We Moved!

Tunz to tell you. But we don't have any internet yet and things are crazy. Here's a pic from our new balcony though!

Happy Mother's Day

Happy Mother's Day to all of the wonderful mothers I know! Remember that even on the bad days you are doing a really good job :-) Especially happy Mother's Day to my mom and my mother-in-law :-) Your gift will come in the mail wednesday and when you open it I want you to think of this video :-) Sophia's favorite kind of weather is the wind :-)

https://m.youtube.com/watch?v=OLCAiLgzlnA

Or type "Sophia Jane-Marie Loves the Wind" into youtube

Love you!

A lot went on this week and for some reason my photos aren't loading so maybe I'll have to post a second one this week to catch up :-)

Also wanted to update you on Sophia's EKG :-) it came back completely normal, nothing wrong with her heart :-) and ever since her neurologist had us increase one of her medications for suspected breakthrough seizures, her bradycardia has almost disappeared :-)

Letting go of Anticipatory Grief

At the beginning of Sophia's life I woke up every morning worried about her "life sentence". Anticipatory grief is very real guys :-( But after some time on my support group, and seeing that a few kids live a long time, I realized I can't live like that anymore. What if she lives to be 20? I can't live every day, for 20 years, worried sick about her dying. I would probably become clinically depressed. And I don't want to be depressed her whole life.
So I've been trying to adopt a new attitude. You see I realized, I'm going to outlive a whole lot of people that I care about. I'll outlive my parents, probably my husband, and maybe some siblings or friends. But I don't wake up every morning worried about when they are going to die. And sure, it's harder to lose a child. But I just don't think that the day my daughter passes, is going to be made any easier, because I worried about it her whole life.
Death is a part of Heavenly Fathers plan. And because of that, I know I can trust Him that there's a reason for it.
So anyways I'm working on that.

Update: Sophia saw neurology and pulmonology up at primary children's this week. Traveling there was hard, which is why I procrastinated these appointments. She threw up and had seizures in the car it sucked :-(
But I just felt like it needed to happen this month. Bad timing because we're moving and super stressed. But I made the appointments anyways and I'm glad I did.
Neorology wants to up her meds to keep seizures at bay, and the pulmonologist said she thinks she has central AND obstructive sleep apnea and may be retaining too much carbon dioxide. It'll take 6 more weeks and another trip up for a sleep study, but she probably needs bi-pap at home when she's sleeping.

Pics from the week...

Meeting her cousins Tabeh and Zaki for the first time :-)

Met up with some PCH friends from our support group :-) From left:
Bailey, Grayson's mom, holding Sophia; me holding Grayson who's almost 4 :-) ; Jett's mom Tennille holding Macy. Jett was 5 years old when he passed away, 3 days after Sophia was born. She was my first contact in this world :-) ; and finally Nicole, mother of PCH twins Macy and Lucy, holding Lucy ;-)

 Sophie with her PCH friends ;-)

Sophie with her awesome neurologist Dr. O :-)

 Grandpa Chad getting in some last minute snuggles Friday night ;-)

Cutie pie, fishy face ;-)