The Rich and Weary Road

Where to start...this past month has been a bit emotional around here. I think it is a culmination of two years of hard stuff. We are just tired. And broke ;) As some of you may know I miscarried in the spring of 2013. I will never forget it. It happened an hour before we celebrated Alessa's 1st birthday. Anyhow, that hit me really hard and I am not quite sure I was really prepared to be pregnant again when Brinley came along. It was a pukey and painful pregnancy, then boom! She was here and our world was turned upside-down! We have learned that some things, or people, are worth learning to walk on the ceiling for (if we're going with the upside down analogy). Brinley is a blessing to our family and everyone else who takes a moment to look into her eyes and see who she is. God has given her, and us, a ministry that is much different and bigger than we ever would have thought or imagined. Each time I write a blog post I try to convey what it is like around here and fall short. The ups, downs, ins and outs of the past two years are simply beyond words. The bottom line though is this, God has been, is and will continue to be faithful to our family. He has provided, through many of you, emotional, physical and monetary support- and how we have needed each one!

My challenge to you is this: come visit. We can have a bonfire, talk, meet at a playground, drink coffee, eat ice cream, order dinner, laugh, pray and maybe cry with you. We miss you. We want to know what is going on in your lives. I realize most people aren't up to hosting a large family. Our house may not be "showing ready" on most days, but we're beyond caring about all of that. Thank you to everyone who has taken the time to come spend a few hours with us. If you're one of that group you may have heard the kids exclaim "Come in! Who is it?" In most houses those phrases are turned around, but honestly, that is our every day with nurses, therapists, supply company reps, 6 month agency check ins (x3) and more. Our nurses and therapists have become friends. It has been nothing short of breathtaking to watch how God has brought each one into our lives for one reason or another. It is exciting to see how they all work together to help our precious not-so-lil- Brin gain new skills.

Brinley is doing very well. She is FULL of life and personality. She is a master at sitting. She is just starting to be able to transition to/from sitting/hands and knees. She can stand with minimal support when she wants to, which isn't often lately. She's getting better at playing with toys (levers, in/out, tapping...). She LOVES people. Loves to smile. She has started shaking "no" and even smacking us in the face when she's really angry. She occasionally nods or says "yea" as well. She has continued to vocalize much more often. If you sing a song she is familiar with and pause, she will insert an "ah." **

The new patio- once the swingset was up we started giving away the "plastic jungle" that had been taking over the yard. We realized this could be a great space so voila! The classy seating is hopefully temporary while we save up for some adirondack chairs. There are also solar lights in that tree. We have already enjoyed some great s'mores and family as well as friend time here.

Colorado is stunning! Congratulations Rach!

Rocking these hats despite Josiah's strong discouragement

Always fun meeting new friends in unexpected places!

 Peter sent me this picture while I was in CO and I had to restrain myself 

from jumping on the next flight home!

In case you were ever wondering what it would look like if your 

kids asked for mac n cheese after dying the whole gallon of milk green

 Fun with Nurse C and family on a very hot Sunday morning

Speech master B and Brin. The jury is out on which of these two is 

more stubborn, they are perfect for each other!

Mom, look what Nurse H did to my hair!

 Uncle Sam is a great sport!

Brin was very unsure what to make of baby Slade, but aren't they just too cute!

When the table isn't big enough for everyone and you have already eaten...

Getting some PT in on our family vacation

Aubrey wanted glasses too 

Raina is such a great big sister!

Nurse J's favorite way to keep tabs on Alessa while Brinley is taking a bath.

Nurse C stuck them all in the big tub one night and let me tell you, these

girls all love group tubby time!

 Her current favorite toy- those shiny shakers are so passe!

Friends <3

 Some of our favorites came all the way from Tanzania to visit ;)

We're working on facilitated cruising. Let's just say Brin and Nurse C were not on

 speaking terms for a solid 5 minutes after this...

Alessa gets quiet for 20 seconds I and find her here...

My first time at the A Fair in over 20 years. 

Brin fell right asleep to the soothing noise of hundreds of people, music and rides.

Saint patron GG taking in the BMX show

Our favorite chainsaw carver R-Nurse H's boyfriend

Meet the newest Deeb, the girls said his name is Richie

Raina & Alessa riding dragons while

Peter takes Cailyn & cousin Jayna on a big kid ride- mama was NOT ready for this!

