Wednesday, March 5, 2014

Stomach in knots.. The first of many to come

March 5/6th 2014
  As I lay here at 1:20 a.m. trying.. trying to go to sleep. I realize I can't. I wonder if Robbie is having the same problem in Aidens room? You see, today/ yesterday March 5 th, Aiden had a Neurologist appt. Just a regular 3 month check up. This one he got an EEG, which we knew he would have to get. He gets those every 6 months. He will also have to get bloodwork, as usual.
  Sitting there chatting with the Dr. about how well Aiden is doing and thinking all is well, but in the back of my mind, also thinking... It's been two years since Aidens last seizure.  The Dr looks up and says " well it's been two years since his last seizure, I would normally have you start to ween him ".  My stomach dropped . I know what you are thinking " Awesome "!  I so want to think and feel this too. I'm sitting there shaking my head in agreement while tears are filling my eyes.  I look over at Robbie and he is shaking his head too.  The Dr. then explains that he will not ween him just yet. Let's just lower his dose. I'm still on the verge of tears at that point.  He explains that Aiden has grown, his brain has grown, he hasn't had a seizure in two years!! I'm trying so so hard to concentrate and really hear what he is saying, but it's so hard. All I'm thinking of is how long, how scary two of his seizures were.
  We decide to drop the dose from 6 ml in the morning and 7 ml at night to 5 ml and 5 ml . IF he has a seizure it will be a mild one he says to us and then we will up his dose to what it was. I told him I'm freaking out as my eyes tear up again. This time there is no stopping them, they slide down my cheeks. He rolls over on his stool and starts explaining again in such a soft tone.  I get it, I understand. Why keep him on medicine and chance ruining his liver if maybe he has grown out of Epilepsy?  It's just so scary because we don't know.
  Tonight was the first dropped dose.
  Will the stomach knots go away? Will the tears stop flowing? Will there ever come a day where I'm/We aren't constantly thinking is Aiden gonna have a seizure?  Will we be there? Will we wake up if he has one sleeping like the other two? Every time we hear something when he is sleeping and we round that corner to his room with a pit in our stomach wondering what we are gonna find.. It's an everyday/every minute thing.   All I want to scream right now is ...I'm F****** Scared "!!!

Saturday, February 1, 2014

Feeling Beautiful/Sexy...every lady should be able to

I am writing this in hopes of getting more ladies to branch out and give it a try.  I just did my second, yes second Boudoir shoot.  My first one I did about seven years ago.  I have gained some weight, but you one what??? That is fine by me!  Who is to say I'm still not just as sexy if not more? Not you, not me. I feel we as women get judged way too much. Are we small enough, are we pretty enough. Well I'm done...I'm done judging myself the most. Would I like to lose some weight, yes, yes I would. Only to be healthy, but to fit into what other people think I should look like...Hell No!
So, I gave my friend Jill a call and we got to it! The very next day actually. We had so much fun! We laughed and froze...Yep I said froze. We had to take advantage of the beautiful untouched snow outside. Well I should say  " I " froze, I was the one half nekkid :-)
Will people judge me for this? Probably, but I didn't do it for them, I did it for me and of course The Hubs.
I think every woman should get to do this at least once, and not feel ashamed of it.
What I want to say to all of you beauties is
Find a reputable photographer and go set up your very own Boudoir shoot, you will have a Blast!

Tuesday, September 17, 2013

Makes Us Nervous...

