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Thursday, April 01, 2010
You're invited to Kelli Hopkins' Online Stella & Dot Shopping Event
Mary Elizabeth's 17th birthday
Every time I type or say Mary Elizabeth's 17th birthday I have to stop a minute. It's hard to believe. How very wonderful! We are so very blessed. She has surpassed her life expectancy by 14 years. A great reminder that God is in control.
Yesterday was her 17th birthday & what a beautiful day it was. I have learned more from Mary Elizabeth in the past 17 years than I could ever learn from anyone else. She has taught me what is important in life. She is the most understanding, compassionate & forgiving soul I have ever met. She has taught me about unconditional love, faith & trust.
I would not have chosen this life for myself. In my dreams this is not the "perfect" life I created. I am so thankful for unanswered prayers. I would have missed out on so much in life without this precious angel.
My prayer is that she has also blessed your life as richly as she has blessed mine. Thank you for sharing the past 17 years with us.
Love ya'll!!!
Kelli
Mary Elizabeth's 17th birthday
Every time I type or say Mary Elizabeth's 17th birthday I have to stop a minute. It's hard to believe. How very wonderful! We are so very blessed. She has surpassed her life expectancy by 14 years. A great reminder that God is in control.
Yesterday was her 17th birthday & what a beautiful day it was. I have learned more from Mary Elizabeth in the past 17 years than I could ever learn from anyone else. She has taught me what is important in life. She is the most understanding, compassionate & forgiving soul I have ever met. She has taught me about unconditional love, faith & trust.
I would not have chosen this life for myself. In my dreams this is not the "perfect" life I created. I am so thankful for unanswered prayers. I would have missed out on so much in life without this precious angel.
My prayer is that she has also blessed your life as richly as she has blessed mine. Thank you for sharing the past 17 years with us.
Love ya'll!!!
Kelli
Monday, March 29, 2010
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!
Saturday, March 27, 2010
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!
With thankful hearts!
Mike & Kelli
Saturday, March 20, 2010
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.
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.
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.
Thursday, March 11, 2010
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.
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
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.
Wednesday, March 03, 2010
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
Tuesday, March 02, 2010
Update
I am sitting in Michala's room using Sara's laptop. How nice to have
this outlet to share my thoughts. Thanks Sara!
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!
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!
Monday, March 01, 2010
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.
Tuesday, February 16, 2010
Snow 2010
What a great time in our 6" of snow that last about 24 hours. We all enjoyed it so much. We kept Mary Elizabeth & Abe inside in hopes of keeping their temps from dropping. The rest of us enjoyed sledding though. We took over 400 pictures. Here are just a few of our favorites. That night it snowed I walked outside late because it looked so bright. It was incredible how quiet & peaceful the world seemed. So beautiful!
Abe's 2nd birthday
What a celebration! I still cannot believe it has been 2 years. What a miracle our sweet little man is. We had a wonderful time at the Big Apple Circus. Thanks so much for everyone that came to celebrate with us. It was great to be with ya'll & our Camp Sunshine family on this special day.
Thanks to everyone for all the prayers & support over the past 2 years of Abe's life. We appreciate ya'll so very much!!!
Sunday, February 07, 2010
Heart ramblings
Today I am thankful to be feeling better & moving a little better. Hopefully with each day I will get back to myself. Hopefully soon! Thanks so much for the prayers & support!
My heart has been thinking, dreaming, & even grieving lately. Next Sunday our sweet baby boy turns 2. I immediately thank God for his life & these 2 years. There is definitely reason for him to be here because he could have slipped away so easily. Some people say wow can you believe it's been 2 years. Well yes actually I can. The past 2 years somedays feels like a lifetime of heartache & fear. Then on the other hand no it's just a blink of an eye & I cannot love him enough.
I am grieving the baby I thought for 9 months that I would be having. I am thinking of what would have been. I am dreaming of what he would be like.
For Abe's 2nd birthday we are going to the Big Apple Circus to support Camp Sunshine. He will be 2 and sitting in a wheelchair. A wheelchair?! That's not right! He may not even realize he is at the circus. He may have seizures that day. Why should that day be any different from all the others.
The only gifts I would like to give him for his birthday cannot be purchased. No amount of money can buy what I long for him. Not even the best doctors can heal him. God for whatever reason has chosen not to at this time. That for me is hard! That is so entirely selfish of me because I do believe God makes no mistakes. I believe that Abe is perfect. All the medications & medical equipment, breathing treatments & oxygen get to be too much sometimes. I am first & foremost his mommie. Then I am his caregiver. Today my mommie heart hurts & longs for more. Again that is truly selfish because he doesn't long for amything. His heart is pure & perfect & he knows he has all he needs.
I went through all this with Mary Elizabeth & Michala, well I actually still do on their birthdays. You would think I would be used to it. I so wanted to share this today & not next week so that I could get it out. So I could ask for your prayers. I want next Sunday to be a celebration of a beautiful life that God so perfectly blessed us with.
That's not to say I won't still wish that Abe was sitting up watching the circus, laughing & smiling. I wish to see those sweet feet walking & running. I long to hear him say mommie I love you. I will hold on to that hope.
I know some of you understand this all too well. For that I am so very sorry! I know some of you don't understand but care so much for us. Thank you for letting me ramble & share my heartfelt thoughts.
My heart has been thinking, dreaming, & even grieving lately. Next Sunday our sweet baby boy turns 2. I immediately thank God for his life & these 2 years. There is definitely reason for him to be here because he could have slipped away so easily. Some people say wow can you believe it's been 2 years. Well yes actually I can. The past 2 years somedays feels like a lifetime of heartache & fear. Then on the other hand no it's just a blink of an eye & I cannot love him enough.
I am grieving the baby I thought for 9 months that I would be having. I am thinking of what would have been. I am dreaming of what he would be like.
For Abe's 2nd birthday we are going to the Big Apple Circus to support Camp Sunshine. He will be 2 and sitting in a wheelchair. A wheelchair?! That's not right! He may not even realize he is at the circus. He may have seizures that day. Why should that day be any different from all the others.
The only gifts I would like to give him for his birthday cannot be purchased. No amount of money can buy what I long for him. Not even the best doctors can heal him. God for whatever reason has chosen not to at this time. That for me is hard! That is so entirely selfish of me because I do believe God makes no mistakes. I believe that Abe is perfect. All the medications & medical equipment, breathing treatments & oxygen get to be too much sometimes. I am first & foremost his mommie. Then I am his caregiver. Today my mommie heart hurts & longs for more. Again that is truly selfish because he doesn't long for amything. His heart is pure & perfect & he knows he has all he needs.
I went through all this with Mary Elizabeth & Michala, well I actually still do on their birthdays. You would think I would be used to it. I so wanted to share this today & not next week so that I could get it out. So I could ask for your prayers. I want next Sunday to be a celebration of a beautiful life that God so perfectly blessed us with.
