His hair is not yet in his eyes but he most definitely has a tail growing in the back. I love this boy's innocence. You can see how he is ever so innocently not wreaking havoc of our living room {and stereo components} with a tripod. But I digress, I must get working on that haircut.
Also it is my brother Mark's birthday today. He just moved home from Colorado with his wife, Erika, and I am hoping to see them sooner rather than later. Happy Birthday Brother!
Nathan's Vest treatments are still going great! I am slowly tweaking the settings until I get him to where he should be. We are up to 23 minutes with 30 as our goal. We will probably get there by this weekend. While I adjust the length I have also been adjusting the pressure and frequency. The vibrations are beginning to make my tummy itch. I fear I won't be able to tolerate him on my lap if I increase the frequency any more. And boy do I hope the new baby is enjoying all this shaking.
Nathan did not eat well today. I hope this isn't an indication of days to come. I want that big appetite back so I can continue to push the calories.
Other than that, I am really excited that Carla is redesigning my blog. It is looking great! But in order for her to finish it, I need to send her some new photographs. It's on my to-do list.
Update: I didn't realize until this morning that my post title was almost identical to Cindy's. She must have crept in and influenced me on a subconscious level. You can read her update about Reilly and her husband's CF screening here.
Nathan's Vest arrived via FedEx while we were at Camp Iliff, climbing until all our energy was drained. I had planned to return home and have Nathan take a nice long afternoon nap.
He was so exhausted that he literally passed out in the car and remained in a sleepy slumber state as he was transferred from car to crib. I had spoken with the trainer from Hill-Rom earlier in the day who had requested I call her when we received the Vest. I called her and she wanted to come right away.
In less than an hour she arrived and wanted me to wake Nathan up so she could make sure the Vest fit properly. Nathan did not want to wake up and he wanted nothing to do with this new machine so he screamed until we put him back in his crib.
That evening we tried again. I consider this his 1st treatment with the Vest. He screamed for about 5 minutes but I am so used to him screaming 20 straight minutes through manual CPT so it didn't bother me much. I paused the treatment twice so I could give Nathan his two puffs of albuterol and then had Jay set up the nebulizer for the hypertonic saline. I had emailed back and forth to Jen that afternoon since her son Gavin had also just gotten his Vest and she told me her RT's advice - Don't make it an option. So we pushed onward and made it through 20 minutes of the Vest but I did use M&M's as bribery. He must have eaten an entire bag. Every time he would finish one M&M he would demand another "emma".
The following morning we skipped the M&M's and saved them as a last resort. Jay's parents were over and we all made a huge deal of the treatments dancing and singing to Yo Gabba Gabba. I have videos of this session but some of the moments may be embarrassing for the adults. I will dub these clips to music at a later date. He didn't cry once for session #2. Yippee! But he did get some M&M's afterward as a reward.
That evening was session #3, very uneventful. It seemed like their should've been more to it. I may have been caught saying "I love treatments!"
Today we finished session #4. Nathan is tolerating the new treatment very well and we are learning how to balance the nebulized medications at the same time. Here is a video from this treatment session. Sorry, it includes a booger scene.
And then we both slid down a two story high purple swirly slide. It was scarier than I thought it would be, but now he naps. Slowly but surely I am learning how to tire this boy out.
And while he is napping, I am waiting for a lady from Hill Rom to arrive at our house and train me on Nathan's brand spanking new Vest, which has arrived and is sitting in the box in our foyer.
Today I am 11 weeks and 1 day pregnant. I stopped taking my prenatal vitamins weeks ago when they started coming back up. I started taking all my pills again this afternoon with lunch, the last meal of the day that I can happily enjoy. No problems so far.
Nathan seemed to really enjoy the free Kindermusik class we attended this morning. He even managed to make an escape in the bookstore while I was selecting a book for him. I chose Runaway Bunny. They have a 15 week session of Kindermusik classes beginning tomorrow but I can't justify the cost at the moment.
Since he decided not to nap this afternoon I brought him down and turned on some Yo Gabba Gabba and captured an adorably cute video of him dancing in his diaper. I am sure he is going to love the fact that I posted this video one day, but that's my right as a mom, right? Enjoy!
And while I was uploading the diaper dance video, FedEx came. I was so excited expecting the delivery man to be bringing Nathan's new vest to our front door. I even waited near the door. But then I opened the door to accept the package and noticed it was computer stuff my husband ordered. Tomorrow should definitely be the day!
Not to get all mushy gushy on you, but I never really thought anything of this song until my husband said it made him cry. I am talking about Just Breathe by Pearl Jam. Now every single time this song comes on the radio I look back at Nathan and all his innocence sitting in his car seat and I get all worked up.
As far as I know this is a love song but everything about it from the title to the lyrics gets me thinking about Nathan and how precious his life is. Just Breathe. Yes, right now he is breathing well, his lungs are working for him, but I know it will not always be easy for him to breathe. We spend hours each day maintaining his lungs.
And I hear him upstairs not napping, playing in his crib and I hope that a cure will be found for CF in his lifetime. I don't want to say goodbye to that lil guy anytime soon. I don't think I will listen to the radio in the car anymore. Don't worry I am fine now, got that off my chest and am going to cherish every second I have with my energetic boy.
This is what Nathan's face looks like after a bad session of treatments. Blotchy and red, my poor baby. He screamed and coughed and cried for about 30 minutes straight. Sometimes he just has a bad day and I guess today is one of them.
Vest Update: After several nights of receiving but not answering calls from long distant numbers I decided to pick up and good thing I did because it was a representative from Hill Rom. They wanted to verify some of Nathan's medical information, our shipping information, and wanted to confirm that I understood my responsibilities (in terms of cost). Basically, they will bill the insurance company and if denied they would apply for an appeal. If the appeal gets denied then I can either ship the Vest back at no cost to us (NO WAY!) or apply for either a partial or full payment assistance program. I just said I understood and I will worry about that if and when the time comes. Vest should arrive on our doorstep via FedEx either tomorrow or Friday after which I will need to schedule someone to come train us.
