Wall E

Today the kids and I are off to a movie to see Wall E . I will give an update later today. It is about how a young robot cleans up the earth. The kids seem to think that when something breaks we just have to throw it away. I think as a society we have gotten use to if something is broken we can throw it in the trash and not reusing it.

The kiddos also asked why we don't recycle. Our community does not. But, if we want we can bring the items on post or to another community. This week we will make our first attempt of recycle stops...1. best buy- electronics and batteries, 2. post- boxes and cans 3. ktown- glass and plastic.

This gives us something to do on Monday, Tues and Wed during therapy. I will update on how we do. We are using 2 old bins from the garage. Mrs. Dawn would be happy to see the dent in the garage after Shawn made a large Goodwill drop last weekend. He can look past the bins as long as it is not overflowing. He also is ready to get rid of the bag of batteries that don't work. I am looking into rechargeable. It is amazing how many we use with all the toys and electronics.

A green buy update-- I found these great bowls from HEB that are made of all recyclable materials by http://www.earthshell.com/. You can also buy from them online in large quantities- for super cheap! I payed about 8 cents per bowl and it was cheaper then my normal Dixie brand. I was super excited! I have microwaved food in them and they held up great. Finally, a slow down in dishes..which I cannot stand to do! Check it out ... a little goes a long way.

Waiting

Okay so I called to get the update on Tu Tu bun's test. He had a Chromosone Micro Array analysis. Basically it is a more indepth look at his genes. It will detect deletions and duplications on a micro level. So far our genetic counselor said that there are no results. Of course she will be leaving today for vacation until June 23. AHHHHH!!

She told me that if I can't wait to call back to one of her co workers. Thankfully they understand that we want to know ASAP. He also had blood drawn at the same time for a CK or CPK. Which basically shows muscle damage. Alot of times children like Tu Tu will have an elevated level. Tu Tu has had two in the past, but now it is normal. This is great because it suggests his muscles are not deteriorating.

I also met another one of Tu Tus therepists patients who looks like him. Weird huh? But, he too was negative for a FISH test. His mom was not there, but she asked if she could give her my information. OF COURSE!! Like Tu Tu buns he lacks speech and has other global developmental delays with no reason. He has the same physical appearance in his face - ears, underneath eyes, nose and mouth.

UPDATE- Here are pics from our fun in the sun after school got out. Tu - Tu is sucking on the paintbrush that was used to paint the fence--with water.





This is a pic of the water toys in the yard. The splash ball is in the rear of the pic.

Finally, a picture of worn out Tu Tu buns ready to go inside. He is so sleepy here.

Summer is HERE!

Well, I cannot believe that Summer is here, but it is. The kiddos are out of school for 12 weeks. So far I have a few things planned, but nothing super crazy planned. I am trying to come up with lowcost and no cost. But, that becomes so difficult when you take into consideration the cost of gas. I decided fun at home is better for all of us.

Here is what we have so far...check out my insanity saver ball.

Now PJ, being the other mother of our house informed me Sherman is not allowed anywhere near this as he will pop it. (Sherman is the crazy dog).

Other things I have planned for them are revolved around things they can do during tu tu bun's therepy. So far I have tracking the weather, tracking books they are reading and then some workbooks that my mom gave me. I would like to actually make it to Sea World, but I am not sure if it will happen. Of course when weather and tu tu buns permit we will go to the pool.

On a green note-- I got the deoderant and I have to say that it works!!! I am dry and I smell like roses..no really I do. It is worth the money. I am now on the hunt for sunscreen. I have the bug spray ordered and on the way. I will let you know how it turns out.

Sunny and Smelly

A little note on smelly and sunny...

Okay, so I ordered the deoderant. The deoderant by Dr. Haushuka. It should be here any day. I have to say this was super expensive- 19.95. But, if it works it will be well worth it. I always say, "Pay now or Pay later". Deoderant is known for causing cancer. Normal deoderant has aluminum and other carcingenics.

In other news, tu-tu buns had blood drawn for the test...Yesterday was a rollercoaster. He was happy and calm. Then by 10am crazy. A nice afternoon storm rolled in at 4:30pm and then he was calm again. I wonder what the connection is with the sun and his behavior if any. So far I have three weeks of sunny and miserable days logged. Thankfully it has rained and been cloudy.

START OF THE BLOG

My favorite color just happens to be green. It is also the color Tu-Tu buns will answer when you say what color is this? (adhd moment -If given two color choices like red train or blue train...Pick blue...he will). So, this is my blog about green, the adventure of my kiddos, all about sensory issues and the unknown diagnosis and just the funny blonde/ADHD moments that happen to me every day.

I think the first time I ever thought about chemicals (Clorox cleaner) and their affect was when Tu-Tu buns was first born. I was the mom who used it everywhere all the time. Then, when they thought he had cystic fibrosis, I read up about it on the internet and it said that strong cleaners and candles can aggravate the lungs…YIKES. But, that’s really when I started noticing what I was doing for their environment. (By the way- T u- Tu did not have Cystic Fibrosis. This was ruled out in Feb 2005. I wonder if my family will ever get over the licking at Christmas. Yes, I went around and asked everyone to lick Tu-tu buns to see if he was salty.)

