Well we met with the endocronologist last Wednesday. As usual, Nathan was such a well-behaved and cooperative little boy! The doctor was very nice and in addition to getting his history, she also had a hand x-ray done in order to test for bone age. Nathan's bone age is 18 months. Although we still have to figure out why his bone age is 18 months, it is good because it means that he is not as underweight as we thought and still has the potential to get bigger. So we reviewed all of the same stuff again. She also recommended some kind of testing for when he is sleeping and some hormones that are released.....I honestly don't even know what she said. I think I have to wait for the letter to get it straight in my head. Anyway, we are not going forward with any of that yet. First they did bloodwork to test for numerous things, including Celiac Disease again. That was the worst part. It took them 20 minutes of trying to suction blood out with a syringe because Nathan's blood just drips out. He was screaming bloody murder and thankfully Mark was there to hold him. I couldn't take it anymore and went out to the waiting room. Anyway, the doctor suggested that we have a follow-up appt in six months to monitor his weight etc. and then possibly go forward with the endocrine stuff. Isn't that what everyone is doing??? monitoring his weight??? Anyway, today we were supposed to have an appt with cardiology but Nathan got the stomach bug and was throwing up the whole night. So no more progress. Honestly I am lost as to where we are really in this whole process.

It seems like we need one doctor that knows all about Nathan and would help us navigate through all these different medical fields. We just keep getting bounced around and "come back in six months" and we don't even know if we are looking for something or if this is all just part of Pycno.

Where to begin..

Well, I haven't updated the blog in over a month, probably because I have been trying to be more positive and when I blog I just end up complaining about everything.

Last Wednesday we had an appt for Nathan with Neurosurgery at CHOP. Tuesday night we went to Abington Hospital to pick up the x-rays from the emergency room visit to show them to the neurosurgon. Mark took him to the appt on wednesday and said it was basically a waste of time. Dr. Sutton met with Mark in his office and Nathan didn't even get out of the stroller. He looked at the x-rays, felt Nathan's head and said we don't need to do anything-which is great news.

After that appt, Nathan had an appt with the growth and development people down at CHOP. This is where it gets shady because I don't really understand who it was with. Mark scheduled these appts and took Nathan so that we didn't have to put Libby in school or drop her off somewhere and have her feeling like we are always spending time with Nathan. (I know it seems strange but that is her perception of our two recent emergency room visits) So all the information I have is from Mark's perspective, who by the way was exhausted when he got home. He met with a nutritionist, physical therapist, doctor and someone else I think. Basically they (CHOP) is a bit puzzled as to why treatment for Nathan's failure to thrive and delay of gross motor skills has not been aggressive--feeding tube etc. Our GI dr told us that he is more laid back than CHOP and that they would have already had a feeding tube in him. So CHOP gave us a name of some GI doctors who are associated with CHOP. They also are surprised that he has not had an endoscopy. The feeding tube scares me because it seems like it would interfere with his social development, plus any kind of surgery is scary. The nutritionist also recommended flaxseed for some other type of fat that Nathan is not getting. The physical therapist was surprised that nathan's hips are still so tight and that he only gets pt once weekly. She/He (not sure which) recommended seeing an orthopedist to see if Nathan should be fitted for inserts in his shoes, because he walks on the inside of his feet.

So now tomorrow morning we have an appt in King of Prussia which is the second half of this appt I believe. At 8:45, Nathan is scheduled to have an x-ray of his hand and then the appt is 9:30AM. It is all so much. So on top of still needing to schedule his way overdue dentist appt, eye doctor follow up and the sweat test that I never scheduled, we have to schedule GI and ortho. They also recommended PT at CHOP. We have a cardiologist appt at the end of this month. Dermatology in April. It just seems so overwhelming, never ending and seems like we are just chasing our tails around and around with no answers. Every once in a while something new comes up that we think may be "the answer" and then it's not. Meanwhile Nathan just keeps getting x-rays-fortunately he is such a good boy. Anyway, Mark said and I agree that we have to space all these appts out because we have to have some kind of normalcy for ourselves and the kids. Its all alot to think about. Thank goodness I have Mark who shares the responsibility with me and takes over when I feel overwhelmed. BTW he weighed 21 pounds at the appt, with his diaper on. Still a skinny minnie!