Wednesday, August 20, 2014

"You are stronger than you seem"

Hello there!!!

Sorry for the extended break from blogging! Just wanted to get all of our ducks in a row before filling all of you in on Ollie. 

In April, Ollie had a tonsillectomy and adenoidectomy for severe obstructive sleep apnea. We were told that this was extremely urgent because his sleep study showed some very concerning information. We were under the impression that there was no other option. The doctor told us that doing this procedure would eliminate his obstruction. Ollie endured yet another painful surgery and rough recovery. 


We had a repeat sleep study in June. I patiently waited 3 long weeks to be told that Ollie's sleep study was significantly worse than prior to surgery! I sat in shock for a what seemed like several hours...baffled by the called I just received. During the conversation, I demanded we have a pulmonologist added to our team and honestly this should have been added when Ollie was born. 


This week we meant with pulmonologist and I must say that I adore her! I preached my concerns, aggravations, and my advocacy of knowing Ollie's needs. In return, she answered all of my questions and said she would love to join us on the roller coaster ride. She is all about the less invasive approach....I wish there were more doctors like her! We chatted about the options we have left concerning Ollie's airway and lungs and came up with a game plan. The doctor sent us home with nebulizer treatments because she noticed that Ollie's lungs were inflamed due to aspirating on his saliva. At least the nebulizer is a cute seal named Sami that has a turtle mask. She is going to attempt to fit Ollie for either a cpap or bipap. There are many factors playing into this plan that could make it impossible, but we all want to at least give it a try. Many prayers are going up that this is the answer because if it isn't we are left with only one option....a trach. While there are benefits to the trach I was hoping we could avoid it.


Ollie is working hard everyday to become stronger! He is weighing in at 13 pounds 11 ounces at 18 months old. He is showing us more of who he is...quite stubborn I might add. Owen is truly an amazing older brother to Ollie. Owen is by far the best therapy for Ollie...their bond is undeniable!


Monday, April 7, 2014

Zzzzzzz!!!

My goodness I haven't posted in forever! It has been a crazy past couple of months. Anyways...I will try to catch you all up on the little man.

Ollie has had a quiet few months mainly because of the flu season. I'm sure our neighbors think we are vampires since we never leave the house! We are getting out of the house on nice, warm days and going for a much needed walk. However, Ollie absolutely hates being outside. It is sensory overload for him and honestly, I can't blame him...I would be totally freaked out! 

Ollie is a whopping 10 and a half pounds. We have started adding gelatin to his blended diet and finally started to see progress in his weight. Do not be fooled by this tiny, little man because he is actually the real life version of Mighty Mouse! I'm still amazed by the blended diet...I will forever be a HUGE advocate! I have taught seven parents of tubies the blended diet and all of them stated they saw tremendous improvements! Winning!!!

Ollie has been working his booty off in his therapies. He can officially roll side to side and almost to his belly, but he absolutely despises being on his belly. His head control is strengthening. The bumbo seat is being used daily though Ollie has his own version of sitting in it...silly, crazy boy!  

Few weeks ago, Ollie had a sleep study. One word...torture! I thought this non-invasive test would be a cake walk compared to everything else the little guy had endured. Boy was I wrong! I'm pretty sure he is never going to let me live it down that I put him through it. Anyways, the results were not good. Ollie has severe obstructive apnea with a critical airway. Doctors saw him immediately and we all agreed that the best solution would be a tonsillectomy and adenoidectomy with laser supraglottoplasty. While he is under anesthesia, he will have tubes placed in his ears because of chronic fluid issues and he will have his whole airway assessed.  The surgery is this coming Monday (April 14). We are asking everyone to please keep him in your prayers. On Monday we would love for you to support Ollie by wearing lime green/blue and to rock your Ollie band!


Sunday, January 12, 2014

A New Year!

Well now that the holidays are done and gone it is time to start a new year. A year filled with much happiness, love, and little less stress I hope! I look back on the past 11 months and nothing seems real. For one...how in the heck is Ollie 11 months old?!? I have no idea where this year has gone and though Mr. Ollie may not look like he is almost a year old, I can kind of say that I have enjoyed having the baby stage extended. For now, I will adore my extra snuggles for soon enough I will be chasing around his wiggly buns! 

Let's see what is new in the life of Ollie:
Ollie received his BAHA! This is his bone conductive hearing device. I must say that this little handy device is pretty neat. I put the BAHA on and plugged my ears with my fingers then I traveled to another area of our house and I could clearly hear Jason's conversation while he was on his phone! My favorite part about Ollie having the device is seeing him react to things he has never heard because of his hearing loss. He cracked the biggest smile when he heard the tags jingle on Baby's (our fur-child/Ollie's guardian) for the first time. 

Since the lovely flu season has decided to drop in on us, we have kept Ollie's doctors visits to a minimum. The less exposure lessens our risk. We have many visits to catch up on, but I have sincerely enjoyed a break from constant weekly appoinments. The little mister is busy enough with his physical therapy and occupational therapy. OT and PT have been working with Ollie on stretching, holding his head up, leg extensions, sitting, and much more. Every therapy is an achievement in my book! 

Now for the ugly news...
Ollie's spine is in pretty bad shape. He has "s" shaped scoliosis. We are being referred into Pediactric Orthopedics to begin our adventures down this road. Right now, Ollie is in a tremendous amount of pain when he is placed in a supported sitting position. I want so badly for him to sit and play with his older brother, but that is not what is in his best interest at the moment. We know we will be walking a thin line when it comes to treatment because of Ollie's heart defects. 

Owen celebrated his 3rd birthday on December 8th! Excuse me while I down a bottle of wine because I am a mother of a 3 year old...yikes or in my Pap's words "God free daniels!" We had an absolutely phenomenal cake provided by Icing Smiles. They're are nonprofit that provides cakes to medically needy children and their siblings. It was such a burden lifted off my shoulders not having to worry about making sure Owen had a cake especially since I didn't know if we would end up in the hospital. If you are ever looking for a place to donate please consider Icing Smiles! A huge thank you to Melissa from Sweet Lillies for donating this delicious, awesome cake to Owen! She nailed Owen's request for a Disney Planes and Cars cake!