The Story of Nicholas' Early Arrival

Gait Trainer

2011-12-27T12:37:00.001-05:00

Nick in his gait trainer at school. I hope we can get one of these for home soon.

2011-12-14T12:15:00.002-05:00

I have been such a horrible blogger recently. We are all doing well. Nick had his 3rd birthday on Nov. 8 and started school the next day. He is in a special needs preschool in our local school district. He is receiving PT, OT, and Speech once a week and a teacher for the deaf and hard of hearing sees him once a month. He seems to enjoy school and his attention span has already increased. He is still getting PT and Speech once a week each outside of school too.

Long Overdue Post

2011-10-18T14:49:00.005-04:00

Before surgery

After surgery

Poor belly

Ready to go home.

It has been a few months since my last post. For the most part we have been following our routine of PT twice a week, OT once, AVT once and Feeding therapy once a week. We switched back to Nick's old AVT therapist. She had gone on maternity leave so we had to take him to the USC clinic. Well then she decided to start her own company and work a few days a week. So he is receiving his AVT, hearing therapy, at home again. I'm glad she came back because the USC clinic followed the school's schedule and had breaks between semesters so he would go about a month without therapy. Nick has really made great progress in PT the few months he has been seeing his new therapist. He is almost sitting unsupported. He can do it if he has his hands just right on the floor in front of him or a toy to hold on to. Then he gets excited or tries to play with something and he loses his balance. He is also doing better with eating. He is doing more chunky stage 3 baby foods and not gagging. He also ate a scrambled egg last week.

The big news with him is he had his gallbladder and port removed in September. The port removal was no problem the the gallbladder was more complicated than expected. The surgeon had to do an open surgery rather than laproscopically because of his previous stomach surgeries. There was a possibility of scar tissue and adhesions connecting the gallbladder to the liver and when the doctor got inside he found this was the case. Once the gallbladder was removed he did a dye study to make sure everything was connected and and flowing properly and he discovered a cyst. He couldn't physically see the cyst, only saw it from the dye study. He is pretty sure it is in the pancreas and said removing it will be very invasive. So right now the surgeon and the GI doctor are going to watch it. It can cause infection but isn't causing any problems right now so we aren't jumping into another surgery.

We are transitioning from early intervention to the school system. The state's EI program ends at age three so he will start a special needs preschool. We have a PT evaluation with the school this week and his general evaluation next week. The school district has a different preschool program at each school. We don't know where he will go until after his evaluations.

Playing Catch Up

2011-07-31T13:34:00.003-04:00

My last real post was so long ago there is a lot to catch up on. Nick had an appointment with his GI doctor in early June and he wanted an ultrasound of his gallbadder to check on the stone. The ultrasound showed that the duct connecting the gallbladder to the intestines is dilated now. That probably indicated that he is passing small stones and they are getting stuck. If the duct gets fully blocked the gallbladder could rupture. So he referred us to the surgeons. The surgeon looked at the ultrasound and said he wants to talk to the GI doctor about it before he decides if he wants to operate now or wait. We haven't heard back from them yet. The surgeon also said he will remove his port either with the gallbladder or by itself if the doctors decide to continue to wait and watch the gallstones. His port hasn't been giving blood return for months so it is really useless right now.

He had a mapping appointment at MUSC for his cochlear implant. The levels are the same as they were before. That is normal. The level is increased a lot in the beginning but then usually stays the same. He didn't cooperate in the sound booth so we couldn't get a good indication of what he really hears. The audiologist can connect to the implant and test what his brain is responding to so that is how they have been doing his maps. He goes back in six months.

He was fitted for AFO's and now has braces for his ankles/feet to help him bear weight. He also got a hand brace to keep his thumb open on his bad hand, an arm brace to keep his bad arm straight, and a Spio. The Spio is similar to his Theratogs but a lot easier to put on.

He spent a few days in the hospital in the beginning of July. His appetite had been decreasing for about a week and then on the 4th he didn't want to eat anything all day. He woke up that night with the shunt malfunction screaming. We took him to the ER the next day. The CT and xrays all came back fine. We waited about eight hours for the neurosurgeon to see him. He said that the fourth ventricle shunt looked like it was too short now. He said he was going to reprogram the shunts to drain faster and maybe do surgery the next day. They admitted him and reprogrammed the shunt that night. They had him scheduled for surgery the next day but he seemed to feel better. The neurosurgery department did rounds in the early afternoon and said he was bumped from surgery because of traumas. He was finally able to eat after that. Then that night they made him NPO for surgery the next day again. I didn't sign the permission slip because I wanted to talk to his actual doctor beforehand because he was acting normal again. The doctor agreed he shouldn't go through with surgery at that time because Nick has improved. That was at 7am. They didn't discharge him until 7pm when neurosurgery did rounds. We were so aggravated. I called the office twice before we went to the ER to see if we could make an office appointment. They said no and that we had to go to the ER. He spent three days in the hospital for a shunt reprogram which takes two minutes and can be done in the office. So annoying!

We had his transition meeting with the school district last week. The preschool special services director, a special ed teacher, a speech therapist, and an audiologist were all at the meeting. They have a different preschool program at each school tailored to the different needs of the kids. We will go back closer to his birthday and he will be evaluated and placed in the program that best fits his needs. It seems like it is going to be really good for him.

2011-07-20T09:15:00.001-04:00

Nick did this all on his own. We are so proud of him. Time to move down the mattress.

Hippotherapy

2011-07-11T09:42:00.005-04:00

Nicholas got to try Hippotherapy on July 2. There is a horse farm nearby that works with his physical therapist to offer this therapy to her patients. Hippotherapy helps with muscle tone, posture, coordintation and other things. He rode twice and did alright. The first time he seemed to enjoy it, sat up very well and was very vocal. The second time he rode he complained. He took a nap as soon as we got home. They will offer this a few times a month unless the horse farm is booked with horse shows.

Pictures

2011-06-26T19:19:00.005-04:00

Finally, An Update

2011-05-23T09:43:00.007-04:00

A big boy bumbo that I made.

PT. Electrodes to stimulate his weak muscles.

Trying out a power chair. It is good for head and trunk control.

Using a stander at PT.

OT. He is on a skateboard type thing and has to use his arms to move around.

I have been so bad with the blog lately. I just don't time for anything anymore and loading pictures onto this takes forever so I procrastinate with it. Anyways, since the last time I updated Nicholas started with a new physical therapist. We are taking him to a clinic now. She is wonderful! She is very aggressive and has a lot of new ideas and tools we can use since she has everything in the clinic. She also does water therapy and hippotherapy. Hippotherapy is therapy on a horse. It is good for kids with CP because it can work the trunk muscles in a way that you can't do in regular therapy. She will ride with him when we do this. I'm very excited about both the water and hippotherapy. I've read about both of them and wanted to try them but didn't have a therapist that did them. She is seeing him twice a week and already sees an improvement in his trunk and head control. She had a different equipment company come out and look at his stander, which we've had for months but couldn't use because he didn't fit it yet. These guys had the stander fitted to him in no time. He is still a little small for it but it works. She also tapes his bad hand and it stays open! Three pieces of tape is all it takes. It is amazing. She also had him fitted for AFO's. They are ankle, foot, orthotics- braces for his legs.

We applied for extended therapy visits with Medicaid back in March. We still haven't gotten approval for it. His pediatrician's office said she has four patients that haven't been approved yet and Nicholas is one of them. She thinks it might be because we asked for speech twice a week. Both feeding therapy and AVT-his hearing therapy, are both considered speech. So we checked with insurance about therapy. Mark's company said he has 30 visits of PT, OT, and Speech each for the year. Mine covers 60 of each. Mark's company said no to OT with the diagnosis of developmentally delayed so we got a Cerebral Palsy diagnosis. They still said no. We missed a few weeks of OT because of this. Once we get the approval for extended Medicaid visits they will pay retroactively back to April 1st. It is really frustrating because he has five therapies a week. If we don't have Medicaid or insurance coverage that is about $500 out of pocket a week. We can't afford that. The Medicaid cuts are really hurting him right now.

Feeding therapy is going alright. He still isn't eating table food but we've started to mince up fruits and veggies and mix them in with his food. He is doing ok with it. Some days are better than others but it is progress. His therapist has seen improvement in his mouth muscles so that is good. He has a swallow study on Wednesday. They are looking for aspiration. We don't think he is aspirating but we need to have the study done so the therapist can renew him and see him for another 9 weeks.

He has a well visit at the pediatrician, a dentist appointment, a check up with the GI doctor, and a check up with the audiologist coming up.

March for Babies

2011-05-11T12:37:00.000-04:00

I'm a little behind in my posts but The March for Babies was a success. Thank you to everyone that donated to support us in our walk. And thank you to Pam and Drew for walking with us and raising money. It was a great day for the walk. It was a lot longer than last year. Six miles and tons of hills! Last year it was raining so we turned around before we were even half way done. After the walk we went to the Sparkleberry Country Fair just like we did last year.

Happy Easter!

2011-04-24T16:53:00.007-04:00

I think we finally found a bowl that is too big.

Playing with his new toy.

Checking out what the Easter Bunny brought.

The Easter Bunny stopped by.

At the Easter Egg hunt.

Trying to eat his basket.

Meeting the Easter Bunny at the egg hunt.

Nicholas got a balloon at Sam's Club and loved it!

High chair insert to help him sit up straight. He isn't thrilled with it.

Tornado boy.

Eating lunch with his balloon.

Not a whole lot has been going on. Last week Nicholas only had AVT, his hearing therapy. He did well. Now he is on break from that for a month. It is part of USC so they follow the students' schedules. He will have a new student when we start up again. Feeding therapy and OT were both canceled last week. PT is still on hold until we start at the new clinic on Friday.

Last Friday Nicholas saw the Easter Bunny. Grandma met us at the mall and was a big help because it was pouring when we got there. She met me at the door and took Nick inside while I parked. Of course I was drenched along with the stroller. So we took turns holding him while we waited in line. He wasn't too impressed with the bunny and we didn't get a good picture. He was more interested in looking at the big egg behind him than at the camera. Then I went to Belk to buy a towel so he could go in his stroller.

On Saturday we went to the Easter Egg hunt our home owners association does. Poor Nick didn't get any eggs. They had the 18mo to 3 year olds go in the playground area. You have to go through a fence to get in. By the time I maneuvered the wheelchair in there and over tree roots and a step all the eggs were gone. It was the first time he missed out on something because of his disabilities. It really upset me because if he was a normal 2 and a half year old he would have been able to run and get some eggs. I guess the reality of his developmental delays really hit me. Daddy found a box and took 3 eggs so he did end up with some.

Yesterday the Easter bunny stopped by and brought him some new toys, puzzles, and books. Then Grandma and Grandpa came over for a late lunch.

This week he has a dentist appointment. That should be interesting. Feeding him has gotten harder lately. He inspects his food looking for chunks. Then he covers his lower lip with his top and blow out so you can't get any food in.

We only have a few more days to raise money for the March for Babies. The effects of his prematurity really hit us this weekend at the egg hunt. The March of Dimes is working to end prematurity. Here is the link to donate. www.marchforbabies.com/teamnicholas

Two Years!

2011-04-19T13:16:00.002-04:00

Today is the two year anniversary of Nicholas' NICU discharge. It is hard to believe it has already been two years. April 19 will always be a special day to us.

