Sunday, September 18, 2016

The birthday girl! Happy 7th Birthday, Ellie Bear

I wrote this post last week, but blogger decided to delete the 2 posts that I wrote.  Anyway, last weekend we celebrated Ellie Bear's 7th birthday a little early.  Her birthday was actually this past Friday, but we originally thought that she would be in the hospital after the surgery that has been canceled.

Ellie is fixated on school buses and it is actually one of the only words that she can say clearly so we opted to go with a school bus theme birthday party.  We kept the party small - just a few close family friends.  I went a little crazy with clipart and when it came to invitations and "thank you".

I had the brilliant idea of decorating stop signs with markers and glitter glue.  A big mistake.  I ended up covered in glitter glue after Ellie decided to use her teeth to remove the cap.  Girlfriend sent the glitter shooting across the room.  Of course, The Bear was covered head to toe in sparkles.  Still, she had fun and that is what counts. 

One of our family friends showed up with two Mickey and Minnie Mouse balloons.  You would think they hung the stars.  Ellie dance around while humming to herself.  

Now the cake was a big hit.  Target has delicious cakes with really tasty icing.  My little chocolate monster was thrilled to have chocolate cake with chocolate icing.  I got the school bus off Amazon and Ellie was very pleased.  She couldn't believe that it was finally her "happy birthday".

Of course, Ellie stole the cake server and used it as her own personal spoon.

For the party favors, I make school buses using Hershey nuggets.  You can get a free printable from the blog like a pretty petunia.

 (Thank you tags using clipart and

Overall, it seemed that everyone had a great and Ellie was exhausted after wards.  So were Andrew and me.

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Sunday, September 4, 2016

A quick update on Urology/GI procedure plan

When I last left off, I mentioned that both urologists confirmed that they could perform Ellie's cecostomy and tube placement for Monday Sept. 12, but they wanted to discuss the surgical approach.  Well. . . I was confused because at our long awaited urology pre-op appointment, we decided on a laparoscopic approach with the possibility of needing to open her abdomen up completely.

Of course, the other surgeon was out of town so they couldn't not discuss immediately.  I gave 2 weeks and left a message this past Monday with the nurse.  Tuesday, I get a phone call from Ellie's secondary GI specialist, the one who performed the colon manometry back in June. He tells me that the procedure will be done in interventional radiology [IR] where they just "pop" the button right in.  It is less invasive and the hospital stay is closer to 48 hour as opposed to 4 days.  Obviously, this is all good, except, at our urology appointment in July, GI relayed to urology to not do it through IR because her colon may be too floppy from being stretched out.  What?!  So do they bring her into IR and if it doesn't work we need to relocated to the OR?

Friday approached and as usual, I never heard back from the urology nurse.  Dr. McQ, the actual urologist calls me personally.  Her surgery on 9/12 was CANCELLED back on Tuesday since her procedure will be performed in interventional radiology and not the OR. She assumed that I knew this already.  Urology is no longer in charge.  GI put in the orders.  Radiology is taking over. If GI was going to put in the orders, why didn't he do so in June?!  I immediately called GI and then googled the number for radiology.  Radiology never calls back, but GI does. . . only it is the other GI's nurse.  According to her, IR is booking into late November, early December.  I may have lost it.  I spent the afternoon angry crying.

first day of 1st grade


June 16th - referred to pediatric surgery by GI, then Dr. C in urology
Dr. C out of town, then takes another week to look at her case
Referred to Dr. McQ in urology and she is out of town
July 24th - urology appointment, tentative surgery date because need to coordinate with Dr. S
Dr. S it out of town so more waiting to coordinate
Both urologist can do the 12th, but need to discuss approach, Dr. S out of town
August 30th - GI calls to change plan
Sept. 2nd - surgery cancelled
No new date yet.

She lost her front tooth!

This is ridiculous!  If she gets booked in December that is SIX months since the ordinal order was put in.  SIX MONTHS.  My daughter is in pain.  PAIN.  She is uncomfortable and only goes with a special enema that I have to constitute myself.  We can only give those enemas twice a week which is not enough to help her.  Her medications do nothing.  She spikes fevers because of this.  She had to have a urinary catheterization due to being unable to pee and screaming secondary to constipation.  This is unacceptable.  I will be rattling radiology's cage.  I will cry and beg for my daughter, but it isn't like I can personally create an opening in IR.  I will contact a patient advocate in hopes of filing a complaint.  Other than that, all I can do is scream and watch Ellie suffer for another 2.5 to 3 months while they all had their thumbs stuck up their *sses.  It seems they all forgot that a real human child is involved.

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A mask for kids with Down syndrome

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