Surgery Day Tomorrow!

This will be a short post to remind everyone that tomorrow, Friday, January 16th is Brinley's surgery to remove 20% of her toes (50% of her big toes). I just wanted people to be praying particularly during the hours she is actually in surgery: 7:30AM is the start time and she should be out by around 11:30AM. The endoscopy will be first, followed by the toes.
We were actually told that this surgery is sometimes done out-patient, meaning she would be going home the same day but we're hoping they'll keep her at least one night for observation and to make sure all is well. Our other 3 girls will be well taken care of as Sarah and I spend all our time with Brin at the hospital. Many thanks to family and friends!

So don't forget the "Toe-Chop Prayer Watch" tomorrow 7:30-11:30AM! I probably shouldn't call it that and my wife will probably say something like "I can't believe you put that on the blog" but what can I say? I'm impetuous.

January 16- mark it and pray!

Merry Christmas, Happy New Year!
It has been a while. Honestly, I have been in a bit of a funk. It's pretty understandable and I am starting to feel better now. I don't really want to get into that, so moving on to better and cuter things!

Brinley. She's 8 months old now. Had her first Christmas and New Year. Pictures will come shortly. Medically speaking we have a few tidbits. The biggest thing is that she has her third surgery coming up on Friday, January 16. It will be sometime in the morning. Please pray for continued health for Brin so surgery is not derailed. Also, for the Doctors and Nurses who are working with her to be on top of their game and blessed just by being on Brin's case. She is expected to be recovering in the PICU for 2-3 days. All visits from NICU friends are welcome! The big girls will be well cared for and loved on by both sets of grandparents. Please pray for peace that passes understanding as we hand over our little baby for her longest surgery yet. Pray for a very quick recovery. This is an intense orthopedic procedure (they are removing one toe from each foot, a skin graft will most likely be involved too) and we need full function and circulation! Also, our ENT will be doing an endoscopy at the same time since that also requires general anesthesia. We will finally find out what is wrong in her mouth and airway...a little nerve-wracking!

Brinley has been off of her robinol (the medicine that was helping manage her secretions) for about two months now. The first weekend she needed constant suctioning but was not aspirating, so we let her try to figure it out. At this point the amount of suctioning that she needs is about the same as it was before we stopped the meds. Her eye movements have slowed down considerably but
are not completely gone- please pray that they stop completely! Because her eye function is so much better she's starting to catch up with physical and mental milestones. The physical and mental are so closely linked that it is still to hard to tell if she has any developmental delays. A special education therapist has just started working with Brinley and she's great! We are very hopeful that Brinley will continue to develop as she has a LOT of feist and personality! Our latest nickname for her is Squidge. When she's particularly rambunctious we'll say she's very "Squidgey." Lil girl is so strong and squidgy tonight that I just saw Peter giving her a ride in the air with just one hand under her bum! Her strength is fairly dependent on how healthy and rested she is (a low tone thing).

Merry Christmas- she's sitting! 

Staring at hands is still one of her favorite games

Jamming out to "Jingle Bells, Cailyn smells, Lessa laid an egg, Brinley lost her chimney top (Alessa's term for her HME) and Raina took ballet!"

Sleepy girl

She found her toes! 

I promise we will do an update after Brin is awake again and we have talked to Dr M about the endoscopy findings. We will do more post-op updates as well. We are very excited that our isolation is coming to a close. That has been really hard. On all of us. We are planning to give Brinley a week or two of post op recovery and then we will be back at church and a little more social. We can not wait! 

One last thing. A little video clip of Brinley with her passy muire valve on. Worth a minute or two, I promise!

Thank you all for your prayers! We serve a mighty God and I can tell you that we would not be anywhere near as functional and sane as we are without Him!

This Little Piggy

We have a surgery date for the removal of lil miss Brinley's extra toes (and endoscopy).  Feel free to put it on your calendars so you remember to pray- Friday, January 16, 2015. Woo-hoo? Ever since Brin's birth we have been joking around that there needs to be a new "This Little Piggy" song to account for the 6th toe. Anyone feeling creative?