That's not to say I won't still wish that Abe was sitting up watching the circus, laughing & smiling. I wish to see those sweet feet walking & running. I long to hear him say mommie I love you. I will hold on to that hope.
I know some of you understand this all too well. For that I am so very sorry! I know some of you don't understand but care so much for us. Thank you for letting me ramble & share my heartfelt thoughts.
Tuesday, November 03, 2009
signs of my nervous breakdown
Please know that I am laughing as I type this email. I don't want anyone worried that I really am about to have my nervous breakdown. Maybe me laughing about all this is actually one of the beginning signs of my nervous breakdown. I always wondered what that one thing was going to be that pushed me over the edge. Ya'll hang on tight to me when it happens ok?! Don't let me fall!!! This email is going out to several of our list. I apologize for typing one long email to cover everyone.
Summary of this email: According to Abe's muscle biopsy done by Dr. Shoffner, Abe does not have a mitochondrial disease. He has an extremely rare something (disease or syndrome - I am sure he said but I cannot remember) that Dr. Shoffner has never seen in all his years. There is one other case in Boston. He has contacted his colleagues all over including internationally. They are all intrigued and willing to help name this. Oh yes it doesn't even have a name. Remember I am laughing why I type this.
I summarized this email for those of you that are interested in just the basics. OK for those of you that want to read my much needed ramblings please continue with this email.
Today we met with Dr. Shoffner. who is internationally recognized for his research in rare diseases. People from all over the world travel to see him and have him do their muscle biopsies. We only had to drive 1 hour. The best part is that now Mo is with him. Ya'll remember Mo who was in the NICU with Abe when he was born. Then the day Dr. Holt told us Abe was indeed having infantile spasms she walked in the room and told us she was with Dr. Holt. Now in hopes of helping Abe and other children she is working with Dr. Shoffner.
We or I went in there today expecting answers. I have way thought he would say Abe doesn't have a common mito disease but I do think it's some type of mito. Then I fully expected to get a direction and answers as to how we could help Abe. He has been having seizures non-stop for over 2 days. The moon yes, the weather yes & the 5 teeth he is cutting yes. I know all those play a huge factor with him and I continue to remind myself that this too shall pass. So as we sat there we got none of the above.
Dr. Shoffner said as you know we have found large amounts of tryptophan in Abe's urine. He continue to tell us that what they have found with Abe linked to the tryptophan he has never seen before in all his years. He said it's all very serendipitous. That sounds so nice doesn't it. Reminds me of a Lifetime movie. Not sure who I want to play me but I want Sean Connery to play Mike. Just a few days ago Dr. Shoffner received a call from a friend of his who is a specialist in Boston. He asked Dr. Shoffner if he had ever seen a patient with this tryptophan problem. Dr. Shoffner said yes just a few weeks ago. Again he said very serendipitous. While they sit intrigued we sit in shock, I think. I think that's one of the feelings I am feeling now. Several times throughout our meeting he said I hope I am getting my point across about how extremely rare this is. He said you are an extremely rare family. OK you know I am perfectly fine with common. A common cold, common symptoms, common anything.
He asked us what led us to have more children after Mary Elizabeth. Mike explained to him that we wanted more children and there was no reason not to. No one had ever made us aware of a reason not to have more children. I went on to tell him that we were told Mary Elizabeth's mitochondrial disease was a sporadic mutation. I realize that a lot of people think we are crazy for having more children after the first one. There are some people that wouldn't have. Then we went on to tell him that when Michala was diagnosed with Aicardi syndrome we were told that it didn't happen more than once in a family. Plus my wonderful friend MaryEllen said we had to have another child. Then Marlee Anne is born and we thought WOW we can have a typical child that is healthy. Why not have another one? Right? OK ya'll don't have to answer that. I know and have been told by some of my closest friends that they thought we had totally lost it when we told them that we were having another baby. He asked if none of the doctors or geneticist we had seen had never told us not to have more children. No we were never told that. However I want to share now that I fully believe everything happens for a reason. I fully trust and believe this children are God's children created perfectly. Maybe not in the medical eyes, maybe not in society's eyes but in the eyes of us and those that love them they are perfect. We did tell him that had we known we would not have had any more children. We would love not to have the medical, financial and emotional burdens that we deal with daily because of their disabilities. I think of our life without them and realize how unfulfilled and empty it would be. It would have been a mistake for us to take all that into our own hands. So here we sit with our extremely rare family. LOL!!!
OK if you have gotten that far please continue to read this or come back to it at a later time. It is really quite humorous and the reason that Kim & Kendra will never again call us and ask how our appt went. I threw up on them with all of this within a matter of minutes. I was so hoping that would help me process it. Laughing now but don't expect that tomorrow or don't be surprised when it hits me & I am crying about it all.
Well they had just moved into a new office and today was the first time they were seeing patients there. It's a great location, great set up, very nice, clean, comfortable and welcoming. Yes I realize we were going to a doctor office and I am not sure what I just described. We walk in and Dr. Shoffner calls us right back. He goes over everything with us, checks Abe out and we go out to wait for the labs. Michala gets called back first. Carla is the phlebotomist and is wonderful! Last time she took blood from Mike & I and neither one of us felt it. Well that's not Michala's problem. Michala's problem is that she hates to be held down ever since she was held down for chemotherapy access. So Mike takes her back. While she is screaming in the back, yes we can hear it all the way to the front of the building. I bet their neighbors are thinking WHAT just moved in next door. Any way while she is having blood drawn I bag Abe to get his urine. The diaper I take off is soaked so I think it will be a little while before he goes. As soon as I get the bag on he goes so much that it overflows the bag and gets his pants wet. I didn't even have a change of clothes for him. I just lose it right there. I start laughing hysterically. I know the mom is thinking oh my I am about to see a real live nervous breakdown right here and now. Good thing is that mom probably wouldn't think anything of it. I pick him Abe and head to the lab to get a specimen cup. I go to the next room and get the urine from the bag in the cup. Then I am thinking ok I need to get this back to the lab, clean Abe up, clean me up and the room we were just in. I walk back to the lab and Michala is still screaming, flailing about, grabbing Mike, pink tape all around one arm & really giving Carla fits. Give Carla the urine and go to get the room cleaned up. Mo sees me and says no she will get it.
I get back out to the waiting area and sit down on the verge of tears. I just know something is going to trigger it. I had already cried a little when we were in with Dr. Shoffner. As I was sitting there holding Abe while Mary Elizabeth is singing and laughing. Yes she knows nothing is going to happen to her today and she is so very happy. In walks a couple with a special needs child in a wheelchair. The mom sits down and goes oh my look at that double wheelchair I have never seen one of those before. LOL!!! We are used to looks and stares from most people but from them. No I am only joking she was very intrigued by it. Mo even asked if she could bring a mom to see it.
