Incline your ear, and come to me; HEAR, that your soul may live ISAIAH 55:3

Brielle is schedule for tympanostomy surgery Dec. 5^th, 2014. She has complete blockage in both ears; her ears are filled with fluid. Due to the disease her ears are narrowing and there is no ventilation. Fluid is building up behind her eardrums and need to be drained. 

This will be her first surgery; it's considered minor surgery. Talking to other parents with ML children; it’s not a big deal. The biggest concern is sedation, due to her heart and respiratory issues we need to make sure a high risk pediatric anesthesiologist takes care of her; which her cardiologist took care of. She has been sedated before for MRI’s, besides the drowsiness after; I think she has done fairly well.

Surgery will be at a different hospital which has me a little concerned. Phoenix Children’s Hospital is the only hospital that I trust because that’s where all her specialists are. Unfortunately, her ENT does not have rights at PCH and the surgery will need to be done at Banner Desert. She was born at Banner Desert and her sisters Jaileen and Isabella were also. They have always been great; just worried in case there are complications… Just being a mommy!

Putting all my worries aside... I am very excited for the aftermath! Since she has complete blockage, she suffers from deafness. (Which was very sad for me to hear, because I was under the impression she could hear me quite well all along.) She tries so hard to talk and communicate with us, I feel like she has so much to say! I think it will open up a whole new world for her; she will be able to hear so many new sounds and voices clearly. I just can’t wait to hear her little voice once she can hear!

Happy 2^nd Birthday Sweet Thing!!!

I am so so so happy to be celebrating Brielle’s 2^nd year of life! This little girl brings so much light to this world… but my world particularly!

Every moment I have with this little one is precious, she is the funniest little monster, she loves to be the center of attention and makes sure she gets it! She is one demanding tiny toddler… this little diva is SASSY, FEISTY & SPUNKY all in one… she always gets what she wants! I have no option but to obey every demand …ya I’m a sucker!

LOOK at this CUTIE who can say “NO”?!?

 

She can now repeats almost everything! She says “mama” now, which was a huge accomplishment in my eyes; I was tired of being called “papa” lol. One of her recent new words is “caca” she wants to let the whole world know she is taking care of business. In these last few months Bri has achieved many many things, she is now crawling, she can pull herself up holding on to something, takes a few steps side to side and climbs over things. She has definitely entered her terrible two’s crawls all over the house and gets into everything… just like I always hoped she would! This week she learned to say “TWO”.

Just a little bit about what's been going on with Brielle. Since her official diagnosis back in May, our lives have definitely changed. I have put in 100s of hours in research, just trying to understand the disease and what I can do to give Brielle the best quality of life. We have seen many many specialists; June to present has been very busy. If it’s not an appointment to her pediatrician, it’s an appointment to a specialist, a therapy etc. etc.  With all that is going on I have not taken the time to blog, thought today was a good day to start again!