Marlee Anne's first wishbone

Uncle Bryant found a wishbone on Thanksgiving. He gave it to Marlee Anne to do with her daddy. It was very special for me cause I remember doing that with my daddy.

Like any good daddy Mike let her win and her wish came true. She was compared them very carefully.

Life

WOW! I didn't realize it had been so long since I had updated. We have had a wonderful time with our friend Anci from Norway. Mike, Michala and Marlee Anne are on their way now to take her back to the airport. Please pray for a safe flight for her. We are going to miss having her here. She was such a blessing to have in our home the past two weeks. It will be an adjustment with her gone but we know her family is looking forward to her being back.

So much to catch up with. I will share the bad first. Since Thanksgiving Abe has been having seizures pretty much around the clock. We are contributing it to the weather. He is either awake having seizures or out of it because he is getting ativan every 3-4 hours and diastat every 8 hours. We go to the neurologist on Tuesday so hopefully they will have some ideas. It hurts my heart to watch him like this. I am so grateful for God's grace to get me through this and His strength to allow me to take care of my three precious girls and amazing husband.

Tomorrow Abe has to go to Egleston to have a ph probe inserted. This will tell us if he is having reflux and how much. Please pray that this goes smooth. We will come home after he and Mary Elizabeth have their endocrinology appt. Tuesday morning we will go back to Egleston to have the tube removed. Then Abe and Mary Elizabeth will both being seeing the Mitochondrial specialist. Please be in special prayer for this appt. This is where we will discuss more about Mary Elizabeth's care and also find out more about the possibility of Abe having a mitochondrial disease and whether we will do a muscle biopsy on him. After that appt Abe will see GI to get the results of the ph probe and discuss a g-tube for him. I am trying to be a peace with the g-tube because I know that he has aspirated, I know the dangers of trying to give him meds and/or feed him will he is having a seizure. If it wasn't for the feeding tube right now we would be having a time trying to find a time when he wasn't seizing to give him food or meds. So I want God's will to be done. Peace and strength for me as I hear what needs to be done. After all this Abe will see neurology. So prayers for these next to days is that everything will go smooth, Mary Elizabeth will tolerate the long days, Mike and I will not be too stress over all of it, answers and/or direction for Abe's seizures and that God's will be done for Abe's little body. Thank you!!!

We did so much while Anci was here with us. Our exciting day was when we went to see Santa at Phipps. We went to eat at the Cheesecake Factory first. We got some wonderful pictures ahead of time and even got to see some of our friends from Camp Sunshine. Julia & Claire were there to see Santa too. Santa was as wonderful as always. I will attach some pictures and put more on our blog. Afterwards we rode the pink pig. I love having traditions. Our friends went with us and Marlee Anne loved spending time with Andrew.

Uncle Papa cooked a wonderful meal for Anci. She had requested BBQ ribs because she remembered them from her previous visit. We played games. I even got away with playing a few hands of spoons before Mike caught me. LOL!!! Anci even ate her first and second ever s'more.





Mike and Marlee Anne took her to Chimney Park to help get ready for Twighlights. Please do not forget to buy your tickets and come. I can't wait to see it. I know they have worked very hard. I have heard it's going to be very beautiful! You don't want to miss it!

Anci also got to go on a ride along with the Covington Police Dept. while she was here. Thanks to Ken for making that happen! She really enjoyed that but didn't get to get her picture made with a police officer or beside the police car.

We had a (I am thinking of what word to use right here) Thanksgiving. It makes me laugh cause I have to think of how my mom, brother, sister, neice & Mike would describe it. Does anyone have a "perfect" Thanksgiving when families get together? Doesn't something always go wrong. Well maybe not wrong but there are always mishaps right? Ours actually was really good. However I am already planning to be in Disney World for Thanksgiving & Christmas next year. Now granted I have told my whole family they can go too. Marlee Anne showed Uncle Bryant & Win how to make Flubber. That was a big hit!

Every year I go out shopping real earlier on the day after Thanksgiving. Anci said she was game. We left the house at 5:30 picked Grace up and heading to Target. When we got to Target Anci screamed at the line wrapped around the outside of the store with people waiting to get in. She hopped out of the van to take pictures. Usually I am gone most of the day but with Abe and his feeding tube I decided to cut it short and head back. Target, Lifeway, Bath & Body Works, Michael's and Old Navy were the only stores we hit. Oh and Chick-fil-A, Starbucks and Dunkin Donuts too.

