Today has been hard, not sure why I was so emotional. I had a fun weekend with the family. We went to the cabin and then went through Yellowstone park.

Artist point

Posing with Grandma

Emmett not liking the overlook. He has a worried look in all the pictures.

Ever since Bren's surgery I have been different. When I returned home it was so good to be back. Now I feel like I lost a part of me and have forgotten how to be a mom/wife for a family of 6. I can't seem to get anything done. My house is a mess. I know we all say that but really it is disgusting. I am so embarrassed for any visitors. I forgot how and what to cook for dinner. I have no energy and just want to sleep all the time. I wish they had rehab for moms who have gone through traumatic stress situations and slowly introduce them back into there "normal" lives.

St. Anthony loving the awesome tank!

I am tired of always worrying and wish I was able to move on and accept my new life. It is funny to think back and I thought life was hard. Boy was I wrong I would love to have that life back. We seem to wish for what we had instead of make the best of what we have.

 I went to bed and had a goal of going through the clothes and getting rid of a lot of them and ended up not accomplishing anything. I went to the Dr. to get my bp checked just to confirm it is still too high. I am feeling irritated about that.

I went to lunch with my dearest friend. I love her so much. I couldn't hold back tears I didn't know were there and haven't been able to stop them. She is such a special lady and I love her so much. She sat there and let me spill my problems to her. She has had more than her fair share of trials as well. Yet she is so positive and faithful. She is such an inspiration and I look up to her so much.
I have been feeling like such a failure lately. Well all the time actually and I wish I could be back to my old self.

Tomorrow is Brendan's eeg and we get to stay up all night. So I am mean and making him clean his room. It is nice to only have him to focus on when he does it. During the day I don't have the patience and end up yelling at the poor guy. He is not thrilled but at least when he is done he is excited and proud of himself. Maybe I should do this with each of the kids. haha. Well now would be a good time to tackle my daunting clothes sorting.

Wow spring has really sprung around here. We have gotten so many new babies. We had 4 doelings born this year. We brought home 4 baby chicks and they are growing nicely. I think they are about 6-7 weeks now. We brought home 15 more chicks last week, they are cockrels.
Sage had her birthday yesterday, she wanted ducklings but they didn't have any. She was so sad so her dad talked her into a cool new incubator so she can order some eggs and watch them hatch. She is so excited!
Our pigs are doing pretty good. One is better than the other. Our little one has a prolapsed rectum and we are not quite sure what to do about it. But that's how it goes.
We put up a new fence around the perimeter of our yard and that seems to be keeping in most of the animals. Our dang dog seems to be still finding a way out. So we will have to watch her a little closer so we can figure out where we need to fix that.
Brendan is doing great in his new school. He has been there a little over 4 months and has made a lot of new friends. He is super excited for the nice weather so he can ride his trike. He did ride it with Jordan the other day. They went to there Aunt Tara's and when they returned Brendan collapsed on the bed and said" that's exhausting". It was almost 3.5 miles round trip and quite windy.
Jordan is such a smart little stinker. He had an inventors thing and he won 3rd in regionals out of 100+ kids. He is out growing his boyhood. He still has a tendency to be lazy and not help but that's a kid for ya. So proud of him.
Emmett has kindergarten round up today and is so excited to go to "real school". Hopefully the excitement stays all through school.
Chris is doing good keeping busy. He had us a little scared last week. He has had a lump on the back of his neck for about 6 months and the NP said we needed to get an ultra sound done to see what was going on. Then after that we needed a MRI so that scared us because they seemed pretty concerned. Luckily everything came out o.k. it is only a lipoma (fat tissue capsule). What a relief!
Well tha'ts about it for the excitement on our little farm.

