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.

Ready for the week.

I am anticipating at least a somewhat easier week than last week.

I have worked most of the afternoon on preparing for the week.

Tommorow we will get Braden's glasses and at this point he is looking forward to them. Ask him and he will tell you "I am going to be a handsome dude"...LOL.

Will be having lots going on in the evenings this week but I can keep it all going with a goal in site. Friday night my parents are taking the kids for the night and Matt and I are going on a date. I received a $50.00 gift card to a Japanese steakhouse from the lawyer I helped out last week as a little extra on top of payday which wont be till the 31st. Anyway Matt and I are going to get to go out together so even if it is a stress filled week I can look forward to some wonderful hubby time. The kids will also be looking forward to going to nana and papa's for the night. They get spoiled rotten when they are there. Example it had been 6 days since my parents had seen the kids and you would have thought it had been 6 months.

Involvement in kids school.

Friday night...yeah...my week of working at the office is over.

This morning I met to work on the elementary yearbook before going into the law office. The yearbook is one of the responsibilities of PTA, and since I am president of PTA this year I am in charge. Our school is not huge but good size the elementary has 465 enrolled. Out of this there are about 20 parents involved in PTA. Trying to get more parents involved we have sent home notes about working on the yearbook and scheduled both an evening and a day time to work on it to accommodate both working schedules. This morning there were 5 total. This is after sending home 465 notes to parents about this mornings time and Monday evening's time. I was talking to one of the PreK teachers that had my kids the last years and she said parent involment is down very low she has maybe 2 parents that are involved at all in a class of 18 kids.

I notice the difference in my two kids classrooms in my daughters class there is a group of us we request the same teacher each year and have gotten close and the rooms are always packed with parents on party days and maybe 5 kids don't have parents there out of the 20 kids in the room. In my son's class there about a total of 5 parents or guardians. I understand that not everyone can take off work but there are so many other ways to be involved in your kids school and with their activities. I just think it is sad that there is so little involvement. Of course I am on the opposite end and can't seem to say no so I am volunteered for everything...and tend to almost drive myself crazy. But all in all I wouldn't change it I would rather be pulling my hair out because I am trying to get stuff done than not be involved.

New perspective

This week I am filling in for a friend and running the office at my friend's law practice. I normally do freelance paralegal work and bill approximately 20-30 hours a week. This week I am putting in 30-40 hours in office. Let me tell you though it is really taking a lot out of me. Only a few more hours, but the fact is when I am billing I can do the work anytime, 3am cant sleep type a demand letter, 2pm have twenty minutes before getting kids dictate a complaint...you get the idea. But this week I have to be there certain hours and do things on that time frame. Add on top of this the juggling of kids, hubby, house, PTA and other projects and you have one tired juggler!

I am always very thankful for the things in my life, but after this week I am even more thankful for the flexibility of my normal work schedule.

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!

A different kind of busy

This week is a different week for me as I am working in the law office basically full time hours. Normally I do freelance paralegal work that keeps me busy but I can do it from home and at 4am if I need to. This week however a very good lawyer friend of mine and his secretary also a good friend needed in office help as the secretary is out for gallbladder surgery. So with the help of hubby we have juggled kids, doctors appts, etc., so that I could be in the office quite a bit this office and at least open the office for them each morning. Yesterday I was there all day, well normally all I do is personal injury paralegal work I work for several different attorneys and this is my specialty...well yesterday I did a little of everything family law, criminal and just being at the office all day it wore me out. I am used to running here and there and having Braden at two different places during the day and so on, but I was so wore out last night. I think a lot of it is that I had to put up with the attorney one on one for a long period of time and usually I dont have to do that. I like him he has always been a good boss, but dealing with him when I am the one that actually knows more than him as it is on the personal injury cases and dealing with him when he expects me to know it all are two different things. I have not done criminal paralegal work in 8 years since I worked a regular paralegal job so it is taking some getting used to. So this week will prove to be busy and a little different.

Tommorow Braden goes to the eye doctor so we will see what they say. He is actually going to go into work with me for a little bit in the morning before the appointment. Luckily the attorney doesnt care and Braden can watch tv and play his game boy.

