A Wish

A Wish was granted for Ashton to be with kids just like him, it was beautiful to see all of them together again like a family reunion.

The conference for us was much more than a wish.

I am reminded each conference but this one in particular, about how alone we are. Sitting in a room full of women who know exactly what I go through, hearing the stories like they are read from my mind is truly amazing. We discussed just that, and it made me quite emotional because these are the women who get it. We all have friends and family (and we know you try) but they will never truly understand; and that is what makes us unique and a family. I am even more motivated to see my CFC 'sisters' at the next conference and see how much things have changed, hug them and spend much needed time venting away with a drink- a toast! to those who understand because I think that's the hardest part for me, being alone.

What's even more amazing is the kids themselves. I can't even put into words how beautiful these kids are. Watching them go from table to table gazing into each others eyes as if they are saying "I know, I'm here" to one another. They knew exactly when to come hold Ashton's hand, and when to back off. No questions asked when he cried- they knew why and they sympathized with him. Being in this huge world all on your own is hard too and I'm sure they feel like I do, because who really understands them besides each other?

No words can fully describe it but I know they feel as I do; connected and alone.

As you go through life with your daily struggles, I want to remind you that your problems aren't always as big as they seem, I can tell you first hand as a mom of 5. I want to remind you that your healthy child who is throwing toys and tantruming is healthy. While ours are in the hospital and having seizures, ECG's and MRI's. While your child is playing in the backyard, ours are in physio therapy and struggling to walk or even roll over. While your child won't eat their broccoli, ours won't eat anything at all some days and have to be fed by a tube or hospitalized for dehydration. I'm not comparing our kids- hey, we all have problems. I'm just reminding you to live each day enjoy your children forget about the messy kitchen and be with them. I am reminding myself as well.

If you are reading this and feel alone- I urge you to seek a group of amazing people who go through something similar, if your child has special needs or not. My secret to happiness is living.

Denise 

Things Ashton Can Say

Ashton has wonderful vocabulary, and I thought I would post a list here for you to see. He has a funny way of talking and always repeats himself. He waits for us to repeat him then he'll say something else, it's adorable! 

-thanks guy, thanks
-he will bring me some, pizza guy (he means pop)
-dad is home, he is home
-puppy will lick me, he will say woof
-thanks store (when we get him a treat) 
-Old Mcdonald's has some fries 
-daaaaaaaaad (screams it) 
-Allura changed me, not Brayden, not Brayden (last night SO funny)
-steve, steve will come (Blues Clues) 
-I want that (new this last few days) 
-aw Lizzy, aw 
-I will hit youuuu (when the nurse at the hospital gave him his IV) 
-grannyyyyyyyy (screams it happily) 
-puppy some, puppy lick 


I will add more as time goes on, hope it made you smile

Seizure Setback

On a cool morning in November,  a normal day turned into a very scary one. A seizure, followed by another... Before you knew it the house was swarming with 7 firefighters, 3 Ambulance attendants, a hysterical mom, and a best friend to the rescue. I don't want to relive the experience- -it.was.so.traumatic.- so I will move on now, just know that he is alright.



Tomorrow is the follow up -finally- sleep deprived EEG followed by Neuro app next week. If he has a pattern he has epilepsy, if not then perhaps it was just a one time event. (lets hope) Either way, we watch him sleep now on the Ashton- cam. With hopes he sleeps well (sleep deprivation may have been a contributing factor) is well hydrated, and eats plenty before bed. 


Today we go to school, see his favorite people...  and just be Ashton. Smelly toes, hungry tummy, huggable little man. 


Until the next adventure...

Autism, Anxiety... Angelic

Ashton took the bus today- typical hospital app with his geneticist. BUT he hasn't been for 4 years so this was a biggie. Went over major issues my little man has been facing. 

Demonstration: Ashton: "pant pant pant, whine whine, cry"  Mom: "Ashton, what's wrong?" A: "pant pant pant pant" M: "Ash, calm down... you're okay." A: "uncontrollably crying" M: -walking away, saddened by a feeling of not being able to help- 

This happens 10-50 times/day. It's heartbreaking. He wants nothing and everything all.at.once. 

Diagnosis: AMAZING! finally- we hope to have figured it out. Anxiety disorder. The geneticist was shocked we have been living like this, and -GET THIS- apologized.SO a referral has been sent to the psych and a medication will be in his near future.She said since his trigger to calm down is "pop" she believes his brain is asking for a stimulant to help it relax, thus craving pop. She encouraged the pop and said until the meds kick in, it's his vice and his brain may need it. 

Issue #2: spots on his skin
Diagnosis: NORMAL! 

Issue #3: Behavior issues, communication struggles among many many other things.
Diagnosis: She believes he has... ready for this one?.... AUTISM! she sent a referral for us and just wants a "confirmation" of what she already observed. WHICH means, LOTS of funding opens up- LOTS. This IS good news. 

Otherwise Ashy is doing pretty well, she gave us some pros and cons of the growth hormone, which we decided a while back against. But she would like us to read some more literature about it. She said one major con would be that if he doesn't ever walk, we may end up with a very large grown up to carry around -LOL-. a big pro would be his muscle mass will improve since he has NONE and maybe it will help him push himself in his wheelchair, or crawl better? 

Ashton is tired, sipping some pop on the couch and watching Blues Clues. Thanks for reading!

American Puppies Say "Meow"

Apparently, according to Ashton American puppies say "Meooooow" instead of the usual "Woof" like back home. Thanks Ashton, for the laugh.

BIg Seat... Small Feat

OKAY! so the OC calls today to tell me she has some exciting news to share. In her therapy session today she sat Ashton on the toilet on a ring, with a foot stool under his feet! He sat there patiently for about 10 minutes. Calmly, quietly chit chatting and a few giggles. 

One word: AMAZED! he didn't panic or have an anxiety attack (which for him right now is everyday) he managed to sit there, unbelievable. 

I am so so proud, and hope to post about his first "pee" oh man, that will be awesome. I never thought a pee could excite me so much. 

Hopefully he'll let me get a famous potty picture too.... but shhhhhh don't tell him I said that. 

Halloween Puppy

Trick or Treat! 

Obviously a puppy ghost isn't a typical costume, but it sure beats Dora or some other widely known character. Why you ask? well, because being a puppy ghost means you can say booo woof all day long and people will hand you candy. Take THAT Dora! 


It was all too fun Trick or Treating this year, all the funny pumpkins we touched (and threw) it's not all about Candy with him you see. He LOVES seeing the kids all dressed up. 


Candy was a HUGE part of it though, he carefully examined each piece plunked into his bucket. Some he said "thanks guy" and some he said "put me dowwwwwn" because he really just wanted to look at the bar, so really can you blame him.

So now, he has endless treats to tinker with everyday and eat each night. We bribe him with his peaches and peas to get those sought after smarties he keeps eyeballing. Thus ends Ashton's favorite season- well until Santa rolls into town that is.