Monday, May 31, 2010

It Was a Busy Week.

We had an appointment everyday last week. First was the GI doctor which I posted about already. Tuesday Nicholas had his usual Speech and PT. He did well with both. He was a little crabby during speech but I think it is because it is at 8am and he is just getting up. He usually gets up and eats then takes a short nap after breakfast. Speech is right during that time so it can be hard for him. Wednesday he had an ultrasound of his gall badder to check on the gallstone. He still has it and it is the same size. It looked like a little bean on the ultrasound. The GI doctor said it could take over a year for the medicine to break it down. As long as it isn't getting bigger or causing him pain it is fine. We had to cancel OT this week because of work. We felt bad but what can we do. Thursday he had his 18 month well visit with the pediatrician. She is very pleased with him. He gained a pound and grew a little since his last visit. He is back on track after loosing weight during his long hospital stay. He had to get 2 shots and started screaming when the nurse walked in with them. It was like he knew she was going to cause pain. The doctor agreed that we need to figure out was he has an allergy to and not just assume it is milk. She is going to set up allergy testing. Thank you Dr. B. We thought it was so stupid that the GI doctor is guessing at what the allergy is and said he will throw up if he is allergic to something and keep him on the expensive EleCare that he hates. It smells like rotten potatoes so I don't blame him for not wanting to drink it. She said the EleCare is great for calories and allergies but it doesn't have all the vitamins and minerals that milk or formula have. So we are keeping him on his multivitamin. She also said to test his stool to see if it floats or sinks. It if floats he could be laking Calcium. It suck so he is ok. She said to keep his car seat backwards until he can sit up on his own. He doesn't have to go back for a well visit until he is two but she want us to bring him in for weight checks once a month. On Friday he had an appointment with the Theratogs guy. The vest part has gotten too short and is like a belly shirt on him. He was very happy with Nick's progress using the Theratogs. The leg part fits him fine and the vest going around him fits so he added a piece so the vest will attach to the leg part again. He also gave us some new straps since ours were wearing out.

Monday, May 24, 2010

Busy Week

Last week was pretty slow. Nicholas has EI, speech, PT and OT. They all come to our house so they are easy appointments since we don't have to run around places. He did well.

We have a busy week ahead of us. Today he had an appointment with the GI doctor. He was actually seen by the nurse practitioner. They are keeping him on EleCare which he won't drink. We brought that up and she told us to increase the calories to 30 an ounce. That is what we were making it so she either didn't read the chart or that wasn't in it. So that got us nowhere with him not wanting to drink. They think he has a milk allergy but won't do allergy testing. He never had any problems with his formula but they found the EE, but how can they be sure it is milk without testing? He never threw up the formula so he wasn't showing signs of a milk allergy. We are weaning the Carafate by one dose every 5 days. If he does well without that we will wean the Prevacid. He gained a pound in the two months since his last visit but didn't grow in length.

He has Early Intervention tonight. Tomorrow is speech and PT. Wednesday we have to cancel OT because of work conflicts. He has an ultrasound of his gallbladder and liver Wednesday morning. Not sure why they are looking at his liver but they will check on his gallstone. Thursday he has his 18 month well visit at the pediatrician. Hopefully she can help us with the not wanting to drink and maybe allergy testing. Friday he has an appointment with the Theratogs guy. The vest part has turned into a belly shirt (But he isn't growing?) and some of the straps have worn out.

Thursday, May 20, 2010

Monday, May 17, 2010

Swallow Study

Nicholas had his swallow study last Thursday. They put him in a feeder seat, same as the blue chair we borrowed during his hospital stay. First Mark fed him a bottle with marshmallow flavored Barium in it. He drank it and had no aspirations or reflux. Then they mixed up the Barium into a baby food consistency. He ate it and actually seemed to enjoy it because he did his dinner dance. They found no problems with his swallow with this either. They did see that he has a high palette and the food gets stuck up there. He gets it out with his tongue or by sucking his thumb. The high palette is from being on the ventilator for so long. They do the study by having a machine set up next to him and it takes x-rays while he is eating and the Barium is visible on the x-ray so they can see it traveling from his mouth down.

He had his usual PT and Speech last week. Nothing new with those. OT and EI were canceled. We have a slow week this week. Just EI and therapy.

Monday, May 10, 2010

Cochlear Implant Pre-Op

Last week Nicholas had is usual PT, OT, and Speech. He did well in all three. On Thursday we went to MUSC for his Pre-Op appointment. First we met with the audiologist to do a sound booth test with his hearing aids in. He didn't respond to any of the sounds. Then we met with the doctor. He seemed hesitant to go ahead with the surgery next month. He was worried that since Nicholas' shunts had to be moved to the other side of his head they might have to be moved again. The implant goes in the same place as the shunt tubing so that would cause a problem. He said we could wait 6 months and see how the shunts are but he agreed to do the surgery next month. He also warned us of the risk of meningitis from the surgery. There is CSF in the inner ear so if he gets an infection there it could travel to his shunts and cause a shunt infection. Then his shunts would have to be removed until the infection is gone. He said he has a few other patients with shunts and they haven't had any problems. He also said that it is being optimistic saying Nicholas has a 50% chance of having a successful outcome with the implant. Nicholas has to learn to listen and respond so he has to have the cognitive ability to do that. I felt like he was thinking Nicholas might have mental retardation and that would be why it wouldn't work. He isn't showing any signs of mental retardation and we feel that he will benefit from the implant. Surgery is scheduled for June 9. The audiologist will turn the implant on 3-4 weeks after surgery and do the first round of mapping. The implant he is getting is the Nucleus 5.

Grandma Terri and Grandpa Stan we down for a short visit this weekend. Aunt Jacy graduated from Appalachian State so they were here for a few days and in Boone, NC for a few days. It was a nice visit. Grandma Matthews came over yesterday for Mother's Day.

Monday, May 3, 2010

Almost went to the Hospital

Nicholas woke up around 5 am on Sunday vomiting. He wasn't acting like he was in pain when he has a shunt malfunction so we didn't know what to think. He kept vomiting until about 8 and wouldn't eat. He was happy and laughing but throwing up. We decided to go to the ER and get a scan done, but I tried feeding him right before we were going to leave and he drank his bottle and kept it down. So we didn't go to the ER and decided to see how he was the rest of the day. He ate ok and didn't have any vomiting. We are thinking that he had a food allergy reaction. He had 4 containers of food on Saturday that had mangoes in them. He has spit up after eating peaches too so we are going to avoid all pitted fruits. We also used a different brand of rice cereal on Sat. This one had sunflower oil in it compared to soybean oil in the other brand. So we pitched the new brand and got more of the old just in case it was the sunflower oil. He has been happy and eating so we hope whatever was going on is gone.

Nicholas did really we with his therapies last week. His OT brings an exercise ball for him and lays him on his stomach on it. It really works his neck and trunk muscles because if he wants to see something he really has to lift his head up since it in lower than the rest of his body on the ball. She is also looking into getting him a brace for his left arm. He doesn't use that arm much and keeps his hand in a fist. He would wear the brace at night to keep his hand open. She is also going to try to get a Big Mack Switch for him to try. It is a big button that attaches to a toy and he touches the button to make something happen. She said the company usually will let patients test the products before buying them so she is going to see if we can get one to try.
He had an appointment with the Pulmonologist, lung doctor, on Thursday. He took him off of FloVent. His lungs sound great and he isn't on any meds for them anymore. He is still on the FloVent for the GI doctor so we still have to give it to him. FloVent, which is an inhaled steroid, is supposed to help heal his esophagus.