We Are Walking in Honor of Briella. Please Help Us Meet Our Goal.

Monday, February 2, 2015

All things Brie Update

I am so sorry it's been so long since I have posted! We have (knocking really hard on wood) been so lucky to have had a really healthy winter so far. Briella had strep throat over New Years, but that's about it!! I will make a 2nd post for all Briella's 2nd birthday pictures. Thanksgiving was celebrated at home since some of our family had been ill too close to the day. We did get to celebrate Christmas with our normal traditions. It was Briella's 1st Christmas with all the family. She got to go to her Great Grandma's house on Christmas Eve & then visited both Grandparent's house on Christmas Day. She tore into the presents and totally had the hang of opening presents since she had great practice on her birthday in October.
On January 13th, Briella graduated from her Special Care Clinic at the Children's Hospital. The doctor scheduled another visit to see the OT the next day about Briella coughing while drinking water and juice. She doesn't cough with Milk or PediaSure. Well we found out the Briella is aspirating when drinking water/juice as it's thinner then milk. But her cough saves most of it as she coughs it back up. Apparently her tongue doesn't thrust to move the food or liquid to the back of the throat, it just lays flat. Try to swallow without using your tongue-it's hard. But this kiddo has taught herself how to eat without using it! We've also realized that this is probably causing an issue with her speech as well, not using her tongue. So we were given a lot of exercises and therapies to strengthen that tongue. We were given until the Spring to get her to stop coughing/aspirating before they do a more intensive therapy 3x a week (which we hear includes shocking her throat muscles.) 
We were also sent to an ENT last week. At that visit the doctor was concerned that Briella has something called a Laryngeal Cleft (in her throat.) So today we will have a swallow study done at the hospital. Then, Briella might be having surgery to put a plumper in her Laryngeal Cleft. That is a tenporary fix. If it works and she stops aspirating she will have the permanent surgery to fix it. 
At the ENT visit, the dr and NP heard a murmur in Briella's heart. Briella is seen frequently and has never had any other issues with her heart since she was cleared of her PDA in the NICU. So of course this was very alarming to us. This morning we had her Cardiology appointment. Briella had an EKG, which showed a normal heart beat! She then had an echocardiogram, which showed a completely normal heart with NO congenital heart defects!!!! She does have two new heart murmurs, both innocent! God is good!!!!! I had been in such high anxiety fearing the worst. But my father told me over and over that god saved Briella and he wasn't going to let us down now. 
There had also been some concern about Briella's changing muscles. With her Cerebral Palsy she has tight muscles on the right side. Well within a matter of days her left leg became pretty tight, more so than her right side. So we had her semi annual Rehab Clinic visit (CP clinic) moved up from the end of March to this last Friday. We brought in her MRI that she had done in the NICU before she came home. Since it was a different hospital they didn't have the record. So our doctor viewed it and did confirm what we knew about the left side brain bleed, which had resolved in that MRI. He also found an area of brain damage. The GREAT news is the area affected does NOT control thoughts or emotions or cognitive! We already had a pretty good idea that Briella wasn't affected cognitively as the last couple months she has shown as that she is smart! She has become a chatterbox and has such a since of humor! She plays tricks on us and laughs. Anyways, the area of (small) damage controlls her movements and reflexes. So the dr said she will have trouble walking. But she walks!! Praise God! She will wear her braces, but down the road probably only need one, for her right leg. We also have discovered that her right arm is also more involved than we knew. But it has great range of motion! The doctor thinks the left side has become more tight do to Briella's growth spurt. She is now 26 pounds!!!!! And 33 inches tall. He said that growth spurts are going to be hard on her muscles due to the CP. But overall she is doing so amazing. She doesn't even need a follow up MRI at this point. praise God. 
We just need to get passed the aspirating and she will be back to having a clean bill of health!! 
Thank you for praying for our little girl. Prayer works!!



Celebrating Briella's Due Date Birthday

Enjoying Great January weather

Briella's last Special Care Clinic appointment

Christmas Eve 2014

Aubrey & Briella

Rudolph Briella

Princess Briella

Briella's "Cheese" Face

Briella on Halloween as Minnie Mouse


The Royals World Series

Pumpkin Patch with friends

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