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.

More updates

We went to the neurologist in town today and were told the tests in SLC came back normal. He had gotten a postive on his ana at eirmc and they repeated the test in SLC and it came back negative. We are waiting on one more test result and then we just wait and see how he does. Kinda crazy, so they are more confused as to what is going on. They have done all the tests that they can think of to do and still not an answer as to what is going on with him. We are in the process of switching his seizure meds due to the fact that he is so agitated and not himself. If he does end up having another stroke then we will go back to the Dr. at Primary's that ruled out Lupus and treat him for one of their diseases. He is doing pretty good with his physical therapist and a little better with me. Hopefully tomorrow we will get some answer's from the Rehab Dr. and other neurologist at primary's. Other then that we just watch him if he is having any signs of a stroke and if he has any more seizures. A little frustrated but hopeful that things will turn out.

I dislike the unknown

Today we went to the neurologist in town and he still thinks that it may be lupus. He says "I know he looks to freakin healthy to have it but there are some tests that can't rule it out and doesn't understand what else it could be." He says we may have to wait it out and see if it gets worse or develops more to get the evidence we need to find out what this thing is. He wants to switch his meds because he has noticed he is more aggressive and agitated. Which I pray this new one will get my loving happy go lucky Brendy back. Also that it will work just as well so we won't have any more of those horrid seizures. We also need to do .... you guessed it MORE BLOOD WORK. Good thing he is so tough and brave.
We went to our first Physical Therapy on Tuesday and it was great. We learned lots of things to work on with him. He was so excited at the office but when we got back home not so much and it was a chore to try and get him to do his therapy. I blame his meds for his stubburness. I found bribing is becoming my negotiating tool. Whatever works I guess. So if anyone is up for the challenge and would like to work with him for an hour a day by all means come on over.haha
I can't believe he is going to be 7 on Saturday. He has been on the countdown ever since it was 11 days out. I also have a long list from him. lol I think he is taking full advantage of his illness. Who could blame him. If only my pocket book was as compassionate.
He is wanting to go to school now that there is only a week and a half left. Personally I think I may stress out more if he does go for fear something will happen and no one will notice. But on the other hand it will be nice to not have to break up Sage and his fights like every 20 minutes. lol Now I know how my mom felt with my brother and I hehe. It was always Jake though I was just defending myself ;)

Amber this ones for you! The revenge on Tom.

Tom Swifty

Ok so you all remember Tom?  Well he was suppose to be Thanksgiving dinner then Christmas and then Sage's Birthday dinner. Well he didn't make it to Sage's birthday because of a mean karate kick he had.
I thought it was so funny that my boys were so afraid of a little ole' turkey. He would meet them at the door of his cage and try and peck their poor little fingers in their attempts to feed and water him. So finally after getting the door open he had a nice karate kid to greet them. I would watch out my window and giggle a little and yell words of encouragement to them. hehe That was one of the highlights of my day. I know you are all thinking what a mean mom laughing at their challenges.
Well I only laugh because it takes me back to my childhood when we had tom turkeys not just 1 but 4 and my lil bro loved to chase and torment them when they were just little guys and well they grew and decided to get revenge on not just him but all kids who dared to come in the yard. There were many times we were all yelling for help atop our swing set and my mom would laugh and laugh and finally come to our rescue.
Well the day came when I came to my kids rescue. I decided I would feed tom for them and he greeted me the same way he had my kids all these months. Only he had more than 1 karate kick for me. Needless to say he has kicked his last kick. I tackled that mean bird and drug him to the chop block and well in my attempt to do the deed he got away. So I chased him around the yard I finally got a hold of him ( he managed to get his kicks in) and this time I hog tied his legs together so it wouldn't be so hard to ketch him if he decided to elude me again. So I gave him one big swing at his throat and he jerked my finger right in the way. Yeah I chopped my finger and nicked his neck. I sent in my trusty helper Bren to get my knight in shining armor to come to my rescue. After 3 convincing tries he finally comes to my rescue. He finished ole' Tom off and helped with the skinning. I prepped him for the crock pot and well a few hours later we sat for dinner.
Well that mean ole' turkey thought he had the last laugh it was the toughest and most disgusting flavored bird ever! So I thought I would let Daisy have her long awaited meal and feed Tom to her. He was a bad egg through and through.

