Areli Is Full of LOVE.... But Not A Lot Of Fat..

Mito can affect multiple organs, especially ones high energy functioning like the heart. So today we went to see the cardiologists at Children's to look at heart involvement. Areli had an echocardiogram and a EKG done, which she did great at. What did they find you ask? Well they found a WHOLE LOT OF LOVE in that little heart of hers! But on a serious note pertaining to her mito her heart is looking/pumping great. Unrelated, they did find a PDA or Patent Ductus Arteriosus. The ductus arteriosus is a leftover fetal artery connecting the aorta and pulmonary artery. If this artery stays open after birth, it's called a patent ductus arteriosus. So if you're not a medical student, this means that there is a "leak" in her heart. In utero, the ductus arteriosus brings blood away from the lungs (since the baby doesn't need to breath), every baby is born with it, but since the opening is no longer needed it closes a few days after birth. It is common in premature babies for the ductus arteriosus to to remain open, but rare in full term babies. In a child with PDA extra blood gets pumped from the aorta into the pulmonary arteries, which can lead to the heart and lungs working harder and lungs can becoming congested. Areli has a relatively small opening, so we are hoping it will close on its own, otherwise a devise will be put in to close it off.

Even though her heart is full of love, her body is not full of fat. She is up about one ounce since her 9 month check up. One ounce in 3.5 months and this girl can EAT! She went from the 80th percentile to the 10th percentile, completely dropped off the growth curve. With the amount of calories she takes in and lack of weight gain we are concerned something is wrong. So we will take another trip to see Dr. M her GI specialist to try to figure out whats going on. Hopefully we can figure it out before she gets too skinny. I'm worried about this. Until next time.....

Love, 

Mama Linnea

Tighten Up Your Buns, Areli is ONE!

*This post is also being featured on the Miracles for Mito blog. Every week there is a different blogger, writing about what it is like day to day to care for a child with mito, or who live with the disease themselves. Check it out, new posts every Sunday!

Baby girl I can't believe you are ONE! I know everyone says it but this year has flown by! Your first year of life didn't go as planned.. You had to endure more hospital stays, procedures, anesthesia and blood draws than most adults. I wished at every moment I could take your place and feel the pain for you. You are one tough cookie, my love. Even though your first 365 days of life weren't exactly how we envisioned, you have lived and fought every second of those three hundred and sixty-five days. You have 10 perfect little fingers and 10 perfect little toes. You have a beautiful smile and infectious laugh. You are the best little sister and perfect little daughter. You have conquered your hurdles like an Olympic track star. You have accomplished things we weren't sure you would be able to. You are showing us you are stronger than we know. You have taught us patience, acceptance, perseverance, advocacy, and strength. You have taught us it is okay to cry. You have given me a drive and purpose- to be the best mother/advocate for you I can, and to raise awareness for Mitochondrial Disease. You have blessed us for a whole year and will bless us for the rest of our lives. You have thousands of supporters all around the world and you, my child, is spreading awareness of your disease before you can even talk. I couldn't be more proud of you and I couldn't be more blessed that you are ONE! Here are some photos of our celebration:

Areli's watermelon cake!*

 

Big sister Leilani eating a cupcake

Areli's cousins and Aunt.

*Watermelon cake recipe: it is really very simple, cut the watermelon to shape, frost with Vanilla Greek Yogurt (or any other flavor) and decorate with fruit! We crumbled chocolate and sprinkled it on the sides, but a good substitute would be crushed nuts- ENJOY!

And a piece of Skin...

Areli had her skin biopsy on May 28th. We did a skin biopsy to see if the Complex 3 is deficient in the  mitochondria in her skin, the same way it is in her liver. This doesn't mean there is something wrong with her skin, it is just another piece to her complicated puzzle.

Smiling before the procedure

She did great! Our girl took it like a champ! They took a pretty good size chunk of skin, she barely cried and then fell asleep before they even put the bandage on.

Cuddling with Daddy after the biopsy.

Playing at Oma's house after the biopsy.

Exhausted from the day.

Baby girl slept soundly that night and so far her biopsy sight is healing perfect! Just no swimming for 2 weeks :(

Love, Mama Linnea

Thank You

HELLO WORLD!
I have a couple updates to write, but as I sat down to start a post I realized just how loved our little Areli Rose is! I would have never imagined people from all around the world would be so invested in her story and journey. She has readers from 14 different countries!! So to all of you out there near and far (very far) I wanted to say thank you! Thank you for following, thank you for your prayers and well wishes. I just hope that Areli can inspire hope, rising against the odds and appreciation for  every moment because tomorrow isn't promised and today is beautiful! Most importantly though, I challenge each of you out there to educate 5 people about mitochondrial disease, and challenge them to tell 5 more people and so on and so forth. This disease kills more children than all childhood cancers, yet no one knows about it. Every 15 minutes a child is born who will be diagnosed with mitochondrial disease before the age of 10. We NEED to spread awarness. We NEED to find a cure. We NEED Mitochondrial Disease to become a household word. Thank you for your continued support my worldly friends!
Love, Mama Linnea