Tuesday, January 29, 2008

Nebulizer treatments

We had to restart Jack's Pulmicourt (and inhaled steroid) and his Xoponex (a bronchodialator) today. We haven't had to do a neb in almost 6 months so Jack in not used to them anymore. Jack has had a cough for weeks now and as of yesterday it is accompanied by a wheeze. The doctor wanted us to restart nebs and also do a round of Prednisone (and oral steroid). Jack protested quite loudly this morning when I turned on the neb. So, as any good mother would do, I turned on his favorite tv station, Noggin. I at least got him to tolerate the medicine blowing in his face. Tonight, as Philip was trying to give the treatment, I caught some pictures of him. His favorite, Moose, was on and he was quite mesmerized!

Saturday, January 26, 2008

Jack took his first steps!!!

JACK TOOK HIS FIRST STEPS TODAY!!!!!!!!! It was incredible! He's been doing something we call "controlled falling" where he takes a step or two as he's falling but today he actually took 4 very controlled steps before he went into his controlled falling!! Philip had him standing up and Jack was trying to walk to me when he did it! We both just looked at each other and asked "were those steps??" It took us a minute to figure it out and realize what had happened! We tried it again and Jack did the same thing! Then, we got out the video camera and filmed him doin it over and over again! It is such a beautiful thing to watch! Then, we got out the digital camera so we'd be able to post it on the blog. By this time he was pretty tired but we got at least 2 good runs and a cute little dance move (which is also a first. He's never stood up like that before). I can't believe our little man is growing up!

Thursday, January 24, 2008

Yay! Jack is legally blind!!!

I know that is a very strange title. You may be thinking, "What kind of mother would be excited about that?". Well, let me tell you......ME! Now that Jack is finally labled he can get vision services to help him utilize what vision he has. We found out today that he has an upper field of vision loss, which we knew, but now it is oficial. We also found out that he is farsighted. They said he is 20/400. It was interesting because the doctor put the lenses that Jack will need to see clearer on me and showed me how much correction he really needs. When I looked through the lenses the whole room became blurry and my eyes had to work really hard to try to get things in focus. My eyes couldn't even work that hard.

They are going to be sending us a pair of glasses with correction and transition lenses. We are going to work slowly with Jack and at first try a few minutes a day and then work up to him wearing them all the time. It will probably take a while but the doctor said that would be fine. He doesn't want to pressure Jack into wearing them all the time too quickly. We did not get to pick the frames but the ones they tried on him were pretty cute. I'll be sure to post a picture when we get them....of course Jack will probably be screaming but at least you'll get to see the glasses!

We also had a feeding evaluation yesterday. Jack refused to eat anything! He'd just shake his head no if I introduced any food to him. Of course this means we got no new information and we have to make another trip up to Syracuse to try again in 3 weeks. We did find out that Jack is now 32 inches long!!! He's so tall!! He's just growing up so fast. It's sometimes hard to believe that the tiny baby I held a little over a year ago is now this rough, tough, little toddler telling me no no no!

Today is our therapy free day so we are going to enjoy it by playing and running errands! We hope all of you have a nice day!!!

Tuesday, January 22, 2008

ENT Appointment today

Jack Had his appointment with our ENT yesterday. After waiting and waiting and some more waiting we finally got to see the Dr. He said Jack still has fluid behind his eardrum and he still needs tubes. He said we need to not cancel the surgery this time. I guess it does need to be done.

We got to see lots of friends while we were there! We met up with Lori and Madison at the Dr.s office and after our appointments we went back to the NICU to visit all of our nurse friends. I took Jack's push walker with us and as the nurses started to come out I put him down and he literally ran to them! It was so cute!!! Every time we've gone to visit before Jack has cried until everyone goes back inside. Not this time! Jack was a happy, cute, little man! I love going back and seeing all the people that took such good care of him.

After visiting the NICU we went to the Mall with Lori and Madison. We had lunch and went to the Disney store and The Children's Place (again). Lori and I had a wonderful lunch because both Madison and Jack fell asleep on the way to the mall and slept through most of our meal! When I took Jack out of the van and put him in the stroller he stayed asleep but he kept trying to sit up. By the time we were seated at the restaurant He was slouched over the strooler and completely out! Luckily I had my camera at the time and was able to capture it! I love how he only has one mitten on!