Mike walks out and his neck is bleeding from Michala clawing him while he tried to hold her down for blood work. He said good thing she battled cancer when she was young cause going through chemo now would be really rough. Mo comes out with scratches all over her too I think. She looks at me and says you ok. I honestly say no, no I am not. She says you want some water. Well I crack up. I said Mo water is not gonna do it. She laughs and still hands me some water.
Michala is grabbing at her arms. Yes arms. Carla had to stick her 3 times to get all the blood they needed. Michala kept getting mad and tensing up and she would blow the vein. Mary Elizabeth is still laughing like na na na boo boo and singing to the top of her lungs. Mike said I am taking these two out to the van. Marlee Anne waits with me.
In a little while Carla calls us back for Abe's labs. As she is prepping Abe she says now this is Marlee Anne. I said yes. Marlee Anne goes why. She said well I need to get blood from you too. Well Marlee Anne's face goes white. I really think she is about to pass out. Then she starts sobbing. I mean boo hooing. We get Abe's blood drawn all the while Marlee Anne is crying and trying to figure out a way to get out of this. My phone was in the bag when Mike took the girls out. I can't even call him or send a message to ask everyone to pray for her. I just pray harder with her.
When Carla gets done with Abe she tells Marlee Anne she needs her to give her a sample in the cup. Marlee Anne jumps up and says oh I can do that I need to go. Well we go to the restroom and Marlee Anne does a great job. I am about to bust but remember Mike took the girls out and I have nothing for Abe to be in. I ask Marlee Anne to hold him. She tries but he is too heavy. As I sit on the potty holding Abe, Marlee Anne says you should have taken us out to sit in there chair right out there. The mind of a child. She was so right. Instead I am holding Abe while I potty. I finally get my pants pulled up but Marlee Anne has to zip them. Wash up, grab a paper towel to get the specimen cup and head out. As soon as we walk out the door Mo is there and says oh ya'll still here. I give her the look and say don't even go there.
We go back in and Marlee Anne sits down like such a big girl. She did an amazing job. One stick and she gets 3 vials filled up. She bleeds really fast like her daddy. I was so incredibly proud of her. She was so excited to show her daddy her smiley face bandage. Didn't even get a picture of her first time giving blood.Still not too sure she will be a blood donor. She said that if it will help other people she will do it.
Our plans were to go have a nice supper before heading home. Well the screaming, crying, laughing and the seizures changed those plans. Mike did stop by Cheesecake Factory for take out cheesecake and coffee. YUM!!!
We get home and I get my H1N1 vaccination. Everyone had already gotten theirs so I was glad to get mine out of the way. OK as if all that wasn't enough for one day I remove a child proof outlet cover and blue sparks fly. Then the TV, TIVO and Abe's feeding pump stop. Mike checks the fuse box and nothing is tripped. I put the cover back on and everything comes back on. Not the way that should happen. We get in touch with Uncle Roy and he says do not use that outlet tonight. WHAT? NO TIVO? That's one of my things in life that I would have to try very hard to replace right away if something happened to it. I only have about 5 "things" that are that way and that's one big one. So Mike brings in a HUGE orange extension cord and runs everything into that. LIFE! Sometimes you just got to laugh about it.
If ya'll made it this far through these heart ramblings of mine then thank you. Thank you for trying to understand and walk this journey with us. Thanks for your continued prayers and support.
With love & gratefulness
Kelli
mommie 2 4 incredibly rare and beautiful angels
married to an extremely rare angel (I truly mean that)
Summary of this email: According to Abe's muscle biopsy done by Dr. Shoffner, Abe does not have a mitochondrial disease. He has an extremely rare something (disease or syndrome - I am sure he said but I cannot remember) that Dr. Shoffner has never seen in all his years. There is one other case in Boston. He has contacted his colleagues all over including internationally. They are all intrigued and willing to help name this. Oh yes it doesn't even have a name. Remember I am laughing why I type this.
I summarized this email for those of you that are interested in just the basics. OK for those of you that want to read my much needed ramblings please continue with this email.
Today we met with Dr. Shoffner. who is internationally recognized for his research in rare diseases. People from all over the world travel to see him and have him do their muscle biopsies. We only had to drive 1 hour. The best part is that now Mo is with him. Ya'll remember Mo who was in the NICU with Abe when he was born. Then the day Dr. Holt told us Abe was indeed having infantile spasms she walked in the room and told us she was with Dr. Holt. Now in hopes of helping Abe and other children she is working with Dr. Shoffner.
We or I went in there today expecting answers. I have way thought he would say Abe doesn't have a common mito disease but I do think it's some type of mito. Then I fully expected to get a direction and answers as to how we could help Abe. He has been having seizures non-stop for over 2 days. The moon yes, the weather yes & the 5 teeth he is cutting yes. I know all those play a huge factor with him and I continue to remind myself that this too shall pass. So as we sat there we got none of the above.
Dr. Shoffner said as you know we have found large amounts of tryptophan in Abe's urine. He continue to tell us that what they have found with Abe linked to the tryptophan he has never seen before in all his years. He said it's all very serendipitous. That sounds so nice doesn't it. Reminds me of a Lifetime movie. Not sure who I want to play me but I want Sean Connery to play Mike. Just a few days ago Dr. Shoffner received a call from a friend of his who is a specialist in Boston. He asked Dr. Shoffner if he had ever seen a patient with this tryptophan problem. Dr. Shoffner said yes just a few weeks ago. Again he said very serendipitous. While they sit intrigued we sit in shock, I think. I think that's one of the feelings I am feeling now. Several times throughout our meeting he said I hope I am getting my point across about how extremely rare this is. He said you are an extremely rare family. OK you know I am perfectly fine with common. A common cold, common symptoms, common anything.
He asked us what led us to have more children after Mary Elizabeth. Mike explained to him that we wanted more children and there was no reason not to. No one had ever made us aware of a reason not to have more children. I went on to tell him that we were told Mary Elizabeth's mitochondrial disease was a sporadic mutation. I realize that a lot of people think we are crazy for having more children after the first one. There are some people that wouldn't have. Then we went on to tell him that when Michala was diagnosed with Aicardi syndrome we were told that it didn't happen more than once in a family. Plus my wonderful friend MaryEllen said we had to have another child. Then Marlee Anne is born and we thought WOW we can have a typical child that is healthy. Why not have another one? Right? OK ya'll don't have to answer that. I know and have been told by some of my closest friends that they thought we had totally lost it when we told them that we were having another baby. He asked if none of the doctors or geneticist we had seen had never told us not to have more children. No we were never told that. However I want to share now that I fully believe everything happens for a reason. I fully trust and believe this children are God's children created perfectly. Maybe not in the medical eyes, maybe not in society's eyes but in the eyes of us and those that love them they are perfect. We did tell him that had we known we would not have had any more children. We would love not to have the medical, financial and emotional burdens that we deal with daily because of their disabilities. I think of our life without them and realize how unfulfilled and empty it would be. It would have been a mistake for us to take all that into our own hands. So here we sit with our extremely rare family. LOL!!!
