Seizure #4

It was 6:55 in the morning, Teydon had slept all through the night. Dan had gotten up to go to the bathroom and soon after he laid back down we heard "the scream", we went running in his room and sure enough he was having a seizure, we would recognize that scream anywhere. When we got in there he was stiff, Dan ran to the room to grab his phone and by the time he came back he was convulsing. It lasted 1 min 30 secs. Though this one was a little easier than the first 3 it still is so hard to see him go through them. He went 2 weeks without having one! Ya! Hoping they keep getting further and further apart. We knew that it was possible for him to still have some, hoping the natural drops will stop them completely. The only way, right now, to get them to stop is to put him on a drug and we still are not ready to do that, we are going to give the natural drops a chance to work. Please continue to keep us in your prayers for we are not out of the woods yet. Thank you so much for all you support!

Nutritionist, MRI and EEG results!!

We scheduled Teydon and MRI for today and on our way down, we were in Roy when his seizure Dr. (Dr. Lloyd) finally called us back with the EEG test results. He had been trying to get in contact with the head of Neurology doctor to see what his opinion was on the abnormal results. Then the Dr. had gone on vacation so Dr. Lloyd had a hard time getting in touch with him. Wish he would've just called and told me that, I wouldve of been just fine knowing he was at least working on it, it would have been a lot less stressful on me.  I'm going to try my best to describe the results. They call it Generalized Seizures, they are the most common and non harmful, so the best seizures to have if your going to have them. His seizures are affecting the whole brain not just one part which is good, cause if it's only affecting one part of his brain it means serious problems. He said that 70% of seizures have no known cause and it is not abnormal for them to just start all of a sudden. They see them start when people are 0-2, at 5 yrs, adolecents, and 60 yrs old. These seizures are ones that he can grow out of. We have decided at this time and the dr. agrees that we won't start him on any medications at this time, we're going to keep trying what we are doing, more sleep, keeping him hydrated, and his natural drops. If we can not get them to stop we will then think about putting him on a medication for them. We are going to give the natural drops a chance to work and rearranging his schedule and hope that will control them. Since it had taken him so long to get back in touch with us and we couldn't get in contact with him, wee worked with Teyds pediatrician and got an MRI scheduled, that's what his ped said they usually like to do along with an EEG. We scheduled it for today so when he called us and we were already on our way there we asked him if we needed it. Dr. Lloyd told us that usually with these type of test results he doesn't usually do an MRI but said it was up to us if we still wanted to do one. So we figured since we were pretty much there and already had it scheduled we might as well go through with it. It was more for our peace of mind than anything, we want to make sure we have all our bases covered and nothing will have been missed. 

MRI: It is so hard being a parent sometimes and it was so hard to see our little boy life less (or a nicer term sadated) laying, head strapped down on a table, being moved under a huge tunnel. We are really hoping this is the last test we have to do, I don't know that we can handle putting our little guy through anymore. I know that it is way harder on us than it is him, so I don't know if I can handle it 
for my sake not his :). He's a tough little guy and such an awesome sport. He is getting pretty sick of going to the dr. and getting tests done. Putting the IV in was not very fun either, we had to pin him sitting on Dans lap and try to keep him calm, with his IV hand tucked under Dans arm, which was in excrusuating pain, for a two year old anyways. It was quiete the little pretzel we had him in. Five minutes after it was in he kept looking for a Dr. to take it out, he was done with it. He did get like 4 prizes for being such a good boy, 2 cars, bubbles, and play dough. They left the prize box in our room so he continued to get prizes our of it. I figured we'll end up paying them enough he can have 4 little prizes. Once he was sedated and in the MRI we were able to go grab some lunch, the test took about 35 min. He was still asleep when we got there, we waited for about 40 min then they woke him up. They tried being nice about it for about 15 seconds then they just forced him to sit up and then shoved a popsicle in his mouth, which did the trick. He was still a little out of it but did good he wasn't cranky or anything, nothing like his father. We waited about 15 min to make sure he came out of it ok then we were sent on our way. He ate a couple crackers then crashed by the time we were out of SLC and slept until we got out of Sardine Canyon. I am so proud of my little boy for how strong he has been through this whole thing! Everything we go through I am reminded of how MUCH I LOVE our little boy!!! Even though medical stuff is super stressful and taking years off my life I am so grateful to be his parent and to have him as my son!! He has captured so many people's hearts, 
everyone who meets him falls in love with them!! We are so blessed with such an awesome little boy!! 

