Tuesday, December 16, 2008

Our little teacher

I am combining this post with a quick update. Sunday Abe started having some really hard screaming seizures again. We knew there was a front coming in and thought maybe that was it. He has had a really rough few days. We are still decreasing his orapred so we can have him on a lower dose for surgery. We just increased his phenobarbital in hopes that that would help with the increase in seizures. That will take a couple of days to see a difference cause it's a very small increase. We have had to give him ativan a lot more than we would like so he is pretty drugged out once again. He is awake having seizures or out of it from the meds. Please pray for us to get past this soon.

Today Marlee Anne went to Fairview Elementary to teach Lori's 5th grade class how to make Flubber. She was so very excited! I know I am her mom but I really think she did a great job. I just knew she would get in there, see the older kids and freeze up. She didn't. I was really very proud of her. More than that I was so very proud of Lori. I had to hold back tears as I stood and watch this little girl teach. No longer is she that little girl. She has turned into an amazing woman that I am so very very proud of. She handles her class so very well. The are blessed to have them as her teacher. Before we left the class wanted to know if Marlee Anne could come back again. She talked about the class the whole way home and wondered when she would get to go back. She has made a class room full of friends that she is already talking about writing letters to, drawing pictures for them, making things for them and sending them things. Thanks Mrs. Wardingley for giving her the opportunity to do this!!! We love you!!!

On the way home for her treat I stopped by Taco Bell. For my just because I never do it treat I bought myself Mamma Mia!!! OH MY!!! I love that movie!!! I have already watched it once today. If I can get away with it I may watch it again tonight. Connie & Cheryl took me to the movie to see it and I have been anxiously awaiting it on DVD. WOO HOO!!!

Mike surprised Marlee Anne with Twister for doing such a good job teaching. They played each other and I played the winner which of course was Marlee Anne. Thankfully she was worn out so I beat her. Our house was filled with laughter. Even Mary Elizabeth and Michala enjoyed it. Mike won't let me share those pictures with ya'll. They will make a fun scrapbook page though.

Prayers for Gregory

Would ya'll please pray for Gregory Jackson. His dentist found a tumor in his gum and they are sending him to Emory. He is the 16 year old son of Greg and Barbara Jackson. Barbara works with Mike. She always emails me to tell me she is praying or just to say she loves us. She is a very special lady. She and Greg even came and sat with me while Abe was in the NICU. Please pray for complete healing for Gregory. He is a great teenager. Always willing to lend a hand whenever he is needed. Pray for his parents as they wait for more information. We know that God has the power to heal and we believe that Gregory will be healed and this tumor will go away. Thanks for standing with us in prayer for this precious family!

Sunday, December 14, 2008

What a weekend!

I have to go back and start at Thursday night. I went with Amber and Tonya to the tour of homes. I felt like a little kid excited about going to see Santa Claus when they asked me to go. I had the best time walking in the rain and seeing all the beautiful houses. Afterwards Amber treated us to Applebees. It was so much fun to sit with them and have a meal together. The funny thing was that they had fixed supper for us that same night and then took me out to eat. LOL!!!

Friday during the day ya'll have already heard about so I will skip that. Well except for the fact that we were surprised by our dear friend bringing us a beautiful paper white narcisis. We are anxiously awaiting it to bloom.

Friday night we had the Parent's Night Out fundraiser for the park. OK time out to say that I love all of our Masquerade friends dearly and I miss ya'll!!! As I am typing this the music is playing on the tv and it touches my heart each time and brings back such wonderful memories! Thanks for being such a special part of our lives.

OK on to the fundraiser. Without our friends Tracy and Lee Burgess this would not have happen. They brought their inflatables and set everything up. It was great! I cannot thank them and all the volunteers enough. Without ya'll we could not have done it. The parents that brought their children THANK YOU!!! Please talk this up for next time because I think the kids really had a great time. We would love to do it again and have tons more children.

Saturday I got to go to the Atlanta Merchandise Mart with my friend Lisa. I was thrilled! I haven't been there since before Mary Elizabeth was born. OH MY I was in heaven. Again excited like a little child. Thanks Lisa for a wonderful day!!! Lisa and her friend went on to Cartersville to the festival of trees to see about it being a possible fundraiser for the park next year. My wonderful husband came to Atlanta to pick me up so that I could still go to the mart. I didn't think I could be gone that long. Lisa tells me it was a good thing I didn't go cause it was late when she got in. Still had a wonderful time with her.

Today we had the Camp Sunshine Christmas party which was wonderful as always. It's always so wonderful to see the other families. As I sat there and looked at all these amazing families that have blessed our lives so very much. Their strength has inspired us to push through some challenging times. I love each of them dearly! Julie just walked over and got Abe's tube while he was eating, stood by Mike and helped out. She was not asked to do it she just did it. Kylie came and got Marlee Anne to go see Santa with her. Marlee Anne didn't get her picture made and I asked her why. She said I went just so I could spend the time with Kyle. What beautiful friendships that have come from this horrible "c" word. We are blessed.

