No More Medicine!

We have slowly been weaning Will from his medicine since December. When he had been down to 1 pill of Lamictal for 2 months, I called his Neurologist and he told us we were done with the meds. Wow. So incredible to actually be here at this point. Surreal. That was on Monday so we had big bowels of ice cream to celebrate that night and on Saturday we ordered Will's favorite pizza and made plans to watch The Force Awakens. I sure love that boy, and I am so incredibly grateful to be where we are today with him.

The Best Sound in the World

I had a check-up with my OB mid-morning on the 17th. He and I discussed a few things most importantly what his schedule would be like for the next day. I was still at a 1 and 60% effaced so it didn't appear that anything was going to change very soon. However we were heading into the weekend and my doctor was going to be going out of town until Sunday. We went ahead and scheduled an induction for the following Wednesday, the 23rd. I made sure to tell him that I go from a 7-10 in about 30 minutes and I reeeeallly didn't want to wait on him to start pushing. ;) I told him with Sam I had had to wait for him because the nurse didn't believe me when I told her that. He said we'd make sure that didn't happen this time. Good man.

I left and went to Kroger. We were hosting a glow in the dark Easter Egg Hunt on Friday and I needed to pick-up a few items, and it was St. Patrick's Day,so obviously I had to get stuff for reubens.

On my way home, Janel called and asked if I was nesting yet. Nope. I had no desire to clean anything. I'd done a pretty good job with stocking the freezer, but that was about it. We talked for a few minutes and then I had to let her go. I spent the rest of the time that I had before picking up the boys from school cuddling with Sam on my bed while he watched the Good Dinosaur, and I read photography articles. I put Sam down for a nap and headed to get the boys.

While driving home from getting the boys (about a 20 minute drive), I noticed I was having contractions, not unusual, but they felt different. I noticed they were definitely in my lower back. Crap. I called Patrick to give him a heads-up "just in case, " but told him I was going to drink some water and lie down when I got home to see if they stopped. However upon arriving home I was about to lie down when I thought, "I can't lie down. My house is a mess! If this baby is coming I have got to clean!" Thus started the cleaning marathon. I scrubbed toilets, mopped and vacuumed floors, washed windows, got all the laundry done, folded, and most of it put away, started on dinner, but my contractions became INTENSE so I had to lie down and have Patrick takeover. I had a few more intense ones and then got up to pack a hospital bag. Still hadn't done that yet, oops. I texted Mom and Holly to let them know. That I was pretty sure I was in labor and stay close to their phones.

We told the boys that I was probably going to have to go to the hospital to have the baby. They were excited and nervous, me too. We said family prayer. They asked lots of questions. So much excitement! They were worried we would just leave them at home with no one to watch them. Seriously? They have so little faith in us sometimes. Patrick promised that they were our first priority and we wouldn't leave until someone had come, whether it was Aunt Holly or Nonna and not to worry. The whole time I was thinking speak for yourself, buddy, I'm not having a baby at home, and I'm definitely getting an epidural. ;) I remember kneeling down in prayer with my 3 boys and good husband, I think Patrick offered the prayer, but I'm not certain, and I don't recall what was said. I just remember pleading with Heavenly Father that all would be well and I would return home to these boys. The older I get the scarier it some things seem.

I still hadn't heard anything from Holly at 7:30 and was starting to get nervous. I had tried calling a few times, and told myself if she doesn't call me back by 8:00, I'm calling Allison. I tried calling her one more time a little after 8 and she answered and said "Sorry!" and that she would be right over. phew. When she got here, I decided maybe I should sit down to make sure I was really in labor. I sat down and we chatted. Holly suggested I download an app to keep track of my contractions. GREAT IDEA!! We finally left close to 10. I was pretty certain I was in labor, I was just really worried they
would say go home.

I was all hooked up to the monitors by 11 and was at a 3 showing definite signs of progress since that morning. They told me they'd monitor me for an hour and then call my OB to see what he said. When they checked me again I a had dilated to a 4 so thankfully Dr. Chesney said to keep me. They started pitocin and I got my epidural shortly after that. That was painful. I have never had one that hurt, but that one...something wasn't done right. Once my contractions became more regular and painful I could definitely tell something wasn't done right. My right side was still feeling lots of the pain. The epidural had taken the edge off, but I was still feeling all the rest of it. Dr. Chesney came in and broke my water around 1 am thinking that would really speed things up. Nope. Finally around 5:30 I was feeling more pressure. They started to prepare the room and by 6 it was time for me to push. Dr. Chesney came in and made some jokes. I remember thinking it was funny but being so nervous about having a baby that I didn't really laugh or feel like talking. Isn't that weird. My fourth baby and I was on the verge of tears. I'm not sure why. I don't know if I was just scared at the idea of all that could happen, if it was the realization that this is probably my last baby and last time to do this, if it was just the final kicker in the tough pregnancy with so many scares....I'm not sure. I just remember trying really hard not to cry. I pushed maybe 5 times and we had a baby LUKE! I saw his beautiful head and heard his incredible life changing cry. Instant tears. That sound could never get old. That sound is a life driving force. The moment we live for and ache to hear while we carry and grow our babies. I don't think there is another sound that can come close to touching the meanings and feelings that accompany that incredible miraculous sound. How grateful and fortunate and blessed I have been to hear that sound.