Nutritionist:  I took him to his drop check up on Tues. the 7th. His body is getting balanced out and can now begin the healing process!! His drops were lowered but then he was given 2 other drops to take. His lithium and his calcium are low so taking drops to get them back up. I was thinking I'm surprised his calcium is low cause he drinks a lot of milk but then got thinking we've been pushing more water so he hasn't been drinking as much milk. We go again in two weeks to check his drops and hoping we have more good news! His nutritionist was very happy with his progress and though she says we may experience more seizures but that he is on the right track to not having any at all. Keeping our fingers crossed that we can do this naturally, and that a year from know this will all be a memory and a learning experience.

Thank you for all of your love, prayers, support, and concerns for our little family. Hoping we have been through the worst. And hoping we can return the favor when you are in need! We love you all so much! 

EEG

I hope this medical stuff gets easier to deal with as we go along, cause its tearing me apart. Again we had to hold our little guy down while the EEG tech attached the 25 wires to his poor little head. Our little guy that was sleep deprived, it was not fun. He kept yelling at us "STOP IT!" " I'm done" "all DONE!" I tried to distract him with reading books to him but it would only work for a little while. Finally once they were all on we only had one last step and that was to wrap his head in gauze so that the wires wouldn't fall off, he didn't love that part but was ok with it. He then got to take a 25 min nap while they did the test. It didn't take long at all for him to fall asleep. Poor guy wish he could've got a little more sleep. At the end of the test, they wanted to see if he was light sensitive so after he had been sleeping for 25 mins they turned a strobe light on to see how his brain reacts to it. He did NOT like that at all, it lasted about 1.5 min. The tech was really good to work with and really helped us get some answers. He called Teyds dr, dr Lloyd then when he couldn't get ahold of him he called an attending neurologist for us. Who looked over the test and said that there was epileptic activity but it wasn't anything serious enough that he needed to be admitted for. After the tech had told us this we were headed out when the tech met us in the hall and told us Dr. Lloyd had called him back and said that he was in vernal at another clinic but would look at his EEG and call us tomorrow to discuss it with us.

There were multiple times that I just wanted to just sit there and bawl my eyes out but as I'd get upset I would either see Teyd in discomfort or he would see me upset and he would get upset too and tell me it's ok mommy and start crying too so I had to keep it together for my tough little man! Hopefully I can get it relieved sometime before bed or I'll have another sleepless night.

On top of having his EEG today last night he had a fever of 101.5 that just came out of the blue. He woke up with one too so I called his pediatrician to see if we could get him checked out before we left for SLC. 4 of Teyds cousins have strep throat so wanted to get him checked for it. They did a rapid strep test which came back negative but where he had been exposed to it they put him on antibiotics anyways. They sent it in for a cultural test, we'll get the results on Fri. They said the rapid test is 20% false so the cultural test will tell us for sure. But where Teyd is having enough health issues his Dr. didn't want to weaken his ability to fight off seizures with dealing with strep throat too. Love our pediatrician he is awesome and very understanding!

One of these days I am hoping we can get back to a normal non sick life. My poor little guy can't catch a break. And mommy needs him to start catching one! My heart is SO heavy for those that deal with sick children on a daily basis and I hope I have your strength to get through this. I truly look up to you and feel for you!!

We hate weekends!!!!!

