Milk Allergy

Last week Nicholas had an appointment with the pediatric allergist. This doctor specializes in food allergies. Nicholas had skin testing done to see if we could figure out what caused the EE. They use a cartridge thing with 6 spikes in it. He had 3 of these done on his back and a few single pricks. He hated it! Well, he is allergist to cow's milk and cockroaches. I think it is really strange that they test for cockroaches. The doctor said we can give him a soy formula rather than EleCare. The EleCare is over $30 a can and it smells horrible. So we are trying Enfamil Enfagrow Soy. It is the toddler formula and the only one that doesn't come flavored. The milk based toddler formulas come in vanilla and chocolate. Not fair! This smells horrible too so we are flavoring it with strawberry syrup. The whole time he was on EleCare we were flavoring it with caramel syrup because he liked it better than strawberry. Well there is milk in the caramel syrup so he can't have that anymore. Besides the allergy doctor he had is usual therapy appointments.

On Saturday we thought he had his first cold. He had a runny and stuffy nose. He also had a low grade fever so we took him to the doctor yesterday. It was his first sick appointment. The doctor saw fluid in his ear and said we caught it right before it turned into and ear infection. He gave him some antibiotics and he is supposed to go back for a checkup next week.

Fourth of July

Nicholas and I had a full day on the 4th. We started with a BBQ at a friend's house. Then we went to the Freedom Festival at the outdoor mall. They had the parking area closed off and had tents set up with arts and crafts and other vendors. They also had bands all day long. He heard his first band play. They were called Black Bottom Muffin or Brown Bottom Biscuit- something like that. We stayed there for a couple of hours then went home so he could eat and cool off. Then we went back to the BBQ for dinner and ended the night back at the Freedom Festival for fireworks. I didn't have his CI turned on for the fireworks because I figured it would scare him and if he pulled it off and threw it I would never find it in the dark. He enjoyed the fireworks and smiled at them. He got crabby in the car on the way home. It was way past his bedtime and it took half and hour to get out of the parking lot- I was crabby about that too. Next year we are going to park in a neighborhood across the street and walk. Overall he did really good for being out of his element all day.

More about CI Activation

When we got to the audiologist's office the first thing she did was put the processor on Nicholas and run a test on the computer. He wasn't hearing anything yet but the test was stimulating his brain with different levels of sound and the computer would show where his brain responded. It was kind of the same idea as the ABR test he had last year. This told her the quietest and loudest sound his brain responded to and how to program his processor. Then she turned it on and he responded by crying. She said crying is the best response he could give because it shows there really is a difference when he has the CI on. She then tried different levels of sound to get it to where he still responded when it was turned on but didn't take long to settle down. She said she wanted him to show a response when it was turned on and we will go back in a month for reprogramming. There are four volume levels currently on the processor. We are going up in volume each week. She said that your brain gets used to a volume over time and it needs to be increased. Just like your body gets used to exercise and you have to mix it up to still see results. He also saw the doctor who just checked the incision site and said it healed very nicely. He was happy with Nicholas' response when the CI was turned on. The piece on his head is magnetic but it is still going to be a challenge to keep it on his head. If he brushes his head again something like his stroller or car seat it will fall off. He can also just pull it off his head. Another mom gave me some really good tips on how she keeps her son's on. Here is their blog. http://www.kinnickandcarver.blogspot.com/ Right now we are using toupee tape and one piece is lasting a few hours unless he is really rolling around. He seems to be getting used to it and doesn't cry as long when we turn it on. He also seems to be hearing things because he will pause and look around. He looks at his toys differently now too if they make noise.

CI Activation Video #2

Bon Jovi - Hallelujah

Play the Bon Jovi video then scroll down and start the activation video so you can hear the song in the background when you watch the activation.

Nicholas Matthews CI activation

Feet, It's What's For Dinner

Slow Week

This week was slow. Nicholas only had his three therapy appointments. Some people probably think three appointments a week is a lot but for us it is a quiet week. He is getting to be a little stinker during therapy. In PT he was crying so hard his therapist thought he might be hurting so she stopped. He got this look on his face like ha ha, I know how to make you stop. In OT he played opossum and acted like he was sleeping to get her to stop. He also decided he was bored with putting toys in a box so he pushed it away. His occupational therapist ordered him a chair that will fully support his head and it has a table top on it. This way he can play with toys sitting up and not have to concentrate on holding his head up. His ear has healed nicely. The steri strips are still stuck on him but we are going to leave them so we don't accidentally pull the incision open. Hopefully baths and holding a wet wash cloth on them will loosen up the adhesive. They stink from the dried blood. Next week is the big week- CI activation. Thursday we head down to MUSC and his cochlear implant will be tuned on.

Dream Night at the Zoo and More

The weekend before Nicholas' surgery was pretty busy. First we had to get a new car because our old 1998 Avenger wasn't worth fixing. Nicholas did really well for spending the whole day out of the house. After buying a new car we went to Dream Night at the Zoo. Dream Night is a worldwide event for chronically ill and disabled children. He must have qualified for chronically ill since he spent so long in the hospital this year. Anyways, the event is a private event just for these kids and their families. They had a Hawaiian theme and it was really nice. All the animal exhibits were open and they had some exhibits with zoo workers talking about the animals. We watched the penguin one and part of the gorilla. They had all the extra things to do like pony rides, train rides, feeding the giraffes and lorakeets, and wall climbing free of charge. They even built a beach in the middle of the playground area. There were a lot of games for the kids and hot dogs and hamburgers for dinner with a Hawaiian band. Each kid got a goody bag too. I was a really nice thing to do for these kids and I'm sure it is the only time some of them get out and are able to have fun. Nicholas stayed in the stroller but if he is invited again I'm sure he will enjoy it when he is older. The day after the zoo was the NICU graduates party. We saw some of his old nurses and one of the families we became friends with. We didn't stay long because Nicholas was crabby but it was still nice to go.