They handed him to me. My sweet perfect boy. I kissed him. He cried. I cried. I stared at his little self. He whimpered. I prayed unceasingly in my heart prayers of thanks. FOUR BOYS! I was a little stunned, but not surprised. I'm sure that doesn't make sense. But wow. He was here after a difficult and emotional pregnancy. So thankful. And he was so cute and so tiny and so mine. 7lbs 4oz.  21 inches. He reminded me of Jack as a baby. A small but noticeable amount of dark hair. Another newborn with blue eyes...selfishly praying it'll stick. And oh so perfectly pink and healthy!

Luke meeting his big brothers

Luke, we love you. We're so happy you're here.

Samuel's EEG

Sam's EEG was today. I was really nervous about how he would handle it because even though he's pretty mellow and go-with-the-flow, he can also be a really spunky and feisty kid. He was only supposed to get 4-6 hours of sleep last night so I think that was really helpful in keeping him still, but I was worried it might go the other way and have him super angry and uncooperative. He laid very still and let the EEG Tech put all the electrodes on his head. He did his best to close his eyes and to blow on the pinwheel. When she asked him if he could try and fall asleep he nodded. She then asked if he wanted a pillow, he nodded. And lastly she asked if he wanted a blanket, he nodded. It took a few minutes but he fell right to sleep, thank goodness. I hated waking him up because I knew he was just so exhausted. But he had a pretty good attitude about that, and we washed his hair and went on to meet with the neurologist.

The neurologist read over his EEG and then gave us the results: epilepsy. Not surprising but still crappy to hear. We discussed different medications and things that had worked/helped with Will. We decided to start with depakote. I love/hate relationship with that drug. It helped so much with Will's seizures, but man, it is so hard on a body, especially the liver. Hopefully this will help with the atonic seizures he's been having and also hopefully hopefully hopefully prevent other seizures types from occurring. I will hang on to the hope that his seizures might not spiral out of control like Will's did. That his experience will be much much milder. That he will be able to grow out of this like we are hoping Will has/is.  We go back in 3 months to meet with our neurologist, Dr. Ess. Hopefully this will work and we won't need to see him before that.

Sam cried almost the whole way back home. He was soo tired and really getting hungry. We stopped and got him a gravy and biscuit, cinnamon raisin biscuit, and an orange juice on the way home. I sat him in my lap and fed him till he decided I was moving too slow and took the fork and finished feeding himself. He ate pretty much all of it, and only shared a few bites with me. I love this little spunky boy so much. I hope I can be what he needs.

Phone Call

On the way to Grandma's funeral visitation, I got a call from my OBGYN. He told me that the results from my blood work had come in and the baby tested positive for something called Trisomy 13. He told me that he and Dr. Scott (my high-risk OB) both thought it was a false positive because the baby looked absolutely perfect (with the exception of the bright spot on the heart) and normally with babies that have trisomy 13 there are severe deformities seen on an ultrasound. He said they would like for me to do have an amniocentesis done and that Dr. Scott could see me tomorrow. I told him I wouldn't be able to meet with her until next week, because my grandmother had passed away.

At first I thought even if the baby has this why would I risk amniocentesis? I know it is considered a very safe procedure but still it made me nervous. I thought... well, I had about a million thoughts. I have never thought I could terminate a pregnancy, but if the baby was only to live and be in pain until it died, how could I be ok with that? That felt selfish to me. I sent an email to my family and a few friends asking for prayers of wisdom and clarity as we tried to make the decision for what we would do.

Today was my appointment. Dr. Scott met us in the ultrasound room. She said she had called the genetics people and asked what the probability was that this was a positive result. 13%. We talked about what might have caused it to come back as positive and a whole bunch of other stuff. She left Patrick and I to decide what we should do. I had gone into the appointment pretty certain that I would have it done and feeling good about that decision, but when we were told it was 13% correct we both felt like the procedure wasn't worth the small risk of miscarriage. We talked with the Dr. again and even saw the baby on the ultrasound and both she and the ultrasound tech commented on how perfect everything looked. We set up another appointment for a couple weeks out to have another ultrasound. Dr. Scott said if at any time I changed my mind we could always do the amniocentesis.

