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!