OK if you have gotten that far please continue to read this or come back to it at a later time. It is really quite humorous and the reason that Kim & Kendra will never again call us and ask how our appt went. I threw up on them with all of this within a matter of minutes. I was so hoping that would help me process it. Laughing now but don't expect that tomorrow or don't be surprised when it hits me & I am crying about it all.
Well they had just moved into a new office and today was the first time they were seeing patients there. It's a great location, great set up, very nice, clean, comfortable and welcoming. Yes I realize we were going to a doctor office and I am not sure what I just described. We walk in and Dr. Shoffner calls us right back. He goes over everything with us, checks Abe out and we go out to wait for the labs. Michala gets called back first. Carla is the phlebotomist and is wonderful! Last time she took blood from Mike & I and neither one of us felt it. Well that's not Michala's problem. Michala's problem is that she hates to be held down ever since she was held down for chemotherapy access. So Mike takes her back. While she is screaming in the back, yes we can hear it all the way to the front of the building. I bet their neighbors are thinking WHAT just moved in next door. Any way while she is having blood drawn I bag Abe to get his urine. The diaper I take off is soaked so I think it will be a little while before he goes. As soon as I get the bag on he goes so much that it overflows the bag and gets his pants wet. I didn't even have a change of clothes for him. I just lose it right there. I start laughing hysterically. I know the mom is thinking oh my I am about to see a real live nervous breakdown right here and now. Good thing is that mom probably wouldn't think anything of it. I pick him Abe and head to the lab to get a specimen cup. I go to the next room and get the urine from the bag in the cup. Then I am thinking ok I need to get this back to the lab, clean Abe up, clean me up and the room we were just in. I walk back to the lab and Michala is still screaming, flailing about, grabbing Mike, pink tape all around one arm & really giving Carla fits. Give Carla the urine and go to get the room cleaned up. Mo sees me and says no she will get it.
I get back out to the waiting area and sit down on the verge of tears. I just know something is going to trigger it. I had already cried a little when we were in with Dr. Shoffner. As I was sitting there holding Abe while Mary Elizabeth is singing and laughing. Yes she knows nothing is going to happen to her today and she is so very happy. In walks a couple with a special needs child in a wheelchair. The mom sits down and goes oh my look at that double wheelchair I have never seen one of those before. LOL!!! We are used to looks and stares from most people but from them. No I am only joking she was very intrigued by it. Mo even asked if she could bring a mom to see it.
Mike walks out and his neck is bleeding from Michala clawing him while he tried to hold her down for blood work. He said good thing she battled cancer when she was young cause going through chemo now would be really rough. Mo comes out with scratches all over her too I think. She looks at me and says you ok. I honestly say no, no I am not. She says you want some water. Well I crack up. I said Mo water is not gonna do it. She laughs and still hands me some water.
Michala is grabbing at her arms. Yes arms. Carla had to stick her 3 times to get all the blood they needed. Michala kept getting mad and tensing up and she would blow the vein. Mary Elizabeth is still laughing like na na na boo boo and singing to the top of her lungs. Mike said I am taking these two out to the van. Marlee Anne waits with me.
In a little while Carla calls us back for Abe's labs. As she is prepping Abe she says now this is Marlee Anne. I said yes. Marlee Anne goes why. She said well I need to get blood from you too. Well Marlee Anne's face goes white. I really think she is about to pass out. Then she starts sobbing. I mean boo hooing. We get Abe's blood drawn all the while Marlee Anne is crying and trying to figure out a way to get out of this. My phone was in the bag when Mike took the girls out. I can't even call him or send a message to ask everyone to pray for her. I just pray harder with her.
When Carla gets done with Abe she tells Marlee Anne she needs her to give her a sample in the cup. Marlee Anne jumps up and says oh I can do that I need to go. Well we go to the restroom and Marlee Anne does a great job. I am about to bust but remember Mike took the girls out and I have nothing for Abe to be in. I ask Marlee Anne to hold him. She tries but he is too heavy. As I sit on the potty holding Abe, Marlee Anne says you should have taken us out to sit in there chair right out there. The mind of a child. She was so right. Instead I am holding Abe while I potty. I finally get my pants pulled up but Marlee Anne has to zip them. Wash up, grab a paper towel to get the specimen cup and head out. As soon as we walk out the door Mo is there and says oh ya'll still here. I give her the look and say don't even go there.
We go back in and Marlee Anne sits down like such a big girl. She did an amazing job. One stick and she gets 3 vials filled up. She bleeds really fast like her daddy. I was so incredibly proud of her. She was so excited to show her daddy her smiley face bandage. Didn't even get a picture of her first time giving blood.Still not too sure she will be a blood donor. She said that if it will help other people she will do it.
Our plans were to go have a nice supper before heading home. Well the screaming, crying, laughing and the seizures changed those plans. Mike did stop by Cheesecake Factory for take out cheesecake and coffee. YUM!!!
We get home and I get my H1N1 vaccination. Everyone had already gotten theirs so I was glad to get mine out of the way. OK as if all that wasn't enough for one day I remove a child proof outlet cover and blue sparks fly. Then the TV, TIVO and Abe's feeding pump stop. Mike checks the fuse box and nothing is tripped. I put the cover back on and everything comes back on. Not the way that should happen. We get in touch with Uncle Roy and he says do not use that outlet tonight. WHAT? NO TIVO? That's one of my things in life that I would have to try very hard to replace right away if something happened to it. I only have about 5 "things" that are that way and that's one big one. So Mike brings in a HUGE orange extension cord and runs everything into that. LIFE! Sometimes you just got to laugh about it.
If ya'll made it this far through these heart ramblings of mine then thank you. Thank you for trying to understand and walk this journey with us. Thanks for your continued prayers and support.
With love & gratefulness
Kelli
mommie 2 4 incredibly rare and beautiful angels
married to an extremely rare angel (I truly mean that)
Saturday, October 31, 2009
Our Disney vinyl decal
Maria from the Disboards designed this for a t-shirt for us a few years back. I converted the file so that I could cut it to put on our van. I love it! Thanks Maria!
Monday, October 05, 2009
answered prayers!!!
Just thought ya'll might like to see evidence of your prayers being answered. Today we got the wheelchairs in. They are WONDERFUL!!! We still haven't put them in the van yet but Mike measured and we think they will go in OK. In other words we think we can make them fit. We are going to wait until it dries up some.
Just wanted to share some pictures with ya'll. Everyone seems to like them very well. They push really good & fold up really easily. Everything seperate is not too heavy. The double one is heavy to lift with both seats on it but I wouldn't do that by myself any way too often.