He is healing well from his surgery. We can take his sterile strips off next week or wait until they fall off. He had a bit of an upset stomach from the antibiotic for a few days but it passed and he just finished the antibiotic. A big surprise was the doctor himself called last weekend to check on him! That is a first. With all his shunt malfunctions we never had the doctor call to check on him and this doctor did. Must be why he is one of the best in the country. Cochlear implant activation day is July 1! This is the day they will turn it on and he should be able to hear. So exciting! Nicholas had speech and OT this week. We skipped PT to let him have some more time to rest and recover. We also got an appointment with the allergy doctor for July 8. This doctor specialized in food allergies so hopefully he can figure out what caused the eosinophilic esophagitis.

More About CI Surgey

The Cochlear Koala. This is what the processer will look like.

Cochlear Koala and backpack.

Feeling better.

This is without the ear cup. It looks good here but you can't see behind his ear where all the work was done.

Bleeding after surgery.

Nicholas and Daddy sleeping in the PACU.

Right after surgery and the morphine.

Right after surgery in the PACU.

We headed down to Charleston on Tuesday to stay the night since Nicholas had an early surgery. The hospital called and said we had to check in at 7am. We left our hotel at 6:30 and the pre-op nurse called to see if we were still planning on coming for the surgery. I told her yes and that a nurse called the day before and told me to be there at 7. She said we were actually supposed to be there at 6. So the day started off in a stressful rush. We checked in at 6:50 and they started the pre-op. They had to go over his medical history and access his port. The anesthesiologist talked to us and said that he would like him to stay the night for observation. We were fine with that. He has never gone home the same day as surgery so we preferred he spend the night. The doctor doing the surgery also talked to us and said that it should take about 2 hours. We said goodbye and went to the waiting room. The anesthesiologist came out and said he went to sleep without a problem. A little after 10am the doctor came out and said the implant went in beautifully. He said to leave the cup dressing on for at least 24 hours.

We were able to go back to the PACU (Post Anesthesia Recovery Unit) a little while later. Nicholas was really upset so they gave him some Morphine and Tylenol. We both held him and when we put him back on the bed his gauze cup was full of blood. They called the ENT doctors in to look at him. The bleeding had stopped but they added some more Sterile Strips. The stitches are all internal and he has a bunch of sterile strips on the outside. We were in the PACU for about 4 hours waiting on a room in the children's hospital. Then they moved us to Same Day Observation to wait for a room. Nicholas slept most of the day and seemed very uncomfortable when he was awake. While he was in SDO his monitor showed his blood oxygenation was in the low 90's so we were a little worried about him. Then it showed his heart rate kept going over 200. He wasn't acting like it was that high so I asked the nurse if she could check. She listened and counted and got 120. She also put leads on him to monitor his heart rate that way. The pulse ox sensor on his foot wasn't picking up right and he was fine. One of the nurse in SDO used to work in the PICU at the children's hospital in Columbia.

We finally got moved to the children's hospital around 6. There were quite a few empty rooms so I don't know why it took so long to get him in one. The room was similar to the hospital here. It was a newly renovated room too. The nurses were all great and it was a good hospital stay. He finally started perking up after 7pm. The ENT resident did rounds at 6:30 am on Thursday and wrote up his discharge. We were on our way home by 9am.

Nicholas was ready to start playing and rolling around right when we got home. He even rolled with the ear cup on. He got a blister on his forehead from the pad under the elastic band. He also had a lot of swelling on both sides of the straps. I undid it to take it off since it had been 24 hours. The cup was stuck after I undid the straps. I pulled it back and the gauze was stuck to his ear with dried blood. I didn't want to hurt him or pull off a sterile strip so I strapped it back on him and was going to try again today. I had him in his crib and went to look at him a few minutes later and he was playing with the gauze and cup. I guess he wanted it off. He never cried so it must not have hurt pulling the gauze off. He seemed a lot happier without it on so I left it off. His ear looks a little black and blue and there is dried blood around it. He isn't playing with it which is a relief because we thought he would trying to play with his ear. The incision goes from the top of the top of the ear all the way to the bottom and it is right where the ear meets the head. So you can't see it unless you look from behind his ear and the scar won't be visible. The surgery was to implant the piece that goes under the skin and connects to the nerve. We will go back in about a month and get the processor which is the part he will wear and they will activate it at that visit.

Nicholas got a Cochlear koala and backpack. The koala has a cochlear implant too- it is cute. He also got a little stuffed bear they call a prayer bear that a church group makes for the kids. He is doing well. We have been giving him Tylenol because he has been little fussy. For the most part he is back to himself and should be good to go for therapies next week.

Cochlear Implant

Nicholas had his CI surgery this morning. Surgery went well. He has been crabby and in pain for most of the day. He is spending the night at the hospital for observation and should go home tomorrow. He seems to be feeling better now. He has been smiling and playing with the crib rails.

Videos

Good Therapy

Nicholas only had therapy this week. He did well in all three. In speech we are working on getting ready for Audio Visual Therapy which he will do after his implant is activated. We are supposed to show him a toy or stuffed animal and make the sound it make. Like show him a cow and say moo. He finally showed off his rolling and pushing up for his physical therapist. We are working on a lot of sitting and she thinks he will be sitting independently in a month or so. She also said that she is pretty positive he will walk in time. She doesn't see anything at all wrong with is legs and they are very strong. In OT we are working on banging things together and getting him to use his left hand more. Next week he will only have speech and PT and then we are going to Charleston for his cochlear implant surgery on Wednesday!

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.

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.

Peek-A-Boo

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.

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.

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.