Archibald Five

Farfallows

November22

So why the title “FARFALLOWS”? What are “FARFALLOWS”? They are Chase and Alex’s new favorite food.

Farfallows are Alex’s word for “MARSHMALLOWS”. Chase got them started on them. I had some out on the counter after shopping for Thanksgiving foods, he pulls out the bag and says “Mommy I want some marshmallows.” Chase typically is not a connoisseur of anything sweet. I asked him if he liked marshmallows he replies “Marshmallows are yummy, I want some please.” Of course I gave him some because he was talking so well and he never eats sweets. He apparently LOVES marshmallows. He was cramming them in his mouth chubby bunny style. Yes I said chubby bunny. (Google “chubby bunny marshmallows”). He ate all the ones I gave him and was standing there watching me in the kitchen. I turned my back to him and I hear the shuffling of little feet, I turn back and he has the bad in his hands and look of pure sneaky bliss.

So the next day I am at the computer and Alex comes up to me and says mom “I want some farfellows”. I could not for the life of me figure out what a farfellow was. He finally said “we ate them before, they are small and squish. I finally figured it out. Sure enough Chase had found the bag and was in the living room cramming them in as fast as he could and was NOT sharing the farfellows with Alex.

So anyway I had a good laugh to myself! Alex usually talks pretty clearly so the funny words or interpretations are fewer between these days. This was one that really tickled me.

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My God is SO BIG!

November21

~*~*sings*~*~ “MY GOD IS SO BIG SO STRONG AND SO MIGHTY THERE’S NOTHING THAT HE CANNOT DO!! *BOOM BOOM*” ****repeat for 20 minutes****

This is what I woke up to this morning. I was in a half coma of sleep. That stage where you are still asleep but can hear things. I am hearing Chase SCREAM SINGING the above song in his room. When he gets to the boom boom part he’s supposed to clap. Instead he was banging things against his wall. Now the good news is he was singing so loudly and clearly it too me a minute to realize it was his voice. He was signing so clearly it could have been Aiden singing. So that’s really good.

The bad news. It was 6:45 am. And this is not the first time. As a child/teen my mother used to wake me up singing and turning on lights. I am pretty sure I threw a shoe or two at her. Don’t think I ever hit her (sorry mom if I did) but apparently that gene is being happy without the use of a controlled substance, being happy enough to belt out in song at uncanny times of the morning, and I use morning lightly because before 7 is still nighttime to me… That gene skipped a generation and seems to have picked up with my son Chase. You have no idea how excited I am about that…. Haha! Thanks Mom!

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MRI Fun!

November11

Well we had Chase’s MRI done. It did NOT go as planned.

The plan was, we show up. They knock Chase out with some drugs, scan him and we go home. It could never be that simple.

Instead we show up, they gave Chase drugs, he got high as a kite, thinks he can fly off his bed, we keep restraining him from harmful activities, he never sleeps, fights sleep for well past the time he should have been knocked on his butt. They gave him the max dose they could for his size and all he did was get euphoric. Neil and I got a good laugh at him, but never went to sleep.

So we decided to just give the MRI a try while he was in his drugged up state of euphoria. We take him in and have him strapped to the table with earplugs in his ears, headphones on and stuff stabalizing his head. Then they lower this huge Darth Vader style mask over his face. He was doing GREAT until the machine started. IT WAS SOOOOO LOUD. That freaked him out. The first two tries he was moving too much. Neil and I were able to hold his hands and rub his legs but we couldn’t talk to him. Or rather he couldn’t hear us if we had. He cried the whole time but was relatively still considering. Took a little over 30 minutes to get the scans.

They said they were good enough to read even though he moved some. When he came out he was all sweaty, teary, and still kinda high, and he gave us a double thumbs up while still strapped in. Neil asked him if he wanted to do it again and he said yes. LOL!!!

**UPDATE** The MRI came back NORMAL!!! Hooray!!!

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Another Visit to Rao!

November8

Well we went back to Dallas to visit Dr. Rao again for Chase.

He was pleased with how Chase is doing.

He said it would be good for us to up his B12 injections again. He will now get those EVERY night.

We also added in glutathione cream to be used daily. Glutathione can restore the body’s ability to rid itsself of toxic substances, its a very very strong antioxidant. It works really well for some kids and does nothing for others. We wanted to try it as it’s less invasive and safer than other alternatives to get rid of bad stuff in him like metals.

We changed up some of the probiotics we are having him take. Hopefully they will work out better for him than the last set.

We also added in stronger enzymes to help digest foods and help with any infractions to his diet that he may get along the way.

Also we are still fighting yeast. He wanted to put him back on a heavy duty yeast medicine. Frankly I was concerned about his kidneys as that med can be hard on them. I asked if we could do a more mild medicine that last longer. People seem to have longer sustained results with it. He was very open to that and put him on 90 days of a prescription anti-fungal and said we could do natural stuff with it as well and gave us suggestions.

He also suggested we see a speciality for Chase’s eyes. He gave us the name of a few good doctors in Dallas. He said he thinks his eyes need checked not that there’s anything really wrong but that a speciality doctor could do it much more efficiently and accurately than any other doctor.