Our trip to Primary's

We went to Primary Children's yesterday and it was a relieving day. We found out that he doesn't have Lupus, MS, or ADEM. So that was the relieving part, but now we are back to square one what the heck is going on with him? They are sure that he had a stroke and now the question is why and what caused it. So we had to get more blood drawn and an echo to help us figure it out. We will be going back to Primary's on the 27th of May to meet with the neurologist and the rehab Dr.'s. Hopefully they will be able to figure this out. He was started on a baby asprin for a safety precaution against any more strokes. It was a long and worthwhile day. I am so glad at the news we received and Chris seems to be doing a lot better after hearing this(he doesn't seem as stressed out and worried) I want to thank all those who have been praying and offering us help in anyway they can. Without your love and support I don't think we could make it through this.

Physical Therapy?

So they think that it was a stroke that is causing Bren's hand to have weakness. I have been asking about therapy for him and they want to find what is wrong and get a diagnosis before we worry about that. I am not sure I want to just sit and wait. Why not get him into therapy now so we can be that much farther ahead and on our way to recovery?! Plus shouldn't you try and do some sort of physical therapy to help him so his muscles and tendons don't shorten? So I have been searching the web for any answers and haven't found any. But I have found some ideas of therapy that I can do with him. It is hard to get a child his age to do hand stretches like you would have an adult do. He complains and gets bored with it fast and says "I can't its too hard".
Tonight I went to walmart and got tennis balls, racquet balls, glitter/water filled bouncy ball, the game operation(which I never like because when I hit the little metal piece with the tweezers it would freak me out haha), play-do, craft sticks (to make a hand splint for night), finger paint, velcro mitts to play catch, and a hand weight. Hopefully this will keep him entertained enough and work to get his hand on the mend and go back to using it. If anyone has any ideas or suggestions please let me know. I have been contemplating on putting him in piano to help get those little fingers moving. Also I have read and learned that music is one of the only activities that really uses the whole brain.
His birthday is coming up here pretty soon so you know what he is going to get (right) besides tests and shots? Physical therapy toys lol. Hopefully he will appreciate them and have fun using them. I know he will he is such a sweet kid. He always and frequently says to me " mommy I love you so much your the best". He is my heart melter. He sure knows how to pull at my heart strings, I love that kid so much and it about kills me to see him have to go through some of these tests and have some of the side effects from his meds. B bear you are the best son a mom could ever ask for! Always stay as sweet and loving as you are.
We have our appointment to Primary's Thursday so hopefully we will have some better ideas of what the plan is going to be and what we need to do.

Lupus Foundation of America

Lupus Foundation of America: "- Sent using Google Toolbar"
So I have posted this link because now the Dr. thinks it is lupus. I am not sure how I feel about it. I don't know a whole lot about Lupus. The plan is to get more blood tests done and then off to Primary Children's next week. So at least we are getting closer to some answers and knowing what we are in for. We went and some of his blood drawn tonight and he is going back in the morning for a glucose test due to the fact that he has gained 10lbs in a week. Crazy because he isn't on steroids or any other kind of meds that would make him gain weight. I guess if it is lupus it is a mild case because usually children are so sick and have been so sick for a long time before getting the right diagnosis. So it is a blessing that we had these things happen to him. They are thinking that he had a stroke and his hand will be affected permanently and he is at risk for having strokes in the future. The Dr. said it is kind of crazy to say it is mild where he has been having strokes and seizures but it could be a lot worse. So I guess I am thankful for that. As of now I guess I don't know how I feel it is like a nightmare and is not really happening. So maybe in the next few days I may have a break down again. It seems to take about 3 or 4 days before it hits me. Which is good because Chris has a hard time at first and is somewhat coping by the time I have my breakdown.