Mom and Donkey

Now that my computer is working again I can share the story about my mom and the donkey at the horse farm. Truly a hoot!


Meet Donkey:



Donkey meets us and moves onto mom:




Donkey meets mom and likes what he sees, so he follows Mom EVERYWHERE:




Every move she makes, Donkey is literally inches behind:



Quick Mom! You're losing him!

Eileen and I seriously found it hysterical that this Donkey would NOT leave mom alone for a second. What was even funnier was my mother's growing aggitation at the fact that everytime she turned around she ran smack into its face. It took a while but it eventually left mom alone.

Miniature Horse Farm Trip

I took the kids up to a miniature horse farm yesterday. My mom and sister, Eileen went along for the fun too. The kids loved it! Lu was nervous at first because some of the animals were allowed free roam and the animals would just follow her all around. She kept stomping her feet and saying "Scawies, scawies!" She warmed up after a while and was pleased to feed them pellets one at a time. Zachary kept trying to make friends with the animals and would introduce himself to them as though he was expecting the horses to respond with something witty back. When he finally got fed up with the lack of response he told one "Okay, fine, I will just call you Zachary then."

Lots of pics below!


Lu around the time I said "Be careful with your hand on the wire, the chicken will peck your finger."...which was 2 seconds before the chicken pecked her finger.

Zachary delivering his sermon at the little fake church in the western town. The church was his favorite part!

Little window in the church:

Look how cute they look here IN the church!

The church:

Making his "cowboy face":

Lucy feeding the horse:

To get into the park they stamped our hands with an ink pad that definitely was not made for stamping hands. It smeared EVERYWHERE and Lu made the mistake of wiping her mouth with the back of her hand:

There are more to share but my computer is being difficult, so hopefully I can get them up later.

Good thing I didnt waste 90$

So far the Neocate Nutra is a dud. She asks if she can have some but just enjoys stirring it and touching the spoon to her lips with it. She calls it her "sugar" and I don't know why, I refer to it as her pudding. I cant blame her for not liking it. Its basically a congealed version of her already rancid tasting formula. I was hoping she would like it, simply so she can get the texture she craves without having to scarf down 30 lollipops a day. Oh well. Once our free can is gone we will not be buying any more.
Lucy's heat sensitive allergies are flaring up again. The hives on her lips that make her mouth super sensitive are rearing their ugly head for the first time since we raised her medication dosage to an adult level. Every time her mouth is slightly bumped she starts bleeding like she was punched in the face. Fortunately the stains are coming out of her pillowcases, sheets, and clothes pretty easily. I just cant stand the way it looks, her lips are busted and mangled. To top it off, her skin is flaring off and on as well which makes her pretty uncomfortable so shes back to stripping to her diaper every chance she gets. So far, its much much milder than it was last year when she was not on medication. We avoid the heat (anything above 80) whenever we can to try to keep her under control, but I may talk to our doctor to see if a medication change would be worth it in order to get things back to 100% for Lu this summer. I am going to tinker with the way I administer her medcine to see if I can get her to improve on her own before we do anything else though, simply because a med change has its own risks. Since things so far are much better than they were last year I am hesitant to switch medications right away and risk making things worse.

Well that didnt hurt at all!

Lucy's filling was pretty simple this morning. We went into the procedure room, I sat in the chair with her in my lap, the tech bribed her with all sorts of coins and told her about the "princess light" that was going to fix her tooth, the dentist came in, picked the junk out of the hole(until I was about two seconds from passing out), then put some goop in there, shined a light on it, and we were done. Stick a fork in it- DONE.
Afterwards, we went to the toy store so that Lucy could pick out some "compensation" for her troubles, and she selected yet another baby doll. This one is special though, because you fill its belly with water so that its more lifelike. It is an impressive sight, and for just 14.99$ Lucy was able to forget all about the inconvenient dentist appointment earlier this morning. We also picked up a toy helicopter for Zachary because today was his last day of Kindergarten! Which brings me to-