Then I sat and cried as our dear friend Molly was recognized as volunteer of the year. She is a very inspiring and encouraging friend who we love dearly. Then of course their is Sally, Tenise, Ann, Michelle, TC and I think we saw Brinsley from a distant, and Bubbles. We could not do this, go through this without their continued love, support and prayers. Amazing!!! Each one of them are just amazing. If I left someone out ya'll are amazing too. LOL!!! We do love ya'll dearly and thank you for all that ya'll do! We had a wonderful time!!!

On the way home we decided to stop to eat for one last year outing. We know that from now until Abe's surgery we will be staying in mostly except for a couple of things we have scheduled all ready. Mike said on the way home he knows why Mary Elizabeth loves Christmas so much. Everytime someone says Merry Christmas she thinks they are saying Mary. She just smiles and laughs. She loved spending time with Santa today and really had a great time all around. Everyone at the party took time to come speak to her and you could tell she was very excited about all that attention. Thanks ya'll!!!

OK well I feel like this email was kinda hyper. Maybe I had too much coffee. I had a wonderful hot cup of tea at the party and a wonderful cup of coffee on the way home. I hope that everyone had a wonderful weekend as well. I pray that each of you find something to be thankful for, something that makes you smile, something that warms your heart this Christmas season.

Friday, December 12, 2008

Abe's appt

For those of you that like facts and figures I wish that's what this email could be. However most of you have known me long enough to know that's not me. It's not in me to be that way. So ya'll are getting the whole assortment of mush.

When Dr. Bhathia walked in I realized right away that we knew her and I had that peace of knowing we were in good hands. Even though we had been told that by two doctors that we admire greatly.

She took the time to go over everything. The g-tube was pretty cut and dry because we know it's the safest thing for him at this time. The ng-tube is not a long time solution especially since he pulls it out at least once a day and I do not enjoy having to put it back in each time.

She didn't hesitate on saying yes to the muscle biopsy. I expressed my concern about him not having enough muscle in one thigh and that they had told us it would probably have to be taking out of both thighs. She said well I will check but I think we can get it out of one.

Next was the discussion of the Nissen/fundo. Since finding out about that we have had several discussions with other mitochondrial families who say if they had it to do again they would not do it. It has created a lot of unneccesary problems for their child with mito. Abe's GI doctor along with Dr. Bhathia did not see significant reason to do this procedure other than the fact that the main times he was having reflux during the ph probe was when he was having a seizure or sleeping. There is concern that because of his low muscle tone he would not be able to clear his airway sufficiently. However since we put him back on the zantac he is doing much better. So we are questioning whether it was the reflux that caused some of the seizures during the ph probe. We know there is a risk of the gtube causing his reflux to get worse but we will face that when the time comes. If that happens we may have to go back and do the fundo.

She was pleased when she did the exam so that was good. When she looked at his thigh she seemed to think she could get it out of just one.

So everything wasn't quite as clear as I would have liked but a lot of that is because I am having a hard time accepting the fact that he even has to have any of this done. I will get past that and face the issues and get everything prepared for surgery day. She wanted to do it December 23rd but I couldn't imagine him spending his first Christmas in the hospital. I couldn't be away from my girls and Mike on Christmas day if I had the choice. His surgery will be January 6th.

We get home and Brooke and Marlee Anne have decided we need to finish decorating atleast one tree. I was just going to let them stay the way they were. In attempt to get me in the mood the Christmas music was on. Their joyous mood didn't transfer to me but they kept trying.

On top of all that we received a beautiful gift from our friends in Nebraska. It had a beautiful travel mug with my favorite scripture on it. Just the reminder I needed today that God is still in control.

Thank you so much for your prayers for today!

Wednesday, December 10, 2008

Abe's results

Abe's CDG results came back negative!!! WOOHOO!!! We are so very glad. It's nice to continue marking things off the list. All of his blood work came back fine. Well the Phenobarbital level the didn't get. Not sure what happened with that because I saw them get it in a purple top. His carnitine level was a little elevated but that's probably because he takes carnitine. Not a significant amount though.

Friday we meet with the surgeon. We have gone back and forth with the Mitochondrial specialist and some of Abe's other doctors as to whether or not we should do the muscle biopsy with his Gtube surgery. The mito doc says that it would be a greater risk to put him to sleep an additional time for the muscle biopsy if he does indeed have a mito disease rather than doing all three surgeries together. We were also told that since he is so small they may have to take muscle from both thighs to be able to get enough. Another reason we are thinking of waiting along with the fact that his other doctors along with us think 3 is a lot for him. We don't know how his body will handle the pain, stress and healing.

We also do not have a clear understanding about whether the fundo is the right thing for him. We have been told that they will do an upper GI first to see if it's appropriate for him to have it.

So prayer request for our appt on Friday. Please pray for clear precise answers from the surgeon. We want a clear direction to go in. Please pray that there will be no question as to what is best for Abe as far as what needs to be done and when. Also before Abe has surgery the dose of his steriod needs to be decreased to help him with healing. We are doing this in VERY small amounts. We started this yesterday. Please pray that we are able to decrease it without an increase in seizures for him.