We feel good about the decision we made. I have a new understanding of women who have to make hard decisions regarding their babies. It isn't a complete understanding, just a new dimension.  Life is hard, and for some it seems impossible.

Today we are so thankful that all seems to be well with our little one. Life can change in an instant.

Our Baby!

Conversations this morning before taking the boys to school:

Will: Jack, today Mom will find out if she's having a boy or a girl!"
Me: Will, we aren't finding out. We are waiting till the baby comes."
Will: What?!?!!! 

hahahaha

I had my 20 week ultrasound today and we got to see our sweet baby! We stayed strong and didn't find out the gender. It was easier than I thought it would be. Everything looked good with the baby, but there was a small echogenic intracardiac focus on the heart that is sometimes seen in babies born with Down's Syndrome. So my doctor is wanting me to have a more in-depth ultrasound with a high-risk doctor in about a week. That is a little nerve wracking, but we also aren't too concerned about it. We feel good about things.

Weaning

We started weaning Will off of one of his medicines after the one year anniversary of him not having a seizure. His doctor instructed us on what to do, and it took about 3 months to have him completely off of it. His personality has changed a little. He is not as reserved around others and feels a little more confident, I think. His hand writing has improved as well. Not sure if this has something to do with less drugs in his system or just his hand muscles strengthening. He has struggled with that compared to a lot of his peers. It has almost been a week with no "pink medicine" as Will calls it. He is doing well, and we've not witnessed a seizure yet. Fingers crossed!!

Can't Keep a Good Cowboy Down

Jack got his splints changed for casts today. They cut the one off his wrist before X-raying it but left the leg one on. He was so excited saying, "It's all betta!" he was utterly disappointed when it was confirmed that there was a break in the wrist, and it would need to be put in a cast. Then he was devastated that picking "out colors" meant for his cast and not for a treat...Oops! I guess I should have been more specific. He had a morning full of disappointments, poor guy. So following, his appointment we had to do something about all that disappointment and picked up the only weapon I know that really helps in times like these; a chocolate milkshake. He forgave me.

"There's a Bunch of Bones Inside Me..."

Jack was procrastinating nap time eating his lunch, I was putting dishes away, and Will was climbing into bed, when out of the corner of my eye, I saw Jack starting to fall from his chair at the table. As I quickly tried to get to him, I thought that he was going to fall right on his head.  Seconds later, I realized I never heard a thump and that his right foot was stuck in the slats of the chair. As I pulled it out, I thought for sure it was broken. It just looked so contorted. He was screaming in pain and just sounded so pitiful. I quickly gave him some Motrin and told him we needed to go to the doctor. Oh my did that terrify him! He really started crying then and saying he was scared. I carefully carried him to his room and laid him on the floor so I could change his diaper and shirt. The shirt was soaking wet from a cup of water that spilled on him when he fell. While he was laying there crying, I asked, "Does your foot hurt really bad?" He said, "And my arm." That confused me because I didn't see him bump it. He let out a loud scream when I changed his diaper and paranoia set in that his hip was dislocated. I called the doctor and they told me to come right on. When I told Will he needed to change clothes so we could take Jack, he wasn't very sympathetic. He said,"But it's my nap time!" What can I say? The kid loves his naps. While I was gathering up our things to go, Jack was laying in his floor crying and not moving, and begging for me to hold him. It was pretty sad. I couldn't help but get teared up a few times. I tried to reassure him that the doctor would make it all better.

With all the emergency hospital visits we've had to make, one of the most important things I've learned is never forget their blankets or favorite sleeping buddy. I can't stress how necessary these items are!! I didn't grab them the first time we had an ER visit, but I've always remembered since. When we got to his office, I carefully unbuckled Jack and made sure to take his bear and blanket in with us. As we were walking in Jack through his tears mustered some courage and said, " I have my bayer and banket. I'm gonna be so brave. I'll be allll right." He is such a sweet, tender hearted little boy!

After a few X-rays it was determined that Jack's tibia was broken. The arm X-rays weren't showing any visible breaks but he was still not using it. They sent us to an orthopedic doctor who took a few more Xrays of Jack's arm. He saw fluid around the elbow in the growth plate. He thought it best to go ahead and splint it along with the leg just in case. When we come back in a week, the Xray should give us more information.

