Monday, March 29, 2010
Saturday, March 27, 2010
Saturday, March 20, 2010
Yesterday I got a call from Dr. Goldstein. He started our conversation by saying he was very very sorry. Never a good thing. I remember taking a deep breath & thinking we have gotten bad test results before.
He said Abe's MRI has gotten worse. He said it shows atrophy (wasting away). Sometimes I think it's better not to know the meaning of words. However I know that word well. As soon as he said it I thought - no it cant' be. He went on to say there is evidence of a progressive metabolic disorder.
He said he would send the results over to Dr. Shoffner so they could hopefully come up with a plan for supplements to help slow the progression. Immediately I thought what if we had not had a break in giving him CoQ10. What had I done? Have I caused this progression? All I could think is I need to talk to Mo. I need to hear her thoughts. I need to ask questions she & Dr. Shoffner will hopefully have the answers to.
When I hung up the phone it didn't hit me. Slowly over time the truth began to sink in. It has hit hard. I have gone from being angry, to hurt, to sad, to scared. Right now I am thankful. I can only tell you that that came from God. I am so thankful to be thankful. However that may be different by the time you read this.
I am so hoping that when Mo gets back in town her thoughts will be different. I am praying for different thoughts & a better outlook. I so hope they were read or interpreted wrong.
Thursday morning we left to go to Shriners hospital at 5:30. I was feeling really sick. My nerves I guess. The drive there was very nice. It was beautiful to watch the sky slowly light up. God was painting this glorious picture for us to enjoy on the way. They colors were
We got there an check in was great. Mike took Mary Elizabeth down to x-ray. While we were waiting on them they called us back, triaged Michala & put us in a room. Mike got Mary Elizabeth triaged after her
x-ray. He got her back to the room & it was time for him to go for his conference call for work.
Mary Elizabeth was there for CP clinic. The doctor seeing her was young. She was good & seemed knowledgable. She said that Mary
Elizabeth's curve in her back had gotten worse but was still ok without surgery. She said the good thing was that it was not the type of scoliosis that would impact her breathing.
Next we waited for genetics. A new geneticist came in which I hate only because I hate going over all those questions. I should have a tape recorder. I think that's all suppose to be part of my healing & growing process. I think I was having a hard to mold day.
She was concerned about Mary Elizabeth curve until she saw Michala. She said oh Michala's is much worse than Mary Elizabeth's. You know just kinda of that more & more stuff coming in. She left & said Dr. Saul would be back in. He is the one that discover the unusual gene
mutation on Michala. I really like him.
Well he came in and said I know that Dr. Shoffner (metabolic specialist Mo works for) has already told you what an unusually rare family you have. He said obviously we want to find a link between the
3 children but it doesn't look promising.
They asked us to enroll Mary Elizabeth & Michala in a study they are doing. He said it may not help them but the information would help others. We told him yes. They ended up getting blood from all of us except Marlee Anne. They were great at getting the blood even though it took about an hour to get it from Mary Elizabeth. Blood draws are always stressful for us but it helped that we stayed in the room & they came to us to get it.
The ride home was beautiful too. Everyone did great. Michala had had enough about an hour from home & wasn't so happy.
I feel like I should stop here & start a completely different email. You know what I will just for my journaling sake.
Thank you so much for the prayers for our trip to Shriners.
Thursday, March 11, 2010
outside and ask. They are checking now.
As I sit here praying part of my prayer includes something I have been praying about lately. When do we get to the point that we say enough is enough. I am praying for God to clearly say ok we are here. We have searched all we can to help Abe. Here is the child I have created. Here he is. Take him, love & nurture him.
My head wants more. My head wants answers. My heart says enough. My heart has put him through enough.
I don't remember the exact moments or even years when we got to that point with Mary Elizabeth & Michala. I just know the feeling of peace that came flooding over me when we said ok. It's ok. We will now choose to treat their symptoms instead of putting them through unnecessary stress just to find answers. Especially if those answers are not going to help & are not going to change things. If it's something they can do to help get answers or find a cure for someone else & nothing too stressful or painful is involved then ok. Other than that I am at peace with their lives.
