Car Payment

Sorry, if this is making you sick, but I just found it when I went to pick an Aiden picture. It's from his birthday in July. I have to admit, that this is my favorite stage of Aiden so far. He is sweet, funny, adventurous and he is just happy.

Conversation yesterday while walking through a parking lot to our van.

Aiden: That's not my car. That's not my car. Where's my car?
Me: Here's our car.
Aiden: My car!!! My car!!!
Me: Is this your car?
Aiden: Yes!!
Me: Are you going to pay for your car?
Aiden: Yes!!
Me: (while buckling him into his carseat) Are you sure you are going to pay the car payment?
Aiden: Yes!!
Evan: It is over $300 a month. Are you going to give us money to pay that?
Aiden: Yes!!
Me: Okay, Aiden I need your money to pay the car payment then.
Aiden: Daddy, can I have some money???

Today, while getting into the van after the zoo.

Me: Aiden are you going to pay for the van?
Aiden: Yes!!
Evan: Where is your money?
Aiden: In your pocket!!!

PICC

And that is what a PICC looks like

Pyramids, Car Rides, Length of Days, and Weather in Just a Few Short Minutes

This starts in the middle of a conversation about pyramids, if you can move them, make the disappear, are they hard or soft, what they look like inside, and how we live in the desert like the pyramids do, but it is different and not the whole world is a desert.

H: Remember it is a 2 day drive to Oklahoma.
K: Like it is a 2 day drive to California.
H: No, remember that was only 1 day.
K: It is a long day when you drive.
H: Yes, it makes for a long day.
K: Only Jesus can make the day shorter. He can make it longer too.
H: Yes, I guess.
K: It is because he has the power of God.
H: That is true.
K: Only God can change the weather.
H: True.

Lego Zoo

We went to the zoo today, and some time between last Friday and today, they had installed Lego exhibits throughout the park. There were large signs explaining what we could do to help protect the animals represented by the Lego models, but we didn't read any of that :)

This is a tree frog, but with the protective glass and shade, I know it is hard to see, but you can see the boys' reflection in the bottom. 

These are Lego monkeys.

This was a full sized polar bear made of Legos on a Lego iceberg.

Kyle's best friend, Ben and his little sister and mom, joined us today. Ben showed Kyle how to climb on top of the log in the otter habitat area.

Lego turtles

 

These pictures are probably in the coolest part of the Lego exhibits, they have a picture of an orangoutang and a gorilla made out of Legos with places for the kid's head to pop through. I really like 2D art done in Legos. The way they do shading and everything is extraordinary and the boys came back to this part of the zoo before we left they liked it so much.

I just wish I knew when the exhibits are going to be gone. And a normal zoo picture of Aiden with our friends.

It was a gorgeous day and a ton of fun to go with our friends.

The Pudge

The top one is Kyle 5 weeks ago, the bottom if Kyle today....it might be hard to tell, but we were told by our nutritionalist today that we have a new medical issue. Kyle is gaining too much weight!!! He gained 7 lbs in 5 weeks. He is now up to 43 lbs, and has to be reweighed in two weeks to make sure this trend doesn't continue. He was only supposed to gain 1-1.5 lbs in a month! Since we changed formulas he has just gained and gained. It is awesome. 

There is some consideration that maybe he has more allergies/triggers than thought---so now on the new hypoallergenic formula---the diarrhea has stopped and he seems to be absorbing more nutrients. And we checked to make sure he wasn't retaining water--he isn't just growing! Maybe his new immuno suppressant drug is helping too. 

It is great news. Although he is only filling out and growing like a Young, so his pants are too tight and way too long. Plus, the clothes that I thought would last us until June are too tight and everything else is in storage. Although, maybe he just needs some bigger clothes---but my sewing machine is in storage too and everything that fits his middle is way too long! The joys of having a big boy with little legs :)  

I am somewhat nostalgic for my little baby; hefting him in and out of his car seat or onto the bed or carrying him anywhere is too difficult for me now. He is just so solid. He isn't little anymore. He is almost five. Can you believe it? So I am sad to lose my baby, but so grateful for some buffer weight and to know that he is doing better. 

My Child

I have been told that I should apply for disability for Kyle by one of our "Team Kyle" specialists. It is daunting. I am told that 98% of people get denied the first time and my best bet is through a lawyer. I have a meeting about that tomorrow.

I have also started to research what I need to do to protect Kyle in school. It is a year away, which is good and so annoying at the same time. He is 12 days too young. But his mind....

I was reading some documents today on American Partnership for Eosinophilic Disorders, ya know since Kyle has an eosinophilic disorder and several other disorders/diseases/medical conditions :)

This was a piece of advice:
Check your emotions at the door.  It can be frustrating to try and explain a confusing disorder to educators and people who help support your child all day.  It is inevitable that you will be faced with difficult situations that generate feelings of anger, frustration, sadness, and isolation.  However, it is absolutely critical to focus on the factual information available
[I failed at this today, I threatened to make a scene and/or make someone very uncomfortable if I was forced to come in for an appointment with the child psychiatrist, so he could make a med change. The administrator asked how that particular threatening behavior was working for me....I said, "Well! My son gets the care he needs!" And the psychiatrist that on policy does not do anything on the phone---you aren't even allowed to leave messages; he called me and it was a 3 minute conversation including new drug, dosing, side effects, and going over the address of my pharmacy. We will be looking for another provider.]

Engage with the school as though you are entering into a business transaction.  There is an identified problem or need that must be addressed.  The goal is to find a resolution that creates a win-win situation for the child and the district.  Emotions do not have a place in most professional situations, and the same is true when dealing with the school system.

Then this is what (at a very basic level---if he has no other needs) needs to be addressed:

Accommodations should be written to address the individual needs of the student.  The following are examples of accommodations for a student with an eosinophilic gastrointestinal disorder in elementary school:

• Allergen interaction plan including medication (i.e., epinephrine/EpiPen®) storage location, administration, etc.
• Description of nutrient intake schedule
• Description of medication administration
• List of trained feeding tube administrators (FTA)
• Description of tasks to be performed by FTA
• Description of training for FTA
• Off-campus activities covered by FTA
• Designated locations where nutrition support (e.g., formula intake, bolus feeds, etc.) will be provided
• How lunch and snacks will be accommodated for safety
• List of “safe foods”
• Availability of water/food/restroom access
• Who will provide safe foods, supplies, etc.
• Location of storage for formula, safe foods, feeding supplies, etc.
• Full participation in all school-sponsored field trips and extracurricular activities
• Accommodations for field trips and special activities (parents should NOT be required to attend for student participation)
• Extra time/testing accommodations
• Teacher to provide missed instruction
• Reasonable time period to make up work
• Absences without penalty when related to the disorder
• Guidelines for handling vomiting and bowel disturbances related to the disorder
• Parent to be notified in advance of special activities
• Parent to be notified in advance of food-related instruction
• Parent may send in snack or special instructions
• Substitute teachers provided with written instructions
• Equal treatment and encouragement
• Privacy provided if desired
• Confidentiality
• When to notify parents of concerns
• Emergency contact information

My child may poop his pants in school because of medication/feeding/inflammation, what are the other kids going to say? Kyle is confident now, but kids in school situations are vicious, rude, and down right mean! If he gets special treatment/has special aids, how are others going to treat him. Will he be that weird kid? What about the time missed for medical appointments/feedings/medication? Will I trust anyone to do that?

Aiden will need one too.

How am I going to do this?

And Today....

And today...he stood next to it fully clothed and pooped in his pants.