Jack was a pretty good sport through the whole ordeal but started feeling pretty sorry for himself when we got home, and he realized he couldn't drink his milkshake without help from Mama. He was so sad that he almost didn't drink it at all. After dinner, he was ready for bed. I laid him on our bed and turned on Bubble Guppies for him. There is an episode "Call a Clambulance" about a fish that breaks his tail bone. Jack has a new imaginary bosom buddy! But when the first catchy song came on. "A Bunch of Bones," and Will jumped up to dance, Jack got big tears in is eyes and said, "I can't dance! Mommy take it off. My boo boos all better." It was pretty pitiful.

Back to Vanderbilt

Thursday morning (Sept 22nd), Will and Jack decided to make a ginormous mess in the brown sugar. I had to take off their clothes and then do some damage control because it was on the counter, floor, inside the oven, and the oven drawer. After cleaning the mess up, I proceeded to redress them. When it was Will's turn, I noticed the incision on his chest looked a little bit irritated towards the bottom. Since the boys had been running around shirtless and rowdy while I cleaned up the brown sugar mess, I thought maybe that had something to do with it. I called Patrick and he said it was probably no big deal. I decided I'd wait till after Will's nap and look at it again.

I checked after his nap and it still looked redder than normal, but looked better than it did earlier.

After dinner, Patrick gave the boys a bath. I was getting ready to go to a meeting, when Patrick let me know that one of the stitches looked like it was "leaking" a clear pus. We called Will's neurologist who told us to call the surgeon. He said it could be superficial meaning only a stitch had gotten infected, but that signs of infection usually show up around the 4th week post surgery (We were just shy a day of 4 weeks). The surgeons resident told us to take Will to Vanderbilt's ER. We called Mom and Joe who were headed to Rocky River, they immediately turned around and headed for our house. Feeling pretty guilty about leaving a very suspicious Jack, I decided to wait with him for Mom and Joe to arrive while Patrick went ahead and took Will to the ER. Before Mom and Joe arrived, Jack was sending me some pretty strong hints that he was staying with me, but luckily by the time they got there he was more than happy to leave with them.

Driving back to Vanderbilt was a bit surreal. There is a 1% infection rate with this surgery and in those cases the surgeons usually end up having to take the stimulator out. And once it comes out, there is no chance of getting it again. It is a "one and done" surgery. Fearing that if the infection was more than skin deep we would lose this incredible tool that had really helped in controlling and stopping so many of Will's seizures was a little hard to think about. So I tried really really hard to be optimistic and remember there was a Greater Power at work.

When I got to the ER, it was packed. I found Patrick and Will and started waiting with them. Despite being back at a hospital, Will was as happy and chipper (and silly) as ever. They had been there since about 8, and I had gotten there around 9. We did our best to make a bed using our legs and laps so Will could sleep while we waited (his usual bed time is 7:30). He did fall asleep, and about 20 min later they called him back. After seeing several doctors and a few nurses, we finally saw a couple neurosurgeons who decided we should stay and start some pretty intense antibiotics and take some blood cultures to determine white blood cell counts and things like that.

In the morning we met with the doctors and were told good news. It looked like the infection was superficial according to blood count levels, and that Will would go into surgery to have a p.i.c.c line put in place so we could administer antibiotics at home for 2 weeks. It was a little nerve-wracking, the idea of having a rambunctious almost 4 year old with something so delicate as a p.i.c.c. line in his arm. If I had been told this a few months earlier the task wouldn't have seemed as daunting since all Will did then was lay around mostly. But now he was almost as active and vibrant as most children his age, something I was not used to but relieved to get to experience again. While we were waiting for Will to go back into surgery, Will's neurosurgeon checked in on us and took a look at Will. He told us that we were pretty much doing over kill with all the antibiotics, but considering how if the infection did get inside his body we would lose the stimulator as an option, we needed to be extremely aggressive.

While Will was in surgery, we met with the a representative of the infusion company. She gave us a little mini course on how we would administer the medicine and take care of Will 's p.i.c.c. line. A little scary but she was very helpful and gave us all the information we would need.

Following Will's surgery, he was a hoot! The nurse taking care of him was highly flirted with. He told her he wanted to go home with her. When she let him know she had three daughters, Will said, a little dejectedly, "Never mind." Will still needed an X-ray done to make sure the p.i.c.c. line was where it was supposed to be. Somewhere between all of that, he snuck a kiss on the nurse. He's quite the charmer!

