New pics

I have been getting "crap" from my husband and friends that Josh needed a haircut. In my defense, it took us such a long time to get hair and he had those CUTE curls, I didn't want to cut them off. But I decided last evening that at least trimming his bangs so that he could see was in order.Before Christmas..... look at those curls!

Before the cut

After the cut... not the best pic and the bangs look a little better when it's parted on the side LOL but you get the picture. I'll get a better one later.

More quilt

Back of the blanket... Josh's room is an ocean green/blue color. Matches really well!

Nana's tag

Quilt

Background: For Joshua's shower, I had everyone draw something on a quilt square. I provided the markers and some templates but everyone could do what they wanted. A friend of mine "Nana Jill" had volunteered to make the quilt. It took about a year and a half before we finally made it, but it was completed. I may have to make another little one if we find some other quilt pieces.

So without further adieu...

More in the next upload. For some reason, blogspot won't let me upload more than 5 at a time!

Life as we know it.. has ended!

Walking!

Josh started walking at Grammy's but for some reason, when he got home, all he wanted to do was crawl. We remembered that at Grammy's she gave him a spoon to hold onto.. (it gave him the feeling that he was holding something). Behold! As soon as we gave him a spoon, he was walking all over the place. Take the spoon away.. and he would crawl again. some babies have stuffed animals, some have blankies, mine... a spoon. This is Josh's Woobie. Now he is walking all over the place. It only took a few days with the spoon for him to realize that he can do it without. But it was SOOO cute!


We found out yesterday (finally) that Josh was approved for a second season of Synagis. Every preemie mom knows what this is. It's basically a booster for his immune system. It's not a vaccine and he has to get the shot once a month for the whole season, but it gives him some extra antibodies to help fight off RSV. He could still get it, and we are vigilant about handwashing, Purell and keeping him away from crowds but this will help. the part that sucks is the bigger they get, the more they get, so this could be 2-3 shots per month to get the correct dose. He is not going to be a happy boy, but it's for a good reason. He will forgive me later!

That is all the news. We are doing fine. He is a normal active baby for the most part. He gets into EVERYTHING, loves the kitties water dish (and the water in the dehumidifier), and will get into anything he can. Love the normalcy!

Hugs and kisses to all. Have a great holiday!

We have so much to be thankful for!

you know you are a parent when......

Scene: In bed... Josh has just fallen asleep (haven't yet carried him to his crib). We are watching Sprout TV and Dragon Tales is on.

Me: You can change the channel now, Josh is asleep.

Dave: Yeah, I know. But I haven't seen this one yet!

And we continue to watch Sprout TV until the end of Dragon Tales.

Halloween pics

We took Josh around the neighborhood but didn't do any trick or treating since he doesn't walk much on his own, can't say Trick or Treat or eat the candy. He just looked cute!

November 5, 2008

Hi everyone. I have been trying to upload pictures but for some reason, it has been failing. I will try again later. We have apple picking and halloween pics to share!

We went to the eye doctor again. His lazy eye isn't any worse but no better either, so she will see us again in 6 months. Right now, we are just watching it to see what it's going to do. His eyesight is pretty sharp... he can see something on the rug from across the room.. you mommy's know, that little thing that the vacuum didn't pick up. The rug looks perfectly clean and it's the baby that finds that little item and tries to eat it? That's Josh!

We haven't heard for sure yet, but I am sure the insurance company is going to deny Synagis shots for this second season. My pedi told me that according to the documentation, he is not eligible because he hasn't been treated for Chronic Lung Disease for the last 6 months. Stupid because he is still a 24 week preemie, but the insurance companies win usually. You can appeal all you want, but they are only going to pay for what they think is needed.

My nephew was admitted to the hospital last night with pneumonia. I am not sure how he is doing. As of last night, his breathing was still sucky. So even a big full termer can get sick.. why not prevent the little man who still has lung problems (but is not being treated) from all this crap that goes around...

Josh is almost walking by himself. I have been saying that for months. Outside, he will walk on his own, but in the house, he wants to hold onto stuff still or crawl. I guess it's quicker and less work. He can stand up on his own without holding onto anything and will stand for a few minutes but he still doesn't have the courage to just do the walking without holding onto stuff. We work with him all the time, but he is going to do it when he is ready.

Everything else is coming along. He is a funny, funny baby. Sings all the time. Says about 8 words.. mama, daddy, bye, hi, arran, all done, up... I think that's it! We keep working on that too but once again, he is going to do all of that when he is ready.

I'll try and upload pictures again later on this evening. Josh was a puppy for halloween. What a cutie!

GI doctor

The visit to the GI doctor went well. She is pleased with Josh's progress and has discharged us (unless we have any other issues). Since we took Josh off the Prevacid and he seems to be having no reflux issues, there is really no reason to see her. That is what we were seeing her for originally. He still has a few "poopy" issues, but she said to continue him on the Miralax for as long as he needs, usually until they are potty trained at least.

We stopped at Yale to see his team again today. We got to see a few of our favorite people, but not too many today. They were either not working or too busy to visit. It was good though. We did miss our fellows though!

Other than that, there is not too much to update. I have pictures from our apple picking weekend, but I haven't downloaded them from the camera yet. I will add them soon. Josh is still not walking, but getting braver all the time now. He does stand for a few seconds on his own before he falls over. He has finally in the last month or so, stopped belly crawling and is crawling on his hands and knees so that is a great developement! Other than that, there is nothing exciting to report which is a good thing on it's own! He is progressing at a normal pace and for that we are truly thankful!

