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The verdict is in

Well, we spent yet another hour at the doctor’s office this morning. Ryley and Grace both have “big kid croup”. Whatever that is. Can’t do anything except treat the symptoms, so we’re loaded up on cough meds, decongestant, fever reducer, etc. Hopefully, we’ll get through the night tonight without either of them waking up coughing.

On a positive side (somehow this is a positive!), Ryley was FINALLY diagnosed as asthmatic. Why is this good? For the past two years, we’ve been battling with every single cold to keep him from pneumonia and dealing with a horrific, uncontrollable cough that would make him gag, and just rack his little body. Earlier this year, he was diagnosed with reactive airway disease, and given the “puffer” for when he gets the cough. We were in the doctor’s office two more times after that. This latest bout is #2 for the Fall, and we’re not even into November. I love our doctors….We have two that we see 98% of the time, and I refuse to let Ryley see anyone else now, given his history. Dr. Sternfeld was concerned about his breathing….the fact that he can’t take a full breath in without starting to cough, that he’s gagging when he does cough, and that he’s waking up constantly througout the night. The albuterol just isn’t cutting it. Then he ended up in the yellow zone on the peak flow meter. Now we have our own peak flow meter to check his levels, and another prescription for inhalent that isn’t just rescue meds. We go back next week for an asthma appt. Dr. Sternfeld was starting on his asthma plan when we left.

I am relieved. Not that he has asthma, but that it’s finally been recognized as such, and we can take steps to hopefully keep him from getting to the point he did five times last year. I feel more in control. Now I have the diagnosis, now I know what I can do and I can do it. Do I wish he didn’t have to deal with this? YES!!!!!! Just having that word attached to him physically means we did not escape fully unscathed from the NICU. It means he’s still not “normal” and that he still is a preemie and always will be. But having the diagnosis means we can take action, and will take action. I can help him. The shoe I was waiting for these past nearly five years has dropped. It’s not fun, but it’s surviveable.

8 thoughts on “The verdict is in

  1. So glad you finally have a diagnosis. And while it’s a proverbial shoe drop…it’s not one you can’t handle! And it sure beats wondering why the heck colds affected him so badly. Hopefully everyone is feeling better in your house soon! Denise

  2. Hi Donna, Hope everyone is recovering quickly….and happy to hear that Ryley finally has a diagnosis with a name on it!! I know how you feel, because I had to go on many journeys before the finally realized there was some permanent hearing loss with Benjamin….now the road is a little less bumpy! Give the gang a big hug from us!!! And not to worry, when the going gets tough, the SHARE moms here will give you a boost!!! Hugs,

  3. The diagnosis is the biggest step in managing and treating Ryley’s symptoms in the correct manner. I completely understand what you are saying. You wish he didn’t have this issue at all, but he does so lets take the appropriate steps to manage it. Glad he doesn’t have something more serious, than Croup, at this point. I hope he and Grace are soon feeling better! HUGS to you, for your long weekend!
    Wishing you a restful nights sleep, and Welcome to the Asthma club!! Karri

  4. Donna, I am thinking about you, and hoping also that Ryley and Grace feel better…soon! Certainly asthma is not something you want Ryley to have…but having a *name* for what you have been dealing with is *so* empowering. It is just a tremendous feeling to say, “I know what he has…now I can find a way to treat it.” There is much security in knowing that the treatments you *do* use are the correct treatments for his condition. It may not seem like a big deal…certainly there are worse things he could have…But it *Is* a huge deal. This is *your* child. You, Michael, and Ryley have been through a tremendous lot since he was born. This is the cherry that toppled off the cake, I imagine….at least…it might feel like that sometimes. It *is* a big deal…and we are hear for you. HUGS! Melissa

  5. Oops! Language police! I am only correcting this..because I know how serious my pals Donna and Darcy are about spelling errors! LOL It *is* a big deal….and we are HERE for you. There…I fixed it! <evil smile>

  6. Donna, I am so sorry your kiddos are sick right now! Hang in there!!! Asthma is a big deal. However, I am so glad you finally got the *diagnosis* so that you can know that there is something to help Ryley with his symptoms & not just feel you are constantly taking a stab in the dark, hoping what you choose works this time! Amen for good doctors!!! Hope your kiddos feel better soon & that you get some sleep too!! Hugs to all of you to get through the weekend!!
    (Oh, and some chocolate kisses, cause they just taste good & make things a little better!)

  7. Well, if you have to deal with the darn symptoms it’s better to have a diagnosis that goes along with it. At least now it sounds like they are working on a plan. Hopefully he’ll have a preventative plan rather than a reactive plan – and that can make all the difference in the number of good days versus bad days for Ryley.
    I’m eager to see what the asthma plan is. Keep us in the loop! Hang in there.
    Grateful for a plan of action!

  8. We go in Thursday for his asthma appt. He was still coughing and tired yesterday. Lack of good oxygen can wear a kid out! And he hasn’t been able to get out of the yellow zone on his peak flow meter. Was in the red for awhile yesterday evening, til after a dose of inhaler, then he was back in yellow. It kind of sucks dealing with it everyday, but whatever it takes!

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