The day he came home. We sure don't miss the oxygen and apnea monitor.

2011-04-09T19:29:00.003-04:00

This is Nicholas playing with rice during occupational therapy.

Don't forget to help us reach our goal for the March for Babies. The March of Dimes is trying to end premature birth. We can't do it without your help. www.marchforbabies.com/teamnicholas

We Have Been Busy

2011-03-31T16:00:00.007-04:00

Getting into trouble at work. He knocked over his pod, took a lid off a box and pulled a basket off a shelf.

He is all ove the house with his walker now!

I can't believe it is the last day of March already! Since my last post a lot has been going on. I left off with Nicholas going to the allergy doctor. Well we were wrong about peaches and mangoes. We thought he was allergic to pitted fruits because he was getting a rash around his mouth whenever he ate them. He isn't allergic. I brought peaches, mangoes, prunes, and peas to be tested. He was fine with everything except peas! How weird is that? I asked if we should stay away from anything else and the doctor said beans and nuts since they are all legumes. He is already allergic to milk so he has a lot of soy products. I asked about that since soy comes from a bean. So he went a head and retested him for soy and peanuts. He was negative for both. Thank goodness. It would be really hard to avoid both milk and soy. He said that peaches and mangoes can cause a skin reaction similar to posion ivy. We are still avoiding them even if he isn't allergic.

Nicholas got his last Synagis shot ever this month. He won't need them next year.

He also had a double ear infection. He kept pulling his CI off so I emailed his audiologist so see if she had any suggestions. She said a lot of times kids will do that when they have ear infections. So I took him to the doctor and sure enough, double ear infection. That was on a Monday and he still had a low fever on Friday so I took him to the weekend clinic on Saturday. One ear was still infected so he was given a stronger antibiotic. He actually went back to the doctor today. He has been crabby and had a low fever again. I wanted to make sure his ears were ok. They are but he is cutting three molars right now. It is so hard to look in his mouth we couldn't tell.

Glad it isn't his ears. Nicholas lost his early interventionist this month. We also learned this week that he is losing his physical therapist. They have someone in mind as her replacement but he don't know anything yet. If that doesn't work out we will probably have to find a clinic. They both will really be missed.

Yesterday Nicholas was fitted for his arm brace. His occupational therapist wants him to wear it to keep his hand open. He keeps his left hand in a fist and it gets really tight. It is going to be a challenge to keep it on him. He slipped his hand out of it in just a few minutes. We are going to try it while he is sleeping.

Grandma and Grandpa came down from Chicago for spring break. It was a nice visit and we had perfect weather. It was in the 80's the whole week.

The March of Dimes called us last week to see if we would tell our story at Blue Cross Blue Shield. They were having the kick off for their company team and wanted a local family to share with them. It was an honor to be asked to do this. Nicholas was adorable and showed off his tricks. I could tell our story really touched some people. There were tears in the audience and one lady came up to talk to me and gave me a hug. It was a great experience. Don't forget to help us raise money for the March for Babies. You can click in the box on the top right of the page or use this link. www.marchforbabies.com/teamnicholas I will add pictures later and try to update more often!

Finally, An Update!

2011-03-08T11:18:00.006-05:00

Such a happy boy!

Goofball.

Practicing for his glasses.

Picking out glasses. They should be ready this week.

Not happy about the glasses.

Dinner turned into food play!

Playing with food is fun!

We actually haven't had any doctor appointments since my last post. Nicholas does have an appointment with the allergy doctor today. They asked us to bring in a peach so they can test him for that. We are also bringing mangoes because he got red after he ate those too. It seems like all pitted fruits cause a skin reaction. Very strange and it will be nice to see what the doctor has to say about that.

He has had three weeks of feeding therapy and his therapist thinks he is doing well. We are doing food play with him but it is hard to find things to play with that don't have milk. I found soy whip last weekend and he actually touched it on his own. He wasn't thrilled to have it on his hand and shook it off but he touched it. He tasted it too and seemed to like the flavor. In therapy we are working on conditioning with puffs right now. We break up a little puff into six pieces and mix it in with his food. Yesterday, after about 20 pieces he got to the point where he didn't gag on it. It seems like a lot of pieces to go through but it is progress. He will get to the point where there won't be any gagging at all and we can move to regular food. It it really nice that his therapist wants to feed him and since the puffs are dissolvable she wants us to feed them to him. He can't choke on them since they dissolve. Before, we were told not to give him anything if he gags. She said she has seen kids that won't even let anything touch their mouths so there is hope for him. Since I'm talking about eating, I want to add that he has learned how to drink from the sippy cup on his own. After showing him once or twice we leave the cup on his tray and he can pick it up whenever he wants a drink. He actually brings it to his mouth and knows to lift it up to let the juice out. He will hold it up there a little too long sometimes so we have to take it away so he doesn't choke. I'm very proud of him!

PT, OT, and AVT have all been the same. He is making little improvements each week. He is trying so hard to sit up on his own but can't quite get there. He does well in AVT each week but he still doesn't like his implant. We went to the monthly meeting at USC Speech and Hearing, where he has his AVT, and met other families with kids with CI's. None of their kids disliked the implant so we didn't get any suggestions on things to do to help. They have a different speaker each month. They had a lady from the School for the Deaf and Blind talking about the program the state has for phones and alarm clocks for the deaf. They are free of charge to people with hearing loss but you have to be 5 to get them. The fire department also provide smoke detectors for the deaf. The speaker had a cochlear implant so it was nice to talk to an adult about it who could answer questions about learning to hear. Next month they are having someone from the schools system. We are going to try to go each month.

Nicholas learned how to do high five. It is so cute. If you put your hand up he will touch his to yours. Next we are going to work on waving.

Well it is that time of year again. We are walking in the March for Babies again this year. It is April 30 at the state fairgrounds. Research by the March of Dimes found artificial Surfactant. Nicholas received that right after he was born to develop his lungs. His body hadn't produced it yet since he was born so early. Without the artificial Surfactant his lungs wouldn't have developed and he wouldn't be here today. We are very grateful to the March of Dimes and their research for saving his life. Please sign up to walk with us or sponsor us by making a donation to the March of Dimes. There is a link on the top right of the page, the purple rectangle with Nick's picture, or you can click the link here. www.marchforbabies.com/teamnicholas. Thank you to everyone that has donated already!

Oh My, A Blog Post!

2011-02-17T13:19:00.008-05:00

He even does his trick with mixing bowls.

Playing with an M&M bag.

Enjoying Home Depot.

He likes to take things off the table and and drop them over the side of his high chair.

Sitting in a big boy chair.

Still enjoys the diaper dance.

Look at his arm. He got it out from under the strap. Trying to escape the stroller.

Here he is taking the stroller apart. He figured out how to undo the Velcro holding the shade on.

Nick's new wheels.

Yes, I know it is blurry, but he was so excited about his new wheelchair.

The wheelchair is awesome. He sits up so well in it.

I have been slack with the blog posts. We just aren't very exciting people. We have our routine and that is about it. We went to a few eyeglass places to try and get Nick's glasses. They only had designer glasses for older kids. We aren't going to buy Ralph Lauren glasses so he can roll over them and break them the first day. One of our friends said she gets her daughter's glasses at the eye doctor's office. I called and they do have an optical center. The lady there said they have one brand that she has never seen anyone break but they aren't covered by Medicaid. We don't have vision insurance so we will have to pay for them out of pocket. The price isn't bad so we are going to go see what they are like and probably order the free Medicaid pair too so we have a backup.

Last week Nick had a GI scope done. The Eosinophilic Esophagitis is back so he probably has another food allergy. We noticed that when he ate peaches he would gag more and sometimes vomit. He also would get red on his face where the food touched. We aren't giving him peaches anymore and have also stopped apricots and cherries since they all have pits. He has an appointment with the allergist next month. We have to bring a peach in so he can be tested for an allergy. He has actually started eating better since we cut out all pitted fruits. He still enjoys his mix of tuna, olive oil, and protein powder and is drinking so much better. Our friends from the NICU gave us some Neocate Splash which is like EleCare but flavored. He likes it and it is high calorie so hopefully it will help him gain some weight. I already ordered another case of it. Thanks Wicker Family!

He had a feeding therapy evaluation this week. The therapist seems to have some good ideas and seems interested in working with him. She said he is going to do a lot of food playing and it is going to get messy. Now he has therapy four days a week!

Glasses

2011-02-07T09:15:00.003-05:00

Nicholas had his annual checkup with the eye doctor last week. He determined he is nearsighted and wrote him a prescription for glasses. They put lenses up to his eyes and look with a light and see a reflection when the right prescription is held up. He is -1.5 in each eye which the doctor said isn't bad. He even put letters on the wall and the lenses up to my eyes so I could see how Nick does. I couldn't read the letters so glasses will definitely help. The doctor said if we don't think he will tolerate them we don't need to get them yet. If Medicaid will pay for them we may as well get them now. We haven't gone to the eye glass store yet but will get there one of these days.

His early interventionist is going to try to get him an evaluation with a different feeding therapist. We didn't think the one who saw him was very helpful so we are going to get a second opinion. He is still eating stage 2 baby food and gags on anything that has texture. It only has to touch his tongue and he gags, he isn't choking on it. He has been doing well in PT and even showed off his commando crawling. Speech has been getting better but we are still having a hard time with his ear. He doesn't want to wear it at all. OT hasn't been going very well. It is right after Speech so we are going to move it to Thursdays to see if that helps. We think having Speech and OT back to back is too much for him. Now he will have his 3 therapies on 3 different days.

Long Needed Update

2011-01-26T11:29:00.007-05:00

Little Boy Got His First Real Haircut.

Not much has been going on with us. Nicholas had another dentist appointment. She wasn't able to do much because he wasn't cooperating. She said the stain on his teeth is deep but it should lighten up over time. She was able to scrap a little and put fluoride on his teeth. He also had his second Synagis shot. Mark and I caught our colds from Nick and we had it way worse. The Synagis shot really helped. Maybe he gave us RSV. He also had a port flush. They finally got blood return this month. They haven't gotten any blood the past few months and had to give him a medication last month to try to break up any clots that might be in the line. It must have worked because they got blood this time. He also had a check up with the Neurosurgeon. He is happy with him and happy that the big golf ball size lump on his head went down. The CT looked that same as before he adjusted the shunt in November. He goes back in six months. Next week he has his annual check up with the eye doctor.

One thing that is really awesome is that Nick has started to do an inch worm/army crawl thing on his tummy to get to toys. He is also standing straight up in his pod while he holds on to the front of it for balance. He looks so tall when he does that! He also moves backwards around the kitchen in his walker. All very good things for his development. His physical therapist said his wheel chair and stander are in so we are waiting on a call from the medical equipment company to set up delivery. He hasn't been doing very good with his ear lately. He keeps taking the coil off his head. It is pretty frustrating because it is so hard to keep it on him and this isn't helping his learning to hear. We are supposed to get a replacement part for his original processor today. The wire connecting the coil on his head to the sound processor was broken. Maybe going back to his beat up old one will help.

