Renewed Hope

At our latest GI visit we found that Mr. Boy is now 15 lbs and in the 25th percentile for his weight if we go by his due date (not birthdate). They are very pleased with his growth. However, one thing we have not spoken of much has been the fact that Mr. Boy still vomits about 5-8 times a day... for the past 3 months straight. I shouldn't say vomit, because no food comes up since there is no food in his tummy ever (since it goes through the tube straight to his intestines) but after fits of screaming, gaging, wretching, and heaving either nothing comes up or lots of mucus projects out. Its not very pleasant for anyone. :( Mr. Boy has been doing this for a long time and it seems like a weird thing for a parent not to insist upon fixing sooner when their child has been vomiting 8 times a day for 3 months, but it never seemed that bad until now. It just blended into the background of a host of difficult things that were going on with our son and quite honestly it seemed minor in comparison to other things. Mr. Boy screamed and cried all the waking moments of his life, so wether he was gaging or just screaming, it was all horrrible and the gaging just seemed to "fit in" with it all. So every time in the blog that we mentioned that Mr. Boy had a really good week, it was all relative because this was always still going on in the background. This past week he has been a wonderfully happy, silly, adorable little boy every waking moment except the moments during or building up to vomiting, which adds up to about half of every day.  So now we can see a sharp difference between our happy boy and this incessant sickness of some sort. We've mentioned it to the doctors every single visit for these 3 months, but they keep ignoring it hoping it will go away, as do we. But we are now seeing this as the major thing keeping Mr. Boy from full happiness and growth during these infant days. He will be late developing physically in most areas because of his body structure, but we don't want him held back anymore from developing by the fact that he spends half the day fussy. He can't get better at head control or work on sitting up if he keeps needing to cry and be snuggled due to pain. So now we are on a diligent quest to find the root cause of this. We have the pediatrician and GI specialist on the case and are going to try several different methods to make this go away. They've finally agreed to do something. We'll keep you posted if something works!

Hard at work

All moved in

Last weekend we had an army of family and friends help us paint and move into our first home! We couldn't be more blessed to be surrounded my so many loving people and in such a wonderful home. My parents came from their home in Florida and stayed all week helping us move in and get settled by watching Mr. Boy,  cleaning, hauling, painting and by hanging pictures on the walls like seasoned decorating pros. It was sad to see them leave this morning. In one week every box has been unpacked and every room painted and decorated.  It was a whirlwind miracle.
Mr. Boy has grown leaps and bounds. Every day he does something new and adorable and we realize just how far he's come. He has yet to be able to hold his head for long periods, sit up, roll onto his side or tummy or eat anything orally, but we know he will get there eventually... even though it will take much longer than most. When you have a premature baby, you don't measure milestones based on their birthdate, but on their proposed due date. When Mr Boy was born 2.5 months early, he behaved like he was still in the womb and still needed to develop as such. It wasn't till 2.5 months later that he could function like a newborn baby. So we went through almost six months worth of the usual "first tough 3 months" of a baby's life before you start being "rewarded" so to speak, with smiles and coos and playfulness. Watching him actually play is such a new thing for us and a huge source of joy.

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