September 16th, 2013

We kept Aiden home from school due to him having two Dr.'s appts.  Around 10:30 I get a phone call from Dr. Haseebs office.  This is his Neurologist.  The lady tells me that Dr Haseeb has reviewed Aidens labs that we got drawn on Friday and that his Liver Enzymes are elevated.  She was calling to give me a " Heads up " that the Dr. will probably want to get more labs done in about 2 months.  Oh boy.... you all know how hard a task this is.  He actually did it very good on Friday though.....Thank GOD!  We have an Amazing Lab girl, who we always get a Frosty for her and Aiden after the labs are drawn, that's what ya do when you find someone this Awesome, and Aiden is a Trooper for sure, so he deserves a treat:-) Anywho, back to my point.  I have absolutely no clue what this means when she says they are elevated.  One would think that I would ask her, but I need someone to explain it to me that will actually care that in MY brain...I am FREAKING out!!  My Aunt explained that this means his liver is not doing what it should be, that it is not filtering his blood the way it should be.  I kept myself because Aiden was sitting right there and two...I just had to for a second until I hung up the phone.  I broke down..all that was going through my head was.. " his liver is not working the way it should ", Aiden had fallen asleep before I broke down, but I still went into my room, I just needed to.  I called Robbie because I knew he could calm me, he is Awesome like that.  I probably freaked him before he calmed me though, it's always fun when someone calls you sobbing and you are trying to understand them.  We decided that I should call our Awesome Lab girl " Dina ".  She is one of those women who as soon as you hear her voice you will cry and trust me when I say...I cried. This is a huge compliment, because right off the bat she calms you.  It's her sweetness that makes you cry, because I am talking to someone that to me actually cares.  She explained about how his levels are slightly high, but not to worry because he isn't wanting to get them re-drawn the very next day.  She told me to make sure I ask the Dr. just what this means, which I had planned on doing since the lady who called me gave me nothing else to work on.

I guess I should also tell you about his first appt. with the ENT Dr. and then move on to the rest of the day.  Back in 2011 when he had his first siezure and got an MRI done, they ended up finding something called Cholesterin something...sorry, totally forgot the exact name of it.  Basically it's some fluid like stuff behind his left ear on the inside that we just found out may be left over buildup from an infection from years ago.  We don't ever recall him having any infection. but ok we will go with it.  Our next thing to do is scheduling an MRI with contrast.  We explained to the Dr. that he would HAVE to be put to sleep due to his other medical issues.  Him being put to sleep scares us, but it's really our only option.  If the MRI comes back that this has not grown then it's as simple as we are done, if it has grown then that means surgery :-(  They will then go in and remove it.

Back to the Neurologist appt.
The nurse that we had was not happy that the lady who called me FREAKED me out and she said she was very sorry that it was handled like that.  Dr. Haseeb came in and explained that his liver levels have always been slightly elevated, which we knew, but now he is getting concerned.  He has taken Aiden off CoQ10, which he has been on to keep his heart strong due his Muscular Dystrophy.  Don't Freak, we are simply getting a head start, as of right now his heart is fine, just taking some precautions.  he is concerned that maybe the CoQ10 is keeping it elevated.  We will be getting labs drawn again in 6 weeks.  IF they have not changed, then we will make an appt. to come in and discuss changing his Trileptal to Keppra and having him go to a G.I. Dr. We are praying that we don't have to change his meds because that means we will have to ween him off them first.  That in itself scares the S*** out of us.  So I do something I probably shouldn't have.  I googled Keppra.........THAT scared the S*** out of me and Robbie when I read it to him.  Go ahead and Google Keppra and then Google Trileptal so you can see what I am talking about.  BIG difference in side affects.  We can handle Trileptal ones.  I mentioned to the Dr. that it makes me very nervous to A: ween him off and B: to switch 
He looked at us and said....I would rather him have a seizure, that we can handle, but we can NOT keep him on something that could ruin his liver...point made, Thank you!
This may not seem scary to you, but when it comes to your kids who mean the MOST to you and Dr.'s are talking about organs failing and then you look up meds and their side affects....WOW! it's a lot to take in.
Sorry if I scared anybody, but this Blog is my way of keeping info fresh in my brain, but believe it or not.....It's CRAZY just how much info and detail I keep front and center.  It's not just about my kids, it's all the info with and for regarding my Mama too.
Thank you, Thank you for all of your love and prayers