Last night we took Anci to Red Robin. Then we rode to see Christmas lights. Most of the typical decorations around here or in excess in Norway. She was shocked at most of the decorations that were out. Mike told her that as it go closer to Christmas you would see that all over the place. She even got to eat her first Peep.

Hopefully she had some time to rest and relax even while performing all of her Norwegian Nanny duties. Well Mike got two Christmas trees down before he left so I better get busy decorating. Thanks so much for all your prayers. While counting our blessings we count each of you.

Michala's new outfits

I have to brag on our sweet neighbor once again. She made Michala two new outfits that are perfect for her. Ya'll know Michala hates to keep close on. Well these she can not get out of. To make it even better they are just the prettiest things ever. They are custom made so she cut the leg of the pants so that Michala can not pull the pants up over her stump and hit it like she typically does. It such a blessing. We love them. Michala does too as she can tell from the look on her face. She is very proud.

update on Abe

Well I think it's finally safe to say I have a praise - we got Abe off his oxygen. I wasn't sure how long it would last but it seems that now I can say he is off of it. One less cord always helps.

Please pray that we have an uneventful weekend. Anci is coming back from North Carolina as I type this. We are all ready for her to be back.

Hope that everyone has a very blessed weekend. Counting all of you among my blessings!!!

Abe's test results

Abe started having a seizure before we left to go to Egleston. We couldn't give him ativan or diastat because he had to be awake for the swallow study and those would knock him out.

Well let me back track. He was supposed to be sleep deprived for the EEG. At 1:00 AM he started having a really bad seizure. It even scared me. I knew it was bad and was going to be a hard one and last awhile. I gave him ativan. It was still going strong 30 minutes later so I knew he was going to have to have diastat. I didn't want to have to do either of those cause I wasn't sure how it would affect today's test. Well 30 minutes after diastat it was finally slowing down. The seizure lasted an hour and a half.

Then this morning it starts all over but thankfully not as strong. We get to the hospital and it's still going on. During the swallow study he is still having a seizure and the test probably shouldn't have been done but at least he was being monitored. He did aspirate with the thin liquids but did ok with it thickened with the next stage which is nectar. He did ok with food too. She said his suck wasn't strong. We are not sure if that's because he was having a seizure or maybe that he lost that ability with the infantile spasms or just from this past month with the feeding tube. We will thicken his milk and hopefully get him to take a bottle. Once he is doing well with that we will take his feeding tube out.

I had to give him ativan to stop the seizure so he was out of it for the EEG. He is supposed to be monitored awake, going to sleep, asleep and then waking up. We got a little of the waking up and going to sleep towards the end. His EEG is still bad. So bad that the hypsarythmia is covering everything else up. The doctor said that it looked like there was one spot that it might look a little better when he was waking up.

We met with Dr. Holt and Mo and have decided to start weaning the vigabatrin tomorrow. This was supposed to be Abe's miracle drug but doesn't seem that way. Since getting home he hasn't stopped having seizures. Even the ativan and diastat do not seem to be helping now.

Thank you for your prayers!

Abe's appts

Tomorrow (Thursday) Abe has a swallow study to see if he is aspirating. Then he has an EEG and neurology appt after that. A long day! Please pray that the swallow study will be negative and we can take the feeding tube out and he will not have to have a g-tube. Please pray that the hypsarythmia on his EEG has cleared up enough to see what is going on in his little brain. We really need some answers and direction about his seizures. Please pray for a safe trip. Also pray for the girls and the friends of ours that we will be taking care of them for the day. Thank you for your continued support!

The Butterfly Project

http://www.hmh.org/minisite/butterfly/index.html

1.5 million children died in the Holocaust. In memory of them the Holocaust Museum is collecting 1.5 million handmade butterflies. You can read more about it, get the address and there is even a teaching project available on the website.

For a wonderful free cut file go here http://dan99.blogspot.com/ . Thanks Dan!!!

Prayers for others

Ya'll I know I am always asking for prayer for us but I would like to ask you to lift up these two families please.

Ya'll know Marlee Anne's best friend Mackenzie just got a precious new sister named Torianna. We just found out that Torianna has Cystic Fibrousis. Please lift up this precious family. Over the past few years they have come to mean so very much to our family. A chronic illness filled with doctors and hospitals was not what we wanted for them. They are very dear to us and we hurt with them.