In the fall of 2007, I read Jenny McCarthy’s book and started to research the Gluten Casein Free Diet. Because if Tu-tu had any form of a Spectrum Disorder I wanted a jump start and him to have a clean diet. I ordered a lot of books on recipes and went to HEB. We have since ruled this out, but it really started my look into the foods we eat. I should have already known this since I did fitness competitions and I knew what you put in your mouth was crucial to how your body develops muscle. Well, the brain is a muscle!

Shortly after the book and in the midst of my vida loca- my mother in-law, gigi, got diagnosed with CANCER! Lung cancer and totally separate from her other cancers. Now, I read THE HISTORY OF THE WAR ON CANCER. (See my reading trend-yes, I love books).
Well, I figure if I can do some small things then I can either impact my kid’s health or that of their kids. But, there is so much information and I figure the blog can help bring some of it together. Plus I would like a place to make sense of everything and maybe it will help in the way Dawn does- who introduced me to blogging two years ago. I tried before but could not really come up with anything. So here goes.

Hypotonia - a vague diagnosis

So tu-tu buns is becoming such a little cutie but so much more typical of a two year old. So, when someone says wow you have lost some weight, I really attribute a lot of it from running after tu-tu buns. I guess when you have not gotten to run and have freedom you just have this need to run, explore and play. Its great but slightly frustrating when you constantly have to stop and run after them.

I have found a very impressive book given to me by tu-tu's OT- its the Out of Sync Child. Its great and I really wish I could have gotten it sooner. Amazing how many people have some degree of sensory issues. After reading it I feel we all have a little. Its how it affects us or puts limitations on normal functions that it needs to be addressed. I am really thankful to our wonderful therepists now.

Every day it seems I meet people who have a child with no known diagnosis or similar issues that we went through that makes me want to blog and get it out. Its hard when you don't know or you don't know of someone else who went through it. I find there are times I say If only I knew that...

First, the one thing I would have changed from the beginning...be very adament in getting one primary care doctor. If we could have had some continuity in care then they could have caught this early on instead of some random doctors thinking it was cystic fibrosis. If it was going to be an issue of the on post doctor rule - I would have fought tooth and nail to be referred off post due to our drs constantly changing due to deployments. Write to hospital command staff and have my hubby's command staff involved. I was too patient.

floppy baby

Its funny how we parents make up little names or sounds. Maybe that's just me, but when you talk to your kids you start to think up little names and for us its was floppy baby. That is until we found out that our baby should not be floppy.

Tu tu buns is now a much better name and it totally suits him. In the beginning I remember thinking why do I need help bathing him and helping keep his head up in the car seat. I do know that all kiddos are different and I really thought nothing about it. Neither did the drs at the hospital either. But then again he saw a different dr each time due to the whole military thing..(a post for later because I do think there are excellent drs just dealing with a difficult system) so nobody else seemed to make a mention about it. He was happy, made eye contact and really was a calm baby that did not like to cry.

But, now looking back he was classic hypotonia - low muscle tone. First signs are floppy baby!! Now after having different therapists and doctors depending on who you talk to Tu tu buns is not that bad!! But it has taken 1 and 1/2 years of extensive pt, ot and speech. It is getting better and he is catching up developmentally with other 2 and 1/2 year olds.

I really want people to know how important it is for therepy. I wish I spent more time in the beginning pushing for that versus trying to find out what it was. Yes, there were a few times they needed to find out, but the other diagnoses would only give a name to what he has and the treatment is what we are doing. Eventually yes it will be interesting to find out if this is a gene or lack of oxygen, but over all I know now its more important for T to have therapy because the first 6 years are crucial for brain development. My heart truly believes that Tu tu buns is getting better by working hard.

My other thing is that alot of what tu tu does is not what a normal baby book teaches but random outside of the box things. Things that others laugh at and I have, too. But, it works.

Chuchalana is a name I started giving to my little girl when I would notice her acting sassy or wanting to be a messy girl..dont know why I call it that, but a funny note is there was a girl growing up who was a meanie. and she helped alittle with this name...

Pernounced Choo-cha- La- na

This morning I awoke to ice outside. I still want snow. Just fall from the sky and its okay if it does not stick. The babies would love it. But, do try to get off the ground so they don't miss school. Haha

new year

I love the start of the new year, but dread the idea of resolutions. I feel like I can never follow through...so I am really going to keep goals that are attainable and go with something I feel I can keep up with.

I am terrible with correspondence..thank yous, birthdays, anniversaries...I want this to be the year I dont forget and arrive on time...

I need to complete a family album and organize what I have ... I definitly need some type of game plan or else I will always be one more year behind.

Then the last one is to read..just a book a month. I really have let this one slip and it must not be another self help book.