A laid back day

It was nice didn't do much today. We went to church this morning came home to lunch done in the crock pot, cleaned up and got organized for the week. Mostly just rested watched the kids play their playstation II...watched hubby play it too (I now am positive that I should have counted that as one of his Christmas gifts instead of one of the kids gifts...lol).

Nice to have these laid back days sometimes, especially knowing this is going to be a busy week.

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.

As soon as...

As soon as school starts I will have more time...
As soon as I get PTA lined out I will have more time...
As soon as we get in a routine with Braden's speech and doctors I will have more time....
As soon as Brittney's birthday party is done I will have more time...
As soon as Thanksgiving is over I will have more time...
As soon as the Holidays are over I will have more time....

All the above "as soon as" have passed and I still don't have more time. I keep thinking things will lighten up but I just seem to have life on super speed and can't slow it down. Between helping with things at the school, doing freelance paralegal work, Braden's medical and just the daily running of things it never slows.

My dear hubby has been attempting to take things off my plate and I know a lot of my busy schedule is my own fault because I dont delegate well, but I like things done a certain way and it just really gets me if things arent done that way. I try to be flexible but I like organization I know this at times drive hubby crazy.

I am going to try to give him more to do (he may regret asking)
I am going to try to be more flexible and once I give things to him forget about them.
I am going to try to say no to projects from teachers and ect that I really dont have time for.

Of course my "I am going to try" list may turn out like my "as soon as" list and just be that a list....but...I am going to try...as soon as...things slow down!

Too Young!

This afternoon my husband took our son to speech so that I could groceries put away start dinner and do homework with Brittney.

I am cooking dinner and she is helping and starts talking....about....boys! She is 7 and is boy crazy kissed a boy in PreK and another one since. Even came home one day telling me that she kissed one at recess and I said she shouldnt do that. She replied with "It's okay mom we go behind the tree so no one saw us". Thankfully these "kisses" are pretty chaste kisses but oh it is too much of a preview of the future for my liking.

This evening she was telling me about yesterday she had wore a new shirt to school that she had wanted for Christmas. Well apparently Cody (The 1st grade hottie) whistled at her and then came into her classroom and hugged her. But she said she isnt getting to serious about Cody because Morgan loves him and Ronnie (another boy) loves her and she is thinking she might love him back. It is so funny because she is so serious and sincere.

I dont even want to think about when she is 13! I will probably be longing for these chaste kisses and declarations of love that change daily.

200 Koolaid Jammers!!

I have 200 koolaid jammer packets laying on my cabinet. Why? You ask. Well I will tell you because I cant stand to dissapoint my 7 year old even though when I found out what she had told her class I wanted to wring her neck!

As I walk into get my daughter from class yesterday I am greeted by one little girl with a hug around the legs and a thank you. I dont know what she is thanking me for but I give her a hug. Mrs. Cox the teacher comes over and says they are all excited since Brittney told them you were making them all purses and wallets. Okay this is news to me. For those of you who are not in on the craze that is definetly swept our area....you take koolaid jammer, capri sun drink packets and they make things out of them wallets, purses. I have even seen them on sale on ebay. They are quite cute. Well turns out my daughter has promised one to everyone in her class.

I gave her quite a lecture on the way home about not telling people mommy will do things until we talk to mommy. In the end what could I do but rinse out all the packets (the teacher had been nice enough to save them for me from snack time so that I would have enough as it takes about 10 each for a purse and 2 each for a boys wallet). This weekend I will attempt to start sewing them all together.....and see hwo far I get or how many times I think of wringing my daughters neck..LOL.

Kelli

New Years Resolutions

That time of year again and since I have insomnia tonight and have been up since 3:15 thought I would share mine.

1. Healthier eating and not just for me but for hubby and kids too.
2. Devotional time more with the kids, myself and hubby.
3. Say no more often to all those can you do this or do that.
4. Say yes more often to special little moments with hubby.
5. Excercise all of us I want the kids to start off on the right foot too and never have to struggle to start an excercise program.

Kelli