Big Bows and Tippy Toes

Well, nothing but great news today!  (I don’t think I’ve said that before!)

Avery is home again!  She had a staph infection on her wound site, but it was not MRSA.  She got discharged yesterday evening with a 3x daily antibiotic. 

When we got home I finally had a chance to check the mail.  I’m in a Pediatric Feeding Disorders group on Facebook which has proven to be a wealth of helpful information to me!  I posted a picture of Avery’s g-tube site and was told to get a medication called calmoseptine.  I ordered it from Amazon a few days ago, but then of course we went to the hospital.  Last night I got to put some on her incision and I am SO happy to say that her stomach is no longer red, swollen or tender!  The wound that was so big a few days ago is tiny now.  It has healed amazingly, and it actually doesn’t make my (very weak stomached) sister want to pass out or vomit!  (Love you Kassi!)  The calmoseptine is amazing.  I put it on her site about 2x a day when I do her dressing changes and it has seriously made a world of difference.  I can’t remember who it was that told me about it – but if you are reading this, THANK YOU!  That was seriously the most amazing suggestion!

I just want to send a huge shout out to one of my fellow July 2012 Mom’s.  She has a business on Facebook that just had a great giveaway (I wish I would’ve written about it a few days ago but forgot!) and she is such a sweet, kind, amazing person.  The clothes she makes and sells are absolutely adorable (Pageant worthy!) and it shines through in the beauty and elegance of her items.  Her Facebook Page is Big Bows and Tippy Toes  “like” her page and support a wonderful mother!

This week is going to be so full of appointments, but I’m hoping and praying that our appointment on Tuesday will be the end of our CPS investigation.  We have our appointment with the wonderful Geneticist locally and are going to see if he can further explain the OI diagnosis and tell CPS the details about it and how the blood test works.  Our test results have not come back in yet, but it has only been since 11/13 since we sent them in.

I’m also elated to say that after a second wrist x-ray the buckle fracture that was originally suspected in Fargo was not there!  I’m not sure what happened that night.  She was so miserable and splinting really did seem to help her arm – but regardless, I’m so happy that there ISN’T another break.  I know how much a break could seem like a ‘positive’ thing in this investigation, but the pain that comes along with it and the long-term problems from multiple fractures aren’t worth it.  I know that in the end the state will see that I am a good, loving mother who has never done anything short of be amazing for my children (all of them!)

 I don’t know if I’ve written before about being in school full-time, but I am.  I’ve been taking ‘short’ classes this year (they are 8 week classes instead of 16) and because of everything that has gone on I’ve fallen so far behind.  I’m up extra late tonight to get caught up.  My professors have been nothing short of absolutely amazing and understanding this whole time, but the semester ends at the end of next week and I need to get them done!

 If someone who is reading this can help me with a problem I’m having with Avery’s clothes, I would greatly appreciate it.  We have been putting her in 3-6 or 6-9 month sleepers at night, but because the tube is also there we have to cut a hole in them to allow the tube to come out since she is on continuous feeds throughout the night.  I’m looking for a way to “patch” the hole so that it doesn’t get any bigger.  Basically I need to be able to still put the tube in and out, but I don’t want the hole to continue to expand from daily wear and tear and the washing machine.  Avery is growing so slowly that we will most likely be in this size for many months and I don’t want them to fall apart before their time is up.  (Plus, if I find another tubie mom I can donate them!)  I have a sewing machine, although I really don’t know how to use it, I’m willing to take any suggestions on how to take care of this problem!

 Tomorrow I’m going back up to the hospital to decorate their bay windows in a winter scene.  The photo above shows Avery's room the day we left the hospital.  It wasn't quite done, but I bet it's a lot better than the parking lot view that was there before!  The child life specialist there is so incredible and works solely on donations, so I’m also bringing a load of baby clothes and interactive toys to help keep her supply full.  Most of the time the toys are only there based on donations.  We’ve discovered that our local hospital is in need of baby clothes (girls and boys) up to 24 months, toys that are interactive or encourage pretend play (little people, tag readers, etc..) and a few other basic baby necessities like bouncers, swings, jumpers, exercausers, etc… So we are going to be going through all of the girls toys and making sure that the ones that are still in good condition and aren’t used anymore get donated to our hospital.  We know how hard it is to be stuck in a hospital room without enough distractions! This holiday season, if you are overloaded on toys, consider donating to your local pediatric floor! 

 

In closing, I'll leave you with a few awesome photos.  The first one is of Madi (our 3 year old) who just started ballet this week with her best friend.   The second is of Avery and "P", my best friend's daugther.  "P" is only 5 weeks old!!