Monday, December 20, 2010

Back in the Saddle Again

Saturday was a hard, hard day. A culmination of days adding up into many, many tears and a few realizations. I had to get off my horse and sit in the dust by the side of the road and just cry for awhile.

Sunday I got back in the saddle and sat there.

Monday I'm still on and we're slowing walking forward. No galloping, just walking and getting my bearings about me.

I appreciate the prayers and encouragement. And a blog is a funny thing. I choose to publicly share "life stuff" and release it out into the vastness that is cyberspace. I had to think a little bit about whether or not I wanted to do that on Saturday. If my thoughts were more for my journal or for my journal and others that care about us and those that just peek in every so often.

I decided I wanted it to be public. That we don't always talk about the hard stuff of this journey in such raw ways but they are real and a part of our experience. I'm kind of a "nose to the grindstone", "push through it", "Jessup" kind of person (anyone with Jessup connections will totally get that reference). I'm more prone to just keep pushing then I am to revealing and one of my realizations is that I need to do some more revealing. I don't plan to blog about all my inner secrets :) but I do plan on being more intentional about sharing with a few more folks about what is hard and what I'm struggling with. And I'm not going to second guess myself when I'm having a "CF moment" and debate about whether or not I should call someone to talk with or pray with. Honestly, it is silly inner debate.

"Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things." Philippians 4:8

I'm also going to think about some things that allow my heart to rest and be reassured. Like Quinn asking me to rock him before laying down for a rest time..."Mom, you are the best rocker in the whole world." Or Sela's sweet smiles and laughter as she runs down the hallway to escape me "chasing" her. Or how much I enjoy watching "The Sing-Off" on NBC. Seriously, it makes me so happy. Or when I get to go thrift store shopping, I love it! The thrill of the hunt and the joy of a good deal. Or the bouquet of roses a friend brought by on Sunday...beautiful. Or sitting on the couch talking with Ryan. Or sitting on the couch talking to Ryan when I know he is staying up so he can hear me talk because he loves me even when he is really tired. Or friends talking together over dessert. Or choosing a new word each day for our Advent calendar (well, trying to do each day, we've had to do four words at one time on a few days). Saturday's was "grace".

Joy to the world, the Lord is come, let Earth receive her King,
let every heart prepare him room
and Heaven and nature sing,
and Heaven and nature sing,
and Heaven and Heaven and nature sing!

Saturday, December 18, 2010

Today I am not a trooper

Today I am not a trooper. I feel like I’ve been pushing forward and moving forward and pulling us forward and today I am tired. I had a “CF moment” this week and I had to call Ryan and cry. I heard Quinn cough in his sleep during his nap and freaked out. Is he getting sick? What can I do to stop this? I can feel really anxious or stressed and my inner alarms go off.

This past week, as I’ve been trying to implement this additional breathing treatment and CPT, it has felt overwhelming. This additional session feels so complicated…we have to get the first session in early, the second session has to be at least six hours later, and at least an hour before Quinn goes to bed. And it is an extra 45 minutes of TV each day. It seems like a small thing but it is really frustrating to me. Thinking about food and what the best thing is for him to eat and did he have his enzymes and vitamins. Getting ready for bed and making sure his feeding tube is OK, the supplies are set up, and that his pump is ready to go. Going into his room before I go to bed, I check to see how much formula is left in the bag and do my quick math to set my alarm. 240ml left=3 hours and I set my alarm for 2am. 280ml left=3.5 hours and I set my alarm for 2:30am. When my alarm goes off, I go get the supplies and turn off his pump, flush the tube, and detach the cords. Make sure Quinn is OK, peek in at Sela, and reset my alarm.

I think I’m grieving that there is yet another step in our CF care. I don’t like CF. I wish we had nothing to do with it. I can usually talk myself through this feeling, that someone else has it worse, that it could be harder or more complicated or more horrific, all of which is true. CF is hard. CF is expensive. Even for Ryan’s Type 1 Diabetes…chronic illness is expensive and we have good insurance. Two chronic illnesses are expensive. I’m so thankful for Ryan’s job, for benevolent benefactors in our lives, for insurance, for peoples’ prayers. But today I’m mad at the five medical bills that I need to pay. I’m thankful that we are able to pay them but mad that we have to pay medical bills. Today, I’m just tired.