More Christmas Pictures

2011-01-07T13:48:00.002-05:00

Go Pod

+
Under the Tree

Nick and Grandpa Stan

New toy

Nick and Great Aunt Pam

2011-01-06T16:56:00.002-05:00

A Much Needed Update

2011-01-06T11:23:00.007-05:00

Wearing Daddy's Bears hat in the Go Pod

Nick and Great Uncle Jim

Four Generations

Nick and Daddy

Nick and Aunt Heather

Nick and Great Grandma

Nick and Mommy

Under the Tree

I have been a bad blogger lately. It just seems like there is no time anymore. Let's start with Christmas. We had a small get together with Grandma and Grandpa Matthews before Christmas. Then Grandma T flew down to SC so she could drive back to Chicago with Nick and me. Mark couldn't request his vacation until Dec. 26 so he flew to Chicago on Christmas and drove home with us. The drive up there was not bad. It took us 14 hours which included 2 stops of an hour each. Nick did pretty well. He was getting bored so whoever wasn't driving was on their knees in the front passenger seat trying to entertain him. His favorite thing to do was play with a toy then throw it between the seat and the door. About 2 hours from home he got really mad. He was so upset I had to take him out of the car seat. I felt horrible doing that but it made him stop screaming. When we got there we put him in his play area and he was so happy.

The first few days we did some shopping and baking. He does not like his winter coat at all. We found him a less bulky winter coat that he accepted more but he spent most of the time in the house. On the 23rd something went wrong with the processor for his cochlear implant. I called Cochlear and they said it was something with the programming and the audiologist would have to fix it. Of course we didn't bring his backup processor with us and the audiologist was about 900 miles away so he was earless until Mark got there with the backup on Christmas morning. On Christmas we spent time with the family and opened presents. Nicholas was having a hard time with all the noise so we had to take his CI off. He was in silence for a few days and there were more people there than he is used to so that is understandable. Once we turned it off he was happy. He kept scooting under the tree pretending to be a present. He also enjoyed playing with Uncle Tim's pants.

We found this chair called a Go Pod while we were up there. We bought a new walker to take with us but the seat was so shallow he was flopping over and could fall out so we couldn't use it. The pod has a low seat and he can stand up in it. It is really neat. I have to post a video of him in it. It was next to a chair that had a blanket hanging over the top. He kept sticking his head in the folds of the blanket and jumped up and down. He thought it was great! It was really funny.

The day after Christmas my mom's family came over. It was great that they agreed to change the normal Christmas plans so they could see us and meet Nicholas. The next day a bunch of friends came over to meet him. We also had Mark's cousin, his wife and son, and his aunt over for dinner. It was nice to see them too.

It was a great trip and really flew by. The drive home was not fun at all. We were making good time until we got to the Kentucky/Tennessee state line. There was an overturned semi which caused the interstate to stop. Then there were a bunch of fender benders from the stop and go. Heather and John were nice enough to look online to see if they could figure out what was going on. They found the department of transportation site and told us what to expect. It was right and very helpful. That mess took 3 hours to get through and we only drove 40 miles. Nicholas was getting mad by that point so we stopped for dinner. We brought the pod in so he could stretch his legs out. We were probably the talk of the servers at Cracker Barrel that night. Right when they were serving our food Nick threw up. He just ate too much. I caught the first one in the bib and Mark caught round 2 in his hands. I would have been so grossed out if I was the server. Then about 20 minutes after we got back on the road Nick started screaming. We were going to have to stop for the night or I was going to have to take him out of the car seat. I really didn't' want to do that because we were at the beginning of the mountains and that is the most dangerous part of the drive plus it was nighttime and there was ice on the side of the road. Then I caught a whiff of his diaper and knew it was a bad one. We stopped at a gas station and they didn't have a changing table so we went to the next one and they didn't have one either. So annoying. We had to change him in the front seat of the car in the parking lot. Poor guy had poop all over his clothes and down his legs. It was bad. To top it off it was about 20 degrees outside. He was shivering and crying. We got him in his PJ's and back in the car and he was asleep in no time. So we continued driving. This all happened in Tennessee so we still had about 5 hours of driving. We finally made it home at about 1am after 19 hours of traveling.

The next day Nick had a low fever of 100.5 and was a little congested. We canceled OT and his GI scope. He had whatever it was for a few days. Thankfully it never got bad and he did really well with it. Now Mark is sick and I'm trying not to get it. Therapy was back to normal this week. He did really well in both PT and OT. Both his therapists approved the pod too. You never know, something that we think is great could be really bad to a therapist. His physical therapist had him sitting for 10 seconds. She thinks he is really, really close to sitting on his own. He has really taken to the sippy cup the past few weeks. He looks at it in amazement. When you give him a drink he smiles then grabs for it. He will bring it to his mouth and chew on it. It is so funny how he thinks it is just the greatest thing. This is a big improvement from about a month ago when he would push it away.

Where Does the Time Go

2010-12-20T10:10:00.004-05:00

I can't believe Christmas is this week! We are headed to Chicago on Wednesday. Nicholas, Grandma T, and I are driving. Mark is going to fly up there and drive back home with me. Hopefully Nicholas will do well during the long car ride.

He went to the Audiologist last Monday for a hearing check up. His implant is at 80% volume right now. He goes back in six months. She changed the settings on his processor and now it doesn't turn off on its own. If we took the coil off his head the processor used to turn off after about a minute to save the batteries. I thought something was wrong with it so I called Cochlear and they were going to send us a new one. We put his back up one on and it was doing the same thing. I called Cochlear again and they had me sync the processor with the remote and were able to see what was going on with it. His audiologist accidentally put it on advanced settings instead of simple. It works fine we just have to turn it off on our own. No big deal but i think we will go through batteries faster since Nick likes to rip it off his head and if we don't see him do it it will still be turned on draining the batteries.

We heard back from the GI doctor about his stool sample. There was no blood in his stool but it was very acidic. He said that means he isn't absorbing something. He wants to do another GI scope to see if something is going on with the small bowel. That is scheduled for Dec. 30. He will have to be sedated for it.

He finally got his first Synagis shot last Friday. His appointment was Oct. 22 but it took two months for the doctor's office to get someone at the insurance company to agree to let them use the medicine in the office rather than ship it just for him. This avoided us having to pay for 50% of the cost of the shot. The shots are over $2,000 each and he is supposed to get six of them. He will only get four because it took so long to get the first one. He was 22lb 2 oz at the Pulmonologist's office when he got the shot. He has never been over 22 pounds on any scale so he gained some weight. The tuna salad and olive oil must be packing on the pounds.

Equipement and FTT

2010-12-08T10:01:00.005-05:00

Not a fan of winter gear.

Last week Nicholas had an appointment with the GI doctor. He isn't gaining weight and growing like he should be so he diagnosed him Failure to Thrive. He said to give him fish and add olive oil to his food. He also said to add protein powder to his food. Of course most protein powder has milk in it so I wasn't able to find any. Grandma T got some at Whole Foods that is milk free. I can't wait to go to Whole Foods later this month. It is going to be a dairy free wonderland! He has been doing well with the tuna. We are adding Miracle Whip so it is like tuna salad baby food. Looks gross but Mark said it doesn't taste bad.

His feeding therapist came by to go over his swallow study. He has a safe swallow meaning he isn't aspirating into his lungs but it is very uncoordinated. He has residue left in his mouth that takes several swallows to get rid of. He also has premature spillage into his throat. That means the food is going down by gravity rather than him forming a bolus and making a swallow. We really didn't get any new news. He is uncoordinated and has texture issues. So no feeding therapy and we are to work on de-sensitising his mouth.

Nicholas did really well at AV therapy today. It is affiliated with USC so they are going on winter break for 4 weeks. Since they like Nick, the instuctor said she will try to come in to see him while they are on break.

The Giraffe Stander

Yesterday during PT, a rep from an equipment company came out to measure Nicholas for his wheel chair and stander. He has to start getting his therapy through the school system as soon as he turns 3 so his therapist wanted to go ahead and order the wheel chair since it can take forever to come in sometimes. It looks like a stroller so that is pretty cool. The stander on the other hand, looks like a torture device.

The Stingray Wheel Chair

Updates

2010-11-30T13:28:00.005-05:00

I have been such a bag blogger lately. I have to go back through my appointment book to do all Nicholas' updates. We have also been bad about taking pictures so I'm using phone pics. Lets see, going back to the beginning of November, Nicholas had an ultrasound of his gall bladder. The gallstone is the same size. He sees the GI doctor this Friday so we will find out what his plan is. He had his 2 year well visit on the 11th. He was 21.5 pounds and 30 inches. He gained good weight since his last visit but his length is concerning. If he still isn't growing much at his next well visit in 6 months he will have to see an Endocrinologist. Besides that his doctor was very pleased with him. He had another swallow study on the 22nd as requested by the feeding therapist. The therapist doing the study said that he has a texture/sensory issue with his mouth. He is swallowing fine, so that is good. His feeding therapist wants to go over it with both of us and decide what to do. She thinks he is going to need about 2 hours of feeding therapy a week. We made an appointment with the Neurosurgeon because he had some swelling on the valve of his shunt. The doctor decided to adjust his shunt to drain faster and do a follow up CT in a month. He has had a big bulge of fluid where an old burr hole is every since they moved the shunts to the other side of his head. The bulge went down to about half the size it was and no shunt malfunction so hopefully that did the trick. I thought they should have done that like 6+ months ago but whatever. Logically to me, it seemed like the fluid wasn't draining fast enough so it was going out any path it could take, hence going out the old burr hole. We'll see what he says after the follow up CT and office visit. Nicholas still hasn't gotten his Synagis shot. That has been a huge mess. His insurance is based out of Florida and they have to ship the medicine to the doctor's office rather than letting the doctor use what they already have in stock. The insurance will only pay 50% of the expense and the shots are about $2500 each. He needs 6 of them so that would be $7,500 we would have to pay for the remainder. He has SC Tefra Medicaid and they would normally pay the remainder but since the medicine has to be sent from a pharmacy in Florida, SC Medicaid won't pay for it. So I don't know what is going to happen with Synagis. That's about it in updates.

2nd Birthday Pictures

2010-11-16T14:20:00.006-05:00

Halloween and Medical Update

2010-11-07T15:51:00.005-05:00

The Friday before Halloween we went to Boo at the Zoo. They decorate the zoo and have activates for kids set up at night. Nicholas enjoyed the lights. We borrowed a wagon and he just chilled in it while we pulled him around. We got so many complements on his Nemo costume. It will be a lot more fun in a few years when he can participate. They also put lights up at the zoo for Christmas so we will probably take him to that too. On Saturday I brought him to Publix to do some trick-or-treating and show off his cuteness. On Halloween we went trick-or-treating around our neighborhood. It was really disappointing. About 85% of the houses didn't have their lights on and weren't giving out candy. It was nothing like when we were kids. Next year we are going to have to figure out a better place to go.

Nicholas had a CT of his brain and an appointment with the neurosurgeon. The radiologist red flagged his CT because his ventricles looked a little enlarged. The neurosurgeon sent him to get a shunt o'gram (x-rays looking at the shunt tubing) and an ultrasound of his belly to look to see if it is draining alright. Everything looked fine and they compared the new CT to one from right after surgery. The ventricles are a little bigger but they get bigger with his regular growth so they are going to leave the shunts alone. He isn't acting like anything is wrong with them, which is good. They are going to do another CT in three months.