Thank you so much for your time in joining with us as we pray about this.


So many times in life I think I miss the picture. I get so wrapped up in what's going on that I miss things. I do not like the holidays. It starts at Thanksgiving and gets worse the closer to Christmas. It all started after my daddy died because he loved the holidays so much. He just loved life period and had the biggest most giving heart of anyone I know. Then when my brother died it made it even harder.

Well as time went on each year after Mary Elizabeth was born there were always medical problems around the holidays. We let our guard down and did too many things around people and she got worn down, sick and ended up in the hospital. We have since learned her limits and we are more careful. Each year I have those memories that come flooding back.

Then Michala was born and diagnosed right before Christmas. Her seizures were so very bad that first Christmas. I remember holding her and crying. Then a very significant Christmas was the next year when Michala's leg was amputated. Then of course there is always that fear of the cancer coming back.

Each year all the memories come flooding back. Yes there is Marlee Anne's first Christmas which I loved but it was shadowed by those horrible memories. This year we have Abe having all those awful seizures.

Monday night we had the priviledge of going to Camp Sunshine House for Spa Sydell Night. Marlee Anne said on the way up there let's go to the crib. When I think of crib I think of comfort. The Camp Sunshine House for us is just that - comfort. Some of the moms sitting around talking even hesitated when it was our time (well not me) for our spa service because they were in the middle of talking. We joked (remember Camp Sunshine & Spa Sydell we were only joking) and said they should just have food and let us eat and talk. Well that night along with the wonderful spa treatment I received I received much more than I ever expect.

When I was done with my services I went back to the table where Mike was talking with a teenager named Maria. Maria finished her chemo in July. As she sat in her wheelchair talking with me she taught me so much in those few minutes. She said I love Christmas. I asked her why. She shared that she loved doing things for other people. She loved searching for just the right gift for them. She asked if I liked it. I told her that it was hard for me. I shared about Michala's amputation being around Christmas, Mary Elizabeth's hospital stays and those memories got me down. She say well that's even more reason to celebrate and be happy. WOW!!! A teenager battling cancer overwhelmed me.

Today as I have dealt with Michala and Abe's increased seizures thanks to this beautiful rain I heard Maria's words loud and clear. I am continually amazed by God's love and how he places people in our path to teach us things that He has probably been trying for years to teach me. I am thankful He doesn't give up on me and tries new ways to make me see things.

I hope that this Christmas each of you will remember the reason for the season. I know that many of ours friends are sick, hurting, lost jobs, have heartaches and so much more. I pray that God will give each of you a peace that can only come from Him. A peace to let you know that He is in control.

I love ya'll and I am so very blessed to have you in my life!

Tuesday, December 09, 2008


I just realized I am behind on my post so I am updating now with several post.

Monday, December 08, 2008

Something else

The email I sent out the other day about the lack of faith I think I should address. I do not think I did anything to cause my children's disabilities. I shared that because it had been heavy on my heart for a few days to share that. You never know how it will touch someone. Most emails I received was encouraging me not to feel like it was anything I had done. I don't. There were other emails from other families with special needs children that had been told the samething. That's the reason I shared it. I wanted other families who I was sure had heard the same words or something similar but had not shared it to know they weren't alone. I could write a book filled with stupid things that well meaning people say. Sometimes the words do hurt. Most times I stop and pray before I even open my mouth. I do not want to say something I will regret. I know that people say what they think may comfort someone else. They mean well. So I have forgiven those people and have gone on.

For those of you that have been keeping your children's successes away from us. DON'T. Share that with us. We want to share in your joy. I honestly did not know there were so many people afraid to say something that might hurt us.

You know we have some wonderful internet friends who have special needs children. Most of them are far away in other states or like our friends Kevin and Sara that like to think they are that far away from us and will never get together with us unless we are in another state. LOL!!! I love all those friends. I am thankful they are there to hear my cries, understand my heart and know where I am coming from.

However the majority of our friends here around us have wonderful, happy, wild, joyous and fully capable children. I need that in my life. I love that my nephew called me to tell me that he is going to be a daddy. I wanted to hear it from him. I pray all the time that they have a healthy baby. I love that two of my nieces are friends with me on facebook and I get to know what's going on in their lives. I love to look out the window and see Mackenzie running to Marlee Anne yelling Manu hug me. I love hearing how Grace did playing at one of her games - usually from Grace. I love that Hunter and I can discuss scripture, music or whatever. I love that Kaitlin has jumped right in and fits in Georgia. I love reading Amber's blog of what the boys are doing or into now. I love to hear about Meagan's new book she is writing. I love that Brady and I have a connection after all these years. I love hearing Scheree's stories of Brantleigh & Lawson LOL!!! I love that Sandy's children are all friends with me on facebook and I get to know what's going on in their lives too. I love to remember Mary Beth with Cindi. I love to know what's going on with Clay & Amy. I love to see Ashleigh's video of Cameron trying to crawl. I love helping Brandi with naked hiney pictures of Ella & Elijah sitting up.