This little piggy went to the Dr
This little piggy stayed home
This little piggy had therapy
This little piggy had none
This little piggy played the piano
This little piggy went wee-wee-wee all the way to the bathtub.

OK, so someone out there can do better than that...submissions can be made in the comments section below ;)

Brinley is currently obsessed with her hands.

Cailyn turned 6 earlier this month and requested a Frozen party. 

Of course she was too busy to let me take a picture of her. 

Nurse M still loves Brin :) 

Melt my heart 

The girls celebrating my grandfather's 90th birthday

Alessa, 2 going on 20 

One of Brinley's favorite places on the planet 

CORE Physical Therapy (Seriously, if anything hurts, go there.) 

Hands and knees during PT the other day! 

Further proof that we do have the best nurses. 

*permission was given to post these pictures ;) 

Happy early Thanksgiving everyone! Thank you so much for praying for us these past 7?! months. We are grateful for each of you. Stay safe and warm!

A Long Awaited Video Update

Herein I reveal my utter need for a shave and a haircut whilst sharing how our little Brinley Noel is doing. I do this using the most advanced of techniques known as the selfie video which wert then uploadethed to the YouTubes for worldwide distribution. Please enjoy and continue to keep us in your prayers!

So a paci, a passy and a trach walk into a bar...

Just thought I'd share that Brinley's trach came out today for the first time :) Yes, we can smile about it because she was fine and we're much more comfortable now with all her crazy stuff. Lessa and Raina were moving her around and picking her up so that's probably how it popped out. Here's how it was discovered:
Sarah: Hon, Brin is making noise even without her passy valve (spoilers) on!
Me: (thought bubble - that doesn't sound right. I should go look) Umm, hon, her trach is out.
Sarah: (laughing)
Me: Hey, could you help me with this.

Brin also got to facetime her cousin that is just 3 weeks older than her. They chatted for a while. It was cute.

Enjoy these 2 videos. Both are milestones.

Thank you nurse J for my first good night of sleep in 2 weeks!

5 Months of Brinley (now that she's almost 6!)

It's been so long since I last wrote to you all that I don't remember what I need to include to bring you all up to speed so if I repeat anything you already know please forgive me. 

I'll speak mainly in generalities for this post since the days are starting to blend together with some great days sprinkled in with a lot of very draining ones. Most of the time we're just trying to survive the day but we're beginning to get to the point where we can think about conquering them. We are so thankful for God's grace through this insane adventure, without which we would surely by now have regressed to living like feral beasts (just feeling melodramatic). And now, bullet points!

• Brinley is killing it with her PT, getting stronger and more mobile
• Surgery for her feet (ENT will do the endoscopy at the same time to plan the mouth surgery) is down to two possible dates and we will have details soon
• A new favorite word of mine is perspicacity
• We're starting to feel a bit isolated so we'll have to start getting creative
• Speech continues to be challenging due to Brin's tongue. She is finally starting to enjoy the sessions at least. We have smashed our previous record of two good sessions in a row!
• She has now switched from Ranitidine to Omeperozole to manage her reflux
• Brinley is getting huge. Around 18 pounds now.
• We have three nurses now and are getting all of the day time (plus two evenings a week) hours that we want. Please pray for a night nurse to step up! We seriously need sleep.

Picking out her own toys- thanks nurse C!

Sneaking applesauce (don't worry, suction was nearby) 

First time grabbing a toy by herself! 

Brin has the best team of therapists around

Naptime with nurse J 

5 Months old 

Nurse "M" can not get enough of us. 

She used peanut butter to get a whole ton of tiny burrs out of Raina's hair- on her day off! 

My mom has a theory that nurse M comes to get stories to pass along. Not a bad theory. 

First ever ballet class for Alessa 

Our Family 

(Thank you Picture My Heart Photography for another beautiful session!)