Whats new in 2014

Wow it has been too long. Life has been so crazy busy. We have been home from surgery just over a year. Bren is able to walk so good and even run(still a little scary to watch him run). He does fall most of the time if he gets going to fast. We switched him to public school this January and he is loving it. He broke his arm 2x August and October and after 5 months of being in a cast he finally got it off in January. His speech is so much better and you can understand him most of the time. We are so blessed for the way things turned out. Brendan was able to go skiing a couple of weeks ago with an organization called CW Hog. They help special needs kids do all sorts of different activities with adaptive equipment. What an amazing experience

veterans concert

We have decided to try raising a couple of pigs this winter. They are stinky but pretty fun pork chop is the little one and he is so cute he comes running to finds us whenever he hears the door open. Bacon well she was a little older when we got her so she is not to sure about us and is fast. The kids know what we are raising her for and are fine with that because they are all scared of her. But they think pork chop is our 2nd dog. Although he is getting bigger and bites at their toes and fingers so I thing they will warm up to the idea.
We also got 4 baby chicks Friday and they are cute as ever they are inside in a garbage can for now. I love to hear their little chirps and squeaks. Hopefully we will be able to keep the neighborhood dogs away from them when they get big enough to go outside.
2 of the 3 goats have had their babies already so we have 3 new doelings they are so cute we decided to name them Kamri, Kia and Pheonix. We didn't see them born just found them a couple of hours after. Luckily they are all healthy and didn't have any problems.
Jord got to display his invention this week and is excited to see how he did. He went to his Klondike camp out and on the way home some of his group got into a wreck with like 10 other cars. He made it home safe and sound.
Sage lost another tooth this weekend. I think thats 5 now. She has quite the gaps in her mouth these days.
Emmett is as wild as ever. He is so entertaining and fun. He is brave until you start a sentence "watch out for.... then he is such a scaredy cat.
Chris is going to Canada for a week on business. Hopefully we will survive.
Well thats all I can think of for now. I am sorry I have not kept up. It has been fun reading our latter posts. I was cracking up at some of the things the kids did .

Sledding December 2013

Cleveland Clinic Shaker Rehab

Shane, Vincent and Brendan

As you all know Brendan and I recently came home from Cleveland Clinic after being there for just over 2 months. I would like to say wow what an amazing place. Cleveland Clinic has angels working for them. I would like to go to a job interview and see the requirements. We have been to a few hospitals and well some have had better food but the staff are by far worth it. haha sorry CC but the food is awful. On the bright side that is the only negative thing I have to say. You have given my little boy his life back he has been seizure free since October 12th 2012!!!
We have made so many new friends along our journey and are so thankful to have those experiences. It has humbled me so much and I will never forget the many great things that these young children can do and go through. They have such amazing spirits and strength. My heart aches for many of the families we have met and beams for others in there accomplishments.
I remember when we were first at Shaker Rehab Brendan started having such horrible pain in his head that he couldn't sleep or eat and then to where he had no tears left he had no energy to fight to stay in bed. The doctors and nurses were very concerned and were about to send him back to main campus when they finally figured out the problem. After a bag of fluid and some steroids he was a different boy. We didn't have the extreme pain again. A couple of days passed and a little boy a couple years younger had a similar surgery and was experiencing similar symptoms and then my worst fear that I had for Bren happened to him. He started seizing. I remember going into to my room praying so hard for this family and tears in my eyes for nights to follow. I Knew the pain that they must have been going through, but his mother was so cheerful and happy even though her little boy was in so much pain and they had no other options. He did have a couple of good days and I will never forget when that little boy grabbed a hold of my heart and took a piece of it. While walking with his mom while she pushed him in his chair he looked up at me and asked if he could hold my hand. Such a simple request but yet such an impact it has had on me it brought tears to my eyes and I miss his soft cold little hand. After a couple of weeks of not being able to help him they decided he would do better at home and maybe try day hospital in a few weeks. He continued to seize and not sleep very well at night and be so wiped out that the doctors were concerned and advised the family to start preparing. When I heard this I cried so hard for him and yet was so thankful for our blessings. weeks went by and it was about 10 days before we were to go home and he was in the hospital for a chair fitting and the excitement came rushing out of him waving his little arm in excitement he reached for my hand and pulled me down for his sweetest kiss on my cheek. He held my hand tight and kept saying my name over and over. We both smiled so hard I thought my cheeks were going to fall off. He is doing so much better and the seizures have slowed and he is able to be up for most of the day. I was so so happy! Brendan and I were able to go to Dinner with them our last night there. What an amazing family He has 2 sisters who are just as cute and sweet. Brendan of course liked them. He is also a charmer. Those 2 boys could be brothers. I have many other stories of other friends we met. So when I can see to type I will post more.
Thanks for caring and all our prayers we love you all.