So you see many of those things 3 of my children will never do. I do long for that at times. Thankfully most of the time God keeps me focused on what's important for us, for our lives. He does a great job each days showing me how richly blessed I am. It's just the times that allow meds, wheelchairs, medical equipment, amputation and all the other "junk" bog me down. Praying for those times to short and few. Still with all that it doesn't mean we don't want to hear what's going on with ya'll.

I know the fact that we have 3 special needs children may make it a little harder for us to "fit in" which has never been something we really wanted to do any way. However we need ya'll. We need to have some sense of normalcy. It's nice to have some active able body children for Marlee Anne to play with. I would also hope that because of Mary Elizabeth, Michala and Abe those of you whose children have been around them are not afraid of someone different from them. I pray that they have made a difference in each of your lives.

We are so very thankful that ya'll love us and our children for who we are. Ya'll see past the wheelchairs and all the medical stuff and of course my hard headed, stubborn self, to see the blessings and love us. Thank you!!!!

A renewed spirit

My heart is so very full right now so I just need to share. You know sometimes I am not the most patient person. I would love for God just to lift me up and place me on that higher ground rather than having to work my way up there and hitting those bumps and getting bruised. I know though if that were to happen I would miss so many lessons that He wants me to learn & I know that I need. The past few days have been a journey filled with so many blessings, so many people placed there to help feed my soul and my stomach, and truly enrich my life. I am blessed!

Thursday was such an incredibly hectic day. Our friend brought over lunch but right before she got there the vision therapist came to work with Michala. Then the respiratory therapist came for Abe but the tech hadn't gotten here to deliver the oxygen. He got there and started bringing in all kinds of oxygen tanks. I stress with medical equipment at times cause I hate having it all over the place and we don't have enough storage spaces to have it put up some where. Then our friend gets here with lunch. So we have all this going on at once. The vision therapist gets done but can't leave because her car is blocked in. The tech gets done but finds out he didn't bring the portable tanks that we needed. He will bring those out tomorrow. The respiratory therapist gets done and everyone is gone. WHEW!!!

No not yet. The phone starts ringing. I have a doctor on my cell phone and one on the home phone. The GI doctor read the PH probe report and Abe is refluxing. The amount of times is not terribly significant but the times when he is doing it is. He is either asleep or having a seizure when it's happening. The fear is that he would not be able to cough that up or it may be going directly to his lungs. So she has recommended to the surgeon that he have a Gtube and fundo done at the same time. We will meet with the surgeon on Friday morning.

The plan was to do the gtube, fundo and muscle biopsy all at the same time. However several of Abe's doctors got together Thursday and met. They have decided it's too big of a risk to put him through that much at one time. They are concerning it will put his little body into crisis. Along with the pain being too much for his body to handle and causing more seizures, more stress and more crashing with his glucose. So we will put the muscle biopsy off.

All this conversations with Neuro, GI, peditrician & surgeon took most of the afternoon. I was thankful when it was time for Marlee Anne and I to head out. It was so nice to breathe in the cold air. Well at least for a little while then I was glad to be warm again. We went to see Grace in her chorus concert at school. We really enjoyed it. Afterwards they took Marlee Anne with them to eat. I hated to see them leave without me but was thinking I should head home. When I called Mike he said you don't want to go. When I said yes he said they were all fine and to go. What a blessing. To sit and fellowship, laugh and of course my favorite eat was wonderful. I love going to eat with them because Uncle Papa orders one of everything and I get to enjoy a bite or two of each thing. Grace and I even went to Target to get me a Starbucks. They beat us home. When we got there Mike said you are better aren't you. Getting out for a little while gave me an extra boost I needed. There was even a fresh baked pavlovia waiting on me.

Friday was a slighty less eventful day than the day before. The portable oxygen tanks were delivered so we would have a way to get Abe out this weekend. That night I got to work on some crafts I wanted to do.

Saturday morning we were up and out early for the Fragile Kids Foundation Christmas party. We had brunch with Santa at Ray's on the River. We were nominated by some friends of ours and we had a wonderful time! We were adopted by the Neiman Marcus Marketing Team. Two of them came and had breakfast with us. It was such a treat!

Not long after we got home our neighbor called us and her church came over to carol at our house. We took Mary Elizabeth and Michala out to enjoy too. We all really enjoyed it. It was such a treat. Then she brought a plate full of freshly baked cookies up to us.

Mike and Marlee Anne headed out to get more leaves. While the rest of us had a semi relaxing afternoon. That night while they watched Fred Claus I took a nap. YEA! My body needed that especially because we were weaning him off the oxygen & I knew it would be a long night.

Sunday we got to go to The Lighthouse Christmas Party. What a blessing! It was so very wonderful to see our "family" and friends. It was so nice to spend time with all of them. We left there early so we could get back for Twighlights at Chimney Park.

Mike dropped Marlee Anne & I off so he could take everyone else home. It was took cold to get the others out. Mom tried to figure out a way to come sit with them so Mike could go with us but it was too late for her to come over and truthfully she was a little nervous about Abe. Mike had already seen it with all the lights on but it was something we had really wanted to do together.

