Bouncer

Not quite sure what to do... 

Holding on for dear life.

Footloose And Fancy Free

Mr. Boy's boots and bar are finally off during the days! Mr. Boy now only has to wear them at nights for about 3 years, but he no longer has to wear them 24 hours a day! woo hoo! Mr. Boy loves his new found freedom and wiggles his feet and legs happily all day long. I don't know if we are more excited, or Mr. Boy!  The boots were heavy and awkward and thus made it awkward to hold Mr. Boy.  And as many of you know, I am not the best with babies. Before Mr. Boy,  I'd probably held a total of 5 babies in my entire life, and I'm certain I was uncomfortable while doing it. It's not that I didn't like babies, I was just terrified of the foreign little creatures. :) I think by now I've got the hang of it. But you can see why it'd be so nice to finally be able to hold him like a normal cuddly babe. 

We don't like going so long without updating the blog but we'd got it into our heads that we should only post new medical things happening with Mr. Boy.   For the first 6 months of his life, as his medical status was changing almost daily, that was easy to do. But now life is finally slowing down and we are feeling more like a relatively normal little family. I actually shouldn't say that life is slowing down... buying a house is crazy and we feel like chickens with our heads cut off, but its perfect timing for Mr. Boy's medical surprises to stop popping up left and right.

Trip to Gillette Children's Hospital in Minnesota

We were referred to Gillette Children's Hospital in St. Paul, Minnesota by our neurologist in order to get better counsel about Mr. Boy's spine. So David and I drove Mr. Boy 4 hours there and 4 hours back yesterday for the appointment. We learned a lot about all of Mr. Boy's body and the reasons for everything, from this one visit, which was very helpful. 

Medical (long-winded) explanation: Mr. Boy's spine is missing some tendons, is curved, and has a tethered spinal cord (the cord is attached instead of free to move and stretch like ours). The term "Sacral Dysgenesis" which the doctor told us was part of his's back problems, is just a blanket term meaning there are damaged parts to the sacral part of the back. His lower back, or lumbar spine, is missing parts. These missing and/or damaged parts are the ones which affect the physical processes and neurological messages to the brain concerning lower abdoninal function, as well as leg and foot function. The Dr. thinks his leg function is good, but foot functions like pointing toes, flexing the foot, etc, seem to be inhibited. The brain may not be able to receive signals to do those kinds of functions since those parts of the spine are damaged and can't send the messages to the brain. I may have botched some of this scientific info, but this is how we interpreted what the Dr said. 

Practical explanation: In a few months they will do surgery to release Mr. Boy's spinal cord which is tethered down in order to keep it from causing more damage as he grows. They will continue to watch his spine for scoliosis yearly and do surgery as needed. Mr. Boy will most likely have to wear braces on his legs the rest of his life in order to walk. 

We are thankful we were referred to this hospital because they really know what to do with Mr. Boy and how to explain it all to us thoroughly. They have seen kids like Mr. Boy and spinal problems like this many times before and so its not shocking for them or difficult to handle, so we feel like we are in good hands. 

Taking matters into his own hands

Sunday morning at 5:30am, I walked into Mr. Boy's room to find the crime scene:
Notice Mr. Boy's feeding tube with the tape still attached and all, laying next to him.
Mr. Boy thinks he is quite clever to have freed himself from his feeding tube.

Because Mr. Boy is supposed to be on 24-hour feeds, we had to go to the ER right away so they could put it back in using a live x-ray.

After the tube was replaced.

A house for Mr. Boy

We've been pretty busy this past week, but for the first time it's not because of Mr. Boy's  medical stuff.  We've been busy buying a house! And my sister Holly has been here visiting from LA, so its been packed with exciting endeavors. We took Mr. Boy to church, the grocery store and the mall... all for the first time! Mr. Boy stays happy as long as we're in motion and there are new things to look at from his stroller. :)
We can't wait to move into our first house, the first week in July. The Lord placed this house before us and made it possible to afford the house, so we cant wait to have a bigger place for Mr. Boy to play and grow!

Holly pushing Mr. Boy through McKennan Park

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