Heartbreak

I think I actually felt my heartbreak last night. As you know if you know us or have read my blog my son Braden is 5 and has had serious medical issues and has a significant delay with his speech. While being tested he is so smart it is the articulation or pronunciation that comes out somewhat garbled.

Anyway to last night.

I am sitting watching cartoons with the kids and Braden crawls on my lap and says "Mom I am weird". I said no your not. Brittney then pipes up and says "Mom I told him to talk to you because he said he is weird cause he cant talk good"...(have I mentioned before my 1st grader is way too smart). I thanked Brittney for telling him to talk to me and I took Braden in the office to sit on the couch in there. His eyes look like he is about to cry. I asked him why he thought he was weird. He said "Colton says I cant talk so I am weird". I wanted to cry, yes he is very hard to understand especially if you are not around him, for example he doesnt say the t sound so pick up truck is pick up uck and so on and on with other letters too.

I tried to explain to him that he wasnt weird but that he was special because of how sick he used to be and how much better he is getting. I tried to tell him that he was so smart and that he was getting better and talking everyday.

He seemed happier when we were done, but I sat there a while longer after he went back to his cartoons just thinking. I know kids are cruel I knew in my head that this time would be coming as he got into school but my heart wasnt ready to see those tears and try to ease his hurt.

I cant explain to him that he is 5 and that he has beaten the odds since he was born 11 weeks early, he has beaten them when a mass was found in the brain, then not just one mass but 4 and all removed, he has beaten them by being one of the smartest and brightest kids in his class while having 30 to 50 staring out seizures each day. He has beaten them by being happy and his dimple smile that melts hearts. But he is 5 and doesnt understand this all he understands is another 5 year old boy says he was weird. Yes my heart definitely broke a little with this conversation.

Trying to get healthier

I think the universe is against me. I really do. I am trying to get my family healthier and at every turn it seems something is trying to thwart it.

Eating healthier...well one the cost of organic food...wow..much higher...but okay we can suck it up and save in other areas so I buy the organic food. Preparation...ugh not near the convenience of that stuff that clogs our arteries and slows brain function. So trying to prepare menus ahead of time. Looking at the ingredients a 30 minute trip to WalMart can now take over an hour...as there are all kinds of different names for ingredients such as MSG we know that is a bad ingredient but did you know if it has less than a 98.8 % concentration they can call it Natural Flavoring. I don't know about you but if I see the word natural I am thinking its a good thing....well no it isn't. As MSG slows your brain functions and this is especially critical with Braden so have to watch for the Natural Flavoring and let me tell you it is hard pressing to find something without Natural Flavoring. So at least if I can find it at the end of the ingredient list that is a little better.

Then there is the McDonalds factor...my kids want it my kids love it, other moms let their kids eat it. So okay for a treat we will once every 2 weeks...I can bend after all they are kids.

Then the exercise just when I get on a roll, I get a headache, whatever machine I am working on breaks, something much more fun comes along I would rather do. The kids I will get them riding their bikes and then it turns cold, video games are so much more fun than exercise.

So getting healthier takes a lot more than just saying okay we are getting healthier. It takes planning, and lots of coming up with ways to make it fun.

This is the goal and I am committed not just for my son who really needed to be off several of the ingredients in some foods, but for all of us. My husband and I are now both in our 30's (even though he is more into them than me...lol...by 3 years) and we need to be thinking about being healthy. I see kids so overweight and teased and miserable I don't want that for my kids and I think by instilling the good habits now we are ahead of the game.

Arizona

Hope for Braden and his medical issues seems to be in Arizona, so what can we do but go to Arizona. Tommorow afternoon we will be leaving for the 18 hour drive to Mesa, Arizona. We will be there a minimum of 1 week. I am very hopeful but then trying not to get overly hopeful a fine balance there. We are taking Brittney out of school to go with us. If we have to stay longer than one week then her and Matt will come back and Braden and I will stay longer. Whatever needs to be done, it is just such a feeling of hope to have someone think they can help.

No clue...

I have blogged some about Braden before, basically he is 5 years old, sweet sweet happy little boy. He has some health issues (seizures but they cant pinpoint what kind or where in the brain, severe speech delay, and some developmental delays. Within the past few weeks some small issues have begun steadily getting worse. The doctors "think" it may be seizures coming from deep in the brain, but as one looked me in the eye and said, "We dont know what it is but we know something is causing a problem".