This really should be an email of it's on. The mood was set among the woods. As you walked in you could hear the laughter of the children playing, the singing, the people all enjoying each other. If you stopped and look I think you could imagine the house still being there and all this happening right inside. You could hear the fire cracking and smell the warmth of it. Marlee Anne took off running through the leaves. I met up with a dear friend as I walked up. There was even a beautiful owl right outside. You could smell the popcorn, hot chocolate and apple cider. The smells could warm your soul. As if that wasn't enough there was hugs from all over. To have worked, dreamed and see this becoming a reality was more joy than my heart could hold. When I heard the excitement in Marlee Anne's voice as she said mommie see this, mommie look at this, mommie I did this. She was so filled with joy to have seen this project come to life. To see my friends that share this dream with us. To feel there embrace. To know they were proud of it all. To know there were excited that I was there. To be welcomed. It was an overwhelming pleasure.

My family was there. It meant so much for my sister, nieces and nephews to be there to share this with us.

Everything was perfect. I wish we would have had recorders so that we could hold on to everything everyone was saying. It was so wonderful to hear everyone saying how beautiful everything was. I hope that those of you that worked so hard on this heard what people were saying. Ya'll did an amazing job! Thank you! Thank you from my family, thank you for doing this for us, thank you for making our dream become a reality, thank you for taking us in, caring for us and loving us so much! Ya'll are the best!

OK I don't know who thought of the fairy houses or who made them but ya'll get top stars for that one. Several people loved them. Marlee Anne was so very impressed. She just knows that the fairies made them. She loved showing those to everyone especially the people that were searching for them and couldn't find them. She can't wait to take her granmama over there and show her.

She and I didn't have a way home. We were hoping to hitch a ride with someone. Just then my other sister came so Marlee Anne was so excited to get to show them everything. They took us home and spent some time with us. Another addition to my renewed spirit. I am blessed!

I know this was another long email. I will try to do better and write more often so that they aren't quite so long. Thank you for continuing to let me share my heart with ya'll. I have so many pictures to share. Too many to email. I posted them on my facebook but will try to get some up on my blog or send links to them

Wednesday, December 03, 2008

It's me again!

Warning this is a very sappy and emotional filled post that some of you may not want to read. No facts and figures here. Only my thougths and feelings that I need to work through.

Last night was a nightmare. Abe had seizures and Mo wanted him on the pulse ox. Good thing cause his oxygen kept dropping so we put him on oxygen. I was scared to give him his new bigger dose of Ativan cause I was so tired and I really needed to watch him. I gave him the smaller dose which helped a little bit but soon he was awake having more seizures. I went ahead and gave him the larger dose and he is resting well. He even pulled his feeding tube and oxygen out. His numbers are good. So I thought I would send this email before I got busy putting the feeding tube back in and making him mad.

This morning I received one of the most precious emails. Brandi said I know you receive emails saying how wonderful you are, strong you are, how much faith you have, saying they are praying for you, scriptures and all that. She said well I just don't know what to say. You see Brandi and I were pregnant at the same time. We shared all the ups and downs of pregnancy. The feeling bad, the excitement and all the fun stuff. We were both so very excited that our children would grow up together. I went through this of course with other friends being pregnant at the same time as I was with Mary Elizabeth and then with Michala, then of course with Marlee Anne. Would I rather it be like it was with Marlee Anne yes. OK before I continue I KNOW what I am supposed to feel, how I am supposed to act, what I am supposed to say, what I am supposed to believe BUT sometimes I need to share how I feel. I do not dwell on these feelings. I feel them get them out and go on. Well lately I haven't shared these feelings with anyone and Brandi's email brought a flood of emotions that need to be dealt with.

First and foremost I have three very dear friends Brandi, Ashleigh & Jennifer who had babies right around the time Abe was born. Jennifer and I have discussed this briefly and now Brandi and I will have the opportunity to discuss it. None of them have shared with me very much about their babies hitting milestones and doing this or that. I didn't realize it at first then when Jennifer mentioned it and now Brandi it hit me. Is it hard for me to hear those things. Yes. Does it make me think about what Abe should be doing. Yes. However that doesn't mean ya'll should stop. I want to share in your children's lives. I want to know what's going on with them. God brought each of you into my life years ago knowing that this day would come. Ya'll are there to help me through this not to shelter me from what should be. Ya'll are all part of this healing process. So right now today stop keeping things from me. Share! Bring those babies over to see us. Will I hold them and cry. Yes! But I would probably do that even if Abe was fine.

When I see another child around Abe's age or younger doing all the things I long for Abe to do it does make my heart want more for him. I would still love to see Mary Elizabeth with those long legs walking around. I would love to hear her beautiful voice singing. I would love to see Michala getting into all kinds of trouble more so than she does now. I am so very very thankful for the blessings that I receive from each of my children. Blessing I would not receive, lessons I would not learn if it wasn't for their special needs. However that doesn't mean I don't long for their lives to be different. I learned a long time ago that I cannot dwell on that. I need each of my friends to help me through this. Some of you stand in the gap quietly praying for us, some of you speak out every now and then through email, a phone call or a card, some of you bring food to help nurture our souls, some of you pray with us, some of you send scripture to renew our souls, some of you get the blunt end of hearing my worries and woes more than others, some of you sit with our children while we have to take the others to appts, some of you bless us with trips away or time out for fun stuff with our family. All of you have a place in this journey with us. All of you are greatly needed. When you don't know what to say. Say that. Just like Brandi said this morning. Be honest with us. This morning I felt so lost. I didn't know what to say or what to do. God sent Brandi at the perfect time to say hey I am sorry. I needed that so bad.