This is such a God thing from the way it happened. I received the email from the Mito listserv while sitting in Dr. Shoffner's office. That same week we were already scheduled to meet with David from Mobility Designs about their wheelchairs. I sent the email to Lynda right then. Had I not known about this we would have ordered something totally different. I cannot thank David and Lynda enough for the work they did to get these. I cannot thank the person from the Mito list that sent this out. This is the first tandem they had done. Terry brought them out. He and Lynda both were as excited as I was.
Thanks again for all your prayers!!!
Just wanted to share some pictures with ya'll. Everyone seems to like them very well. They push really good & fold up really easily. Everything seperate is not too heavy. The double one is heavy to lift with both seats on it but I wouldn't do that by myself any way too often.
This is such a God thing from the way it happened. I received the email from the Mito listserv while sitting in Dr. Shoffner's office. That same week we were already scheduled to meet with David from Mobility Designs about their wheelchairs. I sent the email to Lynda right then. Had I not known about this we would have ordered something totally different. I cannot thank David and Lynda enough for the work they did to get these. I cannot thank the person from the Mito list that sent this out. This is the first tandem they had done. Terry brought them out. He and Lynda both were as excited as I was.
Thanks again for all your prayers!!!
Tuesday, September 29, 2009
MOPS
Well this morning I had the honor of speaking at the Mother of Preschoolers group. It was held at Hebron and I didn't realize it was going to hit me as hard when I drove in the parking lot. The last time I was there was for Terri's funeral. I spent sometime in the car praying before I walked in and a wonderful peace flowed over me. There were about 40 beautiful moms there. I was welcomed and was very excited to be there. I only knew 2 moms there so it was nice to meet so many new people. It was so very wonderful to see Kimberly and Ida.
I have really been praying about this. Kimberly asked me to speak on how being a mother changed me. WOW!!! Someone wanted me to talk about my children. Well ok then. I jumped at the chance to do that. However as I read and prayed about this nothing felt right. No direction I went in. I didn't have a clear direction even this morning. What I had intended to share went right out the window. It was not me talking. I wish I had recorded it because I don't even know if I said any uhs. That's amazing for me. I only cried a couple of VERY brief moments and for me they weren't really cries. Talk about prayers working. They did!
I truly hope that I blessed someone's life this morning the way these moms blessed mine. I was thrilled with the ladies that came up and spoke to me afterwards. Tracy told me about her 2 children and 2 foster children she has. Jennifer told me about her brother who has something very similar to Michala. She also told me about her daughter that has spina bifida. I met Erin before the meeting and she gave me a much needed peace as she shared her story with me.
One of the mentors just hugged me and thanked me for coming. She said I just opened my heart and shared so beautifully. Kimberly I don't know her name but she was sitting at your table. I told her that I had so much I wanted to share but wasn't sure what to choose. She said well God showed you because it was perfect. She went on to tell me not to rethink it and go on about it but to know it was right. WOW! How did she know I needed to hear that or otherwise I was going to go back and rethink it.
Even one of the moms Ashley gave me directions back to Snellville. Which by the way were great directions and I made it there just fine. They were all very nice. They are blessed to have such a wonderful group. Thank you to each of you for welcoming me and allowing me to come and speak. Thanks so much for the wonderful Chili's giftcard. Can ya'll believe I won a door prize. How cool is that!!!
I cannot thank each of you for holding me up and lifting me up in prayer. Several of you commented that if I talk the way I write I would be fine. Well I don't. When I write I can pour my heart and soul into it and cry if I need to. When I talk it doesn't flow quite as well. I was very blessed to have the opportunity to share how God has carried us through 24 years. Thanks to each of ya'll for being there through so much of it!!!
I have really been praying about this. Kimberly asked me to speak on how being a mother changed me. WOW!!! Someone wanted me to talk about my children. Well ok then. I jumped at the chance to do that. However as I read and prayed about this nothing felt right. No direction I went in. I didn't have a clear direction even this morning. What I had intended to share went right out the window. It was not me talking. I wish I had recorded it because I don't even know if I said any uhs. That's amazing for me. I only cried a couple of VERY brief moments and for me they weren't really cries. Talk about prayers working. They did!
I truly hope that I blessed someone's life this morning the way these moms blessed mine. I was thrilled with the ladies that came up and spoke to me afterwards. Tracy told me about her 2 children and 2 foster children she has. Jennifer told me about her brother who has something very similar to Michala. She also told me about her daughter that has spina bifida. I met Erin before the meeting and she gave me a much needed peace as she shared her story with me.
One of the mentors just hugged me and thanked me for coming. She said I just opened my heart and shared so beautifully. Kimberly I don't know her name but she was sitting at your table. I told her that I had so much I wanted to share but wasn't sure what to choose. She said well God showed you because it was perfect. She went on to tell me not to rethink it and go on about it but to know it was right. WOW! How did she know I needed to hear that or otherwise I was going to go back and rethink it.
Even one of the moms Ashley gave me directions back to Snellville. Which by the way were great directions and I made it there just fine. They were all very nice. They are blessed to have such a wonderful group. Thank you to each of you for welcoming me and allowing me to come and speak. Thanks so much for the wonderful Chili's giftcard. Can ya'll believe I won a door prize. How cool is that!!!
I cannot thank each of you for holding me up and lifting me up in prayer. Several of you commented that if I talk the way I write I would be fine. Well I don't. When I write I can pour my heart and soul into it and cry if I need to. When I talk it doesn't flow quite as well. I was very blessed to have the opportunity to share how God has carried us through 24 years. Thanks to each of ya'll for being there through so much of it!!!
Monday, September 28, 2009
Catching up!
OK this is the very reason I journal every night. If not I get behind and forget things that I wanted to remember or share. I have to go back a couple of weeks.
OK ya'll remember me telling ya'll that my friend took me to supper a couple of weeks ago. Well Sandy and I have been friends since the first day of our freshman year of highschool. Yes almost 30 years. YIKES!!! That's a long time to know me and still love me. LOL!!! We had a wonderful time! She took me out to get my birthday celebration started. Get it started it did. I don't think it has ended yet. Wonder how long I can play the birthday card?
That week we had a couple of appts that I think I filled ya'll in on. Now I will try to catch you up on the other fun stuff.
Saturday I had the Quiet Heroes luncheon. I know I say it every year but seriously one year I am getting a table so that everyone can go with me. None of my friends and family have ever gone with me but at $125 it is kind of hard to invite someone and expect them to pay that amount. Once I get there it's great because all other cancer moms are there and so many of them are my precious dear friends that I love so dearly.
The luncheon was amazing as always. They had some wonderful auction items. The food was very good. The speaker had us all in tears. Our goody bags were overflowing with terrific goodies.
That night Mike cooked my favorite steak on the grill, along with baked potato, mushrooms and salad. It was wonderful! Sunday was my actual birthday so I got to choose where I wanted to eat. Any doubt where I chose? Hendersons! My all time favorite. This is my comfort place. I eat that before and after surgeries or hospital stays. It was so very good! Sunday night our friends came over to eat with us.
