Halloween Ribbon Wreath

Ribbon Wreath's are all over Pinterest right now and I think they're super cute.  Most of the images direct you to an Etsy page and they are charging up to $100 for one. So...I thought I should try and make one myself (with a little help from Ms. Alexa, of course).

I've had a lot of nice comments about my ribbon wreath and some people have asked for directions on how to make their own so I thought I'd post a very quick tutorial.   I don't think there is any right or wrong way to do it and I just went with what was easiest.

Supplies:
Foam Wreath - whatever size you want
Ribbon in various widths and colors - LOTS OF IT!  I believe I used at least 12 different colors of ribbon.
Scissors
Straight pins (or hot glue if you're braver and less prone to burn yourself than me)
Embellishments, if desired.

Directions:
Something that you should do before you start is cover the wreath with either wide ribbon, tulle or spray paint so the white doesn't show through.  I didn't do this but wish I would've.

Next, start cutting strips of ribbon.  I decided I wanted varying lengths to give the wreath more dimension and texture.  This made it easy because I didn't do any measuring, I just cut where it looked good.  If you want your wreath to be more uniform and perfect, go with the same length of ribbon each time - probably around 4-5 inches.

Next, start making loops of ribbon and fastening them to the wreath with a straight pin.  Depending on the size/location of the ribbon you may need to use 2 pins per ribbon loop.  I chose to make my loops like this:

Then I stuck them to the wreath.  I did one type of ribbon at a time to try and place them uniformly around the wreath.  I also chose to change the direction of the ribbon loops and use no particular pattern because I liked that look better.  You could place them in the same direction in rows if you'd rather.

Then just fill in the entire top and sides of the wreath with ribbon.  This part took me several days to accomplish because I didn't have enough time in one sitting to do it all.

When the whole wreath is covered you can add embellishments if you want.  I chose a cute little spider that Alexa picked out at Michaels in the discount section.

You're done!

Parker Is Keeping Us On Our Toes

It's been awhile since I've posted a Parker update.  So I'll do my best to catch everyone up.  I want to start by posting this video because it was the highlight of our week!

Isn't he amazing?!?!  I'm so proud of him.  Pulling up to a stand is something Parker has worked hard on for awhile now and he's figured it out.  Sure, it may not be the most conventional way but nothing he does ever seems to be.

In other news, Parker's surgery at MAYO had to be rescheduled since he's been fighting some respiratory problems for a couple of months now.  While we really want to get this surgery out of the way, we also want to make sure he's at his best for the surgery.  So...the new surgery date is October 28th.  The hope is to be back home in time for Halloween because that's always a fun time for the kids.

Many tests were done in the last couple of weeks to help figure out what's going on with Parker. We found out he had an ear infection (the first one since his ear tubes were removed) so he was started on a new antibiotic for that.  He also had a chest x-ray which came back good except that it showed an enlarged heart.  He had a heart echo done last week and luckily it was normal.  Nothing concerning there.  Whew!

A trach aspirate was done (this is where they suction Parker's trach and send the sample to the lab to see if there's any bacteria present).  It showed the same bug that it always does but it's probably overgrowing and getting out of control - which it does sometimes.  So he was started on new antibiotics for that too.

I also have been working hard with the insurance company, Doctor's office and Medical supply company to get approved for more suction catheters each month.  Right now we have to reuse suction catheters and my theory is that this is part of the problem.  How are we supposed to get rid of the annoying bug that is causing these trach infections if we continue to reuse catheters and continuously reintroduce the bacteria that we just suctioned out?  I'm hopeful that if we get to use a different suction catheter each time that it will help.  In the meantime, some wonderful trach Mommies that I've met on Facebook have offered to send me some suction catheters they no longer need.  I love my on-line groups!!!

Additionally, blood work showed Parker is allergic to cow's milk.  This wasn't too surprising since Parker couldn't tolerate breast milk or other formulas as a baby.  That's why he was started on Neocate formula and was on it for a couple of years.  A few months ago, the GI Doctor and Dietitian thought it was time to challenge his system a bit and he was put on Peptamen Jr.   I loved the Peptamen Jr. because it helped with Parker's poo issues a lot (you may remember from previous posts that I was having to deal with blowouts daily).  Well, once he got used to the Peptamen Jr. the poo problems subsided a lot and I was enjoying not spending a great part of my week cleaning up messes. Well, the increased respiratory symptoms started about the time he was transitioned to the Peptamen and with the confirmation of cow's milk allergy we decided we needed to investigate further.

Earlier this week, we took him to an allergist at Children's in Omaha.  They did a scratch test using the Peptamen Jr. and it was confirmed he is sensitive (and likely allergic) to it.  Bummer.  So, now we are doing a trial on a different elemental formula called Elecare.   The Dietitian and allergist said the next step would be to transition him to a soy based formula.  Well, I'm not terribly excited about Parker being on the Elecare or soy-based formula for the rest of his life so I'm looking into starting a blended diet for him.  This is when you take "real" foods and pulverize them in a blender so much that you can then administer them by the feeding tube.  They have to be blended up really, really well so they don't clog the tube but it's nice because you can monitor exactly what your child gets, know they're getting excellent nutrition, and it's more "normal" for their systems - not so full of chemicals and ingredients you can't pronounce.