For the most part I have good days. I love my family & I cherish the blessings they are. Some days that is overshadowed by seizures or all the overwhelming medical junk. Usually insurance & medical bills &
being tired from jumping through hoops.
Yesterday as I was talking to my niece I broke down worse than I have in quite sometime. As I was crying Marlee Anne came to see what was wrong. I told her I was ok. She sat beside me, put her arm around me &
said mom when Abe gets to heaven he will be fine. He will run & play & everything will be fine. It's like sometimes she becomes this wise adult sent to teach me so much.
Then just the other day she was talking about soon when Abe walks & talks. She said she can't wait to hear his voice. She hopes & longs for so much for him. A feeling I know oh too well.
I will admit this has been a very long & stressful week. I am so glad we have those appts behind us. The ERG is something I never want to do again. I know never say never. He cried & so did I. Today was just long.
We should get results in a few weeks. It hit me today that I really do not think I want to know. Who wants to know how imperfect, abnormal or messed up their child's brain is. We don't dwell on the negative & I
am afraid this is what that will do. However if it gives insight as to help with his seizures then ok I am ready to listen.
I pulled put my bulldog skirt a couple of times this week. It's now packed away for the weekend.
Tonight we were blessed with a visit from the UGA students from the Metropolitan Design Studio. Along with some awesome local friends. It was a fun visit & a great break from the stressful day. It was so nice
of them to take the time to come by. It really meant a lot to us. More than any of them will ever realize.
That brings me to this & then I will stop for now. You know when you have that leading or tugging on your
heart from God to do something - do it! You never know when you may turn someone's day or even their life around.
This week I received an email from a dear friend of mine, yes dear! She was sharing some thoughts to my
Emory email. I responded back to her & just by her opening that door for me to share more with her it changed my outlook drastically. I went away knowing without a doubt she was praying for those specifics that I asked of her. A friend stepped in at the last minute to sit with the girls so that I could go with Mike & Abe to Emory. Another was a call from my precious friend telling me she loved me. Then a text from a prayer warrior in my life simple saying she was praying for me. Thing is all those things were perfect
timing that could only have come from God's guidance.
Thankful for those in my life that listen to God's guidance & follow through to help carry me through this journey. Whether it's a facebook message, a phone call, a text, an email, cookies, coffee, a card, a pavlova or especially a quite heartfelt prayer - thank you! Praying I will yield myself to God & be used for HIS glory.
Monday, March 08, 2010
Wednesday, March 03, 2010
Tuesday, March 02, 2010
this outlet to share my thoughts. Thanks Sara!
We called the hospital this morning at 6:30 & were told that their
rooms were not ready & to call back at 8:00. At 8:00 we were told to
be at the hospital at 12:00. We got checked in and by 2:30 they had
Michala all hooked up. We are still waiting for her to have a seizure.
Praying she has one soon. She got terribly upset while being hooked
up. So thankful Mike was here with her for that. They were able to get
her lab work done too with only two sticks.
By 3:30 Abe was hooked up. He has had a seizure that last over an hour
with maybe a little bit of a break. They were able to get his labs
after only two sticks too. They gave him 7.5mg of diastat and he
started right back up into a seizure. Finally found his magnet and
after a couple of swipes he stopped. He is resting now. I didn't want
to make the call about the diastat. I wanted to make sure there was
enough info on the VEEG. I feel really bad!
This is so stressful! I am sick at my stomach! I want my mama. I want
this all to go away. Please pray Michala has a good seizure tonight &
one in the morning & they will say ok go home. At home they are still
having them but at least I am not sitting waiting on them to happen.
We have had wonderful nurses & EEG techs. The food leaves A LOT to be
desired. Thankful to have Kendra's muffins & Aunt Nay's snacks with me.
On a high note we got to see Linda & Tori. I even got to teach them
how to make dominos. They are now hooked.
Thanks so much for your prayers!
their rooms would be ready at 8:00. We were told to call back at 8:00.
At 8:00 they told us to be there at 12:00. We are on our way in the
snow & sleet. Please pray for a safe journey there. Please pray Mike
makes it back home safely. Also please pray for our friends that are
helping out at the hospital that they can get there safely. Thanks!