Monday, May 6, 2013

A New Diagnosis

  I have not written a blog in awhile, so here it goes with some updates on how our Duder Aiden is doing.  This school year is going soo good, we had some concerns but those got taken care of and answered.  Aiden's teacher was pretty excited to re-write his IEP goals.  Being at his old school we now realize and feel that his goals were so far past what his brain could do, much less comprehend.
  Now " Finally " it seems things are falling into place. 
So back in the Fall, well beginning of school year, me and Robbie started discussing more of our thoughts about there being something more going on with Aiden.  What I mean by this is...could there be aspects of Autism or Asbergers in there?  We have always thought about it, but just never really addressed it.  Sensory Integration has a lot of simalarities and that we already knew he has, but is there more to it?  We decided to contact his Dr that did the Pychological testing back in 2010 to see if we could get him tested for Autism/Asbergers.  We went to the first appt and answered A LOT of questions.  Then we had the next appt with the actual Dr., where we had to answer a bunch more questions.  At that appt. she answered our two questions.  He can't have Autism because his social skills are very high, anyone that knows him just knows that he is a social butterfly.  Next he can't have Asbergers simply because he had a speech delay.  Well we learned something.  We all decided that we still want him re-tested to see where he is from the last testing back in 2010, what can it hurt?  Aiden did the testing in record time, the answers may not have been correct, but he cooperated very well and did everything she asked.  She said he is such a delight to be around :) That's our boy!!

  April 3rd 2013.  Me and Robbie have our appt for the test results.  My stomach was in knots, something was telling me the results are different.  We go into her office chat for a bit and then we get down to business.  The first thing she said was about his I.Q. score and that is what we need to talk about first.  Again my heart sunk.  Back in 2010 his I.Q. was 64 which then he could have been diagnosed with Border line Mental Retardation, but because he scored higher in another category, she didn't diagnose him with that.  It ended up being Severe Cognitive Delays.  Since 2010 his I.Q. dropped 11 points.  That puts his I.Q. at 53, " Mental Retardation " that  score is not even on the I.Q. scale.  Severe Cognitive Delay is no longer the diagnosis.  At this I am not gonna lie, I started to cry.  Robbie says that once I start crying  you have lost me, I am no longer paying attention, Thank God for him <3.  Can you even imagine what is going through my head and Robbies at this time, but Robbie is holding tough for the both of us.  She then proceeds to tell us that this will always be his I.Q.  I know this may even be hard for you that are reading this and you are probably thinking " What "?  At 10 years old that is when a childs I.Q. platues.  Even his academic scores dropped.  We then ask her " does this have anything to do with his seizures " ?  She can't say 100% if it does or not simply because she is not a Neurologist, but she did say that with the time line of them and the last test that most likely it is.  How could it not be the reason?  He had 2 major seizures that lasted 25 minutes.  She said that when you have a seizure things shift and that is most likely why his academic scores dropped also.    What we now know is, his I.Q. can't change, but his academic scores can.  Being that we now have him in a program at a new school, with which in that class everything is repetitive is a very good thing.  We have known for years that Aiden's mentality is not exactly his age.  We don't always treat and respond to him as a 10 year old or whatever age he has been at that time.  We have figured him around 6-7 years old, we were slightly wrong.  The testing put him at 5 years old..academic and mentally.  Someone about 2 weeks prior to these results said to me,   " his disabilities only go so far ".  What???  So we asked the Dr.  " how do we explain this to our family and friends "?  We did tell her about that comment, and she said " well I think you guys need to have a family intervention ".  Have we done this you ask, " Nope "  We are at the point in our lives that if people are not gonna respect us as Aiden's parents and listen and respect HIM as a person, then you just don't need to be in our lives.  That may sound harsh, but we are his only parents and we are the ones who will defend him.  Our boys are our whole world.  She also said that the people who may end up being in denial are Grandparents and Parents.  The reason for this is back 50 years ago if you were diagnosed with this most likely you were put in an institute, pretty sad huh.  You were either "Educable" or " Uneducable ".  Things have changed drastically!!  I will take a picture of the sheet that explains the chart and put it in this blog tonight.  We have come to terms with the result, simply because " it is what it is ".  I hope that doesn't sound weird, but we have already been doing everything that we possibly think we can do.  The Dr. even looked at us and said the same thing.  Will Aiden live a full life and get married with kids?  Who knows, would we love that for him?  Hell yes!! Will he live with us forever?  Hey, if so, we are perfectly fine with that, there are typical kids that still live with their parents way into their 20's.  Robbie and I have said, we will always have Hope and this will not define him.  Family and Friends and also Us may just need to reevaluate how we respond to Aiden and just try to remember.....he is his actual age on the Outside, but a few years younger on the inside, in his brain.  So all we ask is that you all Please respect us as his Parents.  Nobody has every answer, we are learning continuously every day that this beautiful child is in our lives.  He is still the Aiden that everyone loves.  Another thing that just warms my heart, is that the most simple things that that make little kids giggle " Still " make him giggle.  That sound will NEVER get old :)