Today I am not a trooper. I feel like I’ve pushed and pulled and today I’m tired. Sela is teething—she got two molars in, two more molars coming in, and her gums look like her top eye teeth are bulging. She has a cough and had a fever the other night. Sela teething and having a cold really raised my anxiety because I want her to be well but I also don’t want Quinn to get sick. I immediately thought will Quinn get sick? How can we separate them? What can we do to keep him well? My internal alarms go off and sometimes it isn’t totally logical. This time I called nurse Ben at the CF Clinic—when in doubt, call nurse Ben! And he patiently reminded me that you can wash hands and clean toys but that if Quinn gets sick and it impacts his lungs then the CF Clinic will treat him. And we are a family and I can’t quarantine Quinn and Sela from one another. But there is part of me that goes into overdrive of how can I keep Quinn well. And it feels like little alarms going off in my head. And how can I help Sela when she just wants to be where Quinn is. And in the midst of all of this medical, there is just the day to day emotional of having a genuinely awesome 4.5 year old who generally makes good decisions and deals with all this stuff everyday but he also wants to push his boundaries which means mommy has been holding the boundaries. Some days this goes really well. And other days it doesn’t. This stretch has felt much harder.

Today I am not a trooper. Ryan is sick too. He has worked hard at work and in his MBA program. And his body is done or as Quinn often spells to emphasize his point…D-O-N-E, done. He is tired and sick and mostly sleeping. He has had classes each week and homework plus multiple Saturday classes. I’m proud of him for what he has been able to do and what he has learned and how he has conducted himself through it. He has had a challenging fall—he had a colonoscopy and endoscopy in October to test for Celiac Disease. He has been gluten free since then and diagnosed with Latent Celiac Disease which is a whole other post in and of itself but we have navigated this diet/health change and continue to navigate it. In November he got braces. Braces are just a bummer in general. The fall has been challenging and we’ve been looking forward to Ryan’s Christmas Break. I will confess, that when he went to bed last night sounding horrible and when he woke up this morning sounding worse, I cried. And then I cried some more a little later this morning. And then my parents took Quinn for a couple of hours today. And then I cried a bit more. I’m ready for everyone to be well, or as healthy as possible, and ready for some “new normal” and just ready to be…I’ll probably cry some more today because that just seems to be the course of events for today.

And hopefully I’ll be a trooper tomorrow.

Friday, December 10, 2010

Quinn's New Vest

At our CF appointment in November, Dr. Wall talked with us about adding an additional breathing treatment and extra session of chest percussion therapy to what we currently do with Quinn each day. We've been using little mallets to do the percussion therapy and with Quinn's age and additional session he felt it was time to upgrade to the "vest". An air compressor is used to send air through a hose which inflates the vest at programmed intervals which "pounds" on Quinn. This is our new version of chest percussion therapy. The new treatments are not a response to changes in Quinn's lungs, praise the Lord, but they are important in the process of doing the most we can to help his lungs stay clear so issues don't arise.

Quinn chose a red vest so he could be a fireman. Here are a few pictures of Quinn with his vest, firefighter gear, the hose, and air compressor.

We recorded a video of Quinn using the vest so you can see and hear what it is like but are having a hard time loading it. His breathing treatment is about 10 minutes for two times a day and then the vest is used after each treatment for about 20 minutes. All in all he spends about an hour to an hour and a half each day. We let Quinn watch a show during these sessions so this is his main TV time for the day. My mama heart is a little sad that he has to do this each day. He is such a trooper. He does great with the vest but had a really hard time with the second breathing treatment. There are challenges in all this but we're looking to find our "new normal". At some point these things won't feel as overwhelming and we'll just feel like "this is what we do each day". Quinn really does an awesome job.

Looking forward to that new normal.

Monday, December 6, 2010

music for monday

O Come, O Come Emmanuel

Oh come, Oh come, Emmanuel
And ransom captive Israel
That mourns in lonely exile here
Until the Son of God appear

Rejoice, Rejoice!
Emmanuel shall come to thee, Oh Israel!