Sunday, January 20, 2008

New Backpack

We've been looking and looking for a little backpack for Jack to carry his pump in. The one that came with the pump would be big for an 8 year old so there was no way it would fit my tiny boy. We bought a bag at pottery barn that was designed to be hung over a chair to collect Christmas cards but he outgrew it in about 3 weeks. We finally found one made by Samsonite and ordered it online. It came on Friday and it is so stinkin cute!!! Yesterday we went to the fabric store to buy the supplies to adapt it with a chest strap. We put it on him this afternoon and he, as we expected, got very upset. We kept it on him for about 15 minutes and after about 5 we got him distracted and then he tolerated it. About halfway through we put the pump in the bag. He was a little off balance at first but he got the hang of it. We had to take it off when he started to crawl away though because the backpack slides over to one side and it pulls him over!

GQ baby

I don't like to dress jack like a little boy. I like to dress Jack like a little man! On Wednesday, on our way back from the pediatric surgeon in Rochester, I stopped at the outlets. Jack had pretty much outgrown his winter wardrobe already so I was trying to get some good deals on larger clothes. I went in to The Children's Place and they were having a sale where if it had a sale tag on it you took an additional 50% off. Then, I had a 20 % off coupon and I got 10% off for being a card member! In the end I got to take 80% off the sale price!!! I got a huge bag of clothes for $60! Jack is set for the rest of the winter and spring! (provided he doesn't have another huge growth spurt!) I really wish I could have bought a wardrobe for next winter but I learned that lesson when I was pregnant. I bought Jack a summer wardrobe for a typically developing 10 lb baby. He came out at 5 lb and is not a typically developing baby! I wasted about $100! Oh well...live and learn. Anyway, The clothes are still a little big but this sweater fit pretty well. He was soooo cute! He's my little man!

Thursday, January 17, 2008

March of Dimes

My friend Crystal has made this video to raise awareness and funds for the March of Dimes. They help premature infants all over the country. I hope you enjoy the video.


We've really been exploring with art recently. Our OT brought fingerpaints but Jack didn't take it very well. We, however, made a beautiful picture. We're going to keep trying fingerpaints at least once a week until he can tolerate the texture.

Yesterday I bought Jack an aquadoodle for the wall (thanks for the suggestion, Amy!). We put it up and Jack LOVED it! He can go right over to it and make marks. When I first introduced him to it he squealed and grabbed the marker. For those of you who don't know what an aquadoodle is, it is a big piece of paper that turns blue when it is marked with water and then it is back to normal when it dries. It is going to be a very fun toy!

Monday, January 7, 2008


I've been tagged (Thanks Ellen!!!!) so here are 5 things you don't know about me!

1) My husband and I have known each other since kindergarten and it wasn't until I moved away and had been gone for 3 years that we started to date long distance (over 1,000 miles!) We dated long distance for 3 years before we got married!

2) I Hate sand! Just thinking about it makes me cringe.

3) I've always wanted to have my own bakery. I love to create my own recipes and I have chocolate chip cookies that are famous in three cities!

4) I attend a book club but haven't read a book since Jack was born.

5) I was once in a beauty pageant but lost....(I was 5)

I'm now going to tag MK, Candi, and Jacob

Also, I cant help but post this picture of Jack I took today. He's so cute and he loves having his picture taken!

Ok, so I posted two. How could I not? He's just so darn cute!!!


On New Years Eve we went out to dinner with some friends and as usual the hostess brought a children's menu and crayons. We try every time to see if he'll color but usually the crayons go right in his mouth. This time, however, he watched me color and he took the crayon and made the most beautiful markings! We were so proud of him! This weekend I went out and bought the Crayola baby crayons and markers. They are shaped like eggs so it is easier for little hands. The markers don't have lids and they are supposed to be great for babies. We tried the crayons first and he did a few passes on the paper before throwing them on the floor (breaking one in the process). We gave him the markers next but they were a disaster! Jack got the marker part in his mouth and within a second his whole mouth was green! I think we'll have to wait a while before we try again. However, our OT is bringing fingerpaints on Thursday! We'll see how that goes!

Thursday, January 3, 2008

Mommy's Little Helper!

Jack was quite the helper today. He was off the pump, and therefore crawling all over the house, while I was trying to get the dishes done. As soon as I opened the dishwasher he crawled right over to help. I took all the dangerous silverware out immediately and left him with some rubber spatulas, wooden spoons, and big serving spoons to play with. He stood there for quite a while as I put away the clean dishes. He kept putting the untensils in his mouth and then tried to put them back in the basket. It was really cute!