Clinic Visit Results!

Just opened up my email to find the “final results” from our clinic director. My heart seriously stopped beating for awhile when my eyes saw the words. It always does…probably always will. Awesome Awesome Awesome. Final Culture is negative for bacteria and all blood tests were normal. I have been transported to a very serene and calm place…my world is intact right now. Everyone is healthy and happy and thriving. We are all so full of life and excitement – these are the days you live for. These are the moments I hope to NEVER forget. I’ve scheduled to have our family photos taken next week by a friend’s sister. Her work is amazing and I am so excited at the thought of capturing this time in our lives on film. The boys are at such amazing and fun ages. Every day they do or say something that blows my mind and makes me crack up laughing…as well as question what PJ and I have gotten ourselves into! If I’ve learned one thing over the last year and a half (and oh have I learned way too much!) it’s to fully embrace these moments. To allow yourself to bask in the sunlight of health and happiness when it’s shining on you….I’m basking!

First light

Babies…babies…babies!!! Nothing gives hope and lightness more than newborn babies. They’re all around me this weekend. My bestest friend from college is being induced on Monday with her second. I think it must be a crazy flood of memories for her. Her oldest daughter is in jr. hight school so she has been out of the world of diapers and formula for years now. I think it’s probably a little scarier going back knowing what you know as a mother….remembering what is to come and how hard it all can be. The beauty is that it is all so very worth it. Then on Sunday I will be going to another girlfriend’s baby shower. It is her first and she tried and tried for this sweet blessing. I think she was about to give up when she found out she was pregnant. All the sweeter the gift in the end – but I know it was hell while she was going through it. So – to you both – Congratulations! Welcome (back for Tanja) to this crazy world of bringing life into the world and helping it grow and blossom. Call me when you’re at wits end because of lack of sleep and crazy hormones – I remember! Call me when they do something for the first time or fill your heart and soul so full of love and bliss you think you’ve reached heaven – I remember that too! And most important, at the end of the day after you’ve given them everything you have and you find yourself thinking of something you haven’t done or some way you fell short embrace your humanity and tell yourself with all the confidence in the world “I AM A WONDERFUL MOTHER!” because you are and your children think so too!

CF momma talk!

I know that there are SO many of you out there who don’t even have insurance or insurance near as good as ours is. I know that I am blessed to have what I do have. It doesn’t mean that I don’t still need to vent every now and again.




Ok CF mommies – here’s one I know a lot of you deal with. A fundamental key to keeping our CF kids healthy is keeping their weight and nutrition up, right??? And most of you struggle with this continuously, right??? And there are studies proving that keeping them at or above weight also keeps their lung function up, right??? So, then why is it that our insurance will not pay for Cole to see a dietician? Even after I appealed and our Doctor wrote a letter to the insurance company explaining the necessity of it! At this point it isn’t even about the money we have to pay every time to see her – it’s the principle behind it. Or maybe that I didn’t win the fight – probably both. Every time you go through the hassle of appealing the denial of a claim it’s just kind of like rubbing alcohol on an open wound. Then when you give them all the proof that this is a valid need and that it will probably save them money in the end and they still deny you it’s just a bit incomprehensible. I can’t imagine what parents feel like who’s children die because the insurance company is denying them the coverage of a procedure they need to live.

So much to say…so very little time.


I really don’t know how you mommies do so much. Treatments, housework, work, care for and hang out with your kids, have time for yourself, blog, sleep…oh yeah and spend time with your husband. (And why can I always find time to eat???) Some days it seems like there isn’t enough time for just the absolute necessities. Working full time again this summer is really killing me! I have just had to admit I cannot do it all and work full time. (Let’s be honest, I can’t do it all period!) The bad part is I am kind of wishing away the summer because of it. STAY IN THE MOMENT ALISSA - This is my mantra - This breath right here!

The boys are on a sleeping strike right now so I think that is multiplying everything. No one is napping - haven’t been for DAYS. And they are staying up so late. My last post was the beginning of it. Thank God I embraced it and let it be – it is now happening every night. Cole napped for the ride home from Iowa City yesterday – and that’s all. He didn’t fall asleep last night until 10pm. The great news is that he is now sitting through his vest pretty nicely. If we put in a Baby Einstein video he’ll usually just sit on our lap and watch it for the 30 minute treatment. Such a HUGE relief. But, we haven’t quite conquered the nebs (hypertonic saline) while he’s awake. I think it makes him feel too claustrophobic. That will be next on our list! The other miracle that I truly am grateful for is that they aren’t crabby or sick – they’re just not sleeping. When they’re awake they are FULL of energy…running, laughing, playing, screaming!!! I just wish I had the energy to keep up with them. I am so blessed to have PJ, mom, Bob, Nina and Granddad, etc. It truly takes a village!

I have to admit I woke up Monday on the verge of a panic attack. It was sitting in my chest – right there in my throat – just threatening to burst out. The dialogue of disaster just kept playing in my head trying to convince me that something horrible was about to go down. I’d had night sweats and nightmares all night. I was on the brink of that very familiar spiral down…all consuming anxiety which leads to debilitating depression. The fight was on – keep myself out of that place. This became my mission and priority for the day. Sad and embarrassing - but true. Over the past week I have realized that my drive or need to write this blog wasn’t what I was worried it was – it is actually quite the opposite. It is not so I can try and convince the world and myself how successful I am and amazing my life is. It is to show my Shadow and my Light. To expose myself for who I truly am and still be able to accept and love myself at the end of the day. For those of you who happen upon this and judge me - I accept that. But I do dare you to take a closer look and see what it is about me that you actually dislike about yourself???? (I’m reading The Shadow Effect – can you tell?)

