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.

Preschool Grad

Jack graduated from preschool last night.

He had told me he was nervous when they first began practicing for graduation about having to be on the stage, but after a few practices, he decided he could do it, and that was that. The night of the graduation, he said the prayer before dinner. In his prayer he asked Heavenly Father to help him not be nervous and do a good job. It was sweet.

On the way to graduation something happened. MENTAL BREAKDOWN.

He informed us he would not get on the stage, and that he would be sitting with us. We did our best to alleviate his nerves, but nothing worked.

You see, when Jack decides he can't or won't do something, there is nothing you can do. There is not a thing in the world you can say, nor any amount of money you can offer--Nonna said she wasn't going higher than $20-- no delicious reward you offer for indulging in afterward that will change his mind. He is his own person.

When we arrived I took him inside hoping I could still sway him. With the rest of his friends getting their robes on, Jack refused to dress. I pleaded. He stayed firm. Back and forth, back and forth. Sigh. We went to find a seat to watch. Nonna and Pa both did their best to try and get him to change his mind, but it didn't work.

Mrs. Anne, the preschool director, came and asked Jack if he would be willing to just walk across the stage when they called his name. He wouldn't have to sing or even put on the gown or cap if he didn't want to. He willingly agreed like this was no big deal at all, and went back with his class.

He did not sing. He did put on a robe. He did not wear the cap. He did come up when they called his name. And he wants to be an Astronaut when he grows up.

Little Guy, I'm pretty sure you're going to do big things.

Selling the House

Early in February we became interested in a piece of land in the Rockvale area. Patrick had been looking for about a year and finally found something that we thought we'd like. We signed a contract and started preparing to build a house--something I never ever said I would do. We started making preparations to get our house on the market. We listed it on the housing market today. Bitter sweet day. There have a been a lot of memories, good and bad, made here. Excited for the next step but grateful for the lessons learned and memories forged here. We will really miss this quite cul-de-sac with some of the best neighbors and good people I've had the privilege of meeting.

School Boy

I have dreaded the end of summer since spring. I knew in August my baby would no longer be considered a baby by nearly everyone but me. The things I hate about Tennessee Kindergarten public schools--well, the brief list-- 1. No longer a half day, but a full 7 hours. 2. Social development takes a backseat to academics. 3. So. Much. Wasted. Time.

After talking with a lovely lady who I admire a lot, I decided on Eagleville Elementary. This was not the school we were zoned for, and pretty inconvenient. But I felt like, after lots of prayers, lots of thinking, and a lot more talking (sorry, Honey), it was best place for him. And if it didn't work, I could always home school. :/

All through the summer, every time I thought about him being away from me, I was nauseous. I would pray and remember the little mercies that the Lord had sent or was sending to help me feel at ease and peaceful with this change. I don't want to forget those so I'm going to document them here. I was concerned about the distance from a hospital and how long it would take an ambulance to arrive. The first time I went there I noticed that the ambulance station was right next to the school. With Will's seizures and some of his personality he tends to have a higher anxiety about things. The smaller school size and class size felt so so good to me. When I met the principal for the zone exemption he was kind and mentioned that when he was younger he had epilepsy. I could have Gretchen Solomon as Will's first introduction to school!! Can't think of another person outside of family who would love my baby and make him feel special and safe.

The night before his phase-in day we went to his school's open house. I was feeling nervous and apphrensive again about this change and how he would handle it. At the Kindergarten meeting the teachers gave the parents a handprint cut-out. We were to write a note to our child that would be read to them on their phase-in day. Just looking at the handprint made me get tear, so I decided to bring it home so that I could blubber in private instead.

We got home and quickly put the kids to bed in order to get everything ready for the next day. I went to find Will's new backpack to put his supplies in. When I unipped it I saw a couple pieces of paper that had been drawn on and decorated with stamps, a stamp, a paint brush, and an Elmer's glue stick. This filled my heart with so much happiness and sadness. He was excited. So was I. When did he grow up?

The next morning, Patrick woke up early and went to Hardee's to get the boys gravy and biscuit for the first day of school breakfast. Patrick went with us, because I was scarred. He sat in the car with the Jack and Sam, while I took Will in. He was excited. He went right in. He kindly obliged and let me take some pictures, and then went to play. I spoke with Gretchen for a few minutes and then called Will over to give me a hug and a kiss. I walked out feeling happy and at ease. I had a few happy tears--grateful tears. It was easier leaving him than I thought it would be. I think partly because I am just so so grateful he is well enough to go to school. It was hard to be sad when I thought about how far we'd come. I'm so happy we can add this to his milestones.

"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.

I know I'm such a whiner. But I feel so low today. Not 100% sure why. The past few days have been relatively normal compared to the last week on a whole. I just feel discouraged. There is a "prophecy" that some believe that the rapture is tomorrow. While I don't believe in the rapture, I'm all for the end of the world...I think. Sound a little depressing? Yeah, it's been a tough week with little to no answers.

Vanderbilt Day 2

Will woke up bright and early. He pronounced his tummy hungry and we sadly told him he couldn't have anything until after his MRI. Poor little lamb. We tried to keep him happy but pretty unsuccessfully. Patrick being the amazing patient Daddy that he is took Will on walk after walk after walk around our area, all the while wearing dress shoes. We still had no clean clothes at this point and looked like a funny pair. He was wearing a button-up dress shirt, slacks, and dress shoes. I was wearing painting clothes. Yes. We looked like a match made in heaven.

Will was to say the least a handful. He was bored, exhausted from the previous day's seizures, hungry, and drugged up on medicine that is known to make kids aggressive and hard to control. It literally took both of us non-stop to keep him from hurting himself, us or just running around crazy. Finally, finally he fell asleep.