Saturday night the 28th, at 8:20, Teydon had another seizure! This makes 3 in 3 weeks! What is going on with my baby!!?? It was the same tas the last ones, blank stare, then a scream, then tense, then limp and convulsing, drooling, and this time grinding his teeth. This one lasted about 75+ seconds. Dan had taken Teydon inside to put him to bed, working on getting him to bed earlier to hopefully avoid seizures. We were outside so Teyd was not happy about going inside, he was very upset about it. I was working on watering the garden when Dan yelled out the window to "get in here!" I knew exactly what was wrong! I took off running and met them in the hall, by the time I got there Teyd was limp, drooling, and convulsing a little bit. I don't know if I am strong enough for this!! You would think they would get easier the more you deal with but they don't, I think it's almost harder cause you are already stressed from the first one, that the stress just piles on top of each other, making it harder to deal with it. It was a very hard 10 mins for me, feeling like a failure as his mom for not being able to protect him from this, feeling like what if I had done this different maybe it wouldn't have happened. It is a good thing he is out of it just after so I can get control of myself. I'm afraid if he was coherent afterwards he would be very worried. I'm going to vent now so you may want to stop reading at this point. I am so frustrated with the medical department and myself for not being more demanding for my so s care. After he had his second one we called the on call neurologist who said she would put in a request for him to have an EEG, she didn't tell me to call anyone or anything, so I figured they would call me Monday or Wednesday to schedule it. Well mon and wed came and went and no call. So Thursday I called and she had never turned in a request!!! The cant schedule an EEG without a dr.s request, are you kidding me! So I left a message for the nurse to send in a request, so today I call to make sure it got put in cause obviously they can't do it on their own. And ofcoarse no they haven't turned it in. What is wrong with these people!?! I understand you deal with this everyday and Teydon doesnt mean anything to you but he means the world to us, get your crap together!! The person I talked to said she would send them an urgent message to make this a high priority, we'll see if that works. I feel so helpless cause there is nothing I can do about it until a dr sends it in. Primary children's is supposed to be so great but I would not consider the neurology center to be that great. If I don't get any answers today I am going to go through someone else, his pediatrician, or U of U. Three in three weeks is not good, we need to figure out something and now!! Most people who know me know that I am a nice person and don't like to be mean but if I dont get any results I may come unglued and I really don't want too but this is my little boy were talking about and momma bear will come out!! So if it wasnt bad enough just having him have seizures I cant get any doctors to do anything about it or to take it seriously. That feels better to get that off my chest! On a different note his Nutritioal Consultant has been amazing! She is very dedicated to his case and wants to help us get some results. We just want the medical field to rule out a major brain issue, once they do we will be a little more at peace. And go full force into a natural cure! The drops he is taking are going to take a little while to work, which I figured they would take longer than 4 days to cure him. I really hope we can cure him naturally and don't have to put him on meds. We will do what we need too but really don't want out little guy on a seizure medication, the side effects don't sound very appealing to us. We want our little guy to be cured but to be our same little boy at the same time! It is so hard cause when he isn't having a seizure he is completely perfect, he is smart, walks and talks great, understands so much, is perfect. It makes it hard to believe there is something wrong with his brain where everything else is working perfectly. Though I do not like this trial, I am so grateful for the comfort of my heavenly father and my savior. I know that I will not be given any trial I can not handle, hoping my hidden strength comes soon. And I know that I will be strengthen and will learn something through this trial. I would not be able to do this without them in my life, they are the only ones who truly know and understand me and what I am going through. This gives me so much comfort! One of these days we'll be able to look back on this and hopefully having grown from it. Thank you everyone for you prayers, love, concerns, and support! Keep them coming! Thank you!

