appt update

Mike has taken Marlee Anne to the library so I thought before I try to compose myself once again I would write this email. When I called home my sister asked if I could tell her how it went or would I rather send an email. It hit me it's easier to send an email cause ya'll don't have to understand my spoken word through the tears like she did.

 

I had visioned writing this email to ya'll saying woohoo it's great news the first neurologist that called us can't read. However that is not the case. He does know how to read & he read Abe's MRI report just fine. Dr. Flamini could not give us a time line. They do not know how fast it is progressing. He doesn't know of anything to slow or stop the progression.

 

As if that wasn't enough to handle for the day he went on to Abe's EEG. He has Lennox-Gastaut Syndrome. I so hoped he didn't but as his seizures continued to progress & not be able to be controlled I did wonder.  It's a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types. Definitely not a diagnosis we wanted.

 

We will increase Abe's lamictal over the next 5 weeks. A week after that we will try to decrease his vigabatrin by 1/4. If he starts having those other seizures again we will put him right back on it. He is on so much seizure medication & it would be nice to get him off some if we can do it safely.

 

His EEG showed that he is having seizures all the time. So many so they couldn't count. When he is not having a seizure he is having some type of activity on both sides of his brain. That's the reason we very rarely catch a glimpse of a smile, babbling or anything else. Not much clear time. Working on overload most times even when he sleeps.

 

Michala's EEG did show the drop seizures. She recently started her period (I apologize if that is too much info for some of you but it's needed in case some of our seizure knowleagble friends think of something). Once she started it seemed to have a change in her seizures. That along with the lamictal increase. He increased her VNS output. Right now we will hold where we are with her & let her body tell us what she needs.

 

I hope that I covered most everything. I go from moments of anger where this wall comes up, to complete exhaustion and breaking. This being moldable by God stuff is exhausting! I guess it's me making it that way. I was hoping once the appt was over the stress would kind of go away. It's lingering. It's hard to go through this grieving of losing a part of our children each doctor appt.

 

Yesterday as we had pictures made with the bunnies Aunt Kim got for the kids I watched Abe with the bunny & wondered would this be his last picture with bunnies. Mike & I jumped in the picture with all four of them & I thought is this going to be our last family picture. I did that with Mary Elizabeth & with Michala. I am ready to be past this phase. I know though that I have to deal with it on my own time & get to that point.

 

Thanks so much for all the prayers & support & for standing in the gap for us!

No Matter What Happens

Almost 17 years to the day I was sitting at Julia A. Porter listening to our dear friends The Johnson Brothers sing. As I sat there having contractions we just knew Mary Elizabeth would be born any minute. Jason dedicated the song No Matter What Happens to me because it was & still is my favorite song. Little did we know that song would become the theme for our lives.

 

Mike & I try so hard to be strong but the ways of the world wear on us. Sometimes I so wish we could leave & only have our family of 6 to deal with. Instead God intends for us to use ourselves & our family to His glory. We are not perfect & are actually a long way from it. We do however try each day to live our life for Him.

 

Each day I sing this song at least once. It's the name of our blog & will be the title of my book. So many people have asked why. I asked John to fix it where I could have it on my phone. He sent it to me Friday afternoon. While playing it for Mike, Marlee Anne said mom that's the song you always sing. So now I would like to share it with ya'll.

 

It's a beautiful song that means so much to Mike & I. It has reminded us why we continue this fight for our children & why we give God the praise.

 

Thank you Jason, Jeff & John Johnson for your lives, your friendship, your love & your prayers. Thank you for this beautiful song that has carried us through some rough days in the past 17 years. It has also been there with us through more often some awesome days!

 

 http://www.onetruemedia.com/shared?p=a9fdf7e4354e554b8aa494&skin_id=701

 

With thankful hearts!

Mike & Kelli

Abe's MRI results

Ok the Shriners update is not what is making me sick & upset. It's Abe's results. This is not something I am ready to talk about but people keep asking about results so here they are.