This is a big undertaking, a bit overwhelming and expensive but I believe it may be what is best for Parker. So...I'm going to give it my best and see what happens!  Hopefully my little guy will start gaining weight again too (it's been over 6 months since he's gained any weight).

In addition to all the  Doctor appointments we've been to lately (which has been A LOT), we've also increased Parker's therapy.  We now see physical therapy, occupational therapy and speech therapy once weekly on an outpatient basis.  This is in addition to the therapy providers from the school system.  Some weeks I feel like I spend more time at appointments than I do at home.  I guess I should be grateful because compared to when Parker was a baby we don't have nearly as many appointments.  However, it still seems like a lot.  No wonder Parker is always sick - he gets exposed to all sorts of new germs all the time.

I'm also working on changing Parker's pediatrician.  Our current pediatrician is very nice and I appreciate that she doesn't rush us when we're there but many mistakes have been made recently and I think I've lost the trust I had in her.  I will have to second guess all of her recommendations from here on out and that just really doesn't work for me.  Well, you'd think changing physicians is fairly straight forward but not when you have a medically complex child.  Other pediatricians don't exactly jump on the chance of getting involved and I've been turned down by one of the largest pediatric practices in town.  Thankfully, Parker's Pulmonologist has offered to personally call and refer Parker to some of the pediatricians that she knows in Lincoln.  I'm not exactly sure when this will all take place but I'm hoping soon.   Prayers in this area would be appreciated!!

Other than that, Parker is still a happy, determined little guy who likes to cuddle, sing songs, wrestle with his sister, swing, play ball, and throw all of his toys as far as he can.  His naughty side is starting to peak through lately as well.  He likes to pull his sisters hair and does test limits with Paul and I.  It's hard to get upset with him for these things because we are so happy he is hitting these developmental milestones.  However, we are trying to teach him the sign for "hurt" for when he pulls hair or bites and we are working at being consistent with our responses so he knows what is acceptable behavior and what isn't.  

Well that covers the updates from the past few weeks.  Thanks for reading and staying up to date on this journey of ours.  I'll try to post some Alexa updates really soon.

What exactly is Vesicoureteral Reflux?

Several people have asked for more details on Parker's upcoming surgery to fix his Vesicoureteral Reflux.  I don't think I do a very good job of explaining it so I thought I'd attach the MAYO website with the details so those people can educate themselves if interested.  To see that, click here.  Parker's surgery date is scheduled for Monday, September 30th at MAYO Clinic in Rochester, Minnesota.  This date is going to be here before we know it.  I don't even know where August went?!?!?

Paul and I are opting for the less-invasive endoscopic surgery.  This is explained under the "treatments and drugs" tab.  Paul and I feel good with this option even though the success rates are lower.  If there's a chance we can "fix" this issue without major, open surgery and a huge recovery time then we want to try that first. This is also what Dr. Kramer at MAYO highly recommended in Parker's case.

We will repeat some testing three months following Parker's surgery to find out if it worked.  If so, then he will no longer have to be on his prophylactic antibiotic and will be good to go.  Let's hope and pray that is the case.

In the meantime, we are praying that Parker stays healthy and does not get another urinary tract infection.  If that happens, his surgery will have to be postponed.  Parker has been dealing with respiratory problems for about 6 weeks now.  We don't believe he's "ill" but something is definitely going on.  It may be a reactive airway problem (early asthma), irritation, allergies, or who knows what.  The unfortunate part of this is that he isn't tolerating his speaking valve or the trach cap which means he's not able to make many noises.  This has been a huge step back and I hope we can figure out what's going on so we can start making progress in this area again.  Our major prayer is that whatever this is doesn't take a turn and develop into something more serious - like pneumonia.

Our other prayer request is for Alexa.  We found out that siblings have a one in three chance of also having Vesicoureteral Reflux (VUR).  Parker's VUR is most likely due to his chromosomal deletion but there's no way of knowing if that is the case or if he would've had this anyway.  So, the MAYO Physician recommended we have Alexa tested as well.  She does have some of the symptoms (not all) so we have decided to go ahead and find out for sure.

Alexa goes in for a Voiding Cysto-Urethrogram tomorrow at Children's Hospital in Omaha.  Alexa has never had any major medical tests done and screams as though she was dying if she scrapes her knee.  So...needless to say, Paul and I are not looking forward to this testing.  We have tried to prepare her, are bribing her with treats if she does well and I have asked for a child life specialist to thoroughly explain the procedure to her once we get to the hospital tomorrow.  Hopefully, all will go well and my big girl will surprise me.  We also pray that they find no issues and Alexa gets a clean bill of health.

Thank you to all of you who ask questions, want to keep updated on what's going on with our little family and those of you that pray for us.  We are comforted so much by this and feel so blessed to have such a wonderful support system and network of wonderful people who care for us!  THANK YOU!!