Monday I was getting ready to go speak at the MOPS group. Which was rescheduled for tomorrow because of the floods. So would ya'll please pray for me tomorrow morning as I go speak. Please pray that God provides me with the words and peace that I need. Please pray that I get self out of the way so that I can be used by HIM. Thanks so much!!!
Wednesday we took Michala & Abe to the doctor on Wednesday. Mo increased their VNSs and Abe had to get blood work. Oh yes and I had to take the urine samples that I had such a hard time getting from Michala! YIKES!!!
I was concerned about Carla, the person taking Abe's blood because she was taking such a long time deciding where to go. Most times that's a good thing but she seemed very nervous and unsure of herself. Well he didn't even flinch when she stuck him. He had been having lots of seizures and I was thinking that was probably why. Well she took 40 ccs of blood from him. He flowed well and she only had to stick him once! woohoo!!! They both did an awesome job. We were getting ready to walk out of the office and Carla came out and said mom I need to get blood from you and dad. WHAT? Yes I know my children do this all the time but I don't & I do not like it. Mike gives blood all the time so to him it wasn't a big deal. I was so thankful I didn't know about this ahead of time.
I went first and she said deep breath. I knew right away why Abe didn't flinch. It didn't hurt at all. You could not feel it. Amazing! Well Mike came in the lab. He had kept Michala out in the waiting area the whole time so she wouldn't bother Abe. Well when Mike sat down and saw how nervous and unsure she seemed I could see that look on his face. He was also amazed at not feeling it. She really was wonderful!
Wednesday night my wonderful neice and one of my nephews along with their families and my sister brought supper over to celebrate my birthday. I got to pick! It was Wednesday night so ya'll know I picked Hendersons. It was so good!!! I played the birthday card quite a bit that night. I got to feed Karland and hold her all that I wanted to. Usually I don't get to if Debbie and Staci are around.
Thursday we packed and headed to the beach as soon as Mike got off work. The ride was very nice.
Since Christmas I have been saving for an embroidery machine. With my birthday money I think I may be close to getting one. I have been talking to friends that have them and one of my friends has called around and done a lot of checking for me. If any of you have one and have thoughts are advice on it I would greatly appreciate it. I am so excited about getting it but want to make sure I get the right one.
OK now I want to know which one of my wonderful Aicardi mom friends sent the word out to get me all the wonderful cards & gifts that I have been receiving. They are still coming in the mail. I am blown away by ya'll's love and generousity. What a wonderful birthday celebration this has been! I am so very thankful for all of ya'll.
I am truly blessed with a wonderful family and beautiful friends. Thanks so much for making me feel so special and so loved!
OK ya'll remember me telling ya'll that my friend took me to supper a couple of weeks ago. Well Sandy and I have been friends since the first day of our freshman year of highschool. Yes almost 30 years. YIKES!!! That's a long time to know me and still love me. LOL!!! We had a wonderful time! She took me out to get my birthday celebration started. Get it started it did. I don't think it has ended yet. Wonder how long I can play the birthday card?
That week we had a couple of appts that I think I filled ya'll in on. Now I will try to catch you up on the other fun stuff.
Saturday I had the Quiet Heroes luncheon. I know I say it every year but seriously one year I am getting a table so that everyone can go with me. None of my friends and family have ever gone with me but at $125 it is kind of hard to invite someone and expect them to pay that amount. Once I get there it's great because all other cancer moms are there and so many of them are my precious dear friends that I love so dearly.
The luncheon was amazing as always. They had some wonderful auction items. The food was very good. The speaker had us all in tears. Our goody bags were overflowing with terrific goodies.
That night Mike cooked my favorite steak on the grill, along with baked potato, mushrooms and salad. It was wonderful! Sunday was my actual birthday so I got to choose where I wanted to eat. Any doubt where I chose? Hendersons! My all time favorite. This is my comfort place. I eat that before and after surgeries or hospital stays. It was so very good! Sunday night our friends came over to eat with us.
Monday I was getting ready to go speak at the MOPS group. Which was rescheduled for tomorrow because of the floods. So would ya'll please pray for me tomorrow morning as I go speak. Please pray that God provides me with the words and peace that I need. Please pray that I get self out of the way so that I can be used by HIM. Thanks so much!!!
Wednesday we took Michala & Abe to the doctor on Wednesday. Mo increased their VNSs and Abe had to get blood work. Oh yes and I had to take the urine samples that I had such a hard time getting from Michala! YIKES!!!
I was concerned about Carla, the person taking Abe's blood because she was taking such a long time deciding where to go. Most times that's a good thing but she seemed very nervous and unsure of herself. Well he didn't even flinch when she stuck him. He had been having lots of seizures and I was thinking that was probably why. Well she took 40 ccs of blood from him. He flowed well and she only had to stick him once! woohoo!!! They both did an awesome job. We were getting ready to walk out of the office and Carla came out and said mom I need to get blood from you and dad. WHAT? Yes I know my children do this all the time but I don't & I do not like it. Mike gives blood all the time so to him it wasn't a big deal. I was so thankful I didn't know about this ahead of time.
I went first and she said deep breath. I knew right away why Abe didn't flinch. It didn't hurt at all. You could not feel it. Amazing! Well Mike came in the lab. He had kept Michala out in the waiting area the whole time so she wouldn't bother Abe. Well when Mike sat down and saw how nervous and unsure she seemed I could see that look on his face. He was also amazed at not feeling it. She really was wonderful!
Wednesday night my wonderful neice and one of my nephews along with their families and my sister brought supper over to celebrate my birthday. I got to pick! It was Wednesday night so ya'll know I picked Hendersons. It was so good!!! I played the birthday card quite a bit that night. I got to feed Karland and hold her all that I wanted to. Usually I don't get to if Debbie and Staci are around.
Thursday we packed and headed to the beach as soon as Mike got off work. The ride was very nice.
Since Christmas I have been saving for an embroidery machine. With my birthday money I think I may be close to getting one. I have been talking to friends that have them and one of my friends has called around and done a lot of checking for me. If any of you have one and have thoughts are advice on it I would greatly appreciate it. I am so excited about getting it but want to make sure I get the right one.
OK now I want to know which one of my wonderful Aicardi mom friends sent the word out to get me all the wonderful cards & gifts that I have been receiving. They are still coming in the mail. I am blown away by ya'll's love and generousity. What a wonderful birthday celebration this has been! I am so very thankful for all of ya'll.
I am truly blessed with a wonderful family and beautiful friends. Thanks so much for making me feel so special and so loved!
Our beach trip!
WOW! WOW! WOW!!! We just got back last night from an amazing weekend at the beach thanks to some wonderful friends of ours. I have to admit this was a selfish trip for me. I LOVE LOVE LOVE the beach. I grew up going to the beach every summer. I have wonderful memories of the beach with my family. We stayed at the same place every year. We even stayed through a hurricane (someone will have to remind me of which one it was) when the beach was evacuated because mama & daddy were friends with the owners. Mama is still intrigued by hurricanes.