Monday, July 30, 2012

My Home-made Laundry Soap

Ok, so this is for every one that has seen that I am now making home-made laundry soap.  I found this recipe on Pinterest.  I have added one ingredient, so we will see how it works.  My last batch that I made probably lasted me about 5-6 months.  I was normally spending around $14 every month and a half for Ecos laundry soap.  As much as I loved it, I needed to find something that lasted longer.  That is when I stumbled upon this recipe.  Now don't get too excited, it openly tells you this is not a fragrant smelling soap, even though it smells good to you, it doesn't really make your clothes smell like anything, but you know what???  It gets the job done!  That is why I added an ingredient, so we will see:)  Now for the unveiling of the ingredients :o)  I get all of these at Walmart, this is where I have found it the cheapest.

You simply mix all the ingredients up in a 5 gallon bucket and put into any container your little heart desires.  I happen to use old ice-cream containers, as seen below. It fills two of them to the top. Just make sure your container has a good sealed lid.                                                                           

You only need one scoop of the soap per load. I just use the scoop from this bucket.

Now the Purex Crystals is my new addition to this recipe.  It comes in different smellies.  The recipe on Pinterest also says you can use Fells-Napa soap, but I LOVE this Yardley soap, it smells so good I wish I could eat it.  These two smells together is Heavenly. You will need to buy a cheese grater ( I got a big hand held one at the Dollar Store for $1 ).  You just simply grate the soap, just like you would cheese. 

This my friends is the FINISHED product!!!  See how the soap grated up looks just like cheese?

                                                             Ta Daaaa!!

I hope you enjoy this as much as I do....Thanks for reading :o)

Saturday, July 14, 2012

Having Some FUN!!

Color the items you have done:
Started your own blog.
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity
7. Been to Disneyland
8. Climbed a mountain 
9Held a Praying Mantis
10. Sang a solo
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm at sea
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Been to the Statue of Liberty
18. Grown your own vegetables
19. Seen the Mona Lisa at the Louvre
20. Slept on a train
21. Had a pillow fight
22. Hitch hiked
23. Taken a sick day when you’re not ill
24. Built a snow fort - (well. i tried.)
25. Held a lamb
26. Gone skinny dipping
27. Run a Marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run ( when I was younger )
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing - (on a rock wall.)
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater...LOVE these
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen - when I was a senior in High School
61. Sold Girl Scout Cookies
62. Gone whale wat
Got Flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar - (ew. sick.)
72. Sewn a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a Bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating - (well. a fish.)
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby x's 2 <3
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee
100. Visited Italy

  * I would LOVE to hear from you about things you have done:)

Just some things about ME!!!

So I am reading someones blog and I stumbled on this one. I am going to delete her answers and put my own..I just love these things:)

I am:  A Mama / Wife / Baker

I think:  Socks and sandles are goofy

I know: I LOVE to laugh

I want: My boys to grow up to be beautiful human beings

I have: A Crazzy LOVE for dark chocolate

I wish: More people knew about my Company CoCo's Truffles

I hate: Dirty dish water

I miss: My sisters

I fear: Something happening to the ones I love the most

I feel: Hot and sticky

I hear: The vent fan to the oven, my youngest son laughing, asking where the mopper is

I smell: Chicken and french fries

I crave: Dark chocolate

I search: For the moon at night

I wonder: Who the girl's my son's will marry some day

I regret: Not being an exerciser..I know I can do it:)

I love: Robbie, Noah, Aiden and lot's of other people

I care: About other people

I always: HAVE to tell my boys I love them before I go to bed, even though they are sleeping, if I don't and get comfy...I get up and tell them or I can't fall asleep

I am not: Good with getting my blood drawn..I hate it

I believe: There is a love out there for everyone

I dance: Every time I hear music..I can't help it

I sing: Really loud

I don’t always: Not cuss

I write: For memories

I win:  At arm wrestling with my sister Erin ;P

I never lose: My tooth brush

I listen: To anyone who wants to just talk

I can usually be found: Reading books or magazines

I am scared: Of my kids dieing before me...I truly couldn't handle that

I need: More money, don't we all

I am happy about: My life in general <3