Here is a link to his story - he has a disease that affects 1 in 100,000,000. He is going to have brain surgery soon and we are trying to make his wish come true before the surgery http://www.caringbridge.org/visit/brendanmcdaniel

Fundraiser for Brendan and His Family

Saturday, September 22 at 8:00am

More craziness

This last couple of months have been well a little crazy. We went to Boise and had some test done on Bren and had a very exciting guest show up! My little sis came waltzing up the hallway and I had to do a double take. I was in much need of some company. It was the longest week of my life. B had over 100 seizures in the first 3 days. We found out he has 6 different seizures. Crazy!!!

We started him on some newly approved medicine and things were looking up. We had 2 free seizure days and then a little lapse and then 4 days without. His seizures did return but they were quick split second jerk seizures, which is much better than minutes seizures. Well now we are back to multiple seizures today we had 19 jerks and 3 of the 6 seizures. They had been quickly progressing since his diet slip up on Thursday. Oh the diet we are on the modified atkins diet of no more than 10 carbs a day. It has been a little hard to come up with meals and even harder to not cheat for Bren. Today we finally are in ketosis yay which is good now if we can stay there. We may be starting his IVIG next week to see if that will help his seizure control.

Now to the more craziness... My big sis just found out last week that her oldest has a really rare cancer that effects 1 in a million kids. Osteosarcoma " bone cancer ". She starts her aggressive chemo treatment tomorrow. She will have 3 months of chemo followed by surgery and 5 more months of chemo. Not that that isn't crazy enough my sis is 4 months pregnant and has to move 4 hours away so her and Ash can be closer to the hospital for her treatments. This means a new ob and having a baby in the middle of chemo treatment. What is going on with our children contracting these really rare diseases? Hopefully this will be the last of our tragedies and we will have better luck. Now for some better topics.

Sage is doing so much better with her reading and school work. She is growing so tall and turning into such a beautiful little girl. Emmett is our little entertainer. He is always doing the funniest things and making us laugh. Jordan is such a good big brother looking out for his siblings. He is so helpful with Bren and making sure he is ok. Chris, Jordan and my brother Jake went steelhead fishing last weekend and didn't catch anything and again came home saying they hate it and never want to go again. Lol that's what they say every year. Jordan informed me today that they have been deciding if they want to go next weekend. Hehe I think they are addicted to fishing. Oh well that is good they have a hobby hopefully they will come back happier the next time and limit out.

We got some baby chicks and Emmett is so funny with them he wants to hold them but they better not put there feet on his bare skin or they will get some flying lessons in as he chucks them across the room and if they peck him they get swatted of his lap faster than you have time to know what happened. When they just snuggle under his arm they get smothered with kisses. We have 8 chicks and there names are so funny Jordan's is pecker because he likes to peck the others, Bren's is stomper because he doesn't care if the others are sleeping or in his way he stomps right over them, Sage's is Lilly well because she likes that name it was Lilly pad until the brothers made fun of her, Emmett's is Nelson because he names everything that, then the other 4 are blondie, speckles, Easter and bunny because the last 2 are Auracanas and they lay colorful eggs. Well, other then that that's all that has been going on around the McDaniel family's house.

