Thursday, April 25, 2013

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.

Monday, April 15, 2013

The Pudge

The top one is Kyle 5 weeks ago, the bottom if Kyle 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. 

Wednesday, April 10, 2013

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?

Tuesday, April 9, 2013

And Today....

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

Monday, April 8, 2013

"I pooped in the potty!!!"

Me: "Aiden, what did you do today?"
Aiden: (while jumping around) "I pooped in the potty!!!" (then reaching up for a high five)

His reward: french fries at Red Robin!

Followed by ice cream (sorbet) with gummi bears and sprinkles at the ice cream store (Menchies)!

While I have no expectation he will have every day like this. This is much easier, faster, and less scary than with Kyle. I waited several months longer and for more signals that he is ready. After two days of poopy accidents, I locked him in his room with the potty 10 seconds later....success!!! This kid does not do his business unless utterly, utterly alone!

Saturday, April 6, 2013

First Session of Conference Activity

I was inspired from a link on Pinterest.......I did not follow any of her directions but I followed her shape which is based on the Seattle Washington Temple.

It was fun. Although I did most of it, they played with other legos and helped sort, which worked out wonderfully. It took longer than 1 session (just a few minutes) so no other projects were needed. Plus when we were done we talked about sealings and sealers and witnesses :) I'm not sure how long it will last, but maybe I should invest in more white blocks and in the future we can have a temple construction competition during conference or try to replicate different temples each time.....oh, I see great possibilities in our future.

P.S. I am aware that some scale is off and that sealings occur on a higher to make that all happen was beyond my LEGO skills :)

Thursday, April 4, 2013

Silver Lining

Well folks, we still exist. After moving, an unexpected two day hospital stay for Kyle (where we found out that his stomach and intestines have healed, but we are still starting the process of looking for tumors), a week of preparing our old house to return it to our landlord, being screwed over by our landlord....the giant douche, looking for a new apartment, applying for a new apartment, scheduling a move to a new apartment (renting a truck, getting our stuff from storage), the beginning of potty training for Aiden, and being uninsured due to Medicaid error (hopefully it will only last another week) rescheduling 3 appointments for Kyle, postponing necessary blood work for Aiden, and paying $300 out of pocket to see a specialist we have been waiting a month has been a long two weeks. Yes, that all happened in the last two weeks.

The silver lining in all of this is that to celebrate Evan's has been a long four years :) in a month and a day we are leaving to go to Disneyland!!!! Disneyland!!! Except our two day stay in Vegas two years ago, we have never gone on (with the boys) a purely fun vacation. It has always been to visit family, visit schools, visit family/hometowns/schools trips. We have always slept on the floor (which we have always appreciated). So we are going for it. Aiden is still free, we are driving, getting a hotel, and going to Disneyland! And we are going with our two good friends who are Disney enthusiasts and masters of this fairly complicated vacation!

Guys, I just have to hold on through the end of the semester! One month, one day! Here we come! Any tips, tricks, suggestions for us newbies would be appreciated.

P.S. Ducks don't have teeth....I just won that Google bet with Evan and need to gloat. Duh ducks don't have teeth :)