Roller Coaster Week

This past week was filled with ups and downs.  

UP: It started off with a great PT session.  I think it seemed great because Callie's last session of the previous week (OT) was a bust.  She was just uncomfortable (most likely reflux or constipation) and we really did not get much out of the session.  At this week's PT session, Callie was very happy and she did great.  She was rolling fluidly, sitting solidly, reaching for everything, and successfully transfered weight to one arm while reaching out and up for a toy with the other while on her tummy without tipping her head and rolling over to the side (hard to explain, but an accomplishment for her).  While on her tummy she proceeded to kick happily.  It was a good day.  

DOWN: The next day was our monthly weight check.  I was looking forward to seeing a good gain.  I had actually gone into our pediatrician's office the week before and quickly borrowed their scale to weigh her because I could not stand the suspense of waiting another week to see if she was gaining.  The week before I was thrilled to see she was up to 16lbs, 8oz.  This was a 13oz. gain in 3 weeks which was great for her!  And I was excited because we still had another week before our official weigh in.  So when we got there last week and she weighed just 16lbs, 5oz., I was disappointed.  This was still a gain of 10oz., but I was expecting more than 13.  There was no change in her length or head size.  Her pediatrician is still concerned because she is not on the growth chart and not following a curve.  After this appointment we met with the nutritionist.  She was pleased our average calories per day have increased from about 550 last month to 750 this month, but said this is not nearly enough.  She wants Callie to be getting 1000 calories per day.  This was upsetting to me because I just do not see how this is going to be possible.  I am working so hard to get every single calorie into her each day and she simply will not take in any more food or milk.  I am trying to spike everything with fat, cream, or various types of medical food supplements or powder (Benecalorie, Duocal, etc.), but since she takes such a small quantity of food (1/2 jar of baby food or a 4 oz. bottle of milk at a time), you can only add so much before the flavor or texture changes, which makes her refuse it all together.  So I felt discouraged after this appointment.  We will be back in one month for another weight check and nutrition appointment.

UP: Next we had our first therapy session with a developmental specialist.  She now comes to our home every other week to facilitate communication and cognitive development through play.  Callie seemed to like her and was very engaged and quite vocal.  Some other PMG parents have mentioned this type of therapy has been very beneficial for their children, so I am hopeful this will be a good thing for Callie.

DOWN: Then we had our first GI appointment.  We saw Dr. Benjamin Enav.  He was nice, but straightforward.  He said Callie should be getting between 900 and 1000 calories per day and her feedings should take no more than 20-30 minutes (sometimes we sit for a long time struggling to get just a 1/2 jar of baby food down).  He said I am doing the right thing by adding as many calories as possible to what she eats, but she just does not eat enough.  He said he feels it is going to be best to start tube feeding her.  I was not surprised, but not happy to hear this.  I told him we are currently weaning her off of Topamax and that I am hopeful this will make her appetite increase soon.  He agreed to give us more time to see if this is the case.  We are going to wait 6 weeks.  If she has not put on decent weight by the time we are back in 6 weeks, he will urge us to start her on a nasogastric (NG) tube.  This type of feeding tube would go in her nose, past her throat, and down into her stomach.  He said she would receive night feedings through the tube while she sleeps so that she will not have to consume as many calories during the day.  This will help her get the nourishment she needs to thrive.  The thought of her on a feeding tube makes me very sad, but I will do whatever is best for her.  In the meantime I am to make sure she takes Miralax daily to eliminate constipation from the equation.  Dr. Enav said he wants to make sure she is not uncomfortable and failing to eat as much for this reason.  We are also going to see a dietitian in his practice.  This new dietitian also comes highly recommended from Callie's feeding therapist.  I left the appointment feeling sad, but determined to work as hard as ever to get the calories into her in the upcoming weeks.  We will just have to wait and see what happens.

UP: Thankfully the week ended on an up.  A social worker and nurse came to the house to screen Callie for Medicaid.  I learned from my new special mom friends that there is a way for children with special needs in Virginia to apply for Medicaid that does not take their family's income into consideration.  Callie qualified!!  This is potentially huge.  If everything falls into place, Callie will have secondary medical insurance and will be eligible for many benefits.  I am very excited about what this could mean for her and our family.  We should know within 45 days if everything goes through.

That sums up the highs and lows of this past week.  It was a quite a ride as usual.