I apologize for cross posting this message but it was the easiest way to get it out. Thanks for understanding!
I really hate when life just gets so overwhelming that I cannot get my thoughts down on paper or rather computer. Lately life has been overwhelming to me. A lot of it is because I think too far ahead and too many what ifs. I didn't realize there were a good many people not getting emails from me if I send them from my phone. If some of you have already read some of these updates I apologize for the duplicates. To those of you that haven't received them I am so sorry! I will try to do better.
Where should I start? I will start with my precious angel Mary Elizabeth. She has been holding her own and being such a very sweet and patient big girl.
Marlee Anne has also been doing very good. She has been working hard on her school work. Her favorite thing lately is doing projects at night with her daddy. She and Mike have been doing a project almost every night. They both are really enjoying that. They have painted and built a solar system. Caught a catapillar, Connie will have to remind me of the kind. It has been wonderful watching it take it's journey through changing and becoming a butterfly. We are anxiously waiting to see what color it will be. A very neat experience! They have also been doing lots of experiments. Thankfully as of now the house is still standing.
Michala - my sweet girl is still having a tough time. Still 2 really hard seizures a day. The good news is that the VNS seems to have gotten rid of the little annoying ones and cleared some of the "clutter" going on in her head. She still has times when it seems she is having migraines possibly. Survivor clinic should be able to help us answer some of these questions because we are thinking some of this is the after effects of chemotherapy.
Abe sweet Abe! No way in the world did I dream that this little bitty baby that made his appearance last Valentine's Day would.... I cannot even think of a word. So many emotions everyday well up inside of me because of this little life that some how God thought I could care for.
I got head and I thought heart strong to wean him from some of his seizures meds. Ya'll may have remembered my thoughts were if he is going to have hundreds of seizures a day on that many meds then I would rather him have that many off meds. When I started to wean him from the Vigabatrin which I knew would be hard, he started having withdrawals. Just like a drug addict or alcoholic would have. He screamed, cried, had seizures and what I thought could be hallucinations. It was all so very bad. Several times I thought I would quit and put him right back on it. I am so very thankful for strong friends that supported me through this and said that I could do it. And even when I couldn't they said it's ok. I did end up increasing his Vigabatrin again because he started having seizures again that make him stop breathing. He is on a lower dose than he was so that's some success. Once he settles down some and his body is ready I will try to decrease his phenobarbital.
This life can be so incredibly hard sometimes and I am so very thankful for God's reminder that He is always there with me and never leave or foresake me. I see that through the people He has surrounded and blessed me with in my life. I apologize for being a ME person lately. I strive hard to be a good person, support others and lately that hasn't happened because I have been drowning. I was reminded that when I get these feelings out it helps me heal and go on so much better.
I am so thankful for the friends in my life that have stopped and said hey you need a minute, you need some time, take it and let's do something. I am so thankful that Mike notices those times I am that way and supports me through them. As a family we got to go to the Fuzz Run and had a great time getting out together. That evening we got together with 2 of Michala's Aicardi sisters and had a delicious dinner together.
Sunday my sweet friend took me to the Yellow Daisy Festival. I had a blast!!! LOVE LOVE LOVED it!!! I haven't been in years. It was great to spend some quality time with my friend and get out. The plan was to take all the kids but Mike said no let them stay with me. I have a hard time leaving them especially when any of them are not doing well but I have to say I did enjoy it.
Monday night I got treated to a wonderful meal out with another dear friend. We sat and ate. Took our time and chatted. We even went to Scoops for coffee. It was such a peaceful and very refreshing night.
After those 2 days I am ready to tackle the week. Tomorrow I have a dentist appt for the permanent filling to go on. Then Mary Elizabeth and Abe have endo appts. We thought that those appts would be quick and easy but because of the way some of Abe's test results have come back they may lead to more endocrine problems. We will be discussing some of that tomorrow.
Ya'll have been patient with waiting on test results and I thank those of you that have been concerned and have asked about them. Thank you to the prayer warrior in my life that was there praying when suspected results started coming in. Your words were very comforting and I thank you!
About a week ago I was told that some of the results were coming back. Then yesterday we received the report. I have not even counted how many pages it is but it's huge. Most things have come back negative or normal. Some things have come back questionable and concerning. Abe will have further test done to see if we can find a directions to go in. Mary Elizabeth & Michala will also have some test done to rule out some possible links so they will know which directions to go.
I asked what I should tell people and I was told to say that Abe is a very special little boy (no surprise to me there! LOL!!!) and he is very complex. This is a complicated process. Therefore this is going to take some time. Hopefully some of the test can be clarified soon with testing that will be done next week and we can at least help him with some of those things.
So as I take a deep breath and go back downstairs to take care of my babies I ask that ya'll pray. Please pray for guidance for the brillant specialist we have working on all Abe's stuff. Pray for the doctors that will be looking into the endocrine stuff tomorrow. Pray for us as a family as we once again feel so very close to something that may help while knowing we may once again hear God say No or Not Right Now. I am reminded by my sweet friends words - A Greater Yes!
This is NOT our life. This is not why God has blessed us with these children. I am not supposed to struggle daily with the Whys and What ifs. PLEASE pray for my heart, my life, that I will once again turn this all over to God and KNOW that HE is the one and only that can do this. He knows what the future holds and I know that He holds my every tomorrow. I am supposed to be in the here and right now. I don't want to miss a thing! As I watch my children struggle with seizures and just the simple things in life like breathing it hurts my heart. My heart literally hurts. I am overwhelmed and want to focus on HIM and let HIM once again carry me.
Thank you so very much for your continued prayers and love for our family! Please continue to pray!!!