I've come to the conclusion that baby K has way too many doctors. At this point some of them are all running together and over lapping each other. One doctor will say one thing, and the other says not to do that one thing. I don't know who to listen to anymore. I am helplessly confused at times. Baby K met with his geneticist last Friday, it went alright I guess. After the appointment we were in the waiting area getting ready to leave and this lady came out of some room and asked excitedly if I was Erin. I said yes and she introduced herself as Cathy. Cathy is a lady I had been talking to on the phone recently to set up Kaleb's developmental assessment at the NICU follow up clinic. Why is she at the geneticist's office? Monday came around and we went to the NICU follow up clinic for his developmental assessment. We met with Cathy who took us back to a room and we met Lisa, occupational therapist. She said that there was a physical therapist, ARNP, and our geneticist who would all be with us during this evaluation. Why was my geneticist coming here? Apparently my geneticist just started up the NICU follow up clinic. This entire meeting was extremely confusing and aggravating. There were four professionals in the room with us and they were all talking at the same time to us. The PT was trying to teach me infant massage while my geneticist is telling me about something else, and then the ARNP is asking me medical questions about my son...you have all of his charts...READ them. I told the PT that Kaleb was already in PT, she asked with who and I told her the name of his therapist. She continues to tell me how she works with his therapist and will talk to her about this assessment later on. So why am I here again if you are associated with the PT we are already doing?? Kaleb cries a lot...well maybe not a lot...maybe more like ALL OF THE TIME. So of course once they started messing with him he became upset. At the end of the assessment I asked how I could get a copy of their report, no one knew. Then the PT asked if I wanted her to go over their assessment with us...ugh don't you think that would be important? So instead of going over the actual assessment she just tells us that my son is only working on a level consistent with a 16-20 day old infant, when he is really 7 weeks old. How did you come to that conclusion? Seriously? They told me not to worry because when a baby is fussy they don't score very well. So then why are you assessing him?
Other than a whole big mess of confusion Kaleb got his blood test for Pompe's disease on Monday. Our geneticist told us the results should be in within 7 days and to call our genetic counselor for the results, they can't call us when they get those VERY IMPORTANT results? Whatever.
Can you tell I'm being cynical?
On Tuesday we met with our counselor, I cannot stand counseling. But I must say this lady is amazing, I absolutely adore her. It's less like counseling and more like a family member. She has children with special needs which is why we were paired with her. It's SO nice to talk to someone face to face that has been through such similar experiences with two of her own children. Her insight is that of a parent who has been through scary surgeries, unknowns, and being around friends and family who do not understand. She has great tips and talks to us about her experience. I hate those counseling sessions where all the counselor says is "I hear you saying that hurt you"..."how does that make you feel?". Ugh, puke. I look forward to seeing her every week, so glad I went through with the counseling.
On Wednesday we went to see Kaleb's neuro-surgeon. He basically said that Kaleb's head is REALLY flat, actually his head is flatter than 90% of children. That's just great. But you know what is EVEN better?? Apparently most insurances do not cover helmets, and therefore parents normally have to pay $2000 for the treatment. (update: it looks like Dennis' insurance may actually pay for this treatment). I really liked our neuro-surgeon. He is from Dallas and graduated from UT and is extremely nice. He actually sent us an email from his personal email with an attachment of his note and assessment of Kaleb that went into the chart. What a great idea, more doctors should do this. It would definitely help parents that really need all medical records for their kids due to their kids having so many specialists. Anyways, more than likely Kaleb will not see him again and we need to decide by 6 months of age if we want to do the helmet, if so we contact a guy that our doctor works with to do the molding and follow up appointments.
Next week Kaleb has his OT evaluation and then I go back to work on Friday. Oh and we just found out today that a spot came open for Kaleb at UCP (special needs school). We were not going to be able to get Kaleb in there until June but one of the infants left the program so he can start next week when I go back to work, hooray! Kaleb can get all of his therapies there and they have experience with children with special needs and medical issues.
I've got to get off of here and get to bed. Kaleb is finally sleeping, which is very rare for him. I've gotten very few hours of sleep in the past 48 hours, Kaleb has come to the realization that he just does not want to sleep if we are not holding him. He has also been screaming in pain again and we cannot figure out what the problem is. Thank goodness for all of Dennis' help this week. I would have gone mad if he wouldn't have helped out so much!