Bear Necessities

Today we took Teydon to Bear Necessities in Montpelier to June Marie who is a Certified Nutristional Consultant, to see if we could take the natural way to get rid of his seizure. To learn more about what she does check out her website at www.bearnecessities.us She did Bio Energetic Testing on Teydon to check his energy levels and see what and if something was out of wack that we could fix. We found a few things that were going to work on fixing. I don't fully understand all the energy things but we feel really good about taking a natural approach to getting his seizures out of control, we don't want to put our little guy on a medication unless we absolutely have to. I am going to try my best to explain the test reslts. Some of the things that were off, were his nervous system is really stressed out, his body has been trying to recooperate from his vaccinations and has had a hard time with it, and then at some point in time he was exposed to some type of chemical that his body has not been able to get rid of. What I take from it is his body was trying to work out his vaccinations when he was exposed to some type of chemical and his little body just couldn't do it by its self anymore and so it was giving us a sign telling us it needed help. It would have been a lot easier if it would have just come out and said that not through seizures. A Dan and I were trying to think of a chemical that Teydon had been exposed to we couldn't think of anything until we were on our way home and Dan suggested the lacquer and stain that we put on our basement floor. We know that we has around in the house when we were doing it but thought we had it ventilated well enough with fans in the windows and an air purifier. We are not totally sure that that is was what caused this but it is a guess that it didn't help the situation. Teyd is taking three different drops, three times a day and we go back in two weeks to check his levels again and see what we need to do next and to see how things are looking. We are really hoping that this works and that we don't have to subject Teydon to seizure medications at only 2 years old. I have not heard for the EEG people yet to schedule our appt. hoping they call tomorrow. We are still going to do some testing just to make sure we have everything covered. We really just want our little Teyder Bug back and to get back to some what normal life. We feel very hopeful that this natural approach will work. I will continue to post Teydon's progress as we continue on this journey. We want to Thank everyone for your love, concerns, and support, we really appreciate all of you and value you in our lives! THANK YOU!

Another one!?!

It was a normal Sunday, except we made it to chuch 10 mins early today. Until during sacrament meeting it was around 1130, I was reading scriptures about trials and happened to look down at Teydon to see what he was doing. It was not what I wanted to see. He was just staring off not moving and right then I knew what was happening. First thought NOT AGAIN! Second Dan. As soon as I acknowledge what was happening he let out that terrifying, my worst nightmare scream. Dan then scooped him up and took him out in the foyer. I was looking to gather up our stuff and once realizing it was everywhere I just left it and hurried to my boys. When I got there Teydon was foaming/drooling, convulsing, and choking on his bread he was eating just minutes earlier. I had Dan lay him on his side so the bread and everything would fall out of his mouth. A few seconds later he stopped moving and was out of it. We tried to get him to spit out the remaining bread but he wasnt coherent enough to understand what we were saying and he wasn't choking on it anymore so we just left it and eventually he swallowed it. He never came out of it he went from his seizure right to sleep. Our 2nd counselor in the bishopric and a next door neighbor came out to help us and bring us our stuff. We are so blessed with amazing neighbors, ward family, friends and family!!! Once the seizure was over and he was asleep we took our little boy home. We called Teyd's grandparents to let them know it had happened again and called Dan's brothers to come help us give him a blessing. So many many people love and care for our little guy so much! He has touched so many peoples hearts, we are so lucky to have such an amazing little boy!!! We love him so much and it kills us to see him go through a seizure. He's just so little and so helpless! Dan and I joke and say why do we have kids they cause way way too much stress but when you feel that love, that heart break that you have from them suffering, life would not be worth it if you didn't experience the love you have for your own child. I have never felt anything like it, it's an amazing feeling. I don't know how to describe it with words, the love I have for Teydon is so great so powerful! I am so grateful to be his mommy, I would not give him up for anything, he means the world to me! While we waited for family to arrive we called Primary Children's on call neurologist to see what we needed to do. Where the seizure only lasted a few seconds there was no concern for brain damage and they wouldnt have the tests we needed available at the ER so there wasn't anything we needed to do today. The on call dr was going to get in touch with Dr. Lloyd, the dr we saw on Tuesday, and see what he wanted us to do. She said she would call us back when she got a hold of him. Finally at 8:30 she called us back. They are going to call us Monday, tomorrow, to set up an appointment for an EEG. She asked if we wanted to start him on Kepra before his EEG but we told her we would like to wait and see what the test results say. Teydon had slept for two+ hours and woke up to a house full of people. We received our blessings, which were amazing, I love the priesthood!! After the blessings his cousins came in to see him and that was the end of his seizure ordeal, he hopped off my lap and chased after his cousins as if nothing had happened at all, and has been perfectly fine ever since. It sure is ALOT harder an his parents than it is him. Which I am ok with, I don't want him to suffer anymore than he has too. He is such a tough little guy! Please pray for our little guy that we can get some answers and get these things under control. We appreciate all the love and support from our families, friends, and neighbors, you all mean the world to us! THANK YOU for everything!