I remember loving the beach and the ocean. I remember those times with my daddy so well. So this weekend it made me even more thankful for Marlee Anne to make those memories with Mike and I. There was not handicap accessibility to the beach where we were so Mike & I traded off and spent time on the beach with Marlee Anne. Everyone else seemed to enjoy there time in the condo. Maybe with the exception of Michala. My brother seems to think it was because she didn't have all her toys. To help our neighbors at the beach continue to enjoy their vacation we chose to leave Michala's drum at home. Didn't make for a happy camper in Michala though. This trip did remind me why we started going to Disney. Everyone can enjoy it all together as a family.
The beach and the ocean were beautiful! My ideal time at the beach is to get up around 7, make a pot of coffee, take my chair, book and coffee to the beach and enjoy several hours. Well Friday morning at 7 Marlee Anne is wide awake and ready to go. I sighed and thought there goes MY time. How VERY selfish is that?! However when I got to the beach tears welled up in my eyes and the joy I felt was unreal. Here I am with my anything but "typical" daughter enjoying the sand & sun.
OK bear with me here. We were the only ones on the beach that early playing in the sand. The others were out walking, running or riding bikes. Some were walking their dogs. Soon people started to come out and more and more families appeared. Once again I was reminded of our different family. Here I am on the beach with Marlee Anne while Mike is in the room with our other three children. Please understand I am not complaining, I am not asking for it to be different, I am only saying even here in this perfect setting that God created it's still not right. I would have loved to have had a family picture on the beach but there was no way to get all of us out there. Some of you understand those feelings and can relate, others try to, thankfully God has blessed me with a man that not only understands and relates but also puts me back on the road of joy that I should be on.
So thankful for the time with Marlee Anne. I love having indepth conversations with her about God and why He created this and that. Usually these conversations are always started by my deep thinking girl. We had fun covering each other up in the sand, jumping the waves, finding seashells and building sand castles. I think I better practice before next time because I was quickly informed that Mike builds better sand castles than me. Imagine that!
We had 2 full days of fun like that. Mike even got treated to a round of golf which he really enjoyed. We ate some delicious seafood. Just the change of scenery, beautiful at that!, really helps to rejuvenate you. I am thinking Michala & Abe's seizures were a little better and we should probably consider moving to the beach or at least giving them a break at the beach at least once a month.
Our last day there Marlee Anne decided she didn't want to go to the beach. So off I go with my book, coffee, & chair. OK 2 hours of that and I was ready to take on the world. Seriously I do not know what it is about the ocean and the soothing powers it has to the soul. It truly does though. Once again a reminder that God thought it all through. Whether I think it or not or possibly sometimes question or doubt, it is all perfect in His sight. He makes no mistakes!
I remember loving the beach and the ocean. I remember those times with my daddy so well. So this weekend it made me even more thankful for Marlee Anne to make those memories with Mike and I. There was not handicap accessibility to the beach where we were so Mike & I traded off and spent time on the beach with Marlee Anne. Everyone else seemed to enjoy there time in the condo. Maybe with the exception of Michala. My brother seems to think it was because she didn't have all her toys. To help our neighbors at the beach continue to enjoy their vacation we chose to leave Michala's drum at home. Didn't make for a happy camper in Michala though. This trip did remind me why we started going to Disney. Everyone can enjoy it all together as a family.
The beach and the ocean were beautiful! My ideal time at the beach is to get up around 7, make a pot of coffee, take my chair, book and coffee to the beach and enjoy several hours. Well Friday morning at 7 Marlee Anne is wide awake and ready to go. I sighed and thought there goes MY time. How VERY selfish is that?! However when I got to the beach tears welled up in my eyes and the joy I felt was unreal. Here I am with my anything but "typical" daughter enjoying the sand & sun.
OK bear with me here. We were the only ones on the beach that early playing in the sand. The others were out walking, running or riding bikes. Some were walking their dogs. Soon people started to come out and more and more families appeared. Once again I was reminded of our different family. Here I am on the beach with Marlee Anne while Mike is in the room with our other three children. Please understand I am not complaining, I am not asking for it to be different, I am only saying even here in this perfect setting that God created it's still not right. I would have loved to have had a family picture on the beach but there was no way to get all of us out there. Some of you understand those feelings and can relate, others try to, thankfully God has blessed me with a man that not only understands and relates but also puts me back on the road of joy that I should be on.
So thankful for the time with Marlee Anne. I love having indepth conversations with her about God and why He created this and that. Usually these conversations are always started by my deep thinking girl. We had fun covering each other up in the sand, jumping the waves, finding seashells and building sand castles. I think I better practice before next time because I was quickly informed that Mike builds better sand castles than me. Imagine that!
We had 2 full days of fun like that. Mike even got treated to a round of golf which he really enjoyed. We ate some delicious seafood. Just the change of scenery, beautiful at that!, really helps to rejuvenate you. I am thinking Michala & Abe's seizures were a little better and we should probably consider moving to the beach or at least giving them a break at the beach at least once a month.
Our last day there Marlee Anne decided she didn't want to go to the beach. So off I go with my book, coffee, & chair. OK 2 hours of that and I was ready to take on the world. Seriously I do not know what it is about the ocean and the soothing powers it has to the soul. It truly does though. Once again a reminder that God thought it all through. Whether I think it or not or possibly sometimes question or doubt, it is all perfect in His sight. He makes no mistakes!
Monday, September 21, 2009
Mary Elizabeth & Abe endocrine appt
Wednesday we took Mary Elizabeth & Abe for their endocrinology appts. We took Michala & Marlee Anne with us too. When we got there the waiting room was packed. We tried to get them in the corner away from everyone.
As I was waiting for them to call me to check them in I heard patients being called back to see Dr. Parks. Even though we weren't seeing him that day because I thought he had already retired I was so glad he was there. As we were waiting for vitals to be done I heard Mike say hey Dr. Parks. I was so excited to see him. When Mary Elizabeth saw him she got so excited. He kissed and hugged her and she got the biggest grin on her face. I got to quickly go over some things we were questioning since test were starting to come back. He said he would sit down and go over all that.
The appt went Megan for Mary Elizabeth was quick and easy. She did have to have lab work done though. Abe's appt was longer and Megan went over all the what if's. One thing they are thinking is the possibility of diabetes insipidus. Not to be confused with sugar diabetes. Diabetes insipidus is a condition in which the kidneys are unable to conserve water. However typically your sodium levels in your urine are high and they are not in Abe. Hopefully it's not something he has. If he does it may be something that he is controlling on his own right now. He didn't have lab work done because he and Michala have to go Wednesday to the metabolic specialist. Abe for more labs and both of them for VNS check.
