The Next Steps

Hi Everyone!

When Colin was discharged from the hospital, he began seeing three in-home therapists, Occupational Therapy, Physical Therapy, and Speech Therapy. He has been discharged from Speech Therapy and will soon be discharged from Physical Therapy since he is age appropriate.  He will also soon graduate from BPD Clinic since all of his needs are now met through Aerodigestive clinic, he's graduated from Neurology, and has made huge strides in other areas as well.  I am so amazed at his progress, he has come so far from that hospital bed.  Now we are anticipating decannulation sometime in the near future, Lord willing.  On February 5th, he will have hernia surgery and while he is under, his ENT doctor will take a look at his airway.  The last time she did a bronchoscopy, she cut out a big granuloma and advised us that his tracheamalacia was much improved.  We are hoping that all looks well and that we can then schedule a sleep study which will determine if the trach is ready to be removed.  We're not sure the timeline yet, but hoping sooner rather than later.  We hope, then, that the stoma will close on it's own, if it does not, he will have to have it surgically closed.

At the end of February, we will travel to a feeding clinic in Richmond, Virginia for a consultation.  Colin will then be added to a wait list in either Richmond or Evansville, IN to be part of an intensive feeding clinic where he will be fed 4 times a day, 5 days a week.  That is our next big hurdle, getting Colin to eat by mouth.  Once he is taking all of his feeds and fluids by mouth and gaining weight, he can then get his g-tube out, but that won't be for a while!

 Someone doesn't enjoy OT

Other than that, Colin is your typical two year old.  He is full of energy, strong-willed, and desperately wants to be independent.  He no longer wants me to carry him, but yells to walk until I put him down, he has his own taste in music, and knows how to navigate a tablet or smartphone better than several adults that I know.  He loves to dance and sing and hates to wear clothes.  He for sure has a temper and that leads to time-outs, which don't really phase him because he's a total stinker.

Colin selfie

Thank you all again for your thoughts and prayers.  I'm told often how much people enjoy these updates, so thanks for reading!  I'll update again after his surgery.

A few of my Favorite Things

I'm changing things up a bit.  Since I know so many new mamas and mamas-to-be, I've decided to share some of my most favorite products and businesses.  Some of these are for your typical kiddos and some of these are for my trach and tubie mamas.  So without further ado, here they are (in no particular order):

Aden + Anais Soft Muslin Swaddling Blankets: These are a MUST HAVE!! These are the perfect gift for any baby shower.  Colin absolutely loves these, so does my nephew Finn.  They are so soft and breathable and one of my all-time favorite gifts (thank you, Krista Tevar)

Wubbanubs: Seriously, the greatest invention ever. Colin could always find his binky at night and they were always easy to spot if they were dropped out the stroller.  No rolling binkies!!

A Projection Mobile: Colin loved his mobile that projected images on the ceiling and it also played music.  How perfect is this??

Scout from Leapfrog: Not only do you program Scout to say your child's name, favorite animal, and favorite color, but he also plays 15 minutes of bedtime music, usually just enough time for Colin to fall asleep.

Lcaps: These are for my trachie mamas. If your child is capped, you can get an array of colors instead of the boring white one they give you.  They're a little flimsy though and Colin shoots them off sometimes if he coughs hard enough.

Custom Trach Covers: These are amazing for when your trach baby wants to take of their humivent, Passy Muir, or cap.  The fabric is breathable and I also think it helps keep out the germs!

Pretty much anything from Adorabelly Design: They have tubie covers, trach pads, leg warmers, and so many accessories for your tubie or even typical kiddos.  They are definitely worth a look!

An Oil Diffuser: You know I wouldn't make a post like this without promoting my business! Honestly, any oil diffuser will work, but let me tell you, we started using the Scentsy oil diffuser in Colin's room before cold and flu season and he has not been sick all winter (by this time last year, he'd had 3 trach infections)!! Now, I can't tell you for sure if it's because of the diffuser, but I did research what oils were good for the respiratory system and I've been primarily diffusing lavender, eucalyptus, and peppermint oils. I'm a believer!

Custom made shirts from LaLa's Boutique: Have a special event for your kiddo or just have a fun idea for a shirt?  Get a custom made shirt from these lovely ladies.  Melissa and her mom are awesome, I'm sure you've seen some of their amazing shirts on Colin (Melissa and I worked together :))

As you can see, I don't have a lot to add in the feeding category, but if you are nursing, I would definitely recommend getting a top-of-the-line pump (especially if you plan on going back to work after baby).  I had one nurse even tell me that she purchased a Medela Symphony pump (these go for about $2,000) off of Ebay (obviously, you buy the accessories new) and re-sold it.  I rented one from the hospital and it was a LIFE SAVER, especially since I was only pumping for the first several months. Also, two words: Nursing Bras.

That's all for today, hope this was helpful!