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 determined not to let Satan take my joy. God has blessed me with such an incredible family. I don't want to miss one minute of those blessings because I am worrying about things I have no control over. That is so easy to type & much harder to do. Even though this diagnosis has hit hard we will continue to serve the mighty God that we do. We will continue to allow Him to use us in whatever form & wherever He wishes. We have received hard news before. We were told Mary Elizabeth would not live past the age of three. We were told Michala wouldn't survive her cancer. We know that all this is in God's hands. He had this all planned out way before now. We will continue to rely on Him to carry us through this journey.

 

Now there is an urgency to find out how progressive it is. How much did it progress since the first MRI?

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.

 

Please pray for Abe. Also for us as we come to accept yet another new chapter in our lives.

Shriner's appt update

Everytime I even think about writing this I get sick at my stomach,  start crying yet again & now I am shaking. I thought if I didn't write  it it would go away. Still this morning the reality is here.

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 
amazing.

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.

WHEN?

I started this note earlier today. Originally it was going to be a blog post but I thought I should update on our two appts this week. Well at least a little I did. I didn't finish until tonight so it's quite the mixture.

 

Waiting on Abe to come back to day surgery. He should have been done with his MRI & in recovery by now. I am frozen to my chair & don't want to ask. Being so well in tune to me & my anxiousness Mike walks 
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.

more appts

I honestly wanted to title this email more crap. However my mom taught me that wasn't a nice word. So instead it's more appts. Any way you get the idea or you will after this email. I apologize in advance for the tired, stressed, shortness that I am trying to keep contained. I don't like feeling this way and have been working & praying hard to get my positive spirit back. Satan is working overtime & knows just the right buttons to push. This too shall pass!

 

Tomorrow Abe has to go to Emory for an ERG. Electroretinography (ERG) is an eye test used to detect abnormal function of the retina (the light-detecting portion of the eye). Doesn't sound too bad right?! Well I still have nightmares of when Michala had it done when she was a baby. I said ok about having it done with the agreement that if Abe has a hard time with it I can request them to stop at any time. I agree with Mike & Dr. Lipsky that it's great to have the info if it can be obtained easily. Please pray that it's not stressful on Abe or us for that matter. It can take any where from 2-4 hours by the time they get his eyes dilated & do the numbing drops.

 

After that we have to go over to Egleston for a blood gas draw to see how his CO2 is. Please pray that it has gone down. We hope to get an appt with pulmonology soon so that we can get this resolved.

 

Thursday Abe is scheduled for an MRI. Easy enough if it wasn't for his need for supplemental oxygen. Because of that he cannot be sedated. He will have to go through day surgery and have general anesthesia. I have filled out his precertification for surgery so hopefully we won't have to have another day for precert in the hospital.

 

I realize none of this is terrible & it all could be worse but it's my baby. My heart hurts to watch him endure all this. However I know it needs to be done. All this leads me to another topic for another day.

 

Thanks so much for your continued prayers & support.

We're HOME!!!

Yes that's right we are all home together tonight. How sweet it is. I am completely exhausted! How that can happen in as little as 36 hours I don't know. It actually feels like days.

 

First I have to thank everyone that pitched in & helped out to make this happen all at one time. We couldn't have done it without ya'll. Thank you so very much for everyone's prayers. We couldn't have made it through this quickly without those prayers.

 

The hardest part was actually writing down how many seizures, the length & describing them. Whenever I say how many they have I tend to underestimate. I realized these past two days & one night just how much I underestimate.

 

The got plenty of data on both to know the type of seizures they are having. Hopefully we will have a plan & direction in the next few weeks.

 

Dr. Cheng came in to tell me about Abe's seizures first. Well let me go back. First thing this morning Nancy, NP came in and said boy he had A LOT of seizures.. She said I think we have enough data. When Dr. Cheng came in he demonstrated them, described them & told me all about them. He said you have quite an unusual little boy here. HA!!! Where have I heard that before? He described the background of his brain as being jumbled & cloudy. He said that his seizures are all over the place. That explains why we see so many different looks of one type of seizure.

