Friday, June 30, 2006
Well, we spent our two month birthday taking TWO trips to the Emergency Room at the Children's Hospital. Braden, a very strong boy, managed to pull his feeding tube out this past Saturday. Mom went into panic-mode, but Daddy helped us get our emergency kit, and we managed to get the mostly deflated tube back in where it goes, and the doctors and nurses gave us many compliments on the job we did. They put in a new tube, but inflated it with air instead of water, even though we asked about it. The next morning, his mickey tube practically popped out on its own... and it was back to the ER for a Sunday morning birthday present. Mommy was reading the manual that comes with the tube, and it says everywhere NOT to inflate it with air, but use saline or sterile water. So this time, she made sure they put water in it... I have been through enough.
Things have been good since, and Nanna Debby and Grandpa Richard are coming to see me. I have more to post on their visit tomorrow. We are still waiting for the results of our panel to come back, so keep praying that we have good news. In the past, when it comes to specialists, usually no news is good news, so for now we will hold on to that. We will write again soon, thanks for checking my blog!!
Braden Mark Wilson
Thursday, June 22, 2006
Yesterday at the pediatrician, we found out that we are 10 lbs!! While we are making progress, we dropped another percentile group... but Mommy feels like now that we are DEMAND feeding and not schedule feeding, we will soon catch up, as I expend a LOT of energy and even work up a sweat several times a day. No surprise, as I was VERY active in the womb as well. I got two more immunizations too.
We had to go get another blood panel done - Mommy spent two hours at the lab on the phone with the nurses and eventually made them talk to each other in person, to ensure we would not be repeating a test that she feels we have already done. The test we recently did was a Complete Metabolic Panel that came back normal. This test they call a Neonatal Newborn Fullscreen, which tests about 100 things, as the regular newborn PKU screen only tests for like five things that came back OK while we were in the hospital.
We also had our first photo shoot today for a collage they call "precious parts", and we will post the link on the blog for everyone to check out when they are ready. We are ready for Nana Debby and Grandpa Richard to come visit - we will have some fun things to post next week while they are here. They will be learning how to take care of me, so Mommy can work a few half days next week. We will celebrate Mommy & Daddy's SIXTH year anniversary next Saturday, and we are glad it will be a family celebration.
Keep praying for us as we await the results of our blood panel, while we hope that we don't find anything wrong, we are also hoping for some answers.
Love to all,
Braden, Brad, & Kodi
Tuesday, June 20, 2006
Today we are 8 weeks old, and have a few updates to share. First the depressing news... the neurologist called today, and although our first metabolic panel came back OK, the lab forgot to do a second part of it, so unfortunately, we have to go back AGAIN for them to take more blood. The doctor feels awful about it, but they are trying their best to get us some answers, and they feel it's best to do another round of testing.
We saw the surgeon last week, who sent us for the Upper G.I. yesterday - and the results showed that Braden's nissen fundiplication surgery is holding successfully, and doing what it is supposed to do. We also saw the ENT yesterday, who was unable to give us much of anything, but did give us a little hope. She said that although Braden has this paralyzed vocal cord, based on how loud he is (who would have guessed), that it is probable that if it remains paralyzed, the other vocal cord will get stronger to compensate for it... or it could possibly come out of it's temporary paralyzed state. Worst case, there are surgeries that could happen as an adult, but that was not a normal scenario. So we go back in 3 months, and at that time, the doctor will be able to tell us if it is temporary or permanent, as he will have grown enough to give us those answers.
Today we go for our first home care provider visit, wish us luck as we try to locate the best possible care for Braden while mommy goes back to work - someone who can give him the extra special attention he needs to make his parents feel more at ease about leaving him with someone else.
Tomorrow we go for our first professional photo shoot - YEAH!! We go back to the pediatrician tomorrow too, we are hoping to have gained some weight. Now that we finally have our hunger under better control, Braden is in a much better temerament more often, and we hope the doctor lets us keep increasing our feedings, as Braden has been a MUCH happier camper lately!! We will update the blog again once we know something more about our bloodwork. As last posted, we got to take our first 'real bath', so I have posted some pictures to share - enjoy!
