on the medical front . . . in pictures!

Jack had his inpatient VEEG (Video monitored EEG) on Monday. Dr. S. was hoping we could get more information on whether Jack is having seizures or what type he is at risk of having. His short outpatient EEG was clearly abnormal. Check in was at noon, you can see he was still sleeping! BUT the poor kid would be woken up and soon led into the torture room...

I was warned that the toxic smell of the glue they use to adhere the electrodes to the hair is awful and they were right, it was unbearable for him. Even with the fans, he cried and retched through the whole process. Then the use of the airgun to dry the glue didnt help any. Gagging through his tears, I held his hand reassuring him it was almost over.

Honestly, Ill never understand why nurses or techs say such stupid things while your child is clearly struggling. Whether you think this child is acting up, being a baby or whatever, NEVER say things to the child like, "it DOESNT hurt" or "I didnt even touch you!" I mean whats the point in that?! Obviously its real to that child, even if whats going on shouldnt hurt or be uncomfortable. Ill never understand why people decide to work with children but dont really have a "child friendly" bedside manner.  He has sensory issues, and unless youve had a child with sensory issues, you cant begin to know how these kids work. Lets just say I wasnt happy with her comments to Jack.

He was completely exhausted, after settling in our room he

was fast asleep. AND slept for 5 more hours!

Later he played a little Wii, but found bowling in bed wasnt too easy!

It was a looooong night, after sleeping all day, Jack couldnt sleep at all.

He finally fell asleep at 3:30am, I was about to go out of my mind by then!

This picture cracks me up, he looks like an infant in that bed :)

I really didnt see anything unusual, Im sure they didnt catch anything overnight. I pushed the button only 3 times, even though I knew it wasnt a seizure and more just sleep jerking. The Nuero told me that he wanted me to push the button on any movement just in case it was something important--as its difficult for them to find it on 24 hrs of video!

The morning looked a lot like this :( he was retching from 6am on.

It took us about 40 minutes to wash the glue out of his hair!

He was very happy to be leaving! I was so tired.

NOW our Urology Appointment...

This was an interesting one! 

First we had to wait, so we took our buzzer and went outside

and enjoyed the little sun we get here in Seattle until it went off.

Then we had to have Jacks blood draw, to check his

6mp levels and the usual stuff his GI wants every 6 weeks.

This is HECTOR, he's the amazing lab tech at Seattle Childrens! Ive talked to many Moms that ask for Hector for their childs blood draws. I wish this was better but I didnt bring my camera and these were all on my iPhone. He is AMAZING! See that smile on my sons face??! Well finally we have no tears or anxiety with blood draws, Jack LOVES this guy!

Then onto the Renal Ultrasound, to check his kidneys and bladder.

He DID NOT like this one bit, the Doppler in the ribs made him Squirm!

 Then a KUB to check whether he was backed up!

Then a urine sample...

NOW we get to meet the Assistant to the Urologist! this is quite a process!

She came in and quickly brought up Jacks KUB scan...

Actually she brought up BOTH scans, the one today and the one he had in April. The one on the right is from April. This is the scan that his GI said showed he was FULL OF AIR, but he WAS NOT backed up. The black areas is AIR. So now we look at the left scan, still more AIR but possibly a little more stool in this one.

 BUT this assistant, told me that BOTH scans showed he was backed up and he needed a "clean out", WHAT?, HUH? SO I told her that 2 GI's looked at this scan in April and BOTH said this was a child FULL OF AIR. She disagreed, saying this is probably why Jack has incontinence issues both ways. I was confused.

NOW WE GET TO MEET

THE UROLOGIST, right???!

SO she walks in and tells me that his Renal U/S was normal and his bladder looked good too. His urine sample showed nothing to explain his incontinence either. Then she looks at both KUB scans and agrees with her assistant, he is BACKED UP! So we go over whats been going on with Jack, when this all started ect...She then said she "GOOGLED" Mito to see if she found any info on Mito kids having this issue--she said she found nothing. Although I know Moms that have told me that their kids are back in diapers too...but she wasnt impressed. Obviously she didnt bother to pull up the mito action site either.