 

He came in a little later to talk about Michala. He was quite cute talking about her left & right hemisphere. Her seizures come from both sides he said. Then he said and sometimes they even jump across even though she has no corpus callosum. Well then! She is having drop seizures which is what I thought they were. I just weaned her from Banzel because it was making her so irritable. Now I am told this is probably the best medication for these types of seizures.

 

So any way we will have a plan soon. I pray!

 

Abe's CO2 was 34 from yesterday labs. It's supposed to be 20-28. They repeated it today & it was 38. They ended up doing a blood gas after we had been discharged. If it had come back abnormal other than the CO2 being elevated they would have kept him. It was all fine except his CO2. We have to go back in a week to have the blood gas repeated.

 

His CO2 being high triggered some other questions so more test are being done. Some that will take a little bit of time. If it leads us closer to a diagnosis then this was good. However it's just "one more thing". I wasn't ready or prepared for one more thing.

 

I had some what of a melt down last night which was witness by some dear friends. Thankful today they are still dear friends & carried me through that time.

 

Sara shared this scripture with me last night. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27

 

I have read that scripture so many times before but last night it had new meaning for me. I was so stressed over seizures I see Abe having every day. Not knowing when or if to give rescue meds & feeling like a terrible mom. I read that scripture and a peace came over me. The seizures, the things I have no control over & cannot change are of the world. Taking those away will not give me peace. It will make me feel better I am sure but there is sure to come something else that will become a thorn in my side. My peace HE will always be with me.... 

 

No Matter What Happens no matter what trial I must face I will constantly speak of His glory and grace (Johnson Brothers). I hope this is what the doctors & nurses saw in me. I hope this is what the world sees in me. Not me but HIM!

 

Thanks again for all your prayers!

 

Much love!

Kelli

Update

I am sitting in Michala's room using Sara's laptop. How nice to have
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!

Heading to hospital

This morning we were supposed to call the hospital at 6:30 to see if
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!

VEEG hospital stay

WHEW! I had to take a break from packing. I should be done & the van should be loaded but oh well.

 

We are preparing for the week stay in the hospital with Michala & Abe. This is for video EEG monitoring of their seizures. I am so hopeful that we will get good info so that we can get a direction on how to help them. My heart hurts from seeing both of them have so many seizures.

 

Marlee Anne was telling me that she didn't want us to go. I explained to her that the doctor is hoping to get information so that he can help them. She said then Abe can sit up & walk. Oh the faith of that precious child.

 

Ok we have lots of specific prayer request. First SEIZURES!!! I know all this time we have been asking for prayers for no seizures. Here we are asking for them, needing them. Please pray that they have seizures, plenty of them & early in the stay.

 

Please pray that Michala will do ok being confined and hooked up to all the wires. We always say that is why she went through cancer at such an early age. If not she would have been double trouble with all those wires & being accessed for chemotherapy. Marlee Anne is packing lots of books, magazines & some of her favorite toys. We hope that will help entertain her.

 

Please pray for the doctors & nurses as they take care of us & help us find answers & seek direction. 

 

Please pray for our family as we are separated for the week. Ya'll know we don't do that well. Tears flow now as I stress over this. Please pray that Mike, Mary Elizabeth & Marlee Anne will all be fine with us gone & that we will be ok without them.

 

We have family & friends that will be helping out at the house & at the hospital. Michala & Abe will be in separate rooms & someone has to the stay with them both. We had some friends graciously volunteer to come & stay. Please pray for their families as they are away helping us. Also please keep everyone that is helping out at home in your prayers. We know this is a lot to ask & we are so thankful for the blessings!

 

OK I think that covers it for now. I still do not have it set up to send mass emails from my phone. I can update our blog from my phone & will do that as often as I can.   http://nomatterwhathappens-kelli.blogspot.com/        If you would like to be notified of updates to our blog you can click subscribe to post which is at the end of our blog & enter your email address. I will update FB regularly too I am sure. All this depends on whether I am able to use my cell phone in the room with the EEG equipment without it interfering. OK that should be a prayer request too. I really like having that contact.

 

Thank you so very much for your prayers & support. Taking a deep breath & going on. My favorite scripture is Jeremiah 29:11. For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I have held tight to that scripture today.