Friday, June 16, 2006
Well, we made 7 weeks this week, and we had lots going on. The first good news, was that our bloodwork came back from the extended metabolic panel that the nuerologists sent us to get, and it all came back normal - yeah! Then we met with our surgeon, who decided we should get an upper G.I. next Monday, since we are still having some acid reflux, in spite of the surgery... so this will tell us if everything is working OK like it should. So we will know about those results in about 2 weeks. We got the OK to take a real bath, and swim if we want to. We hit a milestone this week... Braden smiled at mommy TWICE in one day - a smile that was not coerced by tickling:-) It was so cool!! We look forward to our first father's day together as a family, and will have more to share next week. We go for our first visit to the ENT (ear, nose, & throat) to visit with the doc about our paralyzed vocal cord, on Monday. Looks like Monday will be a big day for us, so please continue to keep us all in your prayers. Braden is decked out in his LSU gear, tiger and all, we hope you enjoy this pic!
Kodi, Brad & Braden
Kodi, Brad & Braden
Saturday, June 10, 2006
Well, this week our neurologist sent us to get yet more tests... they still are concerned about a metabolic disorder, so they have sent us to get a more extensive blood panel done, that focuses on metabolic issues... something more specific than the panel that was sent to the Mayo Clinic. We won't know anything until this coming Friday, we hope. Our neurologist has pulled in her partner on our case, so now we have the two best pediatric neuros in Baton Rouge in tandem on our case. Mommy goes to see her doctor for a check-up this coming week, and our usual weekly appointments with the pediatrician, home health nurse, and occupational therapist. We have gone up in our feedings, so we hope to have gained some significant weight by this coming Wednesday. We go see the surgeon as follow-up on our surgeries this week too, so we will have many updates to share.
Braden is still fussing and throwing a fit for most of his waking hours... none of our doctors can seem to pinpoint what is going on and why. We get about 20 minutes of "sweet time" in the morning, and he was nice to mommy on our evening walk tonight, so that is the picture we shared... he seems to like our walks. He did give mommy "big eyes" and a non-crying spell for about 30 minutes tonight while on our walk and post-walk.
Hope everyone enjoys their weekend!!
Kodi, Brad, & Baby Bee
Sunday, June 04, 2006
Well, we had a rough week. Braden was out of sorts for a few days, of course starting the day after our pediatrician visit, so we headed back on Friday. The pediatrician put Braden on some Zantac for his reflux, which has seemed to help the intensity of the pain he was experiencing. Then it was off the neurologist for our 6 week visit, and she sent us down for another MRI. We got the news that no parent ever anticipates getting... that your child has brain damage. All the doctors are convinced that he suffered "cortical atrophy" the last week of pregnancy. They said it was nothing I could have done, but that we dodged a bullet, in that in lots of cases where this happens, the baby does not survive at all, and is stillborn. Somehow Braden fought his way out of it to ultimately survive, but we don't know yet at what cost. We are certain he will be slow to develop, but are not sure yet what areas have been affected... his brain was fully formed normal, but is not growing like it needs to be. My own hunch is that we will have some motor skills that will come slower, but only time may tell about speech and cognative functions as well. Our own neurologist suggested we get a second opinion, and we plan on doing that sometime after the 3 or 6 month mark, when we know better what milestones we are missing. At this stage, we feel like it is still too early to spend the time/money/emotions/energy on that just yet, as the probability of a diagnosis at this point is still very small.
We have made progresses in some areas like sucking and muscles, but still lack some muscle tone in a few areas and can't lift our head. We are hoping the Occupational Therapist can give us exercises to work on those things, and the neurologist may send us for yet another more specific metabolic panel to rule out disorders. We go back to her in 6 weeks.
Keep us in your prayers, we continue to enjoy every new day with our precious baby boy, and pray to find the understanding in the lessons God has in store for all of us. Some of our favorite time together is post-bath time, when he is very lucid and sweet and SOOOO relaxed, so I have shared a post-bath photo with you. You can see the scars from his surgery and his feeding "button" too. Hope you enjoy,
Mommy, Daddy B, and Baby Bee