I Love Lucy!

Met my new niece Lucy today! She's a redhead just like Sophie (except hers looks like it will stay that way, lucky!). She's the cutest little thing ever. I love her so much. I love to hand down Sophie's clothes to her. Because they are close in age I know Lucy will always be my very special niece ;-)

 Lucy...

 Sophie... ;-)

 Michael lovin on Sophe.....he just loves too make her smile ❤😄😃😀😊☺😉❤

Quote for the night/ Elders quorum bbq

Sometimes the things we can't change, end up changing us.

That's just a quote I saw on a t-shirt that a mom made for pontocerebellar hypoplasia. Something that hasn't changed in all of this is my husband's desire to serve the Lord :-) He always accepts invitations given by our Bishop to serve in different capacities. His most recent capacity is the elders Quorum president. Meaning that he is in charge of the functions, teaching/serving and the well-being of the largest group of adult men in our church ward. He doesn't do it alone though there are many callings within the Elder's Quorum. Some people might think that in our situation we should be taking a break from serving other people. But I watch Jason and notice that every time he's doing something for the elders quorum he's filled with the spirit of the Lord. He is a wonderful example and his serving, even now, always blesses our family :-)

Max and Gracie at the elders Quorum party tonight.....  ;-)

Suctioning and Driving

Children with PCH often have trouble swallowing and they are always at risk for aspirating and pneumonia. In fact I recently heard that most children with PCH die before they are 1yr old (which we knew).....and that the majority of those cases are pneumonia :-(

Once when I was driving Sophie to the chiropractor she threw up . She was in her bed seat , the car seat that lays down like a bed, and she was in the back. I was on the highway and there was nowhere to pull over. She was drowning in her own vomit and there was nothing I could do. It was terrifying. I was trying to find a place to pull over and there was nowhere. She started changing color. Finally a spot came into view. I pulled over and ripped the door open to save her. Well guess what? I don't care what the law is, my daughter does not travel in the back anymore! Nowadays she travels in the front seat right next to me (the airbag is off) and the suction machine is on the floor where I can reach the switch. The suction hose hangs over the rearview mirror.

So tonight Michael was at a birthday party and the rest of us went out. We met Jason at the bottom of the mountain so we were in separate cars. On the way home, I was driving home with just Sophia. On the EXACT same stretch of highway, in the dark this time, she threw up. But this time I was ready. I turned on the machine, grabbed the hose and suctioned the vomit out of her throat while I slowly and safely found a place to pull over.

PHEW!

Rainbow tonight (+Sophie's wall updated)

This is our backyard....be jealous....be very jealous!

Sophie's wall is growing thanks to the Young Women at our church...Auntie Ahna and cousin Emmalie! And Sophia is happy about it!   ...

Pic I found in Jason's phone. I had to go back to a Moby wrap to carry her bc she needs the support to hold up her head. She's getting really long and big, but she's still like an infant 😉

Mommy Daughter Activity Days Hike Tonight.

It was such a joy to spend some one on one girl time with Sarah! Thank you so much to the sisters who planned this. Love my sweet girl ;-) And I could not have done it without my husband holding down the fort with Sophia at home ;-) thanks babe ;-)

When we were taking this first picture I heard someone say we look like the same person. I just love it when people say that!

Worth every minute- Sophia's Feedings and Medication Schedule

This is Sophia's daily feeding and medication schedule. And remember, for her condition she's doing amazingly well. There are many moms on my global support group who have it MUCH worse than me. Just imagine adding a trache/vent and a handful more medications to all this, for example. Or one mom has twin 18 mo old babies, BOTH with pch (one of which has cerebral palsy in addition). They have 6 children like us...but they're not as spread out as ours. When I look at my day I think about Nicole....and it gives me the courage to work my tail off!

(special needs mom's will relate to this):

5 a.m. stop her feeding machine (her stomach needs to be empty to take medications)
5:30 a.m. erythromycin
6 a.m. feed 2/3 of an ounce
6:45 a.m. VENT her stomach, then feed 1 oz (Sophie can only digest about an ounce an hour)
7:30 a.m. clonazepam, baclofen, ranitidine
7:45 a.m. feed 1 oz
8:45 a.m. VENT, feed 1 oz
9:30 a.m. omeprozal
9:45 a.m. feed 1 oz
10:45 a.m. VENT, feed 1 oz
11:30 a.m. erythromycin
11:45 a.m. feed 1 oz
12:45 p.m. VENT, feed 1 oz
1:30 p.m. clonazepam, baclofen, ranitidine
1:45 p.m. feed 1 oz
2:45 p.m. VENT, feed 1 oz
3:30 p.m. omeprozal
3:45 p.m. feed 1 oz
4:45 p.m. VENT, feed 1 oz
5:30 p.m. erythromycin
5:45 p.m. feed 1 oz
6:45 p.m. VENT, feed 1 oz
7:30 p.m. clonazepam, baclofen, ranitidine
7:45 p.m. hook up to feeding machine
8:30 p.m. phenobarbitol (I have to hold her for an hour and a half while administering this medicine)
10 p.m. adjust feed rate for the night
11 p.m. pause feeding machine
11:30 erythromycin
11:45 start machine again and cross my fingers that Sophia and Max sleep for the next 5 hours and 15 mins (last night was bad, Max alone got up 6 times.....why can't Mormon's drink coffee again?--just kidding I know why! 😉 😛)

