Wednesday, December 22, 2010

Christmas and coughing

Our little Christmas bear learning the art of standing!
He only goes into a standing position when we set him up
but he is getting more sturdy as the days go by.

Practicing big smiles for mommy - he is so much fun to be around!

Blessings abound.
Love you already, baby Dykstra peanut #2

Christmas was good. It was filled with Christ-filled moments, time with family/friends and food. It was not a time for sleep, however. We are quite frustrated with Noah's coughing fits which often lead to retching. He will cough for hours during the night and lately the coughing has lead to screaming fits throughout the night. We find this both physically and emotionally tiring. Despite letting him "cough it out" on his own, it keeps us awake as we know at some point he'll retch and need a vent. He also isn't comforted by our presence and cuddles - he really wants to be left alone.

Now, he may have a touch of a cold which isn't helping at present. He has been coughing for months and months. Behinds having a fundo, Noah is on Proton Pump Inhibitor medication which is all supposed to control his reflux coughing.

I've had a nagging suspicion for a long time that his coughing is perhaps not even reflux related. I am not going to stand by and watch him struggle through his days while being told by Dr. after Dr. that he is fine. Or that he is just a "retcher." Jared and I are immensely frustrated by the dismissals we've received lately from Drs. This is no way for such a happy-go-lucky kid to have to live. If there is nothing "wrong" with Noah, why does he cough and scream every time he is venting on a retch? We will be fervently advocating for Noah when the Pediatrician's office opens again in January.

Living without a diagnosis sometimes seems manageable. They can't find anything which means Noah's future is full of positive prospects. But it is quite stressful at times too. I read a statistic stating the marriage failure rate in households with an undiagnosed high-needs child is 90%. Startling. Now, I'll reassure you that our marriage is firmly founded in the promises of God and the vows we made to each other over 4 years ago. We'd had help to communicate when the stress was at the highest level. We are deeply committed and hopelessly in love :-) That being said, I can see where the divides can come when you are wading in deep waters without a sense of what you are wading through.

While we wait, ponder, worry and are some things to keep in mind/prayer:

1. Thankfulness that Allie has been diagnosed with a specific allergy and continued prayer for mom and dad as they move forward with their plans to modify her diet. Pray that this is the reason Allie won't eat and that she will have healing in her little body.
2. Pray for Connor and his brave parents as they tread through some tough stuff.
3. Those who have recently lost loved ones and feel their losses even more during the holidays.
4. Gratefulness for Grandpa D.'s recovery from surgery.
5. Our dear friend Linda who has been diagnosed with cancer. She was truly an angel to us this last year and now she needs our support and prayer.
6. That Noah will tolerate a change to his diet in January. We are planning to go to Pediasure, a full liquid milk-based diet. It has much more calories which means less volume but it also means a huge change for his gut.

With thanks for your care.

1 comment:

  1. Keep bugging the doctors! Remember, they don't know Noah as well as you do! Looking forward to getting to know peanut#2! Remember, I'm praying for you!