More swingset fun!

Brinley loves her swing!

A day at the lake

Friends

 Peter is trying to bring back sweatbands....Brinley is not amused

Cailyn's artwork is amazing, she definitely does not take after my side of the family!

First time I think one of my kids has fallen asleep completely upright. SEIT is no joke!

**Thank you to each and every one of you who are still praying for us. We still need it. Everyone does. God created each of us with a need for companionship to model how He loves and wants to commune with us. Continued prayer points:
*Tongue growth
*Brin has been teething like a mad woman. She now has one tooth in her lower "gumless" area, three molars and is working on the top left eye tooth. She's been a bit uncomfortable as you could imagine and has started grinding her teeth- ugh!
*My foot has been feeling much better. I was finally allowed to take my boot off this past Wednesday and while I can't work out yet, I am able to do normal mommy stuff with very little pain. I had to go on a bit of a shopping spree as I am not allowed to wear shoes with anything between the toes- take a look at your closet...I had no sandals left!
*The two big girls are starting school on the 9th and prayer for all of us during the first few weeks of transition would be very much appreciated.
*We are seriously considering homeschooling the girls next year, so if any of you have curriculum recommendations or tips on managing sanity, quarterly reports, whatever...they would be most welcome!
*Health for each one of us. At the moment Raina and I are both feeling a little under the weather.

If you want to get updated when there is a new post here on the blog you can subscribe on the right. As far as I know it will only email you when we post a new entry here. This is good for those of you who don't check facebook but want to read the latest.

Feeling Grateful- with way too many videos & pictures to prove it!

As I type the rest of the family are playing Guess Who? No standard version would do for this family, oh no, it's the Marvel heroes edition (a garage sale gem). "Does your's have green skin?" Brinley is sitting in the middle of it, playing with a ball and inserting the occasional "Ga! Ah!" It is the little things that are truly gifts. 

Brin has been vocalizing much more frequently lately. This after a voice strike that lasted several months! It is so so so so cute! She has learned to "talk around" the trach. This just means she angles her head just right so you can hear her even without the passy muir valve. I repeat- so cute! Last night I distinctly heard "MA," it just melts my heart to know she will be able to call for her mommy! The return of her voice is a funny story. I am notoriously bad at storytelling, but it goes a little something like this (any fresh beat fans out there?)...Our wonderful speech therapist has been diligently trying all kinds of things to try to get Brin talking...one night she and nurse J said in exasperation "We've tried everything short of standing on our heads to get her to talk!" That night nurse C was working and when I relayed the message she said, "Well then, let's stand on our heads!" The rest, as they say, is history.

The last week or so the teething game has been no joke. At this point she still only has the one tooth on the bottom, but if the ridges on her gums are any indication we will have about 5 more any time now. 

Enough words, here are some pictures....

Cailyn graduated Kindergarten

Alessa, Brinley & I on a morning walk on our family vacation

Playtime with Aubrey is always fun!

Aren't I cute with my new glasses?

She spends a lot more time on her tummy, rolling and wiggling around

Brinley modeling the prototype flower crown

Sisters at Uncle Steve & Aunt Amy's wedding rehearsal

A little duck-duck-goose among flower girls/ring bearers

The flower girls! (p.s. I made the baby's breath crowns that day!)

The cousins!

Congratulations!

Helping Daddy play Munchkin with Uncles JM & Bubbles

Brinley's first mess and we couldn't be happier! It's fart putty....she was using it during speech therapy (she thinks it's the funniest thing when it farts- this kid has the funniest sense of humor!), when they were done nurse C went into the kitchen to make Brin's food, when she came back Brin had taken it out of the can and spread it all over her shirt, pants and rug!

10 yards of dirt- shout out to neighbor G who helped us move some of it with his tractor!

More help from family leveling the ground and placing the large pieces

Brinley likes it! She sends a huge THANK YOU to each and every

 adoring fan that helped us reach our goal!

We have become the neighborhood hangout and we love it!

Now that the "plastic jungle" is gone, we are transforming this space 

into an actual patio, complete with firepit!

Sisters can often be found in some such arrangement....

