a Mickey mask. He wanted me to take a picture so his sissy could see it. They also gave him Cars diapers but I don't think he wants me to share that picture with ya'll!!!
Thursday, February 14, 2013
Thank you so much for my son –Abe. He is such a blessing. I am honored to be his father. He is so special. Touching lives and inspiring souls all according to your plan. Last night, late last night I heard a group of people singing and when I asked what was going on lo and below Abe was getting a happy birthday song sung to him by the UGA Miracle Students through the internet. They love him, must be those blue eyes, long hair and beautiful smile. Father God thank you for allowing me not to dwell on the obvious, but to be thankful for what you have provided. It is more than sufficient.
Abe another year- good. Son I know your struggle, hang in therewe know how the story ends. The Apostle Paul wrote in 2 Corinthians "Therefore we must not lose heart for outwardly we are wasting away but inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we must fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." God's words of comfort to me Abe. They help me to keep my focus on the greater things to come. Abe keep up the good work.
I love you my son,