He also had an ultrasound to look at his gallstone. It is the same size as is was during the last ultrasound over the summer. He sees the GI doctor in the beginning of December so we don't know what they are going to do about it.

His speech therapist is going on maternity leave so we have been trying to get into the clinic that does AV therapy, which he needs for the cochlear implant. That has been a huge hassle. They changed the one time slot they have open on us about 5 times. We were finally able to get him in Wednesday mornings. We have to push OT back a little bit but we should be fine. He also started feeding therapy last week. The therapist said he has one of the worst cases of texture issues on his tongue that she has ever seen. She watched him play with his toys and noticed that ones that have texture cause him to make a face or cough once he gets them to a certain point on his tongue. We have never noticed that. He will put anything in his mouth beside food so we didn't think it was a texture problem. He is fine with smooth things. She said this is going to be a very long process and a lot of hard work to fix. We have to figure out why he has the texture issue and since he can't tell us that is going to be hard to figure out.

Pumpkin Patch

2010-10-27T17:35:00.004-04:00

Long Time, No Post

2010-10-25T13:34:00.003-04:00

The past few weeks have been pretty routine. Nick has has PT, OT, and Speech. He is doing well in all of them and showing slow progression. The corner chair that his OT ordered finally came in. It is a neat little chair and will allow him to sit supported and play. He went to the allergy doctor last week. He didn't retest for allergies because he wants to wait a year from the first test which will be next summer. He did say that his skin is really dry and he is at high risk for Eczema because of his food allergy. So he recommended lotion and cleanser to use on him. He has had a few patches of weird looking dry skin so hopefully the Eczema lotion will help. We hope to make it to the pumpkin patch this week to take pictures. We haven't had a time during the day on the weekends when we can all go. This week he has a port flush and a brain CT. It is a routine CT for his six month visit with the neurosurgeon. He has a big birthday coming up.
Maybe he will be interested in the cake this year. I found a gluten free cake mix that doesn't have milk in it. Hope it is good.

Dentist

2010-10-11T12:01:00.003-04:00

Nicholas had his first dentist appointment last week. I really had no idea what to expect and even thought he might have to be sedated, but no sedation and it was better than expected. They had me sit in the dental chair and hold him on my chest. The first thing the dentist asked when she saw his teeth was if he takes vitamins with iron. He does. She thinks the discoloration is all stain from his vitamins and that she can get it off over time. We mix the vitamins with his food but they still stain his teeth. She was able to do a quick cleaning. It was just like the cleanings we get with the little cup of paste and the spinny brush. He actually made happy noises during that, probably tickled him. The she scrapped a little and he was done. The screaming started so she stopped but got in a fluoride treatment. She wants him to come back in three months to do some more. His front teeth already look so much better. We can use kids toothpaste with fluoride instead of baby toothpaste. It isn't easy brushing his teeth but we try.

He also had an appointment with the gastroenterologist . He weighed 20 lb, 5 oz and they measured him at 32 inches. The doctor is happy with his weight gain and ordered an ultrasound of his gallstone. He is scheduled to get the Synagis shot again this year. I didn't think he would qualify but the pulmonologist's office said he does. His first shot it at the end of the month.

Mountain Trip

2010-09-29T14:07:00.014-04:00

We had a fun weekend in Tennessee. We drove up on Thursday and got there around 2. Nick has a new favorite song. I Like It by Enrique Iglesias. It was on in the car and he was dancing and making happy noises. After we unloaded all the stuff we had to bring for Nicholas we went to the outlet mall. We got his Halloween costume. He is going to be Nemo. While I was getting the costume Mark took Nick to the bathroom to change his diaper. He peed all over the changing table and they didn't have paper towels so he had to clean it up with diapers then Nick got his bum dried of by a hand dryer. Mark and Nick went to the arcade while I shopped. Nick enjoyed the lights on the games and Mark won him a Scooby Do wearing a Tennessee Volunteers jersey. Scooby is his new friend.

Friday we planned to go to Smoky Mountain National Park and up to Clingman's Done which is the highest peak in the Smoky Mountains. We went to the car and had a dead battery. The hotel maintenance guy jumped us and gave us directions to the local Napa. It was a very small store and they didn't have the right battery so they called a local garage. So we were off to some garage in the middle of nowhere Tennessee. They had the battery and installed it for us. There were no banjos playing so it turned out better than we had envisioned. We made it to the park and first walked along a paved trail that the visitor's center recommended since we had a stroller. It was a short walk and we encountered a snake. We think it was a Northern Copperhead one of the two poisonous snakes they have in the park. We looked up the snakes they have there and the picture of the Copperhead looked like what we saw. Then we drove up to Clingman's Dome. It is a beautiful drive with a lot of scenic overlooks you can stop at. The leaves were just starting to change in the higher elevations too. We made it to the top and Nicholas enjoyed the cool mountain breeze. He has always liked wind and laughs and smiles if it is windy. It was about 25 degrees cooler on top of the mountain but he wouldn't wear his jacket. I think he felt too constricted in the stroller with his thick jacket on. It is a half mile hike straight up to get to the dome. A half mile isn't anything but when you are going up such a steep hill it is hard! Mark pushed Nick up the hill and we got to the top. It was sunny and clear out so we could actually see. You can supposedly see seven states from the top on a clear day. This was also our first encounter with a huge family with obnoxious kids running around.

Friday night we walked around Gatlinburg and went the Ripley's Believe it or Not Museum. It was kind of boring but Nick enjoyed it. He also liked all the lights on the main parkway in Gatlinburg.

Saturday we went to Ober Gatlinburg. You take a tram up the mountain and they have a bunch of attractions up there. The tram ride was fun and beautiful. We went to the Black Bear Exhibit. Bella looks just like a bear when she sleeps on her side. Nicholas rode his first Merry Go Round and Mark rode the Alpine Slide. They also had ice skating, a playground, water slide, flying swings, and a band if you rode the ski lift up. This was our second encounter with the obnoxious kids. It was like they were following us. We rode the tram back down and just walked around Gatlinburg. There is so much to see and do we didn't have enough time to do much. We got the Old Time Photo done on Saturday. The picture came out really cute but it is missing some money bags and a toy gun. Mark was holding him underneath a black coat. We had money bags and a gun propped up on Nick's legs but they fell off right before they got that picture. His smile is so cute we got it anyways. We also saw the obnoxious family for the third time while waking around. We had a good trip but wish we had a lot more time to do things. We didn't make it to the aquarium with the new penguin exhibit. Next time.

Great Smoky Mountains

2010-09-27T13:56:00.001-04:00

We spent a long weekend in the mountains. More to come later.

Enjoying Lunch

2010-09-17T13:01:00.001-04:00

Therapy Has Been a Bust

2010-09-16T09:29:00.002-04:00

The past few weeks Nicholas hasn't done well in therapy. He screams and arches out of the PT positions. His therapists have always said the older kids are the hardest because they can fight back to not do the therapy. They said babies are easiest because they can put them in the positions and they can't get out of them. I wonder if he is getting to the age of being a difficult therapy patient. We do the therapy on our own too, the therapist teaches us what to do and we do it everyday. Speech is the only therapy that he cooperates in. He is doing well too. He is mimicking sounds. Of course he isn't saying the same thing we are but if we say something he will make a noise back- that is very good. On Monday he had an audiology appointment at MUSC. The audiologist put him in the sound booth to test sounds and what he can hear. He responded to all but the very quiet sounds. Yay! She put three new volumes on his implant and was more aggressive with the increases. He cries harder when we turn it on but easily calms down.

22 Months Old

2010-09-08T18:56:00.003-04:00

It has been another slow week for us. Nick only had therapy. He did well in speech. He demonstrated looking for the sound not just hearing it. It is still hit or miss with keeping the implant on. He still cries when we turn it on but it easily distracted by sound. So if he is crying we can turn music on a or toy and he calms down. Nothing new in PT. Still working on sitting and head control. He did well in OT. He has gotten better with transferring from hand to hand. Next Monday he has an appointment at MUSC to get his implant turned up some more. Little boy sure is growing. On our scale he is over 20 pounds. He has outgrown most of his summer clothes, at least on the top. He still fits 12mo in shorts and pants but is up to 18 or 18-24 on top. He has also started hugging. Whenever I pick him up I give him a hug and he has started tightening his arms around me and making a noise after I hug him. Very cute!

Sippy Cup Training

2010-09-01T19:43:00.005-04:00

Things have been pretty slow for us. We still working on the sippy cup and textured foods. Neither one are working. Nick did well in OT today. We are working on him using his bad hand more and transferring from hand to hand. Speech was ok. He was being ADD and wasn't paying attention to what he was supposed to be paying attention to. His therapist thinks he might have been over stimulated with all the sounds. We turned his CI up to level 4 and he is doing well with it. It is at the highest setting right now. He goes back to MUSC for more mapping on Sept. 13. Tomorrow he has his port flushed. His dentist appointment was rescheduled for October.

Swimming

2010-08-25T12:33:00.007-04:00

Nick went swimming for the first time last weekend. He did not enjoy it. The first time in the water he closed his eyes and was either falling asleep or closing them in hopes that the big bad bathtub would go away. We took him out and he was happy. Mark tried a few more times and each time Nick protested. The only part of the pool he like was when our friend Misty put him on her legs and raised them in and out of the water.

Speech has been going well. He responded better to all of the ling 6 sounds this week. We are supposed to work on him looking for sounds now rather than just showing us he heard them. We want to see him look around and find where the sound came from. We are also supposed to play music and make him dance then turn it off and say "I don't hear it." Then turn it back on and say "I hear it" while pointing to our ear. We are looking for him to show us he notices when the music is turned off and on. His therapist said he is around the 3 month age range for his hearing. That is great because he hasn't even been activated for 2 months. It has been a better week with him leaving the implant alone. Hopefully he is getting used to the sound and it isn't as scary.

PT was a scream fest this week because he hadn't napped. When this therapist was doing her paperwork Mark put Nick in his crib and he fell right asleep. He lucked out on OT, his therapist has food poisoning so it was canceled.

All the paperwork has been submitted for his "corner chair." It's a chair his OT wants him to have because it will support his head unlike any chair we could buy. It also has a table so he can play while he is sitting in it. Now we have to wait on both insurance companies and Medicaid to either pay for it or deny it. Baby Net should pay for whatever isn't covered. It may be a few months before he gets it. http://www.pediatriceshop.com/seating-special-needs/activity-chairs.html

Bad Blogger

2010-08-18T18:50:00.002-04:00

I haven't blogged lately because nothing is going on. Nick doesn't have any doctor appointments until September. He has had his weekly PT, OT, and ST. He is doing well in all therapies. He is now responding to all 6 of the ling 6 sounds we have been working on. He still doesn't like his implant. He gets so mad when we turn it on but calms down after we distract him with something. He is constantly pulling the implant off so it really is a challenge to keep it on. He is making a lot more sounds when he keeps the implant on. We have been practicing with a sippy cup which is a huge mess. He will hold it and put it in his mouth but then he holds it upside down with his teeth so it spills everywhere. We will keep trying. Finger foods are still horrible. He doesn't even want to touch food. He will put anything in his mouth if it isn't food but as soon as he tastes something he spits it out or gags.

Long Time, No Update

2010-08-09T17:20:00.006-04:00

Nick and Grandma T.New bean bag chair.