 All the girls get in on the therapy action sometimes (SEIT)

Then this happened. That's a walking wood shoe thing on me, Sarah. They're saying it's nerve damage that may never heal, but after 2 treatments at CORE I can walk (still with the shoe) with much less pain. We are praying for a complete recovery!

We have a new nephew/cousin! Welcome Slade Samuel, 

we can not wait to kiss your perfect little face!

Proudly sporting our "Love Trumps Fear" t-shirts from our very good friends' adoption fundraiser. If you want your family to look as good as ours and be as cool...make sure you don't miss your chance to grab one (or more!) when they re-run this sale!

 Brinley LOVES pt. Both kinds.

Playing with a pile of beans and toys. We have all become therapists as well as nurses ;)

She's also a really good helper now. Suctioning...Feeding...

Prayer requests:

*We are still looking to add a nurse to Brin's case. This should not be so hard...

*Continued healing/growth for Brinley's mouth and tongue/muscles

*Health for the whole family. Right now Brinley is going back on antibiotics as she has had a LOT of secretions as well as high heart rate and trouble keeping her O2 sats up. We are thinking it may be a teething/allergy combo that just got to be too much for her to keep up with.

*Healing for Sarah's foot.

*Sanity and help for Peter as Sarah is going to Colorado for her cousin's wedding for 5 days and leaves a week from today! If you want to bring a meal, borrow a child or three, come hang out...whatever, please contact Peter.

Again, thank you for your contributions toward the swing set. The kids are loving it! We are trying to arrange a work day here and I will post when I know more. We have a lot of things that could be done so pick your poison- shed to build, fire pit to tear down, wood to burn, rocks to lay in patio, trees/bushes to trim, mulch spread under swing set, stumps to clear,,,,

God bless you all richly. Thank you for continuing to do this thing called life with us!

Time is a funny thing

The past few weeks since Brinley's birthday party have been life as usual around here. It is wonderful to experience spring this time around. The flowers, grass, hanging out on the hammock, watching the kids play with the sprinkler. Last spring was spent in the NICU. The contrast has had me musing more than usual. Trying to wrap my mind around the warp-speed pace of last year and the "new normal" now (not that life is anything near slow or dull). We still have 1 week and 1 day until we hit Brinley's homecoming anniversary. Crazy!

Little miss has been working so hard to learn to do all those big and little things that come naturally to most kids. She has made such wonderful progress this last week and we are so proud of her hard work and diligence! It probably sounds funny to use those words in regard to a 1 year old but it's true. Even when the therapists arrive in the middle of Brinley's nap she wakes up with a smile and gets right to work. She is such a gem! This past friday she had myofascial therapy and it was one of those where "E" knocked it out of the park! Her gains: lazy eyes much less frequent, started using both hands together more often both in "random" wiggles and play time, has transferred toys from one hand to the other (YAY!), has exponentially increased her standing abilities. Honestly, most of my motivation for writing this post was to show you all the following video. 

I mean how exciting is that?! Laughter, tears and cheers!!! Thank you all for your persistent prayers!

Peter is working on the swingset this week. There is some lawn prep and stuff that need to be done but pictures will be up as soon as the swingset is!

Continued prayer requests:

-Eye movements and vision (We are still working on the glasses. As the script can change every 3 months we're working on trying to figure out how to pay for them)

- Tongue/mouth/muscle healing and growth

-Continued success with therapies. We have just increased both special ed and speech to 3x/week and added occupational therapy 2x/week. This on top of PT 2x/week and myo 1x/week. Nurse "M" sure was right about that revolving door!

-Favor with Dr appointments. I have dealt with most of the appointments up to now but am taking a break (for psychological reasons). Many thanks to my superhero husband and his somewhat flexible work schedule for making this possible!

-God's wisdom in Brin's care, balancing all 4 kids and their needs and getting quality family time in the midst of our busy schedule

-We are meeting a possible new nurse tomorrow in hopes that we will have more flexibility and not burn out any of our lifelines!

Thank you all for still being here a year later. You bless us. You are God's hands and feet. Your prayers and support make a difference!

She loves the pool and has a 5' splash zone

Swinging like a boss

I love this man more than I could ever express- 9 years strong!

Memorial Day Parade with some fellow NICU grads and friends

This year's ballet recital! Peter had 4 girls dancing!

 Cailyn & Brin