Here's to a Better Year

So it has been just over a month since my last post. We had an amazing Christmas. We are so blessed to live in such an amazing community. We received so much from so many people. Our kids had the best Christmas ever. It was such a treat to watch them open their gifts and give their gifts. It was such an amazing holiday and the highlight of a long and hard year. I can't tell you all enough how grateful we are to have you a part of our lives and how much we appreciate you!!!
Jordan got his snowboard but now is waiting for snow so he can use it. Poor kid can you believe we are missing snow(well I'm not). Brendan got his remote control boat. Sage got barbies galore. And Emmett got his Thomas James and Percy. Chris and I got an iPad and it was nice since our lap top decided to crash the day before Christmas.
Health wise we are doing pretty good for the most part. We still are struggling to find an answer to what is going on with Brendan. We had an appointment at PCMC to have a consult for the Ketogenic diet. We also went to the ENT and Brendan is now needing sinus surgery on the 20th. Man can't this guy get a break. After that we go to Boise on the 30th for brain surgery evaluation and will be in the hospital for 5-7 days. We return home in time to head to PCMC to start the Keto diet on the 6th. So it is going to be a busy month. He has seemed to be doing a little better since we have been more alert to what he is eating. We have been limiting his carbs and he has had less seizures. He goes through spells like this and we think we are on to something and them he will have a whole lot of seizures but hopefully we are finding a solution. So when we start this Keto diet he can have absolutely no carbs of any kind and be on a very strict diet and only eat at certain times and have his food weighed and measured. I am a little nervous because he is going to school and that will be hard to keep an eye on him. Plus having three other kids on a regular diet is going to be hard for him. He has been very willing and does need some reminding now and then. I have talked to all his health care providers and we are coming up with a plan to give him non food treats. It is funny because we reward each other with food. So now we have to be a little more creative. Oh I almost forgot Bren had an MRI last week and they found more spots on the back of the brain and said it was white matter which means his milan sheaths are damaged and could be the cause of his migraines and light oras. They explained it to me as being like electrical wires hat are coated and missing the coating in spots. So this can cause the messages in his brain to travel slower and leak out causing the lights and headaches. I could have been there before but the MRI at the hospital isn't as strong as the radiology place in town. Go figure so from now on no hospital MRIs for Bren if I can help it.
Well hopefully this year won't be as rough and we can find some answers!!!

So the frustration never end.

So we went to Brendan's Dr. appointment today and he has failed the steroid therapy. Which means they had no effect on his seizures. So we are now looking at the surgery eval. which we have been dreading and praying we wouldn't have to go this far. I am having so many emotions and don't know what to do or how to feel. The Dr. keeps telling me its just an evaluation to see if he is a candidate for surgery and it doesn't mean we have to have surgery. Well that does not comfort me at all! I am trying so hard to stay positive but just not feeling it this week. I know that everything happens for a reason but it is hard to watch it and not know why. Trying to keep faith is really hard but I know I can do it. It doesn't mean it is going to be easy or that I have to like it because I really don't! This was not in my 10 year plan or even 5. hehe Thanks for good friends and family we really need your love and prayers and we can feel them and are so appreciative of them. I have recently been following this amazing woman's blog about her trials and challenge's. It is so amazing and Stephanie Nielson is so uplifting. If you get a chance go to http://nieniedialogues.blogspot.com/. I will warn you, you will spend lots of time reading her stories and tears will stream down your face. A very very inspirational site and if you have any doubts about our religion (church of Jesus Christ of Latter Day Saints)or any interests I would highly recommend you check it out. I hope someday I can be where she is at religiously and am able to share the gospel and be an example like Stephanie. http://www.youtube.com/user/MormonMessages I love this message

Result of the Angio

So the angio came back as normal. What??? Now what. On a positive note that is good because it hopefully means he doesn't have vasculitis(inflammation of the vessels). It is really hard to treat and really hard to diagnos. We went to Dr. C here in IF after and he still wants us to forward with weaning him off some of his medications and started him on some steroids. The first few days were really crazy he was so hyper and was bouncing off the walls and furniture literally, plus he had six seizures in one day. They didn't last long so that is good. We did discuss a special diet with the Dr. for Bren to try and see if it helps. He was a little hesitant because of all the medication he is on and there isn't a dietician here in town to follow him. Sometimes it is so hard to go from test to test without getting any closer to finding answers. Bren is such an amazing kid, he is so strong mentally and physically. He has gone through so many tests and has been so patient for the most part. He loves going to his therapies but does get really tired and frustrated sometimes.
As for the other kiddos they are hangin in there. I think they are getting jealous at times that Bren gets a lot of attention and gets to go everywhere with mom or dad. I wish there were 2 of me at times so I could be with him and also with the others. Jordan just turned 10 crazy I have a 10 year old where does the time go.
I am so thankful for friends and family. I know I would not be able to handle the trials that are given to me. One of my dearest friends has endured trial after trial and still has a smile on her face and has the patience and faithfulness to keep it all together and be so strong and close to her Father in Heaven. I wish that I had as much faith as she does. I am truly grateful for her and the example that she sets for me. Being busy with our families we don't see each other very often. I am so thankful to have her in my life she has dropped everything to come and sit with me when I am having a hard time. I know that I have such wonderful friends and family in my life that will and have done that for me. I hope someday I will be able to return the favor and show how much I appreciate each and everyone of you. God bless you and I hope you all have a very wonderful Thanksgiving.