Okay so back to what’s REALLY important! Cole’s visit to Iowa City (University of Iowa Hospital Pediatric Cystic Fibrosis Clinic) went great. Chaz said he didn’t want to go and would rather stay and play at Oma and Papa’s so it was just Pj, Cole and myself. Cole has slowed down a little on the growth/height chart…but he’s still in the 90th percentile which for a CFer is absolutely amazing. He weighs 28 lbs and is 15 months old. He’s a BIG boy. This is the longest we’ve ever gone between appointments so I was a bit nervous about how he’d do. Now that he is over a year old we only go every 3 months instead of every month. He did great though. He cried a little when we had to do the throat culture but that was it! The numbing cream on the arm worked so well that he just sat on Daddy’s lap for the blood draw. (She had Toy Story 2 on to distract him.) He drew on the chalk board in our room and flirted with the nurses a bit. My sweet baby is truly amazing! We won’t get the sputum culture back until maybe Friday so we really don’t know anything else right now. That is really the big determining factor on how he’s doing and what we have to do. If he cultures a bacteria he will need to go on antibiotics. We just pray he doesn’t and especially pray he doesn’t culture one of the really bad ones…pseudomonas or MRSA. He’s cultured each of those once before about a year ago. First was pseudomonas I think…then within a couple months was MRSA. The good news is that he hasn’t cultured either since then. They both can be very hard to get rid of. So we just cross our fingers and pray!!!!!!!!!!!!! (Also pray that it isn’t just hiding down in the lungs and we’re not seeing it but I don’t believe it is because he’s had a bronchoscopy and CT scan since that showed no bacteria or inflammation.)

The eye opener at the visit for me was the Doctor’s surprise in how well Cole is doing. I didn’t fully realize the complications that his tracheomalacia can bring into play with the CF or how little of a chance there is that it will fix itself with time. I could tell the Doctor was very surprised Cole has been so healthy and is not coughing more and having more problems with clearing his mucus. The tracheomalacia tends to trap it down in there and cause more infections and inflammation. So far so good. But we are having a consult with the surgeon at our next visit to learn about the surgical procedure to help correct this and find out if Cole is a good candidate for it. It’s kind of hard to admit to myself I guess that the Doctor thinks this may be necessary in the future…but the truth is he wouldn’t be having us go through this now if he didn’t want us prepared for it….my stomach turned just typing it.
I sat in the back seat of our Camry – squeezed in between the 2 car seats and loved on CoCo the whole way home! He is such a miracle!!!!!

It’s so strange but I feel like sometimes I am in denial about it all but other times it feels like all I think about…I guess I never really let myself believe how bad it could be – but why would I? Would it really make anything any easier if that happens? I swear my anxiety disorder feeds on this like crazy if I allow it to. I’m just still learning how to stop it from doing that. The only real answer is LOVE LOVE LOVE!

I heard an interesting bit of news today. The leading cause of heart attack and stroke has now been determined to be anxiety and constant worrying! This more than your genetics, age, lifestyle, etc. So, I think “Great- now I’m going to worry even more about worrying too much!” Anyone that knows me is probably pretty aware of my anxiety issues. For those of you who don’t – I’ll spill. I guess I’ve always been a bit high strung and serious in a way. I am my own worst enemy and critic. When I was a senior in college I had my first panic attack. I was sitting in French class – a day I will never forget – and everything got all fuzzy, the lights buzzed, the room swirled, my chest pounded. Then the most intense surge of fear overtook my body. I thought I was going insane and raced out of the classroom (I was never able to return to that class again!) That week I was diagnosed with an anxiety disorder. I have come a long way since that horrifying experience. I can usually ward off an attack now unless I am asleep. But, the incessant voice in my head is still usually stammering on about what I should be doing or saying or thinking or being. In order to “fix” myself I have tried countless remedies. Therapy, medication, alcohol, yoga, running, meditation, acupuncture, reiki, massage, an assortment of self help books….you name it. I’m definitely not “fixed” but I am worlds away from where I was and becoming more comfortable with my issues and what I need to do to keep myself grounded and at peace. It’s a hard fight – I’m not going to lie. 

That being said - yesterday was a small victory for just being in the moment and going with the flow!  It was just one of those days when both the boys were off schedule. They both crashed hard late afternoon for a bit. By the time I got home from Bix at 6 (the last one L) it was 8pm and they were both seemingly tired. We started our normal sleep routine but after 30 minutes of the vest, CoCo was still wide awake and rambling on and on about who knows what – he was so happy and smiley just chatting away. Chaz was also just lying in bed awake. He told me “mom, I’m tired of laying down and trying to sleep” This is where the beauty of summer and being married to a school teacher comes into play. Instead of getting stressed and worrying about everyone being tired in the morning and trying to force them to sleep I just let them do their thing. Chaz came down to the living room with the rest of us and Cole danced like crazy for all of us between running and screaming about. They both laughed, ran, cuddled…whatever until about 11:30pm! Then within seconds of the first yawn and putting them down they were both snoring away. Pj and I both laughed when I suggested maybe this meant they would sleep in later tomorrow for him…although Cole did stay in bed until almost 8 which is very late for him. I did stay awake until about 1am to get my downtime in but it was so worth it!