I guess I can announce this here(because I can do whatever I want here, its my blog)...we have decided that next year we will homeschool Zachary instead of sending him back to public school. We are so excited to do this with him and feel blessed that we are able to do this with him.
There are a multitude of reasons for why we have made this decision, that I probably wont share with everyone simply because its long and complicated. But let the record show it was NOT due to a poor performance. As a matter of fact, I will brag that my child(who is the youngest in his class and certainly dealing with the most difficulties out of any other kid in his class), brought home an outstanding report card to finish up the year with. He successfully woo'd the office staff, bus attendant, and entire IEP team over the course of the school year. He had at least one girlfriend that I know of and even got an award for having outstanding manners. He was also awarded "The Bulldog of the Month" earlier this year. Dont get me wrong, I know my child isnt perfect, I am just gosh darn proud of him this year.
Maybe some of our motivations for this decision lie in the fact that our "different" child is labeled "disabled" because of his unique-ness. Or maybe its that every other day some kid in his class of 22 was having a birthday, unbirthday, Friday, or celebration for some nonsense that required the disbursement of ice cream, cake, and pizza- all of which my child cannot have and was forced to sit by and watch while the others enjoyed without compassion. Maybe its that over the last year my 5 year old child was shoved into an extremely tiny classroom for over 7 hours a day with 22 children + 1 teacher and forced to focus solely on academics instead of art, music, or gym activities. And maybe its that after that 7 hours a day of academics he was sent home everyday with homework to do as though he hadn't had enough work. Maybe its some of those things. Maybe. Or maybe, just maybe, the one thing that pushed us over the edge was when the IEP staff at his school actually stated that "the amount of handwriting and academic material taught in Kindergarten is actually developmentally inappropriate for a 5 year old. Many children are in Kindergarten but not functioning at a Kindergarten level, however they do not qualify for services because they are on target for their age level." Maybe that was it.
Whatever our reasons are, they are well grounded. We spent a lot of time researching and debating whether this was the right decision or not. We feel strongly this is the best thing for Zachary and if you happen to not agree, that's fine but we don't really need to hear about it. And I mean that in the nicest way possible. Really, I do. Our decision for next year has already been made and is final, so you see, negative input really isn't going to help. We will spend the next year learning together and assess at the end of the year whether or not we will continue. We probably will reevaluate ourselves EVERY year to determine if we are doing what is in the best interest of our children.
So wish us luck for the upcoming school year! Now all that's left to do is sit back and enjoy the summer!
Thanks for reading and checking in on us(I know this was a long one)!

Tomorrow is the big day

Lucy gets her cavity filled tomorrow. Ugh. I need some tranquilizers. I am praying super hard tonight that this goes smoothly and painlessly. Did I say "Ugh." yet? Ugh.

Lucy and Nutra: A Pictoral Essay

"Ooooh, pudding? For me?? Lets give this a try!"



"Oh, ew! That's disgusting! It tastes like congealed formula! Napkin! Napkin! Now!"



I will just bake a dessert with Mommy instead!


Doesn't Mommy's Apple Brown Betty look YUMMY?

I am gorgeous!

So after checking the doorstep 52 times in the last two days, the free box of Neocate Nutra showed up. Lucy was not pleased with its taste OR texture. She loved playing with it and feeding it to her dolly, "Boo Boo", but preferred not to actually eat it. I will continue to offer it to her in the hopes she will take it once shes used to the idea, but I am not optimistic shes going to come around to it. Oh well.

We did some baking today and Lucy enjoyed helping. She loves to cook and its safe as long as she washes her hands afterward, we don't use milk, and we don't use anything that puts food protein into the air (such as using flour or frying foods). Today she helped slice apples and tear breadcrumbs. Shes completely fascinated with cooking and really doesn't seem to mind that she cant have any herself. Maybe one day, through some strange ironic twist, she will become a chef!

An excellent article

http://www.montereyherald.com/local/ci_12539968
An excellent article on a girl with EE. Its worth a read if you have the time :)

Nutra is coming!

I sent an email out to Nutricia this morning requesting a sample of their new Nutra(see post below). They got back to me right away and said they were shipping us out a free can right away! Yay!!!

Suffer her wrath!

Well, in my last post I stated that Lucy had a "little" chest cold, which was her cue to get worse. This morning her cold was much worse, coughing until she gagged or until she vomited much of the day. She also bumped up her irritability a few levels to match the severity of her illness. When she is sick she feels that everyone MUST pay for her pain. For most of the day it was me, and then Zachary came home from school and she began torturing him.
Late in the evening I left them both sitting on opposite sides of the couch while I went downstairs to grab some socks. Within a moment I heard Zachary struggling underneath his sister(he will not hit her back or hurt her). And as I came up the stairs I hear Zachary screaming "She bit me! She bit meeeee!" When I got to the top of the stairs Lucy ran past me and stuck her nose in the corner- didn't even need to be told to serve her punishment! Its like the child actually weighed whether or not biting her brother was worth the time out and decided that it was! Sheesh!
Zachary and I will BOTH pray that Lucy feels better tomorrow!
I also wanted to add that I am SO excited right now. I just found out about a brand new product from Nutricia, the company that makes Lucy's formula. A new formula called Nutra ( http://www.neocate.com/aaa_neocate/16153-product-neocate-nutra.html ) that is "semi-solid"...basically like pudding! Lucy could potentially eat this with a spoon at the dinner table like FOOD!! Of course, this wouldn't be her main formula, just sort of a "snack" for normalcy, but wow its exciting! There is a chance she wont tolerate it, but we wont know until we try. It unfortunately costs 90$ so I am not sure when exactly we will try it, but I would certainly like to give it a trial run.

Cold

Not much going on here except that Lucy has a little chest cold- which makes her nasty and mean! Hopefully it will be gone soon.
On Monday I get a special treat- dinner out with a mom from my support group for parents of kids with no foods! Yay! Its such a wonderful thing to be able to sit down with another mom that knows how it is to parent a child like Lucy! My friend's daughter is 5, recently had a G-tube put in, and is still no foods. I have a feeling that one day this little girl will become a mentor for Lucy. I feel so lucky to have someone dealing with the same disease living so very close to us!