Mom, Joe, Brett, and my sweet baby came to see us. They brought clean clothes of others to us because ours were packed up in a moving truck somewhere. We were still very grateful to be able to change. Someone mentioned that Patrick no longer looked like Will's Dad but his brother after he had changed into some clothes of Brett's. Joe and Patrick gave Will a blessing. I held sweet baby Jack. We visited for only a few minutes when they came and told us they were ready to do the MRI. Aunt Marsha and Uncle Mike dropped in to see us which was a pleasant surprise. A few hours later we finally had the MRI done thanks to a huge scheduling screw up.

We were so happy to finally get to eat something and not keep Will happy and under control. We thought he would sleep and be happy after he woke up from the anesthesia. WRONG. BIG TIME. He was mad as a wet hornet when he woke up. He downed some juice, demanded more, and then threw it up. He finally calmed down. He ate some dinner. We gave him a bath in the sink and he was finally happy. He fell asleep around 9. And we weren't far behind him.

I gained a lot more respect and admiration for parents who have to deal with this sort of stuff all the time. It takes so much energy and patience and after only 24 hours I was exhausted mentally and physically.

The best laid plans

Mom, Brett, Will, Jack, and I headed up to the new house on the day following the closing of our old house (18th). Mom was going to start painting the Living Room Brett was going to do some sanding on my cabinets, I was going to do some painting in the kitchen, and the kids were going to cooperate :).

We got to the new house around 10ish William needed a major nap and Brett volunteered to help with that. Mom started in the living room and I did odds and ends and finally was able to start in the kitchen. At some point the Atmos gas man came and turned on the gas and showed me how to do some stuff and turn on the fireplace. When he turned it on, Oh my! it smelled horrible. Strong chemical smell we opened up the windows and turned it off quickly. The gas man told me that it smelled that way because they were Styrofoam logs. And if we burned them on high for about an hour with the windows open the smell would go away.

Sometime after he left 30 minutes? Will woke up. He had slept for about an hour. When he woke up he came and asked me for some juice. Brett was in the garage and Will kept going in and out. He smelled like gas out there and he decided to finally stay inside and play with Jack when I told him to choose where he wanted to play. Mom was painting and I was talking with her. I noticed Jack needed his diaper changed and went to change him on the floor. I thought Will was playing by me on the floor while I changed the diaper, but I just can't remember. I got up to throw the diaper away and when I came back to the Living Room I was listening to what Mom was saying but looking at the kids. Will was just laying on the floor and I thought that he must not have slept long enough. I just kept staring at him and then finally noticed his color was not normal. He was staring blankly, and I started calling his name. I hurried over to him to pick him up. He wouldn't respond, and he was completely limp. His jaw was clenched tight, and he had been drooling and there was some blood that came out of his mouth. His breathing was very light. I was terrified. I kept calling his name and begging him to look at me and begging my Heavenly Father to let me keep him.

Mom called 911 while Brett attempted to find a neighbor at home with no luck. The lady on the other end was giving Mom instructions to give to me of things to try and do. I don't remember all the things but I do remember that she told me to rub his sternum HARD with my fists. When I did this he let out the most beautiful sound of protest I think I've ever heard; He cried out. A few seconds later I heard the sound of an ambulance siren. I was saying thank You! thank You! Hurry! Hurry! When they finally arrived with what seemed like forever then but only a short time after the fact, I just felt such a release. I backed away from Will who seemed to be sleeping on the grass, no longer lifeless just sleepy, and gladly let the paramedics do their job. They looked at him and from my description said they thought it was a seizure. He still wouldn't really wake up so they wanted to take him to the hospital.

In the ambulance he finally woke up but still didn't act like he knew who I was or cared if I was there or not. I'd say William look at Mommy. He would slowly look over at the sound of my voice look at me for a few seconds and then look somewhere else. THAT really scared me. It wasn't until after we had been admitted to the ER for about 5 minutes that he finally clicked back to reality. He started crying for me!

While we were there, I recapped the story to doctors, nurses, and police officers several times. They took x rays of chest to make sure he hadn't choked on anything, and a CT scan of his brain. Patrick arrived about that time and made one little terrified boy and momma soo happy! The CT scan and xray both showed nothing thankfully. But while we were waiting, Will gave us another scare so the doctors decided to send us to Vanderbilt's Children's Hospital. I rode with Will in the ambulance and he fell asleep pretty quickly, and thanks to Brett dropping off his favorite blanket stayed that way till we arrived at VC. We met with several neurologists who thought it best if we stayed the night so they could monitor Will and get a MRI and an EEG in the morning. Blake and Dad came to see Will and keep us company. Mom and Brett ran the phone lines and kept Jack, and mom finished the painting in the living room.

They transferred us up to a room for the night. Dad and Blake were fixing to leave when Will had another seizure. I was holding him and he just yelled and lunged away from my body and started to shake. The Nurses came quickly and we sat there and waited 3 minutes for the seizure to end. I felt so helpless just watching and waiting and praying for it to end. When it did, I held Will for a few minutes till he calmed down and wanted to sleep.

Dad and Blake left, and Patrick and I took turns watching William sleep. He had been sleeping for about an hour when he woke up. I asked if he was cold he said yes. I went to get him another blanket when he started having another seizure. After this, the doctors thought it might be good to go ahead and start him on medication to stop the seizures. They hadn't wanted to do this because of the EEG but thought it was in his best interest to go ahead with it. After the medicine he seemed to sleep great.

Sending mixed messages

Maybe when he got into the peanut butter I confused him by grabbing the camera and taking his picture all the while telling him that that was a big no no. Maybe he thought that baking soda was an ok thing to get into, maybe he just wanted his picture taken? Or maybe he is just acting like a stinker?