Please don't brush my teeth.

This is what I do with my froggy when my diaper is being changed.

Nap time.

Going back to my last post to start the updates. Nicholas saw his audiologist for a mapping session of his cochlear implant. She made four new settings which are louder than the first four. We are still turning him up each week but can extend that if we think he isn't tolerating it. He had a hard time going up to level four with the original settings and a little bit of a hard time with level two with the current settings. He is getting used to it and we can try three later this week.

He also had appointments with the GI doctor and pulmonologist. His GI doctor took him off one of the meds that was for healing the little holes in his esophagus. He also increased to dose of his gall stone medication because he has gained weight. He was happy with his weight gain too. He wants another ultrasound of his gall stone but nothing is scheduled yet. The pulmonologist said his lungs sound great. He still had chronic lung disease but will eventually grow out of that. The doctor said that if he were to biopsy his lung tissue and compare it to another child's who wasn't born so premature Nick's lung tissue would look different. Nothing to worry about though. He said he should qualify for Synagis again this year and doesn't have an appointment until October for the shot. Nicholas also had his monthly port flushing appointment and speech and OT. This week is just the three therapies. He actually doesn't have a doctor's appointment until his port flush in September.

Grandma T came to visit for the week. Nicholas showed her all his tricks like pulling his CI off and putting everything in his mouth except food. We also had professional pictures taken. I'll have to scan and upload those.

2010-07-28T17:40:00.004-04:00

100+ degrees out and he is wearing a winter hat.
It ties under his chin but he can still get the CI off.

This week Nicholas only had speech and OT. His physical therapist is on vacation this week and next. He did well in both. He is responding to 4 of the ling 6. He isn't responding to s or sh sounds. He has a mapping session with the audiologist tomorrow so we will see what she says about that. Maybe she will have some other idea to keep him from pulling the CI off his head too. It is really a challenge to keep it on. I don't think the sound is bothering him it is just that he knows something is on his head so he tries to get it off. On Friday he has appointments with the GI doctor and the pulomologist. Not much to report so I posted extra pictures.

Finally 19 pounds

2010-07-21T15:20:00.003-04:00

Allergy testing

He is going to hate us one day for putting a picture of him wearing a durag on here.

Nicholas had his follow up appointment with the pediatrician for his ear today. It looks great! He also gained more weight and finally hit 19 pounds. He is 19lb. 1oz. The doctor is setting up a dentist appointment for him. His teeth went back to brown. It is very weird. They came in brown then looked so much better because they lightened up and we just yellow, but they are back to brown. I don't think there is anything a dentist can do since they are discolored either from medication or from his liver in such bad shape when he was in the NICU. They aren't stained, the tooth buds were effected, so whitening products won't work. We'll see what she says. He did really well in therapy this week. His physical therapist thinks he will be sitting in about three months. Maybe it will be a birthday present to himself. His play time will be so improved when he can sit. In occupational therapy he is doing well transferring toys from hand to hand. He is using his left hand a lot more and it isn't clenched as much. His thumb is a lot looser too. It used to be hard to get his thumb to open away from his first finger. In speech we are supposed to work on six sounds called the Ling 6. They are ah, oo, mmm, ee, sh, and s. We are supposed to have a toy that represents each sound and make the sound six times then show him the toy so he can learn what toy corresponds to each sound. Both his speech therapist and his pediatrician commented on how he is more responsive with the cochlear implant. He is definitely hearing things. He can hear the microwave beep from across the house. We turn it up to level 4 this week and he goes for a mapping session next week already.

Little Stinker

2010-07-20T08:50:00.002-04:00

Nicholas has learned how to take everything off his head. It has become a challenge to keep his CI on. We have tried hats, bandannas, a buff, www.buffwear.com, durags, and toupee tape. He pulls all the covers off his head within a few minutes. The toupee tape was holding up for a few hours at a time but he just pulls that off now too. That tape is STRONG! It is hard to pull it off the few times he still has it on at bed time. The only thing that he hasn't pulled off is the durag because it is tight. I tried it on to make sure it isn't too tight, and it isn't, but I don't really like having something that tight over his shunt so we aren't using it. So we are going through a lot of toupee tape right now. Once he is sitting it will be a little better since his rolling doesn't help keep it on his head.

This week he has early intervention, speech, PT, and OT. We are also going to try to get him into the pediatrician for a follow up on his almost ear infection from last week. Thanks to TWC we don't have internet at home for more than two minutes at a time so I can't load any pictures right now.

Milk Allergy

2010-07-12T08:53:00.004-04:00

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

2010-07-09T08:52:00.008-04:00

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

2010-07-05T18:04:00.003-04:00

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

2010-07-02T19:31:00.004-04:00

2010-07-02T00:09:00.002-04:00

Bon Jovi - Hallelujah

2010-07-01T23:56:00.003-04:00

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

2010-07-01T23:14:00.000-04:00

Feet, It's What's For Dinner

2010-06-30T17:04:00.002-04:00

Slow Week

2010-06-26T17:54:00.006-04:00

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

2010-06-18T15:41:00.006-04:00

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

2010-06-11T16:22:00.005-04:00

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

2010-06-09T19:55:00.001-04:00

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

2010-06-03T17:51:00.002-04:00

Good Therapy

2010-06-03T17:42:00.002-04:00

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.

2010-05-31T15:21:00.003-04:00

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

2010-05-24T15:21:00.002-04:00

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

2010-05-20T17:26:00.002-04:00

Swallow Study

2010-05-17T14:32:00.004-04:00

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

2010-05-10T17:50:00.005-04:00

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

2010-05-03T13:20:00.004-04:00

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.

March for Babies

2010-04-26T20:17:00.002-04:00

Thank you to everyone who donated to our walk. We surpassed our first goal of $500 and our new goal of $1,000. We raised a total of $1,117 for the March of Dimes and we are so grateful for every one's generosity. Unfortunately it rained on Saturday so we had a very wet walk. We walked about half of it and the rain kept coming down harder so we turned around. Everyone got drenched except for Nicholas and his buddy Patrick. Thank you to Grandma Matthews, Matt, Misty, Patrick, Binky, Kasey, and Tammy for coming out to the walk. We still had a great time despite the rain.

Of course it cleared up in the afternoon so we went to the Sparkleberry Country Fair. They had rides and animals so Nicholas will really enjoy it in a few years.

The past week was pretty slow and he had his usual PT, OT, and Speech. He did well with all three. He is a rolling machine now. As soon as he is on the floor he is rolling. He also has 5 teeth coming in. Two top molars, one bottom molar, and two more bottom teeth in the front.

Home for 1 Year!

2010-04-20T18:15:00.004-04:00

Yesterday was the one year anniversary of Nicholas coming home from the NICU. I can't believe time went by so fast. It has been a stressful year but if it wasn't for the shunt problems it would have been a sick free year.

Over the past year:
13 surgeries

46 doctor appointments

15 EI meetings

30 PT sessions

18 OT sessions

10 Speech sessions

Countless CT scans and x-rays

He has come a long way in a year and we couldn't be prouder of him!

We are doing great raising money for the March for Babies. Thank you to everyone who has donated. We are only $181 away from making the Circle of Champions. If you are in the circle you get special recognition at the walk, in media releases and radio mentions, on the website and print material. How awesome would it be if we could be part of the Circle of Champions the first year we can participate in the walk. Last year we couldn't go because Nicholas was just discharged. We have a until Thursday morning to make it count. So please consider a donation for our team. When Nicholas was born he weighed the same as 4 rolls of quarters. How about donate $10 or a roll of quarters. Go to www.marchforbabies.org/teamnicholas or click on the link at the top right of the blog.

Therapy and a Check Up

2010-04-17T10:53:00.002-04:00

This week was pretty quiet. Nicholas had early intervention on Monday. He is due for his annual review so we are going to do that next week. He has PT on Tuesday. He wasn't happy during it and didn't cooperate very much. On Friday he had Speech therapy. His therapist wants to hold off on working on eating until he has his swallow study. I haven't heard anything about that yet so we don't know when it will be. She doesn't think he gags on food because of the texture. He will touch different textures and put different textured toys in his mouth so she thinks it is a coordination thing. She said that when he has chunky food in his mouth he might not really know what to do with it and gags rather than chews. He has good days and bad days with chunky foods so we keep trying chunky stuff. If he gags or throw up we stop and go back to a stage 2 food. She recommended a toy to get for him. It looks like the letter P so he can hold on to it and put the other end in his mouth. It has different textures and he can chew on it.

He also had a check up with his neurosurgeon. He did his usually feeling and pushing on his shunts and head. He said everything is healing well. He wants to have a CT done soon to have a baseline scan of his brain with the shunts working properly and the ventricles a normal size. He goes back in 3 months. He has never made it to the 3 month check up without a malfunction happening so cross your fingers he makes it this time.

The March for Babies is next Saturday. We are excited about the walk and have met our goal of raising $500 for the March of Dimes. Thank you to everyone who has donated so far. We can still raise more money this week so if you are still thinking about donating click on the link at the top of the blog or here. www.marchforbabies.org/teamnicholas . We will take lots of pictures at the walk.

Blogger isn't let me upload pictures again. I will try again later.

Rolling

2010-04-10T20:05:00.005-04:00

Nicholas has figured out how to keep rolling over. He has done so well this week and goes from belly to back to belly to back. I can't wait to see what he is able to do next.

He had the week off for PT and OT because both his therapists were on vacation. He had speech therapy yesterday. She mostly worked on eating. She had us roll up towels to put behind him in his high chair and they really help his position. She wants us to work on feeding him more foods that have texture or are chunky to get him used to it. He gags on chunky foods so this could be interesting. She also recommended a swallow study. He will have to drink and eat food with Barium in it during the study. They take x-rays and can watch where the Barium goes to see if he is aspirating into his lungs or if he has a delayed swallow. I don't think he will enjoy the study and probably won't eat but we will do it.

On Tuesday the home health nurse came to flush his port. She tried 3 needles before she got the right size and she still couldn't get it to flush. So we had to take him to the hospital. The nurse there had no problem flushing it but couldn't get a blood return. She said that if there isn't any blood return next month they will have to put a medication in it. He might have a small clot in the line causing it not to give a blood return.

The March for Babies is two weeks from today. Thank you to everyone that has signed up to walk and those who have donated. We are close to our goal and if you are considering a donation please go to www.marchforbabies.org/teamnicholas.

Not much going on

2010-04-05T18:32:00.003-04:00

Family at the Zoo

Big Boy Carseat

My Friend, The Foot Thing

Relief Dance, out of his Theratogs

Nicholas had a pretty slow week last week. He had EI, PT and OT. He had visitors for two whole weeks so he got lots of extra love. This week is back to normal and back to the office for Nicholas. Tomorrow a nurse is coming to flush his port and he has PT. His OT is on vacation for the next two weeks so he misses out on that. His speech therapist is coming on Friday. No doctor appointments until next week.

The March for Babies is less than 3 weeks away. Research by the March of Dimes was crucial for Nicholas' lungs when he was born 16 weeks early. We are only 25% of the way to our fundraising goal. Please consider making a donation to the March of Dimes. Even $5 is a great amount. That is about the cost of a coffee at Starbucks or lunch for a day. Every little bit helps. There is a link to our walk page at the top of the blog. Just think how much money we could raise if everyone that reads our blog gave $5.