Abe's first birthday is coming very quickly. I keep seeing Marlee Anne sitting in her highchair on her first birthday in her beautiful princess dress eating cake and Aunt Kim & Brooke letting her get it every where. I so want that for Abe. He won't be sitting in a highchair and he won't be eating cake but I will celebrate his life.

Honestly I do not understand. God chose us. WOOHOO!!! Why? Some of you will tell me I am not supposed to ask that question. OK I am asking that question. When I get to heaven I will not care about the answer and I am sure now the question doesn't matter. Right now to me life sucks. I don't say that I often because I don't feel that way too often. I hate that my children have to endure what they are enduring. I hate that the only way I am making it through all this is to allow my heavenly father to carry me through it when I know that He allowed it. It's a heavy load and lately it's been weighing me down. Breathe. Breathe? How can I breathe when I am drowning. I cannot even feel God's hands pulling me up out of this pit. Then Brandi says I am sorry I don't know what to say. I immediately begin to cry and my body relaxes and God says here here I am let me carry you. Sometimes I can be so hard headed. Hey if ya'll hear or see Mike in his office laughing histerically ya'll know he has just read this. Maybe not sometimes maybe most of the time I am hard headed. This is not going to get me. I went through a horrible depression with Michala. I remember not wanting to decorate for Christmas. I remember her amputation and me sitting and holding her while Mike and Kim decorated the Christmas tree. I remember Brooke planning a "White Christmas party" and me thinking how am I going to take my baby out some where with one leg. I am bound and determined to not go through that this year. Some of you bend over backwards to try to make life easier for us and to try to understand why we can't come to church during this time of year, why it's hard to load everyone up and get out in the cold for something, why it's easier to have Christmas here than somewhere else. Thank you for sticking with us through all this. Thanks for trying to understand things that I don't even understand.

The other day on the Aicardi listserv we had a conversation about our lack of faith being the reason we have special needs children. I was told that one time at Myrtle Beach while I was in the pool holding Mary Elizabeth. This lady asked me how old she was and what was wrong with her. As soon as I told her she said well if you had faith and believed she would be healed. I told her I did have faith and I do believe she will be healed but I think that will be when she gets to heaven. She said let me go up and get some scripture for you because you are not believing the right way and because of your lack of faith your baby is sick. I have since had several people that actually know us very well to tell us it's my lack of faith that is "causing" my children to be sick. OK believe whatever you want but the God I serve is not punishing me for anything that I have done. My faith is the only thing that gets me through each night and day.

I am not sure why I through that in this email. I should have started this email off by saying it was going to be a lot of rambling too. I will get settled and straightened out some time soon and start making more sense. In the meantime thank you for letting me ramble and share my heart with ya'll. I didn't proof it so I apolgize for any typos or dumb sounding stuff.

Tuesday, December 02, 2008

The past two days.

WARNING this may be long and it's sure to be all over the place. I am spent physically, mentally, emotionally and spiritually. I want to share this all where it will make sense. Some of it will not make sense cause it doesn't make sense to us. Some of you may not care to read all the little details but I need to have them down for my thoughts. My heart needs to process some of this.

This morning I posted that I hated having a reason to go to Egleston but thankful that it's there. I hate going there this time of year. All the Christmas decorations are beautiful but they remind me of that dreaded year we were there for Michala's amputation. No child should have to endure the hospital ever especially this time of year but yet the hospital is full of sick kids. I pray those families dealing with everything are blessed in some way. My heart goes out to them.

Each time I hear something different about Abe, thoughts and memories of Mary Elizabeth being this age come flooding back. I didn't handle grieving the little girl I dreamed Mary Elizabeth would be as well as I should have so along with dealing with Abe's medical issues I am reliving Mary Elizabeth's and working through that too.

So we leave this morning at 6:00. We are 2 seconds from the house when I realize I have left my coat on the bed. My sweet patient husband turns around and goes back to get it. All the while I am thinking what a way to start the day. It's gotta get better right?

We get to Egleston and "our" parking spot is open but Mike parks next to it. It's sad when you have a parking spot. Even more sad when the doctors, nurses and cafeteria staff know you. You know you have been there way too often then. I asked him if he was trying to change our luck. He laughs and says yes it wasn't so good yesterday. OOPS! I forgot about yesterday. Well let me finish this thought first. The reason I knew he was trying to change our luck is because on Saturday when Tech was beating GA (yes that's hard for me to even say) Michala went in the bedroom where Mike was watching the game. Soon Mike is carrying Michala out of the bedroom. I asked him what was wrong and he said she was bringing Tech bad luck. They were either starting to play bad or GA was starting to play better. Either way Michala had to get out. He is very superstitious this way. If one of his teams starts playing bad he will change his position whether it's stand up, sit down, lay down or stand on his head until they start playing better. In some cases it just doesn't work.

