A little explanation

I have had quite a few complaints about my bloggy hiatus.  I decided this was what was best for me and my family.  I hurt feelings in my "Yesterday" post.  That's not the intention of my blog or me as a person.  So, I have decided to cut out all of the random ramblings of everyday life in this blog and stick with the more important things.

Today was a big day in our house.  Many days with appointments are.  Today, Tammy, the Birth to 3 program coordinator came with our OT, Jessica.  Jessica would like to start visiting Rylee twice a month rather than once.  She will come weeks opposite of Marcy, PT, because their therapies overlap quite a bit right now.  Tammy has decided to come with Krisann, Speech therapist, in her July appointment.  Krisann does therapy here once a month.  However, now we need feeding therapy 2 to 4 times per month as suggested by the Speech Pathologist who did Rylee's swallow study.  I think they will decide to have Krisann come once a week instead of once a month.  At this point in time, that is how we need her.   That means our visits double each month.

Tammy also talked with us about Rylee's feedings.  She was appalled at the cost of the feedings.  She is getting a bunch of our paperwork for some county/state programs to help cover the extreme cost of feeding Rylee.  Rylee's feedings consist of:

4 oz Pediasure
2 scoops of Duocal
1 (1.1 oz) packet of Simply Thick (honey consistency)

We do this 6 times a day.  She gets this cocktail every 3 hours.  Her first bottle and last bottle of the day, we also add 4 mL of Pantoprazole for acid reflux.  There is definitely some time involved in making her feedings.  She tires and fills easily.  This cocktail ends up being about 5.5 oz after everything is added.  The Simply Thick dilutes the Pediasure therefore that is why instead of 1 scoop of Duocal we are now adding 2.  That means we use double the Duocal!  The daily cost to feed Rylee breaks down to:

3 bottles of PediaSure (which is half a package) $5.50
6 packets of Simply Thick (a case consists of 100) $3.36
12 scoops of Duocal (1 can lasts a week) $3.18
Total daily cost: $12.04

Therefore, you can understand how pricey this one child is to feed.  This doesn't include cereal, baby food or snacks like puffs.  Hopefully, one of the programs will cover this added expense.  From my understanding, they will most likely cover the cost 100%.  LOVELY!  I am anxious to get that ball rolling.

Tammy and the therapists started coming to our home last August.  So in early August we are going to have another evaluation with all 3 therapists and Tammy.

Right now, we are looking forward to having the development assessment at the Waisman Center.  Our medical histories went out to the Genetics team today.  I am in the process of organizing Rylee's 1400 pages of medical records before I turn the 1 hard copy I have over to the Genetics.  (I am making copies for my own personal benefit!) In July, we have 6 days where we have nothing going on which includes 2 saturdays and 2 sundays.  There are appointments galore in July and our August is filling fast!  September will be the month of rest!  I want to enjoy this little wiggle worm growing inside of me.  And I want to be able to transition the kids to having a new little baby in our house.  Neither one seems to be overly interested in the belly.  However, Rylee has lately taken notice to the belly and hits it every chance she gets.  All in all, we are doing great around our household.  We are taking the negative and turning it positive.  Instead of dwelling on the fact that we will never have a "normal' little girl, we are going to embrace the "special" little girl we have.  I was told by a wise woman a few weeks ago that "Special children are only born to special mommies."  I am not a "normal" mommy anymore, I am a "special" mommy!  Not many moms can say that, I am a lucky one I guess.