Many of you have asked about their VNS. We have had some times where it has interrupted, slowed down and a couple of times where it has stopped their seizures.
I took Mary Elizabeth to have her lab work done while the rest of them went out. I prayed and prayed for someone that could stick her the first time. NEVER happens. We have to do at least 3 sticks. First time, first try. This lady was amazing!!! I started crying and told her I needed her name and phone number so we could make sure she was there everytime. She was precious!
Mary Elizabeth's thyroid came back low so we increased her synthroid. Thank ya'll so much for all the prayers!!!
As I was waiting for them to call me to check them in I heard patients being called back to see Dr. Parks. Even though we weren't seeing him that day because I thought he had already retired I was so glad he was there. As we were waiting for vitals to be done I heard Mike say hey Dr. Parks. I was so excited to see him. When Mary Elizabeth saw him she got so excited. He kissed and hugged her and she got the biggest grin on her face. I got to quickly go over some things we were questioning since test were starting to come back. He said he would sit down and go over all that.
The appt went Megan for Mary Elizabeth was quick and easy. She did have to have lab work done though. Abe's appt was longer and Megan went over all the what if's. One thing they are thinking is the possibility of diabetes insipidus. Not to be confused with sugar diabetes. Diabetes insipidus is a condition in which the kidneys are unable to conserve water. However typically your sodium levels in your urine are high and they are not in Abe. Hopefully it's not something he has. If he does it may be something that he is controlling on his own right now. He didn't have lab work done because he and Michala have to go Wednesday to the metabolic specialist. Abe for more labs and both of them for VNS check.
Many of you have asked about their VNS. We have had some times where it has interrupted, slowed down and a couple of times where it has stopped their seizures.
I took Mary Elizabeth to have her lab work done while the rest of them went out. I prayed and prayed for someone that could stick her the first time. NEVER happens. We have to do at least 3 sticks. First time, first try. This lady was amazing!!! I started crying and told her I needed her name and phone number so we could make sure she was there everytime. She was precious!
Mary Elizabeth's thyroid came back low so we increased her synthroid. Thank ya'll so much for all the prayers!!!
Tuesday, September 15, 2009
Life
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!!!
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!!!
Tuesday, September 01, 2009
Save Water Newton PSA
For those of you that don't have our local tv station I thought you might want to watch Mike's commercials for www.savewaternewton.com . Yes I am proud!!!
http://www.youtube.com/watch?v=YXgykARZHZ8&feature=channel_page
http://www.youtube.com/watch?v=Em11wEHU8SI&feature=channel
http://www.youtube.com/watch?v=l_TMFx6YQRw&feature=channel_page
http://www.youtube.com/watch?v=lMZwxBxe2bg&feature=channel_page
http://www.youtube.com/watch?v=Kch5yengPdk&feature=channel_page
http://www.youtube.com/watch?v=D_csD5y0tpE&feature=channel_page
http://www.youtube.com/watch?v=agyEbjXyieM&feature=channel_page
http://www.youtube.com/watch?v=YXgykARZHZ8&feature=channel_page
http://www.youtube.com/watch?v=Em11wEHU8SI&feature=channel
http://www.youtube.com/watch?v=l_TMFx6YQRw&feature=channel_page
http://www.youtube.com/watch?v=lMZwxBxe2bg&feature=channel_page
http://www.youtube.com/watch?v=Kch5yengPdk&feature=channel_page
http://www.youtube.com/watch?v=D_csD5y0tpE&feature=channel_page
http://www.youtube.com/watch?v=agyEbjXyieM&feature=channel_page
Memories!
Saturday was the 10 year anniversary of my brother Tommy's angel day. It really hit me a lot harder than I expected it to. I had already planned a day with friends in hopes of staying busy. Busy I stayed. I even learned to make a crocheted dish cloth. Ya'll better watch out!!!
Throughout the day a memory would hit me so very hard. I remember one of the hardest times of my life was when he moved to Florida. I thought I would literally die. I missed him so very much. Little did I know what truly missing someone was all about.
I hear his voice in my head and it's like he is right here with me. I can can feel him hug me and my heart hurts. I long for him to know my children cause he would love them so very much! He would surely be competing with my brother Bryant to see who could come and see them the most.
One example for you to know how very much he loved me and loved my children happened right after Michala was diagnosed with cancer. He had just gotten the motorcycle he had always dreamed of. It meant so very much to him and he was so very proud of it. Then Michala was diagnosed. He told my mom he wanted to sale his motorcycle and give us the money to help pay for her medical bills. She told him absolutely not because I would be very upset if he did that and be very sad that he had given it up. The next year we had Michala's celebration of life service and that was the last time I saw him. He died the next weekend.
I still hear him and see him in the spitting image that his son Dylan is of him. I still know his sweet caring heart in his dear daughter Shelby. I am so very thankful his legacy lives on through them. Thanks ya'll for making him proud!
This is one of those things in life that I still don't understand. The only thing I can see is that God needed an exceptional angel there with Him because Tommy was definitely that.
Thank you so much for the words of comfort and prayers that some of you extended to me on Saturday. They meant so very much. Thanks to those of you that asked about him and wanted to hear my stories and memories of him. It was so nice to share with ya'll.
I hope that each of you continue to make wonderful memories to hold on to with your family & friends. I have attached one of my favorite pictures of Tommy. He is fishing with his daughter Shelby.
Throughout the day a memory would hit me so very hard. I remember one of the hardest times of my life was when he moved to Florida. I thought I would literally die. I missed him so very much. Little did I know what truly missing someone was all about.
I hear his voice in my head and it's like he is right here with me. I can can feel him hug me and my heart hurts. I long for him to know my children cause he would love them so very much! He would surely be competing with my brother Bryant to see who could come and see them the most.
One example for you to know how very much he loved me and loved my children happened right after Michala was diagnosed with cancer. He had just gotten the motorcycle he had always dreamed of. It meant so very much to him and he was so very proud of it. Then Michala was diagnosed. He told my mom he wanted to sale his motorcycle and give us the money to help pay for her medical bills. She told him absolutely not because I would be very upset if he did that and be very sad that he had given it up. The next year we had Michala's celebration of life service and that was the last time I saw him. He died the next weekend.
I still hear him and see him in the spitting image that his son Dylan is of him. I still know his sweet caring heart in his dear daughter Shelby. I am so very thankful his legacy lives on through them. Thanks ya'll for making him proud!
This is one of those things in life that I still don't understand. The only thing I can see is that God needed an exceptional angel there with Him because Tommy was definitely that.
Thank you so much for the words of comfort and prayers that some of you extended to me on Saturday. They meant so very much. Thanks to those of you that asked about him and wanted to hear my stories and memories of him. It was so nice to share with ya'll.
I hope that each of you continue to make wonderful memories to hold on to with your family & friends. I have attached one of my favorite pictures of Tommy. He is fishing with his daughter Shelby.
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