Of course this is just feedings and medications. There are  still diaper changes, cleaning her feeding tube site three times a day, vomit to clean up, a bath every other day. Thank goodness her seizures and dystonia are under control for now. Dishes and laundry (I finally broke down and hired a maid for the deep cleaning), a three-year-old to take care of, Michael and Sarah when they get home from school, church stuff and activities, wait....when do I get to shower? Oh...right....😜 Don't forget a relationship to desperately try to keep alive. Mason and Jonah are pretty low-maintenance thank goodness, in fact they help a lot. Jason does all the shopping and the cooking on top of working full time and traveling and I depend heavily on my family and neighbors to get my kids places. And what would I do without my night nurses 5 nights a week?

PHEW! This little angel is worth every minute!

My head is in the clouds

"Remember the day your loved one passed away is the furthest you will ever be away from them. Each sunset brings you closer to one another."

That's a sweet quote that was on a table at  the funeral for my step-sisters baby boy. I've thought of it often. This anticipatory grief is complicated and hard. Sometimes I feel awkward in public. My thoughts are often scattered....my head in the clouds. Thinking about quotes like that.....or making plans about how our family is going to get through this and somehow be better for our trials.

That's all I have for today. Sometimes life is complicated and hard. I have faith. I feel blessed. But sometimes it feels good to say....this is all very hard.

I got cabin fever yesterday so I took the kids for a little adventure. It was fun for me and Max and Sophie surprised me and slept most of the time ;-)

Happy Birthday, Sweet Mariahnna...

Dear Mariahnna,

Happy Birthday. You are a beautiful angel. I know your Dad thinks about you everyday. He keeps your pictures on his dresser and some of your things around the house.

You are a special part of our family. Amongst the pictures of our children, Sarah has always looked at yours and called you her "sister in heaven". And it's always seemed a little special that you girls have the same middle name.

I believe you watch over your father and other family members. And I'm sure there's a special place in your heart for Sophia. Although I hope not for a long time, I would like you to be there when it's time to call her home, as I'm sure you are planning to be :-)

Wishing you a Happy Birthday, dear girl, and know that our thoughts are with you today.

The boys at Comic-Con today.... ;-)

What? Sleepover on a school night?! Yes we did!

Jason and the boys are up in Salt Lake for Comic-Con :-) so I invited my sister and niece to come spend time with us :-) school night? Who cares! :-) :-) :-)

Sweetest thing ever is Emmalee loves to sing to Sophie :-) and Sophie quite enjoys it too :-)

Finishing Jason's birthday blog/ Anticipatory Grief

Yesterday for Jason's birthday we went to the cemetery. We usually go every year on Mariahnna's birthday to release balloons. Her birthday is on Friday but Jason will be out of town. Jason told me once that when she was born he thought they would always celebrate their birthday's together. Mariahnna never made it to her first birthday. But maybe, in a very small way, releasing balloons on Jason's birthday was a way to share, just for this year :-) I feel so sad for my husband that he's going to have to do this again. It's extremely sad and depressing. There are beautiful moments too, like yesterday :-)

An article was posted to my global support group recently about anticipatory grief. I can tell you from experience that it's very real.

https://thecaregiverspace.org/anticipatory-grief-powerful/

Pretty Girl says happy 44th birthday daddy ;-)

Taiwan Taipei

Today.....Jonah opened his mission call! He is going to the Taiwan Taipei mission and he'll be learning Mandarin! We are so incredibly proud of both Mason and Jonah. In the Mormon culture it's anticipated that most young men will serve a 2 year mission...but it's still a choice for each young man to make. To leave their families for two years and teach people about Christ and Eternal Families and the Book of Mormon (another testament of Jesus Christ). It's a selfless sacrifice to better the lives of strangers, by sharing the message of the restored gospel, and teaching them how to find out for themselves if it's true. (I'll tell you the answer, read the Book of Mormon, and pray to find out if it's true ;-).

And for Jonah to still want to serve, knowing his baby sister may not be here when he returns, I can't think of a more Christlike sacrifice. He reports to the Missionary Training Center on Dec 20th :-) Proud of you Jonah!

To see a grainy video (but the audio is good) copy this link...

https://www.youtube.com/watch?v=8yrZu3lCKnU

Or

type "Jonah Michael Hayes opening his mission call" into youtube

Sophia today...