Oh come, Thou Dayspring, come and cheer
Thy people with Thine advent here;
Disperse the gloomy clouds of night
And death's dark shadows put to flight

Rejoice, Rejoice!
Emmanuel shall come to thee, Oh Israel!

Oh come, Thou rod of Jesse, free
Thine own from Satan's tyranny
From depths of hell Thy people save
And give them victory o'ver the grave

Rejoice, Rejoice!
Emmanuel shall come to thee, Oh Israel!
Rejoice, Rejoice!
Emmanuel shall come to thee, Oh Israel!

Monday, November 22, 2010

Music for Monday

stay close by my side
keep your eyes on me
though this life is hard
i will give you perfect peace

in this time of trial
pain that no one sees
trust me when i say
i will give you perfect peace

and you'll never walk alone
and you'll never be in need
though i may not calm the storms around you
you can hide in me
burdens that you bear
offer no relief
let me bear your load
cause i will give you perfect peace
stay close by my side
and you'll never walk alone
keep your eyes on me
and you will never be in need
though this life is hard
know that i will always give you perfect peace
i will give you perfect peace

perfect peace by Laura Story

thankful that God gives perfect peace and is faithful in all circumstances. Amen.

Thursday, November 4, 2010

Let the Sunshine

What two great warm sunshine-y days! So nice and I expect that we'll be on the trampoline for awhile today! Life has been full and I have a hundred blog posts that I've written but they are all in my head and not on the computer. Today I want to share some pictures of life in the Dougherty household over the last few weeks.

Some things I've been thinking about lately: food, studying the Bible, parenting, budgets, what makes a home a haven, priorities, health, and a few other things...hopefully I'll get a chance to process some of that here soon.

On Halloween we went over to my parents' church's Fall Festival.
Quinn was Buzz Lightyear and Sela was a little cowgirl

Sela showing off for the paparazzi

Quinn put together a big puppet show...

A little Daddy time on a nice day...
and do you notice something new on Ryan's teeth?

Sela and Daddy...and Daddy's new braces

There has been a lot of life going on in the Dougherty household.
A lot for Ryan which really deserves its own post. Wednesday Ryan got braces which will be on for the next 12 months. I think he always has the greatest smile but the dentist and orthodontist think he has had some dental issues because of his bite and in order to prevent further issues--the metal was attached! For Ryan, the braces are just one little thing that he has been navigating. More to come.

We took Quinn and Sela to the park and loved watching Quinn on the slide and Sela do her best to follow Quinn
. They are both on the move!

This season is full but it was good for all of us to take some time together and play!

Saturday, October 23, 2010

We made it!

It has been a challenging week in the Dougherty household. Sela got her 7th tooth, felt under the weather, and had an ear infection. Our sweet Quinn has been a little more on the sour side this week with more complaining, talking back, and time outs than I would like to count. I've been sick--you know that sick that isn't sick enough to send you straight to bed but now well enough to do what you would normally do? And Ryan has had work and class and homework and life in general. Big talks about big things, making big decisions and just "doing life". I'm thankful that we made it to the weekend!

The other night when Sela was up I finally just decided to stay up rather than lay back down for 15 minutes and get back up with Sela...hit the repeat button for 3 hours...up, down, up, down until 3am. I got to select some new books from the library (including "Bringing Up Boys" by Dobson...note statement about Quinn above). I really love the library. Recently my main times to read are when I'm doing Quinn's breathing treatment and we have a concentrated 30 minutes or so to sit together. I've mastered the art of holding various pieces of equipment while keeping my place in the book. Right now I'm reading "How to Read the Bible for All Its Worth" which I've really enjoyed and given me some things to think through.

This week I had my own "Meredith and the Terrible, Horrible, No Good, Very Bad Day". After that crazy night of being up with Sela until 3am we decided I should take her to the doctor just to check and see what was going on for her. She's had a big cough which sounded really ragged and rattle-y, not typically a good thing.

I called our pediatrician's office and was able to get an appointment for 11:15am. But then I got to thinking, I had asked if the clinic was busy with walk ins and it sounded pretty slow so I thought I should cancel the appointment and take the kids in earlier so we could get Sela checked out and home for a nap. It was a decent plan but perhaps it was influenced by my lack of sleep. Can you see where I'm going?

