Good Therapy

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

It Was a Busy Week.

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

Busy Week

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

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

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

Peek-A-Boo

Swallow Study

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

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

Cochlear Implant Pre-Op

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

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

Almost went to the Hospital

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

Nicholas did really we with his therapies last week. His OT brings an exercise ball for him and lays him on his stomach on it. It really works his neck and trunk muscles because if he wants to see something he really has to lift his head up since it in lower than the rest of his body on the ball. She is also looking into getting him a brace for his left arm. He doesn't use that arm much and keeps his hand in a fist. He would wear the brace at night to keep his hand open. She is also going to try to get a Big Mack Switch for him to try. It is a big button that attaches to a toy and he touches the button to make something happen. She said the company usually will let patients test the products before buying them so she is going to see if we can get one to try.

He had an appointment with the Pulmonologist, lung doctor, on Thursday. He took him off of FloVent. His lungs sound great and he isn't on any meds for them anymore. He is still on the FloVent for the GI doctor so we still have to give it to him. FloVent, which is an inhaled steroid, is supposed to help heal his esophagus.

March for Babies

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!

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

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

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

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

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

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

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

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!

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

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

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

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.