It’s late, but maybe some of you are up and could pray for Noah.  Like we mentioned earlier, Noah has nearly stopped gaining weight even with an increase in the rate of his feeding pump.  His dietician has been out of town but I got in touch with her today.  She is very, very concerned about him.  She decided to concentrate his Neocate (formula) to a higher number of calories per ounce.  Mommy’s milk and formula are standard at 20 calories per ounce.  Noah was on 24 calorie Neocate and today we bumped it up to 26 calorie.  This wouldn’t seem to be a big deal, and makes a lot of sense for a child or adult, but it can cause a lot of problems with a baby.  He already perspires and he is now getting less water because there is more powdered formula per ounce of prepared formula.  It can cause stomach upset, which he already has, and can be hard for other organ systems to handle.  The on-call doctors have been given all of Noah’s particulars and we are to call them if he has any trouble.  Please pray that he will tolerate this well.  First, (obviously) we want him to get the calories he needs without getting sick.  Second, tomorrow is Hannah’s 14^th birthday.  Making an emergency trip to Greenville is never fun, but doing it on her special day would be even worse.  It could be difficult to tell if he is having trouble with the increase because many of the symptoms of trouble are things he does all of the time anyway.  Ugh.  Because he is so happy and easy-going, we need to be alert for behavioral changes.  He was very fussy tonight and I actually had a hard time getting him to sleep, but he is resting sweetly now and we want to see how he does in the morning.

We had a meeting with his new Early Interventionist from Easter Seals.  Noah’s delays qualify him for a program called Baby Net.  His Baby Net coordinator’s job is to help us line up the services that Noah needs, handle insurance billing, do developmental assessments, etc.  One service he will receive is early intervention.  This is in home for one hour per week and consists of assessment and time working on developing any of his weak areas.  He is also going to start physical therapy and occupational therapy.  He needs feeding therapy which is often provided by a speech therapist, but this occupational therapist is trained in feeding therapy.   One big concern about therapy, even in our home, is that Noah sleeps all of the time and has no schedule.  His p.t. and o.t would typically be done for an hour each per week, but because he is considered medically fragile, his Baby Net coordinator is trying to get both of those therapists here for the same hour together once a week.  This is only done for very sick babies but it can be very effective.  It will also reduce the number of appointments I have to deal with for him – instead of an hour each of physical, speech, and occupational therapy we will only have the one combined hour.  Please pray that this works out.  There is only one pediatric p.t./o.t. team that does the combined therapy and we don’t know yet if they are taking new clients.

During the meeting we got the results of Noah’s recent developmental assessment.  He has a gross motor delay of 59%, which didn’t surprise us.  We were surprised that he is also delayed 25% in social/emotional, 30% delay in fine motor, and a 33% delay in receptive communication, which is his ability to understand communication.  This doesn’t really change anything about Noah, but it did really surprise us a lot.  I have often said that he is behind on his gross motor but excelling everywhere else.  I just need to remember that the numbers aren’t the problem – Noah’s illness is the problem and this assessment is just giving us the facts we need to help this sweetie pie thrive and have the best life he can have.

I am up WAY past my bedtime, but I can’t end without sharing a very special blessing.  Before we moved to S.C., Jeff was a pastor in Massachusetts.  (Hence all of the Red Sox propaganda on this blog.  I am a Cubs fan personally.  More about THAT another time.)  His sister Julie got married to a great guy 12 years ago and Jeff had the privilege of performing the wedding ceremony.  Julie and John and their two sweet boys still live in Plymouth but are here for a visit.  They decided to renew their vows while they were here, so this evening we had the most lovely little ceremony in a beautiful park near our house.  I missed the actual wedding 12 years ago and really enjoyed seeing Jeff performing the renewal ceremony tonight.  He is such a great speaker!  It was romantic and precious and all of our children and their children were involved in the ceremony.  On the 20^th of this month Jeff and I will celebrate our 16^th anniversary and I was SO encouraged tonight thinking about the legacy that Jeff and I and Julie and John have in these 9 incredible children, and the utter joy that we have in being married to our very best friend.  How much more blessed could I be??

Love,

Kate and Jeff and the children

P.S.  Jeff and I wrote sort of a "catch up" post earlier today, and included a slide show with pictures of us and all of the children.  If you missed the post, but want to read it or see the slide show, just scroll down - it is the post below this one.