Pictures

2010-03-29T21:38:00.003-04:00

My new shades.

I don't want anymore.

Happy boy

Hello Daddy.

Playing.

Eating a puff in my new chair.

Getting Sleepy in my play area.

This is what I like to do with my spoon while I'm eating.

Trying to eat my baseball bat cookie.

Awesome cookies that Grandma's friend made for me.

GI Update and Visitors

2010-03-25T14:08:00.002-04:00

Nicholas had an appointment with the GI doctor yesterday. He wasn't concerned that he pulled out his feeding tube since he is getting enough by mouth. He is drinking 15-20 ounces of EleCare and eating 3-4 jars of baby food a day. He is actually eating better since he pulled the tube out. We are to continue with the EleCare and same meds for 2 months then will go back for a checkup. He might let us try something besides the EleCare at that time and will do an ultrasound to check on his gallstone. I hope we can discontinue the EleCare in a few months. It smells horrible and he doesn't like it. We have been adding strawberry syrup to it and I ordered some flavor packs to try. It is also really expensive and not covered by insurance. I'm going to try to order it on Ebay and save a little. He had his last home nursing visit for a weight check. He has gained weight each visit and was 18 pounds on her scale. He was 17 lb. 7 oz at the GI so it is hard to get is actual weight on all these different scales. He is gaining so that is all that really matters. He had PT and OT this week and did great in both. He has been pulling his head up a lot like he is trying to pull up into a sit. Hopefully he will be sitting up soon. Grandma and Grandpa have been visiting from Chicago and Aunt Heather and Uncle John will be here for a visit this weekend. I have a lot of pictures to load onto the computer and will post them soon.

March for Babies

2010-03-24T10:36:00.002-04:00

http://ecards.marchforbabies.org/VJ96JB

We are walking in the March for Babies to raise money for the March of Dimes. In 1985 the March of Dimes funded research leading to the use of surfactant to treat respiratory distress syndrome(RDS). Without receiving surfactant shortly after birth Nicholas' lungs would not have developed and he wouldn't be with us today. If you are in Columbia please join our team and walk with us on Saturday April 24. If you can't join the walk, please consider making a donation to the March of Dimes so they can continue to save premature babies like Nicholas. Here is a link to our walk page. http://www.marchforbabies.org/teamnicholas

Children's Hospital

2010-03-16T16:06:00.004-04:00

We had a much better experience with the children's hospital this time. I think we are also just used to it by now too. I want to highlight some of the nice things about the hospital this past visit. Nicholas spent the majority of the second half of his six week stay on the cancer and blood disorders floor. The infant and toddler floor was full when he was being moved so he went to the 5th floor. We really liked this floor. It was a lot quieter and peaceful. The nurses were great and really showed a love for their job and patients. Nicholas was a big flirt with his nurses too.

The hospital has a program called Happy Wheels that comes every Monday. http://www.happywheelscolumbia.org/ They give each child in the hospital a free toy or book each week during their visit. Nicholas got a big box of Clipos, a toy giraffe, and three books. He also got three blankets from Child Life.

There is a music therapist who would always try to come in. We finally told her he can't hear but she wanted to come in and play the guitar for his feet. Nicholas loved it and she let us borrow a guitar for the rest of his visit. He can feel the vibrations and really enjoys it. Daddy is on the hunt for a good cheap guitar now.

PT, OT, and SLP came by to work with him a little and they let us borrow a Feeder Chair. It was a chair that he could use and not have to lay in bed all day. He eventually learned how to get his head out and try to escape it.

The last week he was there it was the Children's Miracle Network Radiothan and Richie the Raccoon, the hospital mascot, came to visit. There was also a concert by Edwin McCain on the CBD floor. Nicholas got to meet his first celebrity! He missed the animal therapy day because he was discharged.

Yesterday he had his 15 month well visit. His pediatrician is very happy with him considering everything he has been through. She wants him to go to a dentist soon, that should be fun, and said to try a baking soda toothpaste. It probably won't get rid of his brown teeth but we will try anything. He was up to 17.5 pounds and 28 inches. He was down to 16 pounds in the hospital so he is gaining weight back. She said we can us scar cream on his head to see if it helps his multiple scars. We have to follow the GI doctor on what to feed him right now and he has an appointment with him next week. He had physical therapy today and did great. His therapist doesn't think he regressed and showed better head control and weight bearing on his legs. She is also going to see if she can get us a feeder chair paid for by insurance.

He is Home!

2010-03-10T20:04:00.003-05:00

After 6 weeks in the hospital Nicholas is finally home.

5 shunt revisions
1 Externalization
1 Broviac
1 Port
1 GI scope
Diagnosed with EE
Found a gallstone
3 new medications
Temporary feeding tube
And no cochlear implant

He has done so well eating by mouth today that we haven't had to tube any feedings. A home health nurse is available to put the feeding tube back in if he pulls it out and she will also flush his port once a month. Friday he gets his last Synagis shot and his sutures removed. Monday he has his 15 month well visit with the pediatrician, only a month late. PT, OT, and speech will start again next week.

Great Progress Today

2010-03-09T18:27:00.003-05:00

Yesterday wasn't a very good day for Nicholas. The GI doctor wanted to keep him on a continuous feed and have us try to feed him by mouth. He didn't want to eat by mouth and threw up four times. It didn't make much sense to me to have him constantly fed and try to eat on top of that. He always had a full stomach so I don't blame him for not eating. Today they switched to having us try feeding him by mouth then put the rest in his feeding tube. He has done so well today. He has taken a little more than half by mouth and no vomiting. The bad thing about this is that we have to feed him every three hours around the clock, even when he is sleeping. This is how he was fed in the NICU. Hopefully he will go home tomorrow. He will probably still have the feeding tube but it shouldn't be needed for long. He also has a diaper rash or yeast infection. This new formula gives him nasty dirty diapers and has irritated him. They ordered some cream that will take care of both yeast and diaper rash. He was supposed to get his cochlear implant today. Now only four more months to wait.

Eosinophilic Esophagitis

2010-03-07T21:08:00.003-05:00

The results of the biopsy they did during Nicholas' GI scope came back on Thursday. He has
Eosinophilic Esophagitis. Eosinophilic Esophagitis, also known as EE is an important disorder of the swallowing tube (esophagus) that is different from Gastroesophageal Reflux Disease (GERD). EE is an inflammatory condition of the esophagus that is characterized by having above normal amounts of eosinophils in the esophagus. A high number of eosinophils indicates a food allergy. The GI doctor started him on Elecare which is an amino acid based formula that is easy to digest. He has been only tube fed since Friday to give his esophagus time to rest and heal. Tomorrow we are going to try to feed him by mouth and see if he will take a bottle and not vomit. We can also introduce one baby food for him to eat for three days to see if we can figure out what he has an allergy to. The biopsy also showed microscopic holes in his esophagus. He was started on Carafate for that. He had his last dose of antibiotics from his shunt revision today so he should be able to go home soon. He might go home with a feeding tube if he still won't take a bottle. We will have to learn how to insert the tube but that is better than staying in the hospital any longer. Blogger isn't letting me upload any pics right now.

2nd Shunt

2010-03-02T17:23:00.002-05:00

The full GI on Friday showed everything is normal. He continued to not eat over the weekend. They placed a TP tube on Friday to feed him. A TP tube goes down his nose, past his stomach, and into his small intestine. Peds switched him from the preemie formula which has 22 calories an ounce to Pediasure which has 30.

Since he still wouldn't eat and we exhausted all GI tests his neurosurgeon decided to try the 4th ventricle shunt again. He had surgery today. He has two shunts working off one valve. The valve is programmable but the ventricles should balance themselves out since the CSF can flow freely from ventricle to ventricle. His neurosurgeon also surgically cleaned up the incision from a few weeks ago. The incision that came open when he had the huge swelling and started leaking didn't heal like it should have. He cut away around it to get rid of any bacteria that could have entered. Nicholas has 4 big bandages on his head so we don't know what anything looks like. We can try feeding him when he is ready but there are no guarantees that he will eat. We are prepared to get a G-Tube if he needs it but have our fingers crossed that he will eat.

1 Year Adjusted

2010-02-25T19:46:00.004-05:00

Today is Nicholas' 1 year adjusted birthday. This is the day he should have been born a year ago. A lot has happened the past few days. Tuesday he got a port placed instead of a Broviac. This is a permanent access site for IV fluids, IV meds, and blood draws. It is common for cancer patients. The surgeon felt this was the best thing to do since it is so hard to find a vein and they had a hard time getting a Broviac in a few weeks ago. It sucks but at least he won't be pocked a million times each time he has a shunt malfunction. The port has to be flushed once a month and a home health nurse will come to our house to do that.

Neurosurgery has let peds take over for a while to rule out any reason besides Hydrocephalus why he isn't eating. Yesterday an ENT doctor did a scope of his throat. He commented that he probably isn't a good eater and that his vocal cords are very immature. He said they look like a newborns. He also said that it looked like he could be having some reflux. He also had an echo of his heart done yesterday. The pediatric surgeon who placed the port ordered an echo because he thought his heart looked enlarged. Everything is fine and his heart is normal size.

Today he was supposed to have a sedated full GI scope but there was an error in booking the OR so it is rescheduled for tomorrow. He has started to eat more. Today we are up to 18 ounces of baby food and formula combined. He only had 7 ounces yesterday and less all the previous days. He is more willing to eat the baby food than drink the formula. The GI tomorrow will give us an answer about whether or not he has reflux or some kind of irritation that is causing him not to want to eat. They are going to place a feeding tube while he is sedated so he doesn't feel them putting the tube down his nose. He can still eat orally with the feeding tube but he needs his nutrients so he has to get it. The G-tube has also been brought up but that will be a last resort if he doesn't start eating.

All of his stitches were removed today. If he was eating normally, we wouldn't think anything is wrong with him. His eyes have been crossed but are improving. Now I'm wondering if he really did need to power through this shunt thing and the not eating isn't Hydrocephalus related. The peds doctors said that it isn't uncommon for kids who have been so sick, had so many surgeries, and in the hospital for a long time regress and stop eating. He might just have to work his way back up. I asked for a speech therapist to see him to work on the eating. He has missed PT, OT, and Speech at home for 4 weeks in a row. He is happy and active so as soon as he eats normally we should be able to go home.

Let The Testing Begin

2010-02-23T11:19:00.002-05:00

Neurosurgery repeated the head CT, Shunt O'gram, and abdominal ultrasound this morning. Everything looks the same as it did last week. His ns is still reluctant to do a 4th ventricle shunt because his last one didn't do any good. So now they are going to do all kinds of testing to rule out any other reason why he isn't eating. They are starting with ENT and GI. He lost his IV from last Wednesday and couldn't find a vein to start a new one so he is going to have to get another central line. Hopefully these tests will be done quickly and they figure out what is wrong. Friday will be a month in the hospital. :(

P.S. I will take some pictures tonight!

Team?