Our adventures to Seattle

So as most of you may have heard we went to Seattle Children's Hospital in hope's to get a second opinion and that they would miraculously have a cure or treatment plan for Brendan. Well sad to say but no such luck. Hey at least I can say we tried and are trying to make sure we are doing the right thing and don't have to look back and have any regret's for not trying. We did get a very thorough evaluation and have been told to get a possible sinus biopsy in hopes that that may give us any answers.
After returning home we met with our neuro doc and he gave us the referal to the ENT specialist. He did not do a biopsy instead shoved a q-tip up Bren's nose(poor guy). Wasn't expecting it to be that painful. He had a mini ct done and found that he had a sinus infection.
Next week we head to PCMC again and we are going ahead with the Angio. We are really nervous and scared for that, but hopefully that may give us some insight of what happened and is happening. We will then most likely start on immune suppressants since he has an increase in his antibodies which means he has an over active immune system that is causing harm to him and may be contributing to his seizures and stroke. If he doesn't show signs of improvement then he will be started on steroids, and again if that doesn't work he will be sent off to get a brain surgery evaluation. So we have a stressful and tough road ahead of us. While researching for help on the epilepsy website I ran across a new procedure/surgery for epilepsy patients and hoping that this will be a better alternative. So keeping our fingers crossed and praying for the answers we need. Thank you for all your prayers and kindness. Lots of love the McDaniels