By the time there was a room available for us to stay the night in, it was close to 4 or 5. Although Will had been put to sleep, it still wasn't the same as really getting a good nap in. We ate dinner, and then went to do some of the few things that have helped us cope while being in the hospital: we visited the train display, walked outside to the court yard and fed the fish, then had Ben and Jerry's. After that, we headed back to our room for some much needed sleep. During all of our hospital stays we have learned how to speak up for Will's needs a little better. When we asked the nurses about what would be happening through the night, we were told a ridiculous amount of times they would need to wake him for medicines that (in our opinion) were not necessary. We tried to very clearly and nicely explain Will's need for sleep, and that we didn't want him awakened for anything that wasn't absolutely necessary. We've almost always had great nurses at Vanderbilt, and that night was no different. They were very respectful and passed the word along to the doctors caring for Will. Will did need antibiotics throughout the night, but the nurse who did this was amazing at coming in as soon as the pump started beeping, and sometimes before it started. So impressed with her!! And thankful for all the ones like her! Unfortunately over the past 48 hours, Will had just not gotten the necessary amount of sleep that his brain needs, and he awoke at 4:30 with a seizure. Thankfully it ended with no need to administer the rescue medicine.

The next morning, we met with the resident neurosurgeon who gave us the ok to go home, and continue the antibiotics at home. Feeling a little overwhelmed with medicine delivery times and a schedule of medicine that dictated preciseness, we headed home. But first we stopped on the 6th floor. While there I had checked Kelsi Caten's caring bridge website and found out that she and Rosanne were there. Fearing to wake anyone by calling, I went to just drop a note off at the nurses' station. Amazingly as the elevator doors opened up to the 6th floor, I saw Roseanne! We were able to talk for a few minutes about Kelsi's and Will's very different medical issues (Kelsi has been battling cancer). I have so appreciated Roseanne's strength as I've read Kelsi's website. It is always nice to visit with someone you love and respect even if it's just for a few minutes. I'm so happy it worked out that way. That I actually got to deliver my message myself.

Upon arriving home, I noticed that the nurse who discharged us didn't quite give us all the information we needed about when to administer Will's next dose of medicine, but once we got that cleared up (just a minor setback), we were doing pretty good. Will's medicines were vancomycin and meropenem. The vanc was taken every 6 hours and the meropenem was every 8. Getting used to that schedule was a bit tough, but Patrick and I make a great team. We did 6, 12, 6, 12 for the vanc and that usually took an hour long to empty. The meropenem was 7, 3, and 11, and it only took around 30 minutes. I liked that one a lot better. The other thing about the medicine was that it had to be kept in the refrigerator, but administered at room temperature. So an hour before the dose was to be given, we needed to set it out. It was very time and thought consuming process, but we were thankful to have this as an option so we could be home instead of in the hospital.

Those 2 weeks of course seemed like they dragged on and on. Patrick and I got very little sleep. But they ended, and we survived. The infection is gone and we are back to our "normal." And I am so very happy to be home and see both of my boys doing very well. We have Many many things to be thankful for.

Will's Surgery

After a lot of praying, fasting, talking, and a lot more praying and talking, we decided to move ahead with Will's scheduled VNS surgery. He got to ride to the surgery room in a cozy coupe to lighten some of the anxiety over the surgery, which I think is a brilliant idea. The surgery then began around 10:30 and was over about 12:30. I was so anxious for it to be over. We met with Dr. Pearson, the neurosurgeon, and he was very pleased with the way it went. He gave us our instructions, and we were able to go see Will shortly after that. He was still very groggy from the anesthesia and didn't want mommy to hold him, but dad. Surprise surprise (I'm starting to get a little jealous).

We are now in our room for the night (hopefully) for observation, and will go home tomorrow. Will laid in the bed for most of the afternoon. At one point he thought he might get up, but then when he felt too much pain and decided he'd better just stay put. They made 2 incisions. One on his neck to get to the vagus nerve and one on his chest to implant the stimulator. Papa J came by for a visit and we have stayed busy since playing Thomas the Train UNO and Will taking silly pictures of Patrick. We again are so so thankful for all the prayers and thoughts for Will and our family. DON'T STOP! :) Seriously. Please please don't.

Something sweet Will said that I didn't want to forget while we were waiting for the surgery was, "I miss Jack. I want him to come to Vanderbilt." I for one hope he never needs to come here, but can appreciate the sentiment. We all miss him but know he's in the best of hands. And one more thing. In the picture of me and Will I told Will to say, "I love Mommy!" but he chose to say, "I love m&ms!!" Stinker!

Home Again

Thursday morning Will had his blood drawn to check his blood levels for the medicine. From 7 to 10 we noticed 8 seizures. 8 seizures in 3 hours! Normally we would see 8 seizures in less than 10 minutes. It was this remarkable change in seizure activity that led to Dr. Wheless' decision to send us home. Will's blood levels were only at 30. The Dr. wants to see them at 100. So he has added an extra dose of medicine to be given. We are supposed to go on Monday and have his blood drawn and levels checked then faxed to him.