Big sisters making sure Brin was dressed to impress before hanging out with her friends 

Little loves 

All the "D" cousins apple picking 

You light up our lives

*From Sarah- Peter will post a double video update soon. There is one thing we left out of this post that Brin wants to show you herself. This update has been almost two weeks in the making already..... and I know you all have been waiting to hear and see more! Thank you again for hanging with us on this journey. Please continue to pray. The big sisters have hit a rough patch. We have been "screen" free for a week to see if that helps settle things down. We know they have been through a lot this past year as well and are trying to have a mixture of firmness and grace.

See You in Spring!

Thank you, thank you , thank you for your prayers. We have felt a tremendous difference! Please be encouraged that God is hearing and answering your prayers. I have had a few good conversations with Peter and our pastor's wife and am doing much better emotionally as well. Like when the disciples were in trouble on the lake and Jesus called Peter out to walk on the water (Matthew 14:24-33), it is so easy to look at the waves and start sinking, but we walk by faith and not by sight (2 Cor 5:7) and God IS here right with us.

Brinley in her exersaucer. She can tell she's more independent and LOVES it!

Brin is also enjoying her stroller, sans carseat

First apple picking- mommy may have given her a teeny taste ;)

We haven't had any more doctor appointments since the last post, so I don't really have anything medical to share. Brin has had speech and physical therapy sessions though and is continuing to progress in those areas. The myofascial release PT is transforming the shape of Brinley's head. It really is incredible to watch! I am so grateful that I knew about this kind of therapy and that she is responding so well to it! Our early intervention PT is fantastic too. She is very pleased with Brin's development both physically and mentally. Brinley can sit unassisted for 5 to 10 seconds and she really enjoys it. Also, she is starting to pull herself back to midline (sitting straight) when you move her out (you support her but very minimally so she feels like she may fall). This is a great sign because it is very hard to teach what midline is for a child to know they should correct his/herself when falling. Speech is still slow, but at least she's not screaming through the whole thing now. I commend Miss "B" for her persistence!

Cailyn started school a few weeks ago and loves it! She takes training her sisters for kindergarten very seriously now.

Biggest and littlest- swoon

In other family news, our 2 year old has coxackie virus. She is polka-dotted and wearing polka-dot clothes on a polka-dot bed. Poor thing. Her fever broke yesterday and she will be considered not contagious later today. Keeping a 2 year old confined to her bed/couch is NOT easy! We are really doing everything we can to keep the other kids healthy. Clorox wips, essential oils sprayed around, quarantine, loads of IQ dropping TV, the list goes on ;)

My piles of loves

I ran across this picture the other day and could not believe how tiny she looks! This wasn't even as small as she was...anyhow, I know it's not #tbt, but here it is anyway.

Look how far she's come!

OK, so here's the kicker. I spoke to our pediatrician the other day about fall and winter and germs. (We had already planned on last Sunday being Brinley's last time going to church until spring.) She said that with the number of kids in our house and their ages that we basically have a day care going on and that none of the kids should go to crowded places this winter. I was surprised! Our pediatrician is wonderful and laid back (one of the things we love about her), so we are taking her recommendation very seriously. She said that while Brinley would be exposed to germs at some point she really doesn't want her getting sick this winter. So, please don't be offended if you don't see us at church or large parties. We are praying for sanity and creative ideas to help keep the girls busy during this season. Here's hoping they are old enough now to enjoy playing in the snow for a few hours!

Prayer points:
-We're pretty much able to cook and clean, but house projects/maintenance are still beyond us. We would love help refinishing the front porch and putting in a railing on the side entrance if anyone is up to it.
-Continued head growth and brain development for our Brin.
-Wisdom for doctors and therapists as they work with Brinley.
-Grace and discernment for Peter and I as we interact with insurance agencies (and more), nurses, therapists, doctors, friends, family, our children and each other. We want to see people as God does and be sensitive to any opportunities to bless and minister to those around us.