It's been a while

      Hello my long lost bloggy friends. It has been forever since my last post. My mom always said if you don't have anything nice to say don't say anything at all. So I took her advice for once in my life ;). Well school has been going for a little over a month. I thought life would be less chaotic. Well was I wrong it seems like I live out of my car these days. We have therapy 2 days of the week, scouts once a week, tumbling once a week, activity days once a month, and our random Dr.'s and dentist appointments. But my kids don't think that's enough because we make a trip to the ER at least once a month it seems like. We had some visitors in September and it was way fun to have them. I am still sad to see them go. Usually you are sad to see them leave but glad to get back to your routine. Not me I am so sad for them to leave I don't know how I have managed doing this without them. My mom helped with the house work, grandma entertained the kids, and Krystal entertained me and helped with the kids. We had so much fun together.
       So Emmett and I are hope for about an hour by ourselves. He is so naughty these days. He is always crying and throwing a fit if he doesn't get what he wants right this minute. Grr kinda embarrassing to take him anywhere. But he does have his cute moments. He always is saying mommy mommy watch me or mommy mommy look watererer. He has a hard time stopping his r's it is so stinkin cute. The other day we were in Chris' truck and he says mommy hug n kisses and gave me hug then a kiss then a hug back n forth for about 5 minutes. Too cute.
       Sage is enjoying kindergarten the first couple of weeks she would come home and say my I had the best day ever. I would say thats what you said yesterday. "No mom today was" is her response. Now she isn't as excited to jump out of bed and hurry and get dressed. She is not liking the early morning thing. We do carpool and sometimes I will be at the school about the time her class gets out and surprise her to pick her up. Well the surprise is on me she would rather ride carpool then with her mom. A little tear but that's ok. I signed her up for tumbling again and I think she loves it. This is her second session. It helps her get out her energy lol. Oh yeah she also got her ears ears pierced as she would say. She was so excited and nervous, but she took it like a real tough girl and didn't even cry. She is so proud of them and loves showing them off.
       Brendan is in 2nd grade and is loving it. He isn't able to make it all day due to his health and/or meds. I'm not sure which one is the cause, so he goes in at 10:30 everyday. He has a little extra help with reading since he misses it in the morning. Other than that he seems to be doing ok academically. He does have a little hard time remembering sometimes. He has physical therapy on Mondays and occupational therapy on Tuesday mornings and speech therapy on Tuesday afternoons. It is kind of a full schedule but he likes going to his therapies, which is good because when he doesn't want to do something it is hard to convince him too. He has been having a lot more seizures the last little bit. We had a scary day a few weeks ago, we had to call the ambulance twice and take a ride to the hospital for a CT. Everything turned out ok we had a hard time stopping his seizures. His right hand has regressed a little, which is frustrating. He is on 4 different seizure meds and we are still having a lot of seizures. We went to the Dr. on Friday and he wants us to go back to PCMC to have an angiogram done on his brain and also to meet with the rheumatologist to maybe get on some immune suppressant medication. We are nervous and hope that we are doing the right thing and that we will get a comforting answer or something. Sometimes I think it would be nice to have someone tell us what to do.
      Jordan is doing really well in school. He is getting a little lazy in getting his assignments in but with a little nudge and threatening he does it. He gets to go early to the breakfast club for the gifted and talented students. I think its pretty cool they are doing stuff like that for the kids. Although that means I have to wake up early and take him. His class is getting ready to get a tortoise, which he is super excited about we donated our fish tank to them. He cleaned it out and kept bugging me to bring it in. He is such a big help around the house when he wants to. He is obsessed with going to the skate park. Its driving me kind of crazy, because everyday he asks to go and well I feel mean saying no but it is hard to get chores homework and dinner done before bed time without having to drive him across town.
      Chris and I have been doing ok. Chris got a para-motor which is pretty cool. He has been paragliding a lot more this summer. He took my sister Krystal tandem while she was out here. It looked pretty fun. I had her test it out for me. She said it was scary but worth it. So I may get up enough nerve to try it out. Chris has been busy working but also spending good quality time with the family.
     I have been canning a little this summer. I think I made about 32 quarts of apple sauce. I am thinking about making some apple butter but we will see, I do like to procrastinate. Oh I went to my first concert with my lil sis and well it was pretty darn fun. We ended up getting in a little tiff but it worked out in the end. haha Crazy girls. I went to the rodeo with my mom and boys it was pretty fun. There was no fighting at this event hehe so that was good a little boring but we did have the kids so had to keep our fun pg.

Trying out dads harness, wishin he could go flying

High in the sky

Waiting for the bus and looking oh so good :)

Bull riding with grandma Sherry!

The kids were scared of this big beast while riding their bikes. hehe 

having fun waiting for dad and watching him fly

Other then that life has been pretty boring ha I wish but thats ok. We do have ourselves a good time anyway.

It is hard to see your child struggle and all you can do is hold him and tell him you love him. Brendan tells me today that he wishes the Dr.s can figure out how to stop his seizure so he can be normal again. He has been having another batch of seizures this week. I was getting so excited because it had been almost a whole week since his last ones. Then he has to have 1 Sunday 1 Monday and 2 today. I wish there was more we could do for him. Love you buddy your the best!!!

rough couple of months

So the summer is almost gone :( and we still don't have any answers as to why Bren had a stroke. The last 3 weeks have been tough he has had about 9 seizures. He has been doing ocupational therapy since May. We went to his appointment today and the therapist has noticed a pretty big decline in well everything. He has ordered speech and physical therapy to be added as well. He said he has noticed a difference in him in the last 4 weeks and he didn't see him in those first 2 weeks due to the holiday and an appointment at Primary's. He did have a CT and Another MRI/MRA done and said there is no change. The day after is when he started having all of his seizures. So it make's me wonder if there is one now.

Emmett has had a strike of bad luck he has had 2 freak accidents with screws in the last month. First one he fell on one and split his eyelid open and the second he stepped on one that was hiding in the grass and it went about an inch into his foot. So the ER is probably going to start asking questions next time ;)

Sage is excited to start school. She has been pretty good this summer minus the tormenting and pestering she likes to give her brothers. But I guess its just pay back. hehe. Look out boys don't mess with that girl.

Jordan has sure grown up. He is such a big help. When Chris is gone and I need help with B or any of the other kids he is good to step in where he is needed. He is such a handsome little guy. I can't believe he is going into 4th grade.

