I wrote this email last night but didn't get a chance to send it. I was hoping this morning I would have new insight and could rewrite this. I woke up spent so here it is. The email in it's original form.
I wish I had eloquent words to share with ya'll. I wish I was writing saying Praise God Abe's EEG was clear. Well that's not the case. All that comes to mind over the past hours I have tried to absorb this information, as I have tried to make sense of it, is Praise Him in the Storm, No Matter What Happens.
1 Thessalonians 5:18 - I have read it over and over again in all the following translations.
International Standard Version (©2008)In everything be thankful, because this is God's will for you in the Messiah Jesus.
New American Standard Bible (©1995)in everything give thanks; for this is God's will for you in Christ Jesus.
GOD'S WORD® Translation (©1995)Whatever happens, give thanks, because it is God's will in Christ Jesus that you do this.
King James BibleIn every thing give thanks: for this is the will of God in Christ Jesus concerning you.
American King James VersionIn every thing give thanks: for this is the will of God in Christ Jesus concerning you.
American Standard Versionin everything give thanks: for this is the will of God in Christ Jesus to you-ward.
Bible in Basic EnglishIn everything give praise: for this is the purpose of God in Christ Jesus for you.
Douay-Rheims BibleIn all things give thanks; for this is the will of God in Christ Jesus concerning you all.
Darby Bible Translationin everything give thanks, for this is the will of God in Christ Jesus towards you;
English Revised Versionin everything give thanks: for this is the will of God in Christ Jesus to you-ward.
Webster's Bible TranslationIn every thing give thanks: for this is the will of God in Christ Jesus concerning you.
Weymouth New TestamentIn every circumstance of life be thankful; for this is God's will in Christ Jesus respecting you.
World English BibleIn everything give thanks, for this is the will of God in Christ Jesus toward you.
Young's Literal Translationin every thing give thanks, for this is the will of God in Christ Jesus in regard to you.
Maybe this is one of those times if I say it enough it will take hold. Thank you God.
Honestly right now I hurt so bad I am numb. My dealing mechanism maybe. So many thoughts so many feelings. I am going to ramble a little to get through some of this so bear with me please.
Today Mike and the girls let Abe & I off at the hospital. We got checked in and upstairs fairly quick. Abe was so very sleepy. He fussed the whole time he was getting ready for the EEG. Several times throughout the EEG I thought OK it's going to be fine. Then Glenda would ask me a question and I would think UH OH. When we left I wasn't sure how to feel.
When I called MIke to come get us he said they were at the mall. North Lake. When we got in the van Mike said Marlee Anne tell mom where you went today. She said I saw where you met Daddy. North Lake Mall was where we met the first time. Marlee Anne picked up the wrong book at the mall so she and I ran back in to exchange it. As I walked in the smell, the look, those memories came rushing back. It was a nice moment.
On the way to the hospital they called to tell us Abe's testicle surgery will be Sept 30th. Please pray that he does well. He will have to stay over night and you know us being apart as a family makes it tough on us. Please pray that everyone does well. Thanks!
We got back to the doctors office and didn't wait but a few minutes. We had to get everyone's vitals. Mary Elizabeth gained a pound, Michala 5 pounds (in 6 months) and Abe 7 oz. (in 2 weeks).
When Dr. Holt came in I heard him mention Mo. My heart jumped but then I thought she wouldn't be here. Well right then walked in Mo. Abe's wonderful NP from the NICU. I blinked back tears and a ton of emotions. I think she was as excited to see us as we were to see her.
Well Dr. Holt said I will check the girls and then we will discuss Abe. I told him that didn't sound good. He didn't comment.
He checked Mary Elizabeth. He was pleased but is checking on changing her CoEnzymeQ10. There has been talk about higher doses being better. We don't go to the Mito specialist until Dec so he is going to check into it some more.
Michala is always so excited to see him. We decided to change his clonopin back to tranxene to see if that would help her morning seizures that have gotten so bad. Later in the day they are not as violent. The morning was are getting bad though.
I couldn't hardly breathe when it was time to discuss Abe. I wanted him to just come out and tell me. Instead he wanted us to explain what we had been seeing, when it was happening and all that. Then he said yes, he confirmed my fears. I had been praying all day that No Matter What the results were that God would give me the grace to handle it and the wisdom to be able to take it all in. Well it was a flash back to when Dr. Olson told us Michala had cancer. I remember that day all too well. I couldn't cry. I couldn't hear a sound. I saw his lips move. I felt the rush of heat come flooding over me. I felt sick. That was exactly what happened today. A million thoughts went rushing through my mind. I was getting too far ahead. There is a reason God doesn't let us see the future.
OK stop Kelli, get a hold of yourself and listen. I was so not prepared for this. He changed Abe's phenobarbital dosing. I already thought he was taking so much. It takes his breathe when I give it to him. So any way we will increase his phenobarbital and see if that helps. If not we will increase it some more. If not Topomax. If not that Vigabatrin (still not FDA approved). They do not like to do ACTH any more. I wasn't aware of that.
So now on to more studying. More learning. More trusting. I know when this hits me it's going to hit hard. I am not sure I am prepared. Bear with me please!
Thanks so very much for your prayers. Please continue to pray. Especially for Mike and I as we learn to accept what we didn't expect. Please pray we are able to deal with this new stress in a reasonable way. Please pray that we continue to allow God to show us the blessings in each of our children. That we continue to grow and learn from this. Our children's lives are not in vain. I am having a hard time seeing him suffer and cry out with these. Please pray for peace and strength for our family.