OK so yesterday we leave at 5:30. We go straight to the GI lab but it's not open. We wait and we wait and we wait. Finally they open and we get registered. We get back there and remind them that we have to be next door at 8:20. Well it takes forever. I think it may have been this guy's first time doing this. Oh joy! So he finally gets all the paper work done. He is really shaking trying to get the probe in. I am thinking just do it and let's go. I am very close to saying could I please do it. He gets it in and we go down to Radiology for the x-ray. Once the x-ray is done he has to go back up to get them to check placement of the probe. He tells us to wait. Abe is screaming and having seizures. I have about had enough. So he comes back in and says I have to push it another centimeter. My baby is screaming and you have to do what? OK hurry and do it. Another x-ray, back upstairs to get them to check while we wait downstairs. Finally he is back down and says ok you can go. We go back upstairs to get Mike and Mary Elizabeth. So now you see why Mike wanted to change our luck. I tried to save ya'll some by leaving out some of the other details.

We are late for Abe and Mary Elizabeth's endocrinology appt. Not a good thing cause we know it's going to bump us further back. Our appt was at 8:20 & 8:40. We get there at 8:50 and get called back at 10:10. Man what a day already. Oh I forgot to say that Abe weighed 15.4 in the GI lab. Well endo weighs him and he weighs 15 with all his clothes and diaper on. We see Megan and she goes over everything. We laugh about the doctors reaction to his 0 thyroid levels from his last hospital stay that I had to talk with Rachel about cause I thought since he didn't make it it should be 0. Ok that's another story for another day but it was a good laugh. She wrote orders for labs but we decided to wait until the next day so we could get all the labs down at one time. You would think that was a good plan. RIGHT?

So we are out of there. We didn't get a chance to fit breakfast in so we run through McDonald's drive thru. YUM! NOT! It was quick and easy though. Abe was still screaming and still having seizures so quick and easy was the way to go.

We get home and it's time for him to have apple juice for the ph test. Oh it was not a pretty sight. His body so did not like all that apple juice that he had to have. He screamed even more. I made the mistake of giving him his CoQ10 at the same time. Two sticky things don't go well in the ng tube. So now when it's time for his milk it won't go through. I panic cause I know I cannot pull it out and unclog it because it's in the same side as the ng tube. I call Mo to see if I can leave it there and add a third tube to his nose but in the opposite side. She says yes but if you get too much resistance go through his mouth instead. Well now I had to find another ng tube. Finally I find one. Thankfully my sister is still here. She and Marlee Anne hold him down while I get the ng tube in and we get him fed.

The rest of the night was filled with trying to keep him from pulling the ph probe out of his nose along with trying to get him relief from the seizures. Mo calls back and says to give him a 60 mg bolus of phenobarbital. If that doesn't help then 2 hours give him another 60 mg bolus. He got those two boluses and he regular night dose and still continued to have them throughout the night. Reflux and that ph probe was causing havoc. I was so ready to get back to the hospital and get that out.

We got there this morning in time to eat breakfast in the cafeteria. It was really a good breakfast and brought back wonderful memories of Sam's mom and I having breakfast each morning together praying for our little boys and talking about how their nights were. Today was spent with us crying and talking about Marlee Anne. She is such a sweet tender hearted caring child. She has to deal with a lot. As Mike asked our blessing he asked for strength for me. I know nothing more humbling and great than to hear someone pray for you.

After the ph probe was removed we headed to Genetics. OK this is not a place that I love very much. I hate sitting in the waiting area while beautiful couples come in with their beautiful babies most likely with rare syndromes. I hate knowing what they are about to be faced with. I stopped and said prayers for each one. My prayer is that through it all God will proveil and these families will be made strong through these challenges. We met with the genetic counselor first. YUCK! I just hate it. She was nice and all but I would much rather be dealing with Karlene. We answered all the many questions. When she left she said Dr. Kendall would be right in. We are so incredibly blessed to have such an amazing mitochondrial specialist in Atlanta. People travel from all over to see her. We have never had anyone in Atlanta with her mito knowledge and it took us so long to get an appt. She was so nice and took up lots of time with us. She answered the questions we had. She said that she would like Abe to have a muscle biopsy if only for the fact that he would qualify for the upcoming studies if he has a confirmed mitochondrial diagnosis. Those should be in the next 2-3 years. For those that don't know there is not a lot that can be done for mitochondrial patients except for treating the symptoms and she said we were experience in that area. When she was checking Mary Elizabeth she suspected that she has CDG. Don't ask cause I don't know. It's something that we will all learn about when the test results come back. These is secondary to mito and there are 6 different types. Quite rare (imagine that!). She has only diagnosed 3 cases in her lifetime. One of those 6 types has a treatment for it. We will discuss all that when the test come back. Since it's genetic that might be awhile. She hands us the lab orders and off we go.

