Thursday, March 31, 2011

We Have Been Busy

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. I will add pictures later and try to update more often!

Tuesday, March 8, 2011

Finally, An Update!

Such a happy boy!


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. Thank you to everyone that has donated already!