Steps Forward

Lots to report... I hope I remember it all!

1. We met with a service coordinator from the State of Alabama's Early Intervention (EI) program on Monday night.  She was great and provided us with lots of good information about the services available to us with Noah's diagnosis.  Perhaps the best news she told us was that Noah has a spot in the Rise School beginning in August!!  We will receive home services until then, which may include physical therapy, occupational therapy, help from a nutritionist, etc.  She also told us about a state program that will help us coordinate Noah's medical care with the help of a social worker.  The EI program is funded through the state of Alabama and the federal government, so expenses that are not covered by our insurance will be paid for by the program itself.  Needless to say, this is a relief.

2.  We met with our new pediatric neurologist, Dr. Percy, yesterday morning as well as the nutritionist he partners with.  This was a VERY informative appointment!  

-Noah has finally gained weight!  He weighed 14 lbs 12 oz yesterday... which is a 12 oz gain since the last time he was weighed 2 weeks ago!!  This was great news as Noah has not gained weight since his 4 month appointment (he is almost 7 months now) and reaffirms our decision to get the g-tube and switch formulas.  

-Dr. Percy was impressed with Noah's neurological development... he felt like Noah's fine motor skills were excellent and that he is alert and observant.  Noah's main developmental delay at this point seems to be in gross motor skills... i.e. rolling over, sitting up, using his arms for balance, etc.  These skills will be a focus of his therapy and certainly a prayer request to all of you are are interceding for our little guy!  

-Dr. Percy also shared with us that the search for the leukodystrophy (LD) affecting Noah has narrowed.  Test results have shown that Noah does not have 3 of the more common leukodystrophies (Krabbe's, ALD, peroxisomal).  There are two additional LDs that we are waiting for test results on and these seem to be more likely candidates as they display a slower progression of the disease.

-The nutritionist is going to connect us with a new GI doctor and a surgical nurse that will help us care for Noah's g-tube button and tackle any additional digestive system issues that may arise.  She is also going to coordinate with a dietician in Tuscaloosa for us so that we have a local resource for Noah's feeding issues.

-Dr. Percy is going to try to pull some strings with a pediatrician in Tuscaloosa... which is much needed as I continue to hit brick walls in this department.

3.  My mom arrived yesterday and will be here until Monday!  Hooray!  Josh leaves town on Thursday for a recruiting trip to Indianapolis, so I am very thankful for the company and the extra set of hands.  Anyone want to come next week while Josh is in Baltimore?? =)