The kids were ready, I threw on a hat, and headed out the door. I had canceled my 11:15 appointment and we checked in about 9:45am. One walk in before us who got called back right away.

Thus began our wait...

Two kids who wanted to be down on the floor playing with the toys in the waiting area to which my mama-germaphobe heart is going...NOOOOOOOOOOO! This is not a playground! Yuck!!!!

We were called back to a room at 10:55am. I was SO frustrated...with myself and with the situation!

We were waiting to see a doctor at 11:15am.


Same time as my initial appointment.

And I couldn't do anything about it! My own choice! I was so frustrated! Ryan was coming back from a meeting he'd had in Tualatin and actually met me at the office, bless his heart! I was trying to hold it together and I was so glad to see his face.

Little Sela got her prescription...and we left.

I waited for medication at the shower, hat on, so tired--a look I sported much of this week.

Quinn continued to have a series of "moments" (see note above).

My sweet friend called about something else but was gracious to listen to me talk and cry. Oh was one of those days!

That was earlier this week. Now it is Saturday night. I feel better. Quinn had a time-out free day which was so great for all of us! My sweet boy! Sela is just as funny and dear as ever. Ryan got to watch some football though he had homework he worked on this morning and more homework he is currently working on now. His 33rd birthday is Sunday!!!!

I'm always thankful that every morning is new, with new possibilities, and a fresh start. We need it!

Sunday, October 17, 2010

What is on the roof?

A friend of ours was moving and we were able to take their trampoline from them. A trampoline is actually really good therapy for Quinn--the bouncing up and down is great for his lungs! Grandpa Jessup, Uncle Ken, Uncle Kyler, Uncle John, and Aunt Danae helped walk it a block from our friends' house to our house.

And then came the to get it into the backyard?

How about over the roof?

Over the roof and to the backyard! Now we can jump on the trampoline while the weather is still clear and warm!

Saturday, September 18, 2010

Sela is ONE

Sela's golden birthday was this year...turning one on September 1st. What a JOY to celebrate Sela's first year of life and it was a grand birthday week to be sure. Really, the key is Sela. She is such a delightful, smiley, curious bundle of sweetness.

She already seems to have a lot to say...she chatters all the time and sometimes I have to stop and think about what sounds I just heard because I think she actually said something!

We have a great time singing together...Sela "sings" and bobs her head. She will even do hand motions: clapping or waving one pointer finger around while singing "This Little Light of Mine". Another fun Sela "trick" is when we say "Hip, Hip, Hooray" she will raise her hands up high when we say "Hooray!"

She is about 20 pounds and 29 inches--she grew two inches since June! Sela is still cruising along the furniture and will walk around when you hold her hands but so far she hasn't started walking on her own. She is fast and can crawl like lightning when she wants to get to Quinn or something. She has also discovered great joy in crawling up onto chairs where she preferably likes to stand up and give her parents' a heart attack.

On Sela's birthday we took our usual birthday trip to Chapters! Just because Sela can't drink coffee doesn't mean anything!

That night we did our official birthday party with family. Sela really enjoyed people singing to her. And I made her a peach and blueberry cobbler for her cake! She eagerly ate whatever she could put in her mouth including the fistful of vanilla ice cream she crammed in there too!

So fun to celebrate with the "Newberg family" and then we continued the celebration with the "Springfield family" over the weekend! Sela and her Uncle Derek are September 1st birthday partners so it was great fun to have a joint birthday party for the two of them (after the Dougherty guys and I went to the Ducks opening football game, of course).

Sunday we were able to have a special dedication time at church led by Grandpa and Grandma Dougherty where Grandpa Dougherty is the pastor. Their words and prayers were meaningful and full of truth. I'm glad that we could affirm our intention to teach Sela about Jesus and to follow him as a family. While we don't get to Springfield as often as we would like, we know how faithfully the church family there has prayed for our little family. From the time that Quinn was born until now, their willingness to pray for us and care for us in this very real way touches me very deeply. It was really sweet to have that time together.
Hip, Hip, Hooray for Sela!