He wants us to do more testing. He left it up to us. We are still deciding on what we will do. I know he wants to chelate soon too. I am not sure I am ready for that yet. Overall the appointment went well. It was the best yet. I felt more confident in discussing things I have researched and felt like he listed and we compromised on things I felt were too aggressive and came to good decisions. He again reiterated that Chase has amazing potential. He said he wants to be more aggressive since he is responding so well and does seem to have a strong potential for recovery. As his mother though my first goal is for him to be a safe and healthy as possible. I know him best and if I have learned nothing though all of this it is to trust my gut.

So anyway we are excited to keep moving forward. We go back in late December! :-)

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Smell Your Feet

November1

Yesterday was Halloween. The boys had a ball. My friend Amy and her 2 kids Chad (7) and Gwen (4) came over. They brought their little white mini schnauzer with them.

The boys all picked their costumes this year.

Aiden chose to be Indiana Jones. He had very definite ideas of how Indiana Jones looks. We opted not to buy a costume but put stuff he had with a few new items to make his costume. In the end I think I bought it all (on sale). It was all clothes he could wear again though so that helps. So he was very picking about the color of khaki pants. He is definitely his fathers son. (Neil has names for different colors of khaki – I think he learned the names from the JC Penny catalog when he had to order his clothes for himself — LOVE YOU NEIL). Anyway so Aiden was very particular. We got him a white button up shirt, and I found a awesome hat on clearance in the mens section at Target. We got him a foam whip and a tan messenger bag for his candy. His Papa had a skull from his teaching days that he painted shiny silver to kind of look like the “crystal skull”. Aiden made a VERY convincing Indiana Jones.

Chase chose to be the transformer Bumblebee. When the Halloween costumes first came out at Target the boys wanted to look. Chase saw the bumblebee costume and was sure he was buying it. We didn’t even ask. He saw grabbed and put it in the cart. To Chase if it gets in the cart it goes home with us. Thats how he sees it. Anyway, so he was sure he wanted to be bumblebee. The costume cost enough that we put it back and waited. We kept checking to make sure everytime we went that he wanted to be the same thing. He always did. So finally we sucked it up and purchased the overpriced costume. He was very excited about dressing up and before he has NEVER cared. So we were getting the costume. Period. LOL!! He looooved being Bumblebee, and was very cute!!!

Alex, my sweet little Alex. He originally started the season wanting to be a power ranger. Then he discovered the Wizard of Oz. After seeing the movie he became somewhat fixated on it. He favorite guy… The tinman of course. He came up and told me he wanted to be the tinman. I figured I would have to sew yards of slippery silver fabric but with the power of google on my side we found a tinman costume!!! Alex was SOOOO EXCITED. He knew it was coming in the mail on a Tuesday. Every morning he would ask if it was Tuesday. On Tuesday we just happened to see the UPS man pull up. I told Alex it was here. He bolted for the door and went right out screaming at the man. Neil had pulled up at the same time as the UPS man from work. Alex gave no second thought to Neil he just ran screaming for the UPS driver. I think he made the UPS guys day. He ran inside with his package and was ripping at it to get it open. Aiden helped him. I should have put on the video camera because once we let him try the costume on he started doing the tin man dance in front of the mirror. We were DYING!!!! So that would be cute enough but he was intent on Zoey being Toto. I asked him if I could be Dorthy and he told me no. Aunt Amy should be Dorthy. He told me I should be the evil witch. I have to say I was a little hurt. LOL! At least let me be the good witch kid. Of course he wanted Chase to be a flying monkey so it could have been worse. Anyway he told his Aunt Amy she needed to be Dorthy and told her that Target is where she could get her costume. The boys have a great Aunt because she went and got the costume and surprised Alex. Amy made a VERY GOOD Dorthy. Alex was thrilled. So Amy came over as Dorthy and brought a basket. The put Zoey in the basket and posed for photos. I need to get them from Amy. It made Alex’s month to get to be the tinman and have his Aunt dress up too. Oh I forgot Alex also had to have a oil can and a heart. He was very intent that he needed these two things. His Papa bought him a little oil can and painted it silver. I found the tinmans heart at the costume store, as well as silver body paint. He was the CUTEST Tin Man EVER!!!

So on Halloween we all went out and did the trick or treat thing. After about 5 houses Chase had half a bucket of candy and was done. He was really into it before that but he doesn’t eat candy so he didn’t see going to house after house. LOL He rode on Neil’s shoulders while the other boys, and our friends trick or treated. I was being silly and taught Alex the whole “trick or treat smell my feet give me something good to eat” thing. Well Alex runs up to a house and says “TRICK OR TREAT SMELL YOUR FEET” The lady laughs and says “My feet smell good, do your stink” he was really thrown. It was pretty funny.

The boys ended up with way too much candy. We passed all theirs out and pulled out the allergy safe candy that I bought for them. Stuff like Laffy Taffy and Skittles. It was really a fun Halloween.

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