I cannot believe I am even writing this. A dear friend of mine lost her sister today to ALS. My precious friend Laurie, her sweet sister Debbie and I are all part of a group called TRAK (true random acts of kindness). When Debbie was diagnosed we were all devastated. I truly thought it would be years before her symptoms got worse. Just recently she started having trouble breathing. Laurie said she died peacefully in her sleep. My heart hurts so much for Laurie, their mother, Debbie's husband Bert and their son Michael. Please lift this family up in prayer.

Thanks for being prayer warriors with me and surrounding these two precious families with prayer.

brief blessings

Ok this post is my raw thoughts and feelings as Jennifer says. It's not to start a debate with anyone about any of these things. It's just my thoughts and opinions that I want to share. I need to share.

Every now and then hidden within all of Abe's seizures we get a brief smile. They seem to be real smiles and not really seizures. We have been debating that some as of late. I just thought I would share a couple of pictures that I was able to get. It's time like these that I am reminded that my baby is still in there some where though hidden behind these nasty things. I refuse to believe this is the new normal for Abe. I am reminded that if he does it once he will be able to do it again once the seizures are taken care of.

Mike's friend asked him today how things were going and MIke's words were the storm rages on. It does. It's hard. It's rough. The hardest part today is that we were hit with the realization that it's not going away tomorrow. This is another one of those on going challenges. The good thing is we have a plan. I want to share this with ya'll so that I will have an account of it and so that ya'll will know how to pray. I will continue to pray and believe that one day Abe will be seizure free however I will be realistic.

After going over everything with Mo we have decided to continue the Orapred for a little longer. Tomorrow morning we will increase Abe's Topomax. Friday we will discuss the possibility of decreasing his Vigabatrin. This is the med from Canada that was supposed to be his miracle drug. If decreasing that works we will then begin decreasing Orapred. We will rotate decreasing both of these meds until he is off both of them. Our next steps will be Depakote, Keppra, Keto diet and/or Vagus Nerve Stimulator (VNS). These all can have extreme side effects so we will discuss these options in depth before making a decision.

Next week Abe has his swallow study. Please pray it's negative. If it's positive for aspiration then we will have to do the g-tube. It's not what we want for him but we do want him to be safe and if that's what it takes then ok. I would like to have a peace about it though. After his swallow study he will have another EEG. Then we will meet with Mo and Dr. Holt to discuss our next steps.

I know we ask a lot from ya'll in the way of prayers but if you don't mind would you please add one more. My milk supply has decreased by half in the past 3 days. I know it has a lot to the fact that he cannot nurse right now, stress, no rest and they fact that I am not eating right. I have started taking Blessed Thistle, Fenugreek and Brewer's Yeast in hopes of increasing my supply. Please pray that this works. I would love to be able to give Abe my milk until he is at least one, longer if possible. We know this is important especially since Abe doesn't have an immune system, cannot get immunizations (even though I still say they had a lot to do with his infantile spasms and seizures) or a flu shot. But I was reminded today by Mo that I am a good mother. I have made it almost 9 months with giving Abe my milk no matter what it took. Not patting myself on the back but I needed to hear that. She said that if I am not able to continue to pump he has had at least those months. I did tell her that I have been seriously praying about this. It is taking a lot out of me by pumping and then feeding him but it's something that I really want and need to do not only for him but for myself. I think that if he ends up having a feeding tube I will rethink it. Also that will help with our decision about doing the Keto diet because he will not be able to have my milk if that's the case. So peace - I need prayers for peace please. It's not as easy as saying ok I can stop. It's the fact that he is my last baby and so much more than that.

I wish all this was easy. I wish this wasn't another one of those long journeys for ya'll to travel along with us. However I am thankful that each of you are there with us as we go through this. Thank you for lifting us up and carrying us through. Thank you for your emails, cards and especially your prayers.

Quick update on Abe

Since Abe's appts on Wednesday he has been having seizures pretty much all the time he is awake. We have him on a med around the clock in addition to his seizure meds to keep him knock out. It's either that or having seizures. Not the best quality of life but for now it's all anyone can offer us. I am tired, beaten, worn. Trying to bounce back to my old self but right now the seizures are winning. I am bound and determing this is not going to win over and be the straw that broke my back. Stress is high in our house and we are trying to take it minute by minute. We have had to fight insurance to get him enough Diastat because we are having to give him so much of it. I wish I had better news to share.