MRI for Mr. Boy's spine

There are many things that come along with Mr. Boy' s condition, one being spinal defects. We knew in the back of our minds that Mr. Boy had scoliosis and a tethered spinal cord which would some day require surgery, but were too consumed with the more urgent aspects of his needs to even think about it. And really we did not even want to go there yet.

Well, last week we finally had to go there, as we met Dr. Gust, the neurosurgeon who would be taking over that aspect of his care and got an MRI so that he could fully evaluate his back. He informed us that in addition to a tethered spinal cord and scoliosis, Mr. Boy has a condition called Sacral Dysgenesis (missing and damaged parts of the lower spine). This is so complex, that even though he is already a neurosurgery specialist, he has never seen this and would like to refer us to a specialist in Minnesota for evaluation. He seemed very pleased that Mr. Boy could move his legs and thought that as long as Mr. Boy has full use of his nerves coming from the affected column of spine (which we can't know till Mr. Boy can talk), then he should be able to walk. The tethered cord, scoliosis, and sacral dysgenesis should not cripple Mr. Boy  but would cause pain if not treated. He decided that another specialist in MN should better know when or if they should do surgery and what therapies he would need.

This is the word now... but what we've found is that as we dive deeper into any one of Mr. Boy' s issues, more things seem to surface so we are hoping and praying that this is indeed the final word and that surgery will be able to fix these problems. We should be seeing the new specialist in a month or so. We'll keep you posted!  

Mr. Boy is getting to be quite the little CHUNKY boy thanks to the feeding tube:)

Almost 6 months old

Welp, we came home from the hospital 2 weeks ago, after getting Mr. Boy's NJ tube put in (tube from his nose to his intestines for feeding) and we had one horrible week of vomiting, diarrhea, sickness, fussiness and teething, due to the new tube as well as 4 vaccine shots he got which made him ill, plus living with the fear of the tube coming out every moment. And then... one week of fabulousness. The weather is finally nice, so this week we've been taking Mr. Boy out on walks in the evening. Last night David and I looked at each other and said, "We finally feel like a normal family." And earlier this week I said, "I finally feel free!" We've been living these past months tip-toeing around our house and our son, too afraid to move for fear of a scream or some outburst we couldn't explain because there are just so many possibilities for the eruption of tears. But now we think we've got him mostly figured out, and now he likes to play with toys! It took 6 months, but Mr. Boy is finally the developmental age of a 3.5 month old (due to his premature birth), so we are now getting to enjoy the delights of babyhood.

The feeding tube. It runs 24 hours a day.

Formula pouch, feeding pump, and travel backpack

Mr. Boy's Slideshow

Mr. Boy's first six months in pictures. We are so blessed and proud of our little one.

More play time

Play Time

These are from before our hospital stay (and before the NJ tube)... sorry we are so slow in updating videos!

Hospital Days

We've had quite a few trials, failures and near-breakdowns this week but we are finally nearing the end of this hospital stay. We came in last Tuesday for a 24-hour study and are still here. They decided Mr. Boy wasn't growing at the proper rate, so we tried a special drug and increasing his caloric intake, but this made him vomit and reflux badly, resulting in an IV for dehydration. So we tried plan B... or are we now on plan Q? They inserted an "NJ" tube from his nose all the way past the stomach to the small intestines. Due to Mr. Boy' s jumbled up anatomy, it took 4 tries and 2 different drs to place the tube using a live x-ray as Mr. Boy gagged and screamed in protest. Now we will feed Mr. Boy through the tube using a continuous pump until he is big enough to do a surgery for a more permanent solution to his reflux, called a Nissen (he would technically be big enough if it wasn't for his strange anatomy).  This could take months or a year. We've had a few rough days as Mr. Boy isn't allowed to eat orally.

Tube for Impedance study

minutes after getting a painful IV put in, he decides to eat it... what a trooper

NJ tube (passes past the stomach to the intestines)