2010-02-20T12:33:00.002-05:00

So 2 people from the neurosurgery team did rounds this morning. They say that they consult with the pediatric neurosurgeon but still have no clue what is going on. How can they be a team if only one doctor knows what is happening? Nicholas still doesn't want to eat so we were feeding him by syringe. He kept 4oz of formula and 4 oz of applesauce down yesterday but threw up 1 oz of formula this morning. The "team" said his CT is fine and asked if peds is following him; even though his actual neurosurgeon told me yesterday that by looking at his scans the 4th ventricle needs to be shunted but he is reluctant to do that since we already have. So the "team" is asking for peds to figure out why he won't eat and is vomiting since his scan looks good. So we'll see what happens and if peds orders more tests, xrays, whatever of his GI tract to find out why he is having issues. Maybe they will diagnose him with the stomach flu again like they did during one of our ER visits when he really had a shunt malfunction. Dr. Mom thinks that he probably needs the 4th ventricle shunt and the not eating and vomiting is Hydrocephalus related and not GI problems. The GI doctor looked at the ultrasound of his gallstone and said it is very small and he isn't showing symptoms of that being a problem so he started him on meds.

Waiting

2010-02-19T15:35:00.002-05:00

I just had a talk with Nicholas' neurosurgeon. He still wants to try and wait this out. He said that people usually adapt to an over draining shunt. He looked at the Theratogs and said that those would work for wrapping his stomach. By wrapping his stomach, we are putting pressure there which will cause cause less pressure in his brain thus slowing down the shunt. He said by looking at the scans, the obvious answer is the 4th ventricle needs to be shunted. He is reluctant to do that since he already had one and he feels it didn't do him any good. He said he is willing to wait up to a month for him to adapt but will do something sooner if he continues not eating. He will be in the hospital as long as he needs fluids. He said that he could change the valve in his current shunt but that he should adapt to it and another surgery increases his risk of a shunt infection. If he gets a shunt infection the shunt has to be removed then he will be treated with antibiotics and the shunt will be put back in. So it looks like we will be here for a while while we wait.

Observation

2010-02-18T14:16:00.002-05:00

Nicholas was admitted to the hospital for observation yesterday. They did a CT, x-rays, and an abdominal ultrasound. Everything looked good. The shunt is working and his ventricles look good. His neurosurgeon wants to try to power through this. He doesn't want to do another 4th ventricle shunt because he doesn't think it did him any good when he had it before. They kept turning it up until it was basically turned off so he most likely didn't need it. The shunt he put in last Friday is not programmable and it is the shunt with the least resistance and highest flow, meaning it is draining the most CSF possible. The nsg is thinking it might be over draining a little. He ordered an abdominal binder to wrap around his stomach and put pressure on the tubing to try and slow down the release of fluid. He has eaten and not vomited but he still isn't right. He seems uncomfortable and in pain. So we are just waiting to see if he will get past this without another surgery.

While they were doing the ultrasound they found a gallstone. Gallstones can happen in preemies for a lot of reasons like prolonged use of TPN and Lasix. He was on both of those for a long time. A pediatric surgeon looked at the ultrasound and said that it shouldn't require surgery to remove the stone or his gall bladder. He will have a consult with a GI doctor today and will probably be started on a medication to help break up the stone.

Back At The ER

2010-02-17T11:07:00.003-05:00

We took Nicholas back to the hospital this morning. They did a CT and x-ray. His lateral ventricle looks good but his fourth ventricle is enlarged. The fourth ventricle is where his second shunt was that was clamped off then removed last Friday. They are having a hard time finding a vein for an IV so someone from the NICU is coming down to try. We are waiting on his actual neurosurgeon to come talk to us. He isn't on call today but is there so sometime between now and next week we might see his doctor. He will most likely have to get the second shunt put back in the fourth ventricle.

I just got an email from MUSC. His new cochlear implant date is June 9.

Home but I Think We Have a Problem

2010-02-16T18:08:00.002-05:00

Nicholas was finally discharged last night. We waited all day for neurosurgery to show up to discharge him then we had to wait for someone from pediatric surgery to remove his Broviac. We got home around 6pm and he was so happy to be home.

He just threw up so I'm waiting on the neurosurgery nurse practitioner to call me back.

New Shunt

2010-02-13T14:26:00.003-05:00

Nicholas had his new shunt placed on the left side yesterday. His second shunt on the right and the external shunt were both removed. He is doing well so far. He had a CT this morning but we are still waiting on neurosurgery to do rounds today to let us know if the scan looked good. He will probably move out of the PICU today too.

Bad news, his cochlear implant has to be postponed. His surgeon at MUSC said that he can put the implant on the right side rather than the left but he wants to wait 1-2 months after the shunt removal. They said it will be June but I do not have a date yet.

We also got about 6 inches of snow yesterday! Poor Nicholas had to spend his first big snow day in the hospital.

External Shunt

2010-02-09T14:06:00.002-05:00

Nicholas had surgery again yesterday. They removed his lateral ventricle shunt and made it a temporary external shunt. He has a catheter coming from his head to a collection tube and a bag that is hanging on an IV pole. They are planning on removing it on Friday and placing a new shunt on the left side of his head. His fourth ventricle shunt will also be removed.

He seems to be happy overall, just bored. One of the first things he did when he got up to the PICU yesterday was pull the catheter in his head. That was scary. I got his hand off of it and then he grabbed his IV tube and put it in his mouth. He has been trying to get the leads off his chest and playing with the dressing on his head. Such a boy!

Back to Surgey Tomorrow

2010-02-07T14:37:00.004-05:00

Friday night Nicholas' neurosurgeon tried pushing in the big bubble of fluid to see if it would go down with pressure. It didn't so he decided not to wrap his head and to just wait and see what happens with the swelling. He has been eating well and keeping it down. He has also been happy and active. He isn't showing signs of a malfunction but we know something is wrong because of the swelling.

Yesterday his incision started leaking fluid. The surgeon on call came and drained a lot of fluid out and added a few more stitches. He also wrapped his head. Nicholas got the wrapping off twice already.

Today they discussed and came up with a new plan since the swelling came back after the fluid was drained. So tomorrow they are going to make an incision in his abdomen and pull the tubing out to see if they can get it to drain. If it doesn't drain they are going to do an external shunt temporarily. Then they will move the shunt to the left side of his head and get rid of his fourth ventricle shunt.

This will put the shunt where his cochlear implant is supposed to go. Everything will be removed from the right side so the implant should be able to go on the right. That surgery might get pushed back because of all these shunt problems.

Still Not Right

2010-02-04T16:51:00.002-05:00

Tuesday afternoon they moved and replaced Nicholas' lateral ventricle shunt. He also had to get a Broviac, central line, because all his veins are full of scar tissue and they couldn't get an IV in. I'm not thrilled that he has the Broviac but it's good because they don't have to stick him a million times to get an IV in. After surgery his head looked great and the swelling had gone down. Wednesday the swelling came back but he was eating, awake, and active so it seemed ok. The neurosurgeon said that when they go in to fix the shunt any CSF that couldn't go down the shunt escapes to the path of least resistance which could be in between the tissues in his head. He said he wants to watch it and hopefully it will go away on its own. He also said he could wrap his head to add pressure to force the fluid down. His new shunt is programmable so they also changed the setting to release the fluid faster. Today he has been extra sleepy and started vomiting again. They told me that they want to wait and see if he vomits again before they will order a CT. I tried to tell them that he isn't a puker and only throws up when he has a shunt problem but they still wanted to wait. He threw up half an hour after they left so his nurse called and they ordered a head x-ray to check the valves. So, they are thinking that they either need to reprogram the shunt again or open up the fourth ventricle shunt again. This is so frustrating! It should have been one surgery and a 2 day stay but it turned into 3 surgeries and the possibility of another and a week stay so far. I just can't believe they can't get this right.

Surgery #13

2010-02-02T16:31:00.002-05:00

Nicholas is back in surgery. The swelling and vomiting never went away so they did another CT and a shunt o'gram (x-ray) this morning. His right lateral ventricle was very enlarged. They are thinking that all the fluid under the skin (his head and face and the big goose egg where the incision is) is from CSF going around the catheter and up the burr hole and escaping. So they are going to make a new burr hole and move the shunt about half an inch back. The doctor said that when they keep doing revisions sometimes they have to make a new burr hole because the hole just gets too big from all the work done in it. This one one of the three options they gave us on Sunday. For now they are going to keep the 4th ventricle shunt clamped off but that could change in the future. Hopefully this will fix everything.

His appointments at MUSC were changed to March 4. His cochlear implant surgery will still be on March 9.

Another surgery

2010-02-01T12:25:00.003-05:00

Nicholas had another CT on Saturday night. The ventricles looked fine so the neurosurgeons really didn't know what was going on. So they came up with three options. Go in and clamp off the second shunt since all these problems seem to have started after he got his second shunt, go in an put in a bigger valve or go in and make a new burr hole. We agreed to do the least invasive one which was to clamp off the second shunt. After the surgery the neurosurgeon came to talk to us and she said he was already moving around and the swelling was less firm meaning it had started to drain. He was put in the PICU and seemed to be doing a lot better. Last night he started drinking formula and kept it down. He has been awake and looked good. We just gave him another bottle, he drank less than an ounce and threw up. So we have no idea what is going on now. All the neurosurgeons are in surgery right now and will be in to see him sometime late this afternoon.

We rescheduled his appointments at MUSC for Feb. 18. His audiologist did not say that will push back his surgery so I'm assuming he will still get the CI on March 9.

Shunt Revision

2010-01-30T13:08:00.002-05:00

We took Nicholas to the ER yesterday morning. Thursday night he was up all night screaming and threw up Tylenol. I had been worried about his shunt for over a week because of a little swelling but he didn't show signs of a malfunction until Thursday night. The shunt in his lateral ventricle wasn't working and they were able to get him into surgery yesterday afternoon. His neurosurgeon was out of town so a different doctor did it. She said that the valve and the catheter weren't working. She also said that the valve not working is very rare- only our child. She said that when she got down the burr hole there was some scar tissue and under the scar tissue there was a pool of CSF that just kept pouring out because it couldn't drain into his body. She replace the valve and catheter and said if all goes well he could go home on Sunday after 48 hours of antibiotics.

He slept all day and night yesterday. He lost both his IV's and they had 4 people try to get a new one in and after sticking him about 10 times they gave up. One nurse mentioned that he might need a central line. I said he isn't getting a central line for antibiotics and there has to be something he can take orally. He also vomited twice last night after drinking Pedilayte. They called a doctor and he consulted with neurosurgey. The decided to give him some medicine to stop the vomiting and to do oral antibiotics. This all took about 3 hours to do and he was finally left alone by 3am.

Today he is still sleeping- which isn't a good sign because that could mean something is wrong with a shunt along with the vomiting. He vomited again this morning and they did another CT. They gave him a shot of antibiotics and won't do an IV unless it is needed for something besides the antibiotics. He still isn't peeing well and is little swollen. We are waiting for neurosurgery to do their rounds and tell us the results of the CT.

Stupid Shunt!

2010-01-29T08:47:00.003-05:00

Guess where we are. Guess what appointment we will miss on Monday. Guess what surgery won't be on March 9. Poor kid has the worst luck.

CI Surgery Date

2010-01-24T17:55:00.003-05:00

This is how we found Nicholas this morning. I broke the ties on the bumper changing his sheets so we took it out since he would pull it on top of himself. Guess I need to sew the ties back on.

Nicholas' audiologist emailed me and asked if we can do his cochlear implant surgery on March 9. I told her yes! I wasn't expecting the surgery to be until at least April so this was a nice surprise. We go back to MUSC Feb. 1 to meet with the audiologist, the surgeon, and a speech therapist.