We left there and went back to Egleston for Abe's GI appt. We get that right on time. The see that Abe has two appts there and they check us in for both. I know that seems small but all it takes sometimes is something so small to make a huge impact and that really did. When Dr. Schoen comes in to see us she said oh dad is sleeping. I hadn't even noticed and he hadn't started snoring yet. I try to wake him up but he wouldn't wake up easily. She whispers let him sleep. I told her not to whisper and we both laugh. After a little bit of us talking he wakes up. She goes over his growth chart. Oh yes at genetics he weighs 15.2. At GI he weighs 14.7. That's what we have to go with. Well he made it to the 5th percentile and everyone is happy. Dr. Schoen will get the ph results on Thursday. We will then to discuss the fundoplication surgery for reflux. Everyone is in agreement now that we need to go ahead and do the g-tube. Since we are having such a hard time with seizure control, reflux, aspiration and pneumonia it will be best. This way when he is out of it from seizures or seizure meds he will still be able to get his meds and milk without putting him in danger. The g-tube, fundoplication and muscle biopsy can all be done at the same time.

As we were leaving that appt to go eat lunch the nurse stops us and says if we want to wait Dr. Holt will be right down. Mike takes Mary Elizabeth for lab work while I wait with Abe. Well the clinic lab calls genetics and they say they want the labs down at Egleston. He calls me from there and says whatever you do do not bring him here for labs. Just not a good time of year for all this. They get her blood on the third stick. As they are leaving to come back to meet us Mike says Miss Emmy's mother comes walking up dressed as The Fairy Godmother. He said she looked just like her. She said she has to have a teddy bear. She gives Mary Elizabeth a teddy bear and says now wait a minute. She gets over next to her so she could give her a kiss on the forehead. Mary Elizabeth came back with her new bear in her lap smiling from ear to ear.

Dr. Holt comes in and asked how I am. This is all happening while Mike and Mary Elizabeth is at the lab. I think I could say ok and leave it at that. No I am honest with him and tell him this is a little more than my heart can handle. I tell him how hard it is to watch. He asked if there was ever any time that he is awake happy. No - awake seizures - then meds to stop the seizures and he is back asleep. We still have possibly the ACTH and/or Valporic Acid. Neither of which he wants us to try right now. The concern with the Keto diet is the weight lose and poor growth. Which since he is already dealing with that it might be rough. We still thinks that might be our next step to try after the g-tube. He asked if I was still supplementing with formula and I told him no because I did not like how Abe sounded when he has it. His breathing is really bad when he gets formula even through the g-tube. I had been saying to several doctors that I was concerned about him having a milk allergy. They changed the formula but it was still milk based and still the same result. Instead of trying soy I thought I would just stop it and see what happened. I just didn't think much else about it after stopping it. Dr. Holt was examining him and said oh his face looks much better. When did he stop scratching it. I started thinking and told him I really wasn't sure. He said was it around the same time you stopped the formula. Sure enough it was. He said well I think he is allergic to milk. Good to know. While examining him I mentioned that Dr. Kendall thought Abe's liver was low and Dr. Schoen thought it was enlarged. Dr. Holt checked and agreed that it was enlarged but he feels it is from the high doses of steriod and once that's stopped it will go down. If not then he said we would discuss that. When Mo came in she said she didn't feel like it was a liver problem because he has had so many work ups for that that it should be fine. Dr. Holt watched Abe's breathing and when he timed it it was 152 while sleeping. He thinks he may be having a reaction to the topomax. Not a good thing because it seems to be working on some of the seizures Abe is having. The tested that and if it comes back positive we will decrease the topomax some. Mo wants us to monitor him on the pulse ox some.

We had to go to the lab for his blood work. It took forever to figure out what genetics wanted. Once that was figured out she took us back. OK some prayers went out for this little boy at the right time because this lady was amazing. I regret not getting her name. I am calling there tomorrow to see who it was because she was a blessing and someone needs to know that. I went through my typical spill about him being a hard stick, slow to bleed and showed her a couple of good places to try. First stick, just a little moving around and there comes the blood. Filling up those vials fast. She said I really shouldn't be getting this much blood from him. No one including me was thinking about the fact that he got orders yesterday from endo, orders today from genetics and neuro. I asked how much she was getting. She said 30 ccs. For those that don't know 30 ccs is an ounce of blood. I saw all the color leave his face quickly because he was bleeding really quick. She said you have got to feed this baby quick. Thank God for that ng tube cause he went down fast. We got settled and I gave him some apple juice to kick his sugar up quickly then fed him. It took awhile but his color came back. He is resting now cause he was having way too many seizures and had to have ativan again.

Thank you so very much for your prayers! Please continue to pray as we make decisions for Abe. Our desire is to have clear direction from God. We are wiped out and emotions raging so peace would be nice also. I know this email is all over the place. I hope it makes some sense. A lot of info to process in one day. I started typing this email around 7:00. Coming back and forth to it I am sure I left something out or something is not right but ya'll get the idea. If you made it this far thanks!