After speaking with the Dr. he gave the go ahead to have the electrodes removed from Will's head. Will was not excited about this. Imagine having 30 small metal circles super glued to your scalp. Most of them came off pretty easily with a solution they use, but some of them were really fastened on. His head was very tender and very aggravated where the electrodes had been.  We gave him his first bath since Saturday night and tried to shampoo the rest of the glue out. We were mostly successful, but he still has some white spots that look like he has been painting and gotten it all in his hair.

We were discharged at 4 and were home by 9. We met some other families that were dealing with seizures/epilepsy all varying in their severity. The first was a little boy Will's age who had had seizures since he was a baby. He is still yet to utter his first word. A 14 year old girl who has had tonic clonic seizures since she was 18 months old. They were from North Carolina and had previously spent 9 days at the Cleveland Clinic. Then there was an 8 year old girl from Little Rock. Bailey. She was so weak she needed to be pushed around in a stroller. Not only was she battling epilepsy, but cancer too. I didn't meet her mother, but her father made a really big impression on me. He was so patient, so kind, so positive with her.  I can't imagine how tired and worried he must be. But he didn't let it show, and that in and of itself is exhausting. As we talked he told me they had been in the hospital the previous week and sent home on Friday. However after they got home her seizures became so out of control they had to be readmitted. Bailey and her family are now a part of our prayers.

We have been home for almost 2 days. Will is still having 10-15 seizures a day. He seems to be tolerating the high dosage fairly well. We have noticed a new rash on his legs. The Dr. said typically allergic reactions start on the abdomen or ribs. This was the case when Will was prescribed cefdinir, and he itched really badly. We are just to keep an eye on it for now. While we are not "out of the woods" yet it is good to be home and altogether again. Will and Jack really missed each other and are happy to be get to play together...mostly.

We are so grateful for the many thoughts, prayers, fasting, gifts, and deeds that have been offered and given for Will's and our behalf. It is overwhelming at times. Very humbling. There are many who have offered and done so much--without being asked. just trying to lighten our load. We love each of you and are so thankful for you. Again and again we have been reminded of what Spencer W. Kimball said,

"God does notice us, and he 

watches over us. But it is usually through

another person that he meets our needs. 

Therefore, it is vital that we serve each other...

So often, our acts of service consist of simple

encouragement or of giving mundane help

with mundane tasks, but what glorious 

consequences can flow from mundane acts 

and from small but deliberate deeds!" 

LB Day 2

Tuesday has been more of the same. Lots of seizures. After viewing the video of Will  along with his ongoing EEG, Dr. W. has decided to change up Will's medicines. Depakote and ethosuximide. He feels encouraged that this combination should make a pretty good impact. Will it be good enough though we don't know. Will is still happy and pretty easy to get along with.

A few highlights from the day:
-The playroom is Will's favorite place. Even though the floor looks like your typical hospital floor it is some   kind of absorbent flooring so if a child falls on it like during a seizure it absorbs the impact. Pretty cool and a lot less worry for mommy and daddy.

- Will had his first Peanut Butter and Jelly Sandwich in 2+ months! He even ate the crust. When he saw the sandwich he said, "I get to eat these whole 2 sandwiches?!" It was one sandwich cut in half. On the ketogenic diet, Will would be lucky to get a quarter of a slice of bread, spread so heavy with butter and oils it would practically be soggy.

- Right before Will's nap the Arkansas State football players stopped by to check on him. They were really BIG guys. Will kept his eye on them and smiled and even showed them his muscles. I can't believe I didn't get their picture with him.

- Will received a beautiful soft fleece blanket that some one makes a donates for the children in the EMU. He loves snuggling with it.

- Still a lot of seizures, but we think we can see a small decrease. We are cautiously optimistic.

We Have Arrived Le Bonheur Day 1

We arrived bright and early at the hospital at 5:30 am. After being admitted, Karen, Dr. Wheless' nurse brought us to our room in the Epilepsy Monitoring Unit (EMU). She spoke with us for a few minutes about what was on the agenda for the day. Then the nurses started arriving each asking me the same 20+ questions. While we waited for the MRI, Will played in the playroom that is specifically for the EMU children.

When it was time to head down to Radiology the nurse began pulling Will down in a radio flyer wagon. True to his character,  he decided he preferred Daddy holding him. At Le Bonheur they have a program called "Child Life." Their job is to basically help the children cope with what is going on. When Will was about to get his IV a lady came in and started distracting him with books, toys, and bubbles. This helped in a HUGE way. Will let us know he didn't like it, but he didn't freak out like normal. We love Child Life. Will of course chose for Daddy to be the one to take him in to the room where the MRI machine is. Patrick said he didn't cry or act scared just asked for his blanket and was asleep. Patrick and I then went to the cafeteria to eat breakfast which means we technically had a date. :) Sad. I know.