Last week he had OT and a speech evaluation, PT was canceled. The speech therapist is going to work on eating right now until he gets the implant. Hopefully she can help him with table food since he gags and vomits every time we have try table food. His favorite is still apple/blueberry and yogurt. One of the other preemie moms gave me the idea of pudding so we are going to try that too.

This week his PT session is going to be with the Theratog guy. His therapist will be there too and they will decide if we should keep the straps like they are now or if they want to try a new configuration. He is supposed to have Speech right before PT but we forgot about the Theratog appointment so we have to call the speech therapist to see if she wants to do a half session or start next week. He is going to have speech and PT back to back but it should be ok since speech isn't physical work. He also has early intervention and OT.

Eye Appointment

2010-01-20T10:14:00.002-05:00

Nicholas had a good eye doctor appointment yesterday. These appointments are usually horrible because they have to dilate and numb his eye and use a torture device to hold his eyes open. Well they only dilated his eyes and didn't use the torture device. He is a little near sighted and his left eye is a little worse than the right but no need for glasses right now and we don't have to go back for a year. His left eye is the one that had more laser when he had his ROP surgery so that makes sense that it is worse than the right eye. They also looked at the turning in of his right eye and said that it isn't bad and should correct itself. He also has Horizontal Nystagmus, dancing eyes, which should also correct itself. Both the turning in of the right eye and the nystagmus is nothing new. We have noticed both ever since he came home from the NICU. They also checked his optic nerve. The doctor said that they do this for kids with Hydrocephalus because they can check on the shunt. If there is swelling behind the optic nerve it usually means there is something wrong with the shunt and they will call the neurosurgeon. Nicholas didn't have any swelling and it was nice to have a quick shunt check.

2010-01-18T14:45:00.004-05:00

This past week Nicholas had early intervention on Monday. He showed off for Beth and did a lot of grabbing and playing. She was really happy to be able to see him do everything. He is usually hungry or tired during early intervention and doesn't want to do anything. We also discovered during EI that he likes when Mark lifts him up above his head and brings him down quickly. It makes him laugh and smile. I'm trying to get a video of it but he doesn't laugh every time. On Tuesday he had PT and did well. Wednesday he had his monthly Synagis shot first thing right before OT. Surprisingly, he did really well during OT after getting the shot. This week he has PT, OT and a bad eye doctor appointment.

Pictures and Video

2010-01-10T11:32:00.004-05:00

14 Months Old!

2010-01-08T15:35:00.004-05:00

Wow, I can't believe Nicholas is 14 months old. Time has just flown by since he came home from the NICU. This week was originally going to be busy with an appointment every day but we ended the week with only 2 appointments. On Monday, early intervention was rescheduled because the EI's daughter was sick. Nicholas can't be around anyone who is sick or has been around someone that is sick. Tuesday he had PT and his therapist was really happy with him. She said that she can see a huge improvement in his trunk and neck with the Theratogs. He keeps his head held up much better when he is sitting and he can even hold himself up on his tummy for a few seconds before falling. Wednesday he had OT. She was very happy with him too. She worked on grabbing for toys while sitting and he did well with that. She also had him hold a little block in each hand and showed him how to bang them together. He held them for a little while then dropped them. She also wants us to use a massager on his left hand every morning to wake the muscles up. He keeps that hand in a fist when he is relaxed. He will use it when he is playing and it is easy to open but he definitely likes his right hand better. On Thursday he was supposed to have an appointment with the Theratogs guy but he had a death in the family so that was rescheduled. Today he had an appointment for his monthly Synagis shot. That had to be rescheduled for next week because of insurance. Mark's insurance started this month and it is the primary insurance so they had to get pre-approval for the Synagis shot from BCBS. They called like 10 minutes after Mark left he office and had approval but wouldn't let him come back in for the shot. So now he has to get it next Wed. before OT.

The Theratogs are definitely helping. He is getting used to them more and wears them from about 7 am to 6pm. When we take them off he does what I call the I'm free dance. The hearing aids don't seem to be helping. He also learned how to pull them out. They also got clogged with wax so even if they did help him hear anything he wouldn't have been able to with a wax clog. He is doing well with eating jarred baby food and prefers fruits. His favorite is apple/blueberry. He is not a fan of green veggies or meat. We gave him a turkey kind the other night and he hated it so we gave it to the dog. Bella was eating it and Sydney came by her and Bella picked the whole jar up and took off. We took it away from her right away but that was really funny. Puffs have been more of a miss than hit. One night he ate 5 in a row but then earlier this week I gave him a half of one and he gagged an threw up. Mashed up table food causes gagging and vomiting too. He has 2 top teeth coming in. One is much further along than the other. He also has 2 teeth on the bottom and all 4 of them look to be a nice shade of yellow/brown. Prolonged use of TPN, the nutrition he was on in the NICU, can cause teeth to be discolored. Of course this would happen to him. His toy penguin has been yelled at a few times for being in his play area. Both Mark and I have mistaken the penguin for our cat Zorro. Poor Zorro must hate the penguin because he keeps getting in trouble for looking like a penguin. That's about all for now.

Blogger isn't letting me upload any pictures so I will do that later.

Hearing Aids

2010-01-03T14:19:00.003-05:00

Nicholas got his hearing aids last Thursday. We can't really tell if he can hear anything or not. We have to do a hearing aid trial before he can get the cochlear imlant to prove that even with hearing aids he doesn't have enough usable hearing to not need the implant. We turned the radio up really loud in the car on the way home and he looked like he might have heard it but he could have felt the bass vibration too. When we got home we banged pots and pans together and he looked up each time. We tried it again the next day and he didn't do anything so who knows if he can hear a tiny bit or not. We got back on Feb. 1 to meet with the audiologist and to go in the sound booth with the aids on, he also has to have a speech evaluation done at MUSC and we will meet with the surgeon too. Hopefully we will have a surgery date when we are done with our next visit.

This week he has Early Intervention, PT, OT, an appointment with the Theratogs guy and a Synagis shot.

Christmas

2009-12-27T14:51:00.004-05:00

We had our first Christmas as a family at home this year. It was so much better than last Christmas because Nicholas is home and healthy. Last year he was having a hard time recovering from surgery and we weren't sure if he was going to make it. It was a great day and between Mommy, Daddy, family, friends, and Santa, Nicholas was spoiled. Out of everything he got his favorites are a new grabby ball, a stuffed hedgehog and a blow up penguin.

This week he has PT, OT and he gets his hearing aids. We got a ton of rain on Christmas and there was a huge puddle in the backyard. Goofy Bella was afraid of it.

Theratogs

2009-12-18T16:45:00.002-05:00

Nicholas got his Theratogs today. The theratogs are a nylon and spandex undergarment. It is similar to the material a wet suit is made out of. Nicholas has low tone in his truck which means his back is very weak. His back in in a thoracolumbar kyphosis position which is basically curved forward. The orthotist explained that if he stays in that position his vertebrae will move and become wedged with the top of the vertebrae moving downward and the bottom of the vertebrae moving upward. That is bad and hopefully the Theratogs will help correct that. It is a vest and a set of straps. One strap goes from his shoulders down to his thighs and it pulls his back into an upward position. The other set of straps goes from his shoulder blade to the bottom of his back to correct and help the muscles in the middle of his back. Theratogs are a slow correction device and it can take about 4-6 months to get full improvement. The orthotist estimated the his back was 12 degrees straighter with the Theratogs on. He said that as little as 5-7 degrees straighter is good so 12 degrees is great. He has to wear them for 4 hours a day for the first few days then when we see his physical therapist on Tuesday she can decide if we should increase how long he wears it.

This week he had early intervention, PT and OT. He did really well during both therapies. He rolled from stomach to back for the first time during OT. He also went to the Pulmonologist. His lungs sound great and he goes back in 3 months. The doctor wants to keep him on Flovent until his next appointment then he might not need it anymore.

His hearing aid appointment had to be rescheduled because his audiologist has a death in the family. His new appointment is Dec. 31.

Dad's message of inspiration

2009-12-17T22:21:00.002-05:00

Hello everyone. This is Dad. I don't really talk much, my wife is the one that does the great work to keep the blog up to date. Earlier this evening, Corinne and I were reminiscing the past year and everything our son Nicholas has been through. Anyone that knows me, knows how proud I am of my son, and how much I love him. We have been through hell in the NICU with Nick and we made it. This is a little message to all my fellow premature parents struggling to keep the faith, and their sanity

I am writing today to I guess give a message of inspiration of hope, and never giving up. From previous posts I am sure you have seen everything our son Nick has been through. It has been a really hard year but we pulled through. I remember the countless hours in the NICU, loss of appetite, headaches from worrying so much, the endless nights of not sleeping, or falling asleep next to his isolete. Once I even fell out of my chair after I feel asleep, and hit my head on the isolete stand. So many doctors and nurses talking to me I lost track of who did what. For those of you that have a child, or children in the NICU just know you are not alone and your child needs you more than ever. Nick was given slim chance of living and has had a few close calls. From given 72 hours to urinate, and stabilize his blood pressure, to flatlining. Ten surgeries, being deaf, chronic lung disease, perforrated intestines, category 4 brain bleed, and the list goes on. There were times I almost gave up hope, but everytime I saw him I knew I had to keep fighting and never give up hope. SO DO YOU. NEVER GIVE UP!

I think finding out he was deaf was the hardest thing. I mean, "Why Us?" What did we do to deserve our son to be this sick, and have these problems. Never have my emotions been put to the extreme test than learning our son was deaf. We all live in this perfect bubble thinking that this will never happen, but when it does it is how you deal with it is what makes you stronger than ever.

I have become a huge supporter for disabled children from all aspects. Seeing children in the NICU without parents that cared enough to show up, or even acknowlege their child will literally make you sick to your stomach. Yes, a lot of babies NEVER get visitors. I can't fathom what that must be like to not have a soul and abandon your child. Ugh! That makes me sick to my stomach.

For the parents just beginning the NICU experience, or that have been there a while and just need a little inspiration, allow me to say, "I do not know if everything will be O.K. I do not know what the long term effects of your baby my be. I do not know what will happen. " I do know that you must never give up. NEVER GIVE UP! I know you are tired from working all day, or all night, then having to make that drive to the hospital....DO IT! DO NOT always listen to the Doctor's when they tell you what horrible things that may happen to your child. It is their job by law to give full disclosure, and some have terrible bed side manner. Read to your child, touch your child, let your child know you are there. Most important...DO NOT give up hope. I know you have those days where all the other children are doing great and yours is doing horrible. That was us most of the time. almost every week we got bad news.

Also know this. When your child makes it home you will know so much about the care of premature children, and operating the machines you are ready to start working in the NICU. I guess I will quit rambling. the words didn't come out the way I wanted, but I just wanted to give a message of hope. Even when your child gets home that is even more important than the NICU. You may have endless doctor appointments like we do, and constant fights with the insurance companies. It will not be easy. It will be 10 times harder than a normal baby. You will get tired, frustrated, and discouraged at times. DO NOT GIVE UP! You will be amazed what you can do.

Thank you for reading my unorganized babble. I just want to give back and help those who are where we once were. DO NOT GIVE UP, and BELIEVE!!!!!