Well this week did not give us any more answers, however, we feel we are closer to understanding what the future could hold for us. Our blood panels came back negative for everything, and the nuerologist feels we have exhausted the possibility of anything metabolic, so we will not be going down that road any longer. She was able to provide us with a little more information about our specific brain damage... that it is the basal ganglia that is damaged. Knowing this will still not give us any diagnosis as of yet, but the 'abnormalities' we see with Braden include a 'dancing' relfex of the feet, the tightness and incredible strength of his pectoral muscles as he turns his wrists inward when upset, the overextension of the neck towards the butt when upset, and that he is still not lifiting his head when leading with the arms (unless he is upset & tense). We know that all these things are not normal, and the nuerologist wants to see us back when Braden is 5 months old to re-evaluate his situation, to see if we have made further progress. We, as parents, appreciate that she never tries to give us false hope about his future, but continues to give us a real picture that things are not normal, and may never be. This does not mean we should not remain positive and hopeful that he can continue to make progress as some issues have subsided, and there are many things that keep us on the side of hope... the stronger swallow reflex, the loss of jumpiness in response to patting, the further relaxation of extremities, and the fact that he is now able to track faces and objects with his eyes.
The pediatrician visit told us that he is now 11 lbs 9 oz and 23 1/4 inches long. While we had much concern just a few weeks ago about his ability to gain weight and gain growth in head circumference, we are now more hopeful that the new feeding plan is helping to 'catch him up'. He did catch a little cold, and is trying to cough - we were checked for bronchitis to be safe, doc says we are fine.
After our visit with the doctors, I started researching what exactly damage to the basal ganglia could mean... and if you do research, you will find information on fetal alcohol syndrome, Huntington's disease, Parkinson's disease, and cerebral palsy. Everything I have read leads me to believe that we will have an eventual diagnosis of cerebral palsy. Please know that NO doctor has even uttered such words... we have discusses all such symptoms of CP, but nobody is ready to make any diagnosis. When I discussed my questions about his progress with his physical therapist... she says she was not ready to make a diagnosis yet, but seemed to concur that it could possibly be CP. CP is an umbrella term that ranges greatly from mild to severe... and if his current situation is any indication, we will be on the mild side. Here is a link I found about a similar situation if you wish to check it out: www.bio.net/bionet/mm/neur-sci/1998-November/034920.html or you can try http://www.bio.net/bionet/mm/neur-sci/1998-November/034920.html if the first one does not work - it is the same thing.
We continue to pray for his growth and development. I am busy training the daycare lady - Braden will be one of five or one of six, as one is a part-timer. He is the youngest, there is a one-year old, and three two-year olds. He will be kept separate from them most of the time, unless under direct supervision to keep him safe. We hope to have her confident about feeding him by next Monday... we are going twice a day for a feeding to get her comfortable, and I will be returning to work next Tuesday. I will still take Braden to therapy once a week, and once my flex-time has been used, Brad & I will trade off on taking him. The home health nurse has agreed to do the rest of her visits to Braden at his caregivers home, which is an extra feeling of reasurrance.
Thank you to everyone who keeps checking in on him and sharing your comments and well-wishes, we certainly appreciate it. It means a lot to us that so many people care about him, and it helps keep us going knowing that so many of you are praying for all of us. God has truly blessed us, and we are so thankful that He has surrounded us with so many caring and loving people. We wish we could do more than just share our thanks... you are all also in our hearts and prayers.
Kodi, Brad, & Braden