After Will's MRI we met Dr. Wheless. He is chief of pediatric nuerology here and has been the same at St. Jude. He asked for a very detailed history of Will's seizures. He thought we should go off the one medicine will has been on since the onset of his epilepsy last May, keppra and the B6 supplement we started a month or so ago. He would keep Will on the zonegran for now. Following this shake-up he added and "No more diet. Don't go crazy on the carbs. Just get him some chocolate milk." Will loves this guy. Not only has he raised the red flag on chocolate milk he wears cowboy boots and has a beard. This in Will's book means you are the coolest. We really like him too.

"Dump Truck"

After Will had his breakfast and finally released the death clutch on the empty carton of chocolate milk, he had about 30 electrodes hooked up to his head. This took 35-45 minutes. Will didn't care for this but was a good sport for the most part. They ran a few tests with him trying to induce seizures, and then he was free to go back to the playroom. Patrick and I were given instructions that every time Will had a seizure we were to press a button. So we did. Probably 100 times or more that day. By that evening we were told to only press the button for myoclonic/atonic seizures or "drops" and tonic clonic (gran mal).

At some point during the afternoon the Dr. came back by to let us know Will's MRI looked great, but he has 5 sinus diseases. WHAT?! Apparently that just means infection. Disease is a bit of a strong word. And scary. Dr. W. said, "No big deal. That's a lot easier to fix than the brain." We started an antibiotic soon after that.

Will's seizures seemed to increase throughout the day. That didn't change his overall pleasant mood and willingness to do what was asked of him. It was a very long day, but we are so grateful to be here. We need their help.

Keto Kid

When all the doctors and nurses are telling you, "This is a hard diet." believe them. And believe them we did, we just could not have imagined how hard it would be.

Will's favorite things to eat before the diet were things like peanut butter and jelly, gravy and biscuit, pancakes, pizza, oatmeal with blueberries, i.g. After starting the diet: hot dogs, peanut butter (with lots of extra butter), coconut oil and fruit, whipping cream with MCT oil and stevia and vanilla flavoring (I think this tastes pretty darn good myself), ranch (LOTS) with butter added in and a (VERY) few pieces of chicken, and scrambled eggs literally swimming in butter. That's not all he eats, but pretty much. He has lost about 5lbs and sometimes can't understand why Jack gets to have seconds or a piece of bread; that is really hard for me to explain and live with.

When we first started preparing meals for Will, it would usually take 30 minutes to an hour. The reason for this is because everything has to be weighed on a gram scale. If he can have 33 grams of eggs I have to crack it, whip it, then measure it out on the scale to be exactly 33.0 grams; no more, no less. Then measure milk out  to 10g, add some whipping cream measured in grams, a few grams of cheese, and a whole lot of grams of butter; it is intense in the kitchen 'round here! But we are getting better.

Will has been remarkably easy to get a long with. I attribute that to lots of prayers. He is still having seizures, but most days I can count them on 1-2 hands. Every week I'm emailing or calling the dietitian and tweaking his diet for his needs. Recently we had to add 10g of MCT oil to every meal to get the ratio higher. That oil is a godsend. It is tasteless, odorless, and doesn't leave a oily residue in your mouth. A lot of times it is the only way we can get the fat high enough for Will's meals. Every morning and afternoon we check Will's ketones. He pees on a little stick so we know how ketotic he is. 160 -180 is the goal. Jack makes me laugh when he goes into the bathroom and says "ketones, ketones," meaning he wants to check his ketones. Oh how I pray I never have to check his ketones!

On Saturday the boys got haircuts and it's customary to get a sucker after you finish. Jack went first and before we could tell the lady not to offer one, she offered. We didn't have the heart to tell Jack no; his life has changed in a big way too. I was sitting by Will and he expectantly and hopefully looked at me. I reminded him about his "magic" diet and that I knew he'd like to have a sucker, but that wasn't good for him. I instead offered to take him to Publix after his haircut, and let him pick out some jello (sugar free mixed with whipping cream). He happily agreed, and my heart broke yet was full with love for this little boy and our Heavenly Father. How good He is. How merciful, how patient, how kind...