Ok so I am finally ready to sit down and write my frustrations. We went to SLC last week and again came home with no new news as to what is going on with my little guy. We did get told that he has a lot more abnormal activity on the left side of his brain and are now concerned and want to do cognative testing. So in other words they think he may be getting some brain damage and causing him to have some mental disabilities. I have noticed a huge change in him over the last couple of months and even more so since I was away. He seems to act like he is autistic/ocd/adhd rolled into one at times. It is very heart breaking to watch him go through this and I know it bothers him. It breaks my heart when he tells me he wishes he would've never seen the bright lights because he wants things to go back the way they were. I am having a really hard time lately trying to cope and deal with this, that is why it has taken me a while to update this. I am frustrated with Dr.'s and don't know what to do about it. I want answers and I want them yesterday. I have seen my little boy change so fast in the last couple of months that I almost don't even recognize him. He has gained 20lbs in the last 2 months which is a lot going from 52lbs to 70lbs and I keep getting told its a growth spurt. I have a hard time believing that! He has gone from being my little shadow always wanting to help with whatever I am doing to not listening, hitting, pinching, scratching, and being just plain mean. Every once in a while I will see glimpses of him peek through. We have no appointments scheduled and that makes life uneasy for me. I feel like I have hit a dead end and can't find my way out.
We are so thankful for all our family and friends for all the love and support that they have given us. We have had so many ask what they can do to help. That has meant so much just knowing you are there when we need you. We don't know what we can do and don't know what anyone else can do, but just pray for him. I am sorry this is so depressing I am trying to be positive I have had a rough month.

More Primary's

We are yet again heading to SLC for more appointments. We are going to see Dr. Benedict "stroke specialist" have another EEG done, see Dr. Barkan "seizure specialist" and more blood work, and possibly schedule his angiogram. I hope Dr. Benedict can give us some answers. Brendan had a seizure last Monday and no warning signs and Chris was asleep so he had to try and wake dad up poor kid, I was out of town. He only seized for about 4 min. this time. We were instructed to increase his meds. He seems to be even more agitated and aggressive also clumsy. I hope we get some answers soon. I want my Brendy back. Having a tough time this week, but easier than some I'm sure. My heart aches for my sister, but she has shown me so much strength these last couple of weeks. I don't know how she does it she is so inspiring. I love you pickle.

Trever, 3, lived life to the fullest

Trever Mykel Stevenson, of Howell passed away Thursday, June 16, 2011 at Mott’s Children’s Hospital in Ann Arbor Michigan. He put up a good fight in his short 3 ½ years of life of having an auto immune disease which lead him to needing two bone marrow transplants. He endured much pain from his transplants and still seemed to be able to have a smile and giggle for all. His mother and Trever had such a deep love and connection that all could see the love they shared. We are thankful for the community for their love and support with his bone marrow drive and benefit dinner that helped with expenses to be able to travel to see specialists in Seattle.  

He was so full of life you wouldn’t know he was sick unless he had to have his oxygen on because he didn’t miss a beat. Anyone he came in contact with was putty in his hands. He had such a way with people and he loved and lived to make people laugh and brighten their day. He always had his cheerful smile and wave to greet everyone he saw. With his many trips and visits to the hospital and doctors he has made an unforgettable imprint in the hearts of many nurses, doctors, and staff members. He will be greatly missed and never forgotten.  He may have been small in stature but he was a giant in spirit. His mother, Krystal was unable to work due to his serious illness and time it took to care for him. Now she is in need of work after she can cope and heal from his passing. Due to Trever’s illness there was not a life insurance company that would insure him. The family would like to receive donations in lieu of flowers to help with expenses and make a donation in memory of Trever to the hospital or the National Bone Marrow Organization. There has been an account set up at Chase bank where donations can be made out to the mother Krystal Stevenson.

The viewing will be held Wednesday June 22 from 1pm-8pm the service is Thursday June 23 at 11am. A website has been set up in memory of Trever at http://memoriesoftrever.blogspot.com Also a benefit dinner will be held on August 6^th at the Eagles Club in Howell, for further details contact Nicki Jo Dragonov 810-623-3544.

