stuck in a funk

I continue to be depressed about our situation with Nathan. I don't know what is wrong with me. He is 17 1/2 pounds which is what he weighed six weeks ago at his dr. appt. He seems to be eating alot and is definitely eating more table food, but he is still not gaining weight! We still don't have any answers either. No word from CHOP regarding our bloodwork. We have an appointment scheduled with Dr. Yan (dermatologist) for January 10th, but we had to cancel because it is Mark's year-end-close at work. He really wants to be there for the appointment, understandably. Their next available appt is 3/30 which is ridiculous. We are on a waiting list for something earlier, but have never ever been contacted for an earlier appt.

Everytime I look at Nathan I see all that is wrong with him. I see the dysmorphic facial features, the visible veins, the darkness under his eyes, his clubbed fingers etc. I think these signs are becoming more and more noticable as he gets older. I am worried that they will become more and more prominent as he gets bigger. I feel sad about that all the time, sad about not knowing what is wrong with him and what to expect in the future. Subconsciously I have this crazy notion that the people at CHOP should be working round the clock to determine what is wrong with him, like they should be as concerned as we are about his diagnosis. Anyway, I don't understand why I can't look at Nathan and see my son, instead of a baby with so much wrong with him. All I see is how different he looks and how unhealthy he looks. I have nothing to even tell people about him. People are kind enough to ask how he is doing and I don't even know what to say. Hopefully 2007 will bring us some good news. Although we know this is in God's hands and luck doesn't play a role, we will be having our pork and saurkraut tomorrow for good measure!

Nathan is getting over the RSV, but still not back to pre-stomach bug and RSV weight. I am posting pictures of Nathan eating cheerios like a big boy!
The second picture is him trying to watch tv while he is eating breakfast. I just thought he looked really cute. He has been very happy lately!
I hope everyone has a great Christmas!
My Christmas wish is that Nathan will gain weight in the new year!

RSV

Nathan has RSV. He has had a cold for several days with a cough, and I took him today as a precaution. Dr. Grover said his lungs sounded clear, but tested him just to be safe. It was positive for RSV. We have to use Albuteral in the nebulizer four times a day. This kid is very high maintenance! He is already on three other medicines twice per day add this four times per day, the poor kid has a lot going on. We have to take him back to the dr. on Friday-that makes 6 appointments again this week on the three days per week I am at home. I feel bad for libby. I told her we had physical therapy this afternoon and she said, "therapy for Nathan again??"

Oh yeah-he weighed 16 pounds 15 ounces. That is 9 ounces less than he weighed one month ago, at an appt on November 15, 2006.

need to get it together

Nothing new and exciting, Nathan is still 17 pounds, the weight is very frustrating. We keep backtracking. He is still able to wear 6-9 month clothing and he is sixteen months old!! We have to fight him to drink 5-6 ounces at a time. He is definitely eating more big people food, he especially likes Italian Wedding Soup, either homemade (thank's to my friend Susan) or Campbells-anything with the Ancini de Pepe and lots of garlic. I guess I just don't understand why he is not gaining weight.

As far as his development, we are still trying to convince him that crawling is faster. He is still scootching and favors the one side (low muscle tone on the other side). He is starting to pull himself up by first getting up on his knees. He is also signing the word, "more" and blowing kisses. We are trying to teach him to point at things to communicate. He is definitely more interactive. Today he screamed and cried as soon as we walked in the church nursery which made me feel good.

Dr. Yan (dermatologist) wants to see Nathan again. I scheduled the appointment for after Christmas so it doesn't ruin the holidays. Between appts, I often feel happy and get back to a regular routine. Then at appointments, I am reminded of all the things that are wrong with him and that he might have dwarfism or worse. Dr. Yan's office called me back to reschedule the appointment the next day because Dr. Yan would like more time with Nathan. That is never a good sign when they want to clear their schedule for your child.

Nathan's insurance again denied coverage for the RSV vaccine (Synagis). This was our third level appeal filed by our doctor. It will not be paid for and we cannot afford it. I thought they would approve it seeing as he is below 0 on the growth chart. I certainly hope he does not get that this winter. It would be a major setback for Nathan.

Anyway, back to the title of my blog entry... I feel like I need to stop wallowing and move on. Sometimes I get so sad when I look at Nathan because he looks so different from other babies and I just want him to be normal and healthy. All around the malls and stores are big fat, healthy babies. However, I need to accept that Nathan is and always will be a special needs child and we are a family that is different than other families. I need to enjoy what we have. I feel like it is an intellectual decision first and that I have to convince my heart and emotions to catch up. I don't know how to get there. I guess I need to pray whenever I am feeling like a victim. I need to learn to live in the moment, the little accomplishments and acheivements. I get so down when I think about what we don't have that I am wishing my life away and the lives of my children. The situation with Nathan seems to be here to stay, so I need to figure out a way to change my perspective and be more positive. I am starting to envy those "blessed to have a special needs child parents." I hope I get there soon, before it ruins my life.