Saturday, August 28, 2010

...Three, Four, Five!

You may be wondering how days three, four, and five went of swim lessons! Did we discover the next Michael Phelps or did we have a new tadpole on our hands? After day one we wondered if we would be back for day two. Day two we wondered if he would actually smile while in the pool. Day three, well, day three was a good day it just kept getting better.

Day Three

Day three Quinn was willing to float on his back and on his front with some direction from the teacher. He really didn't want to put his face in the water and wasn't sure about trying what she was asking him to do. When it came time to jump from the side into the water...well that last picture shows Quinn starting to sit down on the side...then he would kind of s l i d e....into the water. And we were all about encouragement!

Day Four

Day four brought a sub instead of the regular teacher and she did a good job with the three little boys. While the continued floating on the fronts and backs, Quinn told the teacher a couple of times that he didn't want to try a few things she was asking them to do. It was so interesting watching him and observing the progress of the week. While he wasn't eager to do everything, he didn't cry and he did participate. The teacher carried the kids over on her back to go off a little slide into the water. Quinn wanted no part of that plan and would again stand on the side, move to sitting, and then slide into the pool. Grandma and Grandpa Jessup came and Quinn really liked have a few more spectators to cheer for him!

Day Five...The Final Day!

We made it to the last day of swim lessons! Quinn laughed and smiled in the pool. He enjoyed playing with the two other boys in his lessons and he really tried everything the teacher asked him to do (this was after a mom "pep" talk about trying new things)! He put his face in the water, moved his arms, kicked his legs, and you could tell his confidence had grown! He had a chance to go down the little slide again...he actually went down the slide! Well, he went down the slide but before he went down he figured out how to wedge himself in the slide so that he wouldn't actually land in the water. The picture above shows him sitting at the end of the slide before he wiggled off directly into his teacher's arms. I was impressed with his planning :)

Aunt Danae came to watch too and Quinn was excited to see her. Quinn finished up his lesson with a little certificate and a LOT more comfort in the pool. I'm looking forward to taking him back to the pool soon! We went over to the little playground outside the pool and played on the equipment for a bit before heading home.

It was a good learning experience for us as parents too. We won't always be able to control his circumstances but we can help him navigate through those experiences. I loved seeing his confidence grow!

Tuesday, August 24, 2010

Swim Lessons...Day Two

We weren't sure how Quinn was going to do on this second day of swim lessons. This morning he told me that he didn't want to go. After I told him we were going, I didn't hear anything else about it and didn't notice any nervousness. Instead, as the time got closer he seemed to get a little more excited and was eager to change into his swim stuff.

The lesson went really well for Quinn! No falling off the dock today! He still looked as stiff as a board in the water but he did everything the teacher asked and actually cracked a smile or two. Aunt Danae and Uncle John came out to watch which was a BIG deal to Quinn as he had called them to extend a personal invitation to come to the pool.

When we left today I asked what his favorite part was and he said, "Coming today!" So thankful he had a good day trying new things!

Monday, August 23, 2010

Swim Lessons

Today was the first day of swim lessons for Quinn! For a half hour every day Quinn will get to be in the pool and learn a few things about swimming. It is crazy that we've waited this take him to the pool! My goodness! It will be an interesting week. Quinn likes the idea of swimming but isn't so sure about getting his face wet or feeling cold and wet.

Quinn and two other little boys were a part of the lesson and Quinn tried everything the swim teacher asked him to try. The tricky part is that on the raised dock that the kids stand on, Quinn got too close to the edge while jumping up and down to stay warm and jumped right off the edge of the dock into the deeper water.

It really freaked him out and I wound up talking with him while he was out of the pool coughing. And when Quinn gets scared and starts coughing, he typically throws up too. Sure enough, he threw up. I told him I was going to shower him off and he was going to get back in the pool. He cried and really didn't want to but we got back out there and he cautiously rejoined the lesson.

At that point the kids were jumping off the side to the teacher...and he did it too! He lasted until the end of the lesson and then he was ready to be done!

We asked him what his favorite part of the lesson was and he said:
"The end. When I got to come see you guys!"

I'm hoping tomorrow goes better...