Wednesday, August 27, 2014

Life update - medically speaking.

It's about time I get back on here! Good heavens! So many things have happened - pretty much all of them are good!

Sorry in advance, but this is mostly all medical updates, with a few pics of my little flirt to keep you interested.

Genetics testing came back and there is an abnormal growth on Chromosome 1. What does that mean? Well Jason and I get tested to see if one of us is the carrier. If we are, then there isn't anything to be done. If we aren't, we will address that later. Confused? Yep - me too. Ha!

Someone knows how to work-it already!

Goofy - and he knows it.

August 1 - We had Gavin's appointment with neurology. Since it had been a year since his last seizure we needed to discuss the next steps. Good news - we were able to take him off his seizure meds completely! Now if he stays seizure free for a year then he won't be labeled with epilepsy. Prayers for that!
Entertainment while we wait for the Dr.
August 6 - Feeding therapy. Not many improvements as far as chewing mushy foods (bananas, peaches, noodles). For a child with a normal esophagus this wouldn't be an issue. However, for Gavin the food gets stuck very easily if he doesn't chew it up. More therapy for us - scheduled through December.
We also met with Gavin's neurosurgeon. The geneticist noticed some abnormalities in Gavin's skull and thought it should be looked at. Our neurosurgeon thought everything looks within the "normal" realm. His head is just more of a parallelogram than an oval - thank you to our German ancestry and our big ol' BIG heads! :)

August 13 - We were BEYOND blessed by our North Dakota church family. They hosted a benefit for Gavin, and one of their members to help with medical expenses. What a HUGE blessing! The weather was perfect, TONS of people came, and we had a blast meeting new people and catching up with old friends!
He truly loves his nebulizer treatments.
Some nights he cries when they are over.

August 18 - Gavin got another respiratory infection with an ear infection to boot. He champed through this one though! No hospital trip needed!!! Just antibiotics, extra nebulizer treatments, and lots of extra love!
Peedie - a gift from Gavin's auntie Tracy is always good for a smile, a cuddle, or for making him feel better!
August 25 - Pulmonary appointment went great. She is happy with how he has been handling the past few viruses. The plan is to continue with two nebulizer treatments each day, upping them when he gets sick. Should he decided to get pneumonia as frequently as he did last winter, she will order a compression vest for him to help shake the crud out. Prayers that we won't need that!
Spending some time on the U of M campus.
Who knows - maybe in 18 years I'll be walking him around down here again.

Keeping himself entertained while we wait.
August 27 - Cardiology appointment to rule out heart defect. Gavin had an Echocardiogram done when he was in the NICU, and at that time he had a few openings that would close as he got older. Since then, many Doctors have noticed a murmur and each time they ask if we have had an Echocardiogram done. Our primary care Doctor recommended that we have one done to rule out any structural issues with his heart. Well, I am happy to say that Gavin has a completely normal heart!!! So relieved. The ultrasound tech was blown away by how good Gavin did during the procedure. He just laid their, smiling at the guy. During the ultrasound the man said nothing to us - which is normal. After he smiled and said "Well he is a dream patient - wish all my patients were like that".
Old Navy baby Jeans ad?

See mama - these are my meds
Prayers for two upcoming appointments.

September 2 - Gavin has a day-long appointment with the cranial-facial clinic. They are doing an eval of his skull structure. The roof of his mouth is so high, that he may have a cleft palate. We will know more after that appointment - but that would explain why the poor kid always throws up out of his nose!
Poor guy got his first fat lip when his face met the coffee table.
Felt HORRIBLE for him!

September 18 - Our first meeting with the orthopedic surgeon. Gavin has a 1/2 vertebrae in his lower back. It is causing scoliosis and possible problems with his left leg. We have been anticipating surgery since we learned that Gavin had this "anomaly". In fact I still remember being groggy after my c-section when the resident came in to explain the abnormality. I remember what he looked like and his stick figure drawing on the white board. Glad those days are behind us!
This kid loves his bubbles! And his bath. But mostly the bubbles!

Thank you to all of our prayer warriors! God is faithful in all things! While we are SO beyond ready to say "seeya" to the medical world - we are extremely grateful that we have an amazing hospital to work with. We owe so much to the University of Minnesota - Amplatz Children's Hospital!

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