Vanderbilt, More Medicine, and a New Diet

 After trying unsuccessfully for a little over a month to get Will's seizures under control, Will's amazing neurologist, Dr. Sharpe, met us at Vanderbilt Friday evening. For the past several days when Will would wake up from his nap he would have clustered seizures for at least an hour but usually longer. When the seizures wouldn't stop despite the increase in medicine, he told us to meet him there and we would try to get the seizures under control. Thankfully Mandy and her family were at our house so we had someone we trusted and Jack trusted to leave him with. That was a huge blessing despite the chaos, and I'm so thankful it worked out that way.

We loaded up the car and headed to Vanderbilt. We walked into the ER entrance right after Dr. Sharpe and were able to be seen almost immediately. We talked about the course we would be pursuing to find the right drug for Will. The hospital had no rooms for Will so we would be staying the night in the observation unit located close to the ER. But first Will had to get an IV so we could check blood levels for drug toxicity and administer ativan, a drug they use sometimes to try and stop seizures-- Think valium. The first time the nurses tried to start the IV they poked through the vein collapsing it. This must have made them only more nervous/flustered considering the heart breaking cries of a 3 1/2 year old who doesn't understand what's happening, because it wasn't till the 4th attempt the nurses were finally able to get the needle in. That was pure torture for Will, Patrick, and me. If we had it to do over again we would have asked for someone else to come in and try. Lesson learned.

Will was given his ativan and vitamin b6 and we were sent to his room. We met the nurse there and while she was very very nice she didn't quit coming in until after 1 a.m. I understand the need to come in and get everything in order but just coming in over and over again because you keep forgetting to do things...that would be frustrating for any child/parent who are at the hospital, when your child's seizures are increased because of a lack of sleep--maddening. Anyway. Because the ativan makes you feel soooo good Will wasn't easy to get to sleep. I eventually had to hold him standing up and rock him. The 36lbs of 3 1/2 year old finally went to sleep. I offered my heartfelt thanks that I didn't have to do that any longer, and how thankful I was to be there so we could get the help he needed.

The next 3 days went about the same; Seizures every 2-3 minutes, and different medicine combinations (euthosuximide, phenobarbital, banzel, clobazem, dilantin, felbamate, zonegran, keppra, depakote, vitamin b6). Nothing seemed to help. Needless to say we were getting pretty discouraged.

On Tuesday morning when Dr. Sharpe came by to make his morning rounds we decided to take a new course of action. We knew that when you try 3 anticonvulsants and they don't work the likelihood goes down dramatically of finding anything that will work to 33% then after the 4th it goes to 11% (if I'm remembering correctly). We discussed VNS surgery. "The procedure goes as follows: an incision is made in the upper left chest and the generator is implanted into a little "pouch" on the left chest under the clavicle. A second incision is made in the neck, so that the surgeon can access the vagus nerve. The surgeon then wraps the leads around the left branch of the vagus nerve, and connects the electrodes to the generator. Once successfully implanted, the generator sends electric impulses to the vagus nerve at regular intervals. The left vagus nerve is stimulated rather than the right because the right plays a role in cardiac function such that stimulating it could have negative cardiac effects" (info from wikipedia). It is an adjunctive treatment for certain types of epilepsy. I don't remember all of the statistics surrounding VNS, I just remember that it might help but it might not and that it is very expensive and insurance would have to "ok" it first. So in the meantime the doctor suggested trying the Ketogenic Diet. We were familiar with the diet and had done a little reading on it because we knew it might likely be something we would have to try. So our prayer became at that point that our insurance would give the "ok" for us to stay in the hospital so the dietitian could teach us how to do it, and we'd have her right there to help and ask questions.

We met with Ms. Mary (love her!) a couple hours before lunch, and she told us to order him a pizza (his last one :(  and we would start a 1:1 ratio (1 fat:1 carb) at dinner. We would then increase over the next few meals up to 3:1. The classic keto diet is 4:1 but they try 3:1 first because it often will be enough.

The next 2 1/2 days went pretty much the same: Begging Will to eat, Will throwing up, Will refusing his meds (we no longer could give him liquid medicine because those contain sugar. We had to crush the pills add water and syringe), and fewer and fewer seizures! It was amazing. We could actually keep track of how many he was having, and they were significantly down.

Thursday we were discharged and almost as unprepared for what it would be like to continue the keto diet at home, as we were when we brought Will home as a newborn. It was a tad scary.

We were so grateful that Mom and Mandy took such great care of Jack. He loves them both so much, and so do we. We missed him but knew he was having more fun with them then he had probably had in 6 weeks. Will's situation had kept us pretty much home bound and inside. I know there were so many prayers and many people fasting for Will and our family, along with other kind and generous acts of service. Your prayers and ours were answered. Maybe not the way we thought was best, but he laughs! What gratitude we have we could never form into eloquent sentences. But thank you. Thank you. Thank you. Our cup truly "runneth over."