Monday, April 26, 2010

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.

Tuesday, April 20, 2010

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 or click on the link at the top right of the blog.

Saturday, April 17, 2010

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. . We will take lots of pictures at the walk.

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

Saturday, April 10, 2010


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

Monday, April 5, 2010

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.