Trever is in need of lots of prayers and a miracle

My 3 yr old Nephew, God bless him.

Now for my nephew Trever, I haven't posted about him in a while because he was doing ok. Well Tuesday he ended up getting a bacterial pneumonia which now has caused his mono to flare up and was rushed to ICU 3am this morning. They have put him in a drug induced coma, respirator and say it is in Gods hands now and are praying he will make it to Sunday.  Please please keep him in your prayers and my little sister as well they need all the love and support they can get.


The neurology team stopped by. They think that he may have a little lesion on his right side. So they are thinking they would like to do an angiagram to see if there is any blockage causing this or if there is a flow problem. So how they explained it to me was the veins in the brain are like a sprinkler system. You have a main hose that branches off into little sprinkler heads and sometimes dirt or debris get in there and block of a set of sprinkler heads and this will cause other sprinkler heads down the line from it not to receive flow causing that section to die and be damaged. Or there could be something constricting the main hose causing flow not to get to the end of the line on both sides and again the same end result. It is suspected that the main artery to the brain is being constricted and causing damage on both sides. They found something suspicious on the right side after having the EEG video and going back and looking at the MRI. The spot on the right side doesn't jump out at you like the left side. So we will be coming back in about 2 weeks to meet a stroke specialist and maybe doing that procedure. They suspect that the keppra is not working and may look into changing his meds. They did send us home with some rescue medicine called versed. We would only give it to him if his seizures last 5 minutes and after the medicine if he is still seizing after five more minutes then we would need to call ems. Scary to think about but at least we now have some meds to give him and a seizure action plan. 

So we made it and got him hooked up to the EEG and two hours later he had a pretty good size seizure 33 min. Scary but he has had worse hopefully we will get some answers. They got a good reading of his seizure which is good. The nurses said usually you wait ten days and still don't get any activity. So this is a blessing to have it happen so quickly. He is still out of it and really tired.

So we head to SLC on Wednesday for the EEG study. We are scheduled to stay for two days. It just depends on when he has an episode "seizure". Makes me nervous but hopefully it will give us some answers.

Our 2nd visit to Primary's

May 29, 2011

We went to SLC on Friday to see the rehab Dr. and the neurologist. It was very comforting meeting with Dr. Gooch. The Np and she was very hopeful that Bren should be able to get movement with therapy and they are going to follow his case. I am so excited for that. They come up to I.F. every other month so that means we don't even have to travel to SLC for her appointments which is a bonus.
We met with Dr. Barkan and I really am confused as what to do. She wasn't very organized and didn't listen to everything that has happened and would move from one thing to the next before we had a chance to inform her of what all has been going on with B. She looked at his MRI and read the report and said she would like to do another one with epileptic protocol. She is not convinced he had a stroke and thinks it could be siezures causing the problem. She wants to have him admitted for 5 days and do an eeg study and take him off his meds and monitor his brain waves.
I called my neurologist in I.F. to ask his opinion and now I don't know what to think. He has been so good to inform us of everything and can explain things in such a good way that we understand. He doesn't think it is necessary to do those tests because he doesn't think it is just seizures he is having. He was very good to answer every question I asked him and was really patient with me. I called him Friday night and he talked with me for at least 45 min. Then even called back to tell me lets do an eeg to see if his meds are working. So I really respect his opinion and know he is doing all he thinks is necessary. So what do you do??? That is the big question. I am open to your opinions so please let me know.
Back to Dr. Barkan, she was really good to tell us that there is nothing wrong with getting more than 1 opinion and to keep getting them until we are satisfied or get the answers. If any Dr. gets upset with this then find a new one because it is your child and you just want to find out whats wrong. She said she's not going to take over but do her part in trying to figure out what is going on and if she can't then she will refer us else where i.e. the mayo clinic or Cleveland, Seattle or any where else she thinks could help us. So that is nice to hear from her. But do I really want to put Bren and our family through all that with the risk of not having an answer? I do and I don't.
It would be nice to have someone tell you what your suppose to do and make these tough decisions. So any volunteers lol. So there you have it my crazy weekend. I am glad he is as healthy as he is things could always be worse.