Then she asked Jack a few questions. From here it gets weird...

So she looks at me and says "He's a BABY TALKER" I said what? "Yeah, He's a BABY TALKER" I said, "what do you mean by a Baby talker?" she says, "well he talks baby talk" Its then Jack overheard us (DUH! he can hear you lady!) and Jack says, "BABY TALKER?"  AND then she turns her stool around and said, "YES, YOURE A BABY TALKER!"  I thought wow, HOW RUDE! She then says, "well, he's immature for age 8". I still dont get why she said Baby Talker, my son doesnt talk like a baby. He reads chapter books and has a large vocabulary. I couldnt understand how she got that from asking him just a few questions anyways. Ive never had any Teacher, Therapist, family or anyone say then think he is a Baby Talker, whatever. Right then, I wasnt thrilled with this woman.

BUT, I was willing to listen and get her ideas of what could cause my 8 yr old to lose control when he was once fully daytime potty trained for 2 years. She said it is likely a combination of the Mito and behavioral...but mentioned, "my experience with chronically ill children, they like attention!" I told her that Jack didnt like what was going on and was embarrassed--she says, "well in general he's always gotten more attention than the other kids and he likes it" 

OK...(true he has gotten more attention!)

SO long story short, she said that we needed to buy him this watch that he will wear and it will be set to alarm every hour. He will have to stop what he's doing every hour, on the hour and go sit down and try to go both ways. This is without me prompting him to go or she says, even asking him if he went. This gives him control over all his potty stuff. Makes sense, even though down deep I feel there must be something going on physically.

HOWEVER, a combination of both like she says is more likely, Im willing to accept that. I always keep an open mind and try not to blame everything on Mito.

SO the Watch finally came today, tomorrow will be his first day wearing it. Im praying at least if he goes every hour like he's suppose to that if it is physical then there wont be much in there when he loses control.

She told me if he's having accidents in between the 1 hour that he will need to have the Urodynamics testing. This is a very uncomfortable test which involves a catheter--you get the picture! Im praying we get somewhere without that one. As I know my sensory boy wouldnt do well at all with it.  We see her in August unless the hourly thing doesnt

work!                      
                                                                                              

 
This was a 4 hour appointment, we both were exhausted.

ONTO OUR GI APPOINTMENT!

 Surprise, surprise, he slept through the whole thing!

I was looking forward to this one since I was anxious to ask her what she thought of these KUB scans. Well, guess what? HE IS NOT BACKED UP! She told me that it was AIR in there still, more so in April but even this recent one, she said NO, he looked good! So Im not sure why both the Urologist and her assistant were adamant that he was backed up. I was so glad he wasnt because Ive been working so hard to keep him going and getting the perfect dosage of the Miralax.

NOW for Jacks labs, his ALT was HIGH this last lab, meaning his liver was toxic from the chemo drug he is taking. So we adjusted the dose, hoping that it goes back down and continues to do its job. He needs this drug to keep his small bowel inflammation down.

Jacks weight is staying steady at 50lbs! Im so happy with his weight and his GI is too. As for his stomach pain, we havent been able to pin point whats going on there. I removed High Fructose, made no difference. I started to add lactaid to any dairy he drinks, no difference. I then removed both, NO DIFFERENCE! He tested negative for both but it was worth a try since all else he gets is Elecare and a few chips each day. We really notice more belly pain after he eats and most early mornings and late nights. So no solution yet.

Well if you made it this far, youre a true friend! Sorry so long, weve been busy! I had more but thought this was enough for now, Thanks for reading :) Hugs to your littleones tonight.

Continue to keep EITHENE and her family in your prayers.

Praying for comfort and peace Jessica, always thinking of you.