GI Pardon!

On Wednesday Nathan had a neurology appointment-nothing new. Dr. Sapin recommended that he return in nine months. She was not happy that he has gained only three pounds in the year since she has seen him. He weighed 19 pounds even on Wednesday with clothes. His head circumference is still trucking along in the 25% so that is good news. He was 30 inches tall.

On Thursday Mark took Nathan to the GI appt. He received a pardon from the GI doctor and they are giving him one more month to gain some weight before considering an NG tube. He weighed 19 pounds at the appt (without clothes) and was 31 inches tall (a whole inch overnight!). They increased his prevacid and kept everything else the same. Maybe putting off the inevitable, but hopefully it won't be necessary.

Today I took Nathan to his dentist appointment. It took them a whole 30 seconds to brush those two teeth! They took x-rays and said that he has teeth on the top and bottom that are close to coming in. The ones on the bottom look like they are coming in kind of askew, but the dentist, Dr. Yarnell said we will wait and see what happens. They said the delay can be caused by the small jaw from slow development and weight gain. anyway, three weekends in one week is tough for poor Nathan so I am glad it is over. I spent much of my early childhood at the doctors so I hate that he has to do the same.

Anyway on another positive note, I met a woman at Bounce U today with a 21 month old daughter and she weighed 21 pounds! Nathan was actually quite a bit taller than her too! I rationalized that if we are still adjusting his age, he is really between 21-22 months and so basically the same age. I was encouraged by that!

i think i need to call Livia tomorrow and find out if there is any new information. just to let her know too that we are still out here struggling. maybe she is working on her wedding plans and needs a reminder about nathan. not sure if we need to tell someone that nathan's fingers are getting worse, more clubbed and some of he nails are actually bent inward. but who do we tell? who is following him? no one knows what he has, so what can they tell us? here we are drifting along, waiting to see what nathan becomes, what new symptoms he exhibits etc. we have a neurology appt on wednesday afternoon that we forgot about, so make that three days of appts for nathan. i hate the appts and discussing all of his symptoms. i like being in denial. i am wondering about the times when i do feel better about nathan. are they just times i am pretending he is normal or hoping for a miracle? or am I actually moving towards acceptence? I don't think I am. I wish I could push a button and fast forward to acceptance and to being happy. Or better yet a button to push and make nathan miraculously normal and healthy and no more trips to CHOP. too watch Nathan and Libby play without all this constantly on my mind, not even in the back of my mind-in the front of my mind. sometimes when i talk to people i wonder what it must be like to have two healthy kids. I imagine that these bricks would be off my shoulders and i would be alot more lighthearted and fun. I wouldn't go to bed with this lump in my throat thinking that if I pray extra hard tonight, God will bring us a miracle. i'm sure i would still have things to complain about though so maybe it wouldn't all be roses. I have prayed for acceptance but of course it is not coming as speedily as I think it should.

depressed again

well, i know this blog has become more about me than nathan, but i had to write that i am depressed again. mostly about nathan's appearance. it seems to be becoming more noticeable, to me anyway. i just wish he was normal. libby had two birthday parties yesterday and the whole time i spent wondering what people were thinking of nathan, or if they had been "warned" nathan is cute now, but what happens when he is an adult and his "dysmorphic" features are not so cute? what happens when he is that guy at the check out at Target or Walmart and people are extra nice because he is different, don't know where to look and thank their lucky stars their kids are normal. i am so sad and tired of not knowing. i am so tired of looking at his deformed fingers and toothless smile. we thought he had teeth coming in, but i swear they retreat back up in his gums. he has had just two teeth for a year now, with nothing new. next week he has three appts, neurologist, GI and dentist-we'll see what happens.

kinda bummed

well once again i am so sorry for the lack of updates, that is if you are still with me here. Nathan did not have his GI appt last week because neither Mark or I could get off work. It is scheduled for next thursday the 19th, the day before his dentist appt. poor kid. anyway-I had thought we were out of the words in terms of age for a feeding tube; however, Janice the OT mentioned that one of her other little kids she works with just got one and she is two weeks older than Nathan. She did not know how much the little girl weighs (or wasn't telling me). Anyway, when Janice arrived last Friday for therapy she mentioned that it will be her last session with Nathan because there is not much else for her to work on with him. This was a surprise to me, but a good surprise. She did ask if he is getting speech because she finds him difficult to understand. I questioned if that could be due in part to the lack of teeth, but she did not think so. We have three appts today, PT, Teacher and the coordinator from Early Intervention, Jamie-so I will talk to her about whether she thinks he needs speech therapy. I tend to think his articulation is fine. I do wish he would start putting two words together though. Ever since I pointed out to Mark that Nathan does not put two words together, he has been trying to get him to do so. He says, Nathan-Say "Hi Libby" Nathan says either hi or Libby but never both. Mark keeps repeating it, getting a little louder each time to no avail. Once you get Mark on board, he is guarenteed to get the job done!

anyway-just bummed about Nathan's appearance, especially his fingers which seem to be getting really bad. just bummed that it has been almost one year of not knowing what in the heck is wrong with him and no end in sight-no testing we are waiting for or anything. just continuing to follow up with all the specialists and wait and see.