Okay I respect that he told me he doesn't know but dang it find me someone who does know. You ahve to understand this has been an ongoing battle they try to treat the symptoms but have no idea of the cause.

Today I pick him up from school and his teacher is like I am so worried his staring out (seizures) were almost constant today.

I just lost it, I am so sick of doctors not knowing what is wrong within the last 3 weeks he has had a weakening on his left side, his left eye is turning in we have had to have glasses this is how fast it is getting worse 3 weeks.

I called my primary care physician and basically she doesnt want to refer me anywhere different even though I told her Little Rock has said they dont know what the problem is. So her answer drive the 3 hours to Little Rock and set in the Hospital ER and make a doctor see him. we have an appointment on February 28 in Little Rock but things are getting continually worse daily and there has to be a reason I dont want to wait till he is convulsing in the floor and not able to breathe before we decide he has to be seen. I went ahead and called the nueo on call and she said that she would talk with the doctors tommorow and they may admit him for testing and MRI's etc at Little Rock Childrens. After talking with Matt we are going to give Little Rock one more chance we will be seeing a new doctor an Epitologist, but if we put Braden through all this testing and we still dont have a diagnosis or a reason then I told Matt I will fly to Pennsylvania I will fly whereever, but I would not just sit idle. If our local pcp wont refer us I willg et a new pcp I have reached my breaking point this is my son and "we dont know" is no longer acceptable.

Okay I guess I have vented enough for one blog session but that is where I am at with BRaden medically today.

Braden is not happy.

Took Braden to the eye doctor today for his left eye turning in and she put him in glasses. He is not happy. I tried bribery, I tried you will look like mommy, I tried using his best friend who also has glasses...no avail...we dont want the "stinky glasses". We got them ordered and they will be in Friday or Monday so we have till then to talk these glasses up and make him excited....somehow I think it is going to take a lot to get him excited but we are going to try. He has to wear them all the time. Of course Brittney wont be happy either because she was WANTING glasses and her eyes were fine...ugh...just cant get the right kid with the right problem...LOL...so probably going to have to go to the mall to Claire's and get a pair of $5.00 fake glasses for her to wear around...and then fight with her brother to wear the $150.00 pair!

Too many opinions

My son Braden is 5 years old he has a severe speech problem, and has had seizures and masses in the brain and many other issues enlarged tonsils, right side of his heart enlarged...some of these issues he has overcome but the one thing he has never had is a diagnosis. Talk about frustrating. It seems every doctor has an opinon and each is of course a little different than the last but no one knows for sure what the cause.

Last week we started him on a seizure medication for over a year we have been concerned about staring out spells Braden is having but they said his EEG during the staring spells were normal except for these bursts that mean a seizure could occur but didnt so it was not neurological. Now after months and now Braden is starting to have weakness in his left side and some small issues that were found by his physical therapist now they say um maybe they are neurological and are just coming from so deep in the brain that is why the EEG just showed bursts but not actual seizure activity. The key is "maybe"...ugh I think I could fight this so much better in my mind if I knew what I was fighting give me a word a name I almost dont care if they made it up...well I do but you get my drift I want a word to associate.

I have to say that Braden is our blessing daily as is our daughter Brittney. With Braden from birth (premature born at 28 weeks) he has been a fighter. He has had procedure done on his brain and then used the recovery room bed for a trampoline. He is a fighter nothing gets him down he has a dimpled smile that melts your heart and even though his speech is delayed he can still get his point across and basically let you know what he meant even if he just meets you.

It is just frustrating because I feel that they just have a checklist of maybe's and are crossing them off as they try a new med or a new procedure that doesnt work. Last week's try at medicine had a severe allergic reaction so we are back to the drawing board. As of February we will have a new doctor involved but I am afraid it wont be an answer just another opinion.

Handeling things while hubby's away

I always miss Matt when he is gone on business trips but this past week I have felt like a swimmer about to be dragged under. Before Matt left on Tuesday our son Braden started getting sick...when he has fever he has fibromal seizures so this started on Tuesday with Matt due to leave out Wednesday. Braden did have some seizures and missed all week of school. Brittney started getting sick on Saturday and me on Monday. Tommorow is Thursday and Matt will be back home. In the midst of all of us being sick inlaws decide to add some things for me to deal with. As well as receiving some news regarding Braden's health and some upcoming doctors visits. So I ask why does everything seem to fall apart when Matt is away. One good thing it always makes me see how much he really does, because I tell you I am hopping when he is away. Tommorow he will be home and I will be soooo glad.