Blankie!

Teydon is such a blanket boy at the moment he has 6 blankets in his bed; 5 of them his, 1 of them mine. :) When he goes to bed at night we usually have 3-4 rocking with us, and when he wakes up we have to take 2-3 with us. He doesn't really carry them around thy just can't stay in his bed without him. :) It is so cute and it totally gets that from his mom, I have to cuddle with a blinker in order to fall asleep, it's so comfy. I like that there are some things that he does like mom and not all like dad. I haven't wrote much about teyd lately and what to write some stuff down so that we can always remember. He has so much personality and spunk. He started the last little to bit to be very sassy whether it towards me or towards drivers that get in our way. He'll yell at them and tell them to "get out of the way, NOW!" Or he'll yell "STOP IT!" which he gets that from me too cause we caught me saying it yesterday to Dan :). The other night we were outside laying on a blanket looking at the stars and Teyd proceeded to sing and show us his moves, singing "Check it out, check out my bum" while shaking it. Pretty sure he learned that from his cousins, Kendra and Kamry! When we were going to the derby the other night we were telling Teyd were gonna go watch some cars crash into each other he proceeded to ask us if he could drive one of the cars, he is 2 going on 16. Anytime he sees a tractor he asks if he can drive that one. Recently he has starting asking questions with questions: "what you doin, Huh?" "where you goin, Huh?" So CUTE! Though Teyd and I have our love/hate moments he continually brings joy and happiness into our lives. He is full of life and always keeping us going and on our toes. He loves to do everything that dad is doing and is pretty sure he can do everything daddy does. Some things that he loves: trucks, tractors, monster trucks (a new thing), Curious George, the Grinch, Mac and cheese, "waggermelon", outside, wagger aka water, Maryann, Kamry, camp trailer, and most of all loves being a BOY and doing BOY stuff. Now for the rest of the NewMyer Fam update. We have had a busy busy summer June was pack with Dan having a SAR training at Fish lake in central Utah. Teyd and I went and spent the week at grandma, and had a blast! I had YW girls camp at Mantua and You Conference in Manti, where we stayed at snow college in dorms, played water games, ropes corse, dance, watched the Manti pageant, and felt the spirit everyday. We bought a camp trailer a 5th wheel one so we've spent time getting it put together and ready for camping! We took it out over the 4th of July and loved it! Ive been working on some cosmetic stuff to spruce it up and make it more ours. With new curtains and valances. I received my iPad from Usbornes challenge, which I am writing this on now. I love it! It's the most high tech I've been in a long time. I had a booth in Henefer on the 4th with Usborne, it was really good made $135 in sales which will go towards our trip to Cali in Sept. It was fun to go the Henefers town celebration with my family that lives there still. Loved hanging out with them! Logan's fireworks were on the 3rd, we went to Logan's middle school and had a BBQ, played games and hung out until the fireworks. Teydon had a blast watching the fireworks with his uncle Steve. Also the last Friday in June we went to the Diamond H rodeo with the YW, Teydon looked super cute in his cowboy get-up that i through together quick, I was wearing a cowboy hat but Teyd liked wearing it more and he looked a lot cuter in it too! I think that has us caught up on our adventures over the last couple of months. We are enjoying life to its fullest and getting over the bumps that get thrown into the mix of it.