Yay!

Josh got weighed today and is 20 pounds 10 ounces.. We finally hit the 20 pound mark! He is 30 1/4 inches long. He is on the charts (5th percentile) for his height but not quite on the charts for his weight. This is for his actual age and not for his adjusted age, so that is really good considering! His noggin is also on the charts... this is also a YAY!!

He did get some shots today and that did not make him happy (but is any kid happy after shots??). All in all he is doing really well!

19 months

HI everyone!! I have been really BAD about updating lately. Shame on me!

We went on a family vacation the beginning of August. There is an indoor waterpark in Massachusetts that I found. Good for me because I am crappy out in the sun.. I get sick and of course sunburned. Good for Josh too since he is a product of his parents... Irish/Swedish among other "mealy" white nationalities! He did NOT want to sit down in the water. He wanted to stand.. and of course, have someone hold his hands so that he could walk around the pool.

Josh loved the fountain at the kiddie pool. We spent most of our time there.

Look at the happy water baby!

It was a good time. We spent two days there. The teenagers took off on their own for most of the time. We rented a cabana which was a small room with a fridge so that we could put Josh's milk in there and have a place for him to nap.

Josh is still not walking but he is well on his way. Getting more brave every day, letting go but still hasn't taken any steps. He cruises around everything!

He is into self feeding these days. He hates it when we try and feed him now but there are still some things that we don't let him do himself... REALLY messy things. I did let him do pasta and sauce tonight... you can see the results! But he does love his food! We are so lucky that there are no feeding issues. Check out the curly hair! We haven't given him Prevacid in over a month and he seems to be fine without it. That means the only med he is taking now is Miralax. What a difference from when he came home from the hospital.

His latest is "hi baby". This is what I say to him when I come home in the evening. The first time he said it, Dave and I just looked at each other like "did he really say that?". Yes he did! I finally got it on video. Now it's "bye-bye" whenever someone is leaving, either the room or the house. I do have to say he is too cute but of course I am biased!

Well this is all I have for now. He has his 18 month checkup on Tuesday so we get a weight. I am hoping he has finally surpassed the 20 pound mark. He is so active these days, it's tough to keep the weight on. He sees the GI doctor the end of the month so I will update after those appointments.

P/T

Josh had his 6 month evaluation with his Physical Therapist. He is still lagging with gross and fine motor skills. She is putting him at 7-10 months. While I had hoped that he would be a little further ahead, I am happy with his progress. She did say that he is progressing at a normal pace which is a good thing! Last weigh in he was 19 lbs 9 oz. We are still having some issues with chunky foods. He won't eat any level 3 foods that have chunks of vegetables. His pulmonologist said that this could be because it's smooth and chunky which is an aquired texture. He will eat toddler foods like the spaghetti rings but has a hard time with the chicken and stars (the chicken isn't soft enough). He likes bread and pasta. So we are on our way, but it's slow going.

They say that between 2 and 5 the 4 month delay won't be such a big deal. I am thinking it will be more toward the 5. He is pulling to stand more often (like ALL the time!!) but not walking yet. We are in trouble once he does. He's already into everything in his walker! He really is an amazing baby and I realize that so much all the time. There are so many other babies who haven't fared as well as Josh has. Talking to other mom's has always put it in perspective for me. I have always considered him my miracle, however, I am seeing more and more just how fortunate we are that he is doing so well and that the only problems we are having now is some feeding issues (Which aren't major) and some developmental delays which we anticipated anyway.

Life as a preemie mom really is different than having a full-termer, don't let anyone tell you differently. I don't take any of his milestones for granted. Every thing he does is a major accomplishment as most other preemie mom's will agree. While we aim toward "normal", we know that life in many cases is never "normal". But what is normal anyway? It's all in your perspective of things and how you define what normal is.

Anyway, now that I have gone off on a preemie mom tangent, thanks for reading... what did you all think of the poem below?? I loved it, but no one commented!

Picture

Josh is now standing. This is Josh and Cristien... Cristien is locked in the "baby cage" and Josh is outside!

Life in Holland

I got this from a preemie mom's blog and LOVE LOVE LOVE it. What a beautiful analogy. Her Blog is titled "Life in Holland" and documents the trials of her preemie son Dane. Take a look!

Here is the explanation of her blog. She read this and thought (like I did) This is my life in Holland! (although luckily Josh doesn't have any disabilities).

Welcome to Holland By Emily Peri Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed us in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...And you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, that's where I was supposed to go. That's what I planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...in Holland.

yesterday

As of yesterday, Josh can now pull himself up in the play yard. From laying down to standing up. Whoo hoo! Before this, he was just climbing up Dave and I. Now he is really on his way. As I was checking my mail this morning he did it again and is now watching me and the TV from a stand. Too funny!

Ped Update

Well the pediatrician thinks he is doing well. He is 19 lbs (gained 1/2 lb in 2 weeks) and 29 inches? He is one pound away from being on the charts for his actual age, and in the 5th percentile for his height (yay on the charts!!). He is also on the charts for his head circumference (I think she said 10th percentile). He is delayed for development, but we know that and is the reason why we are working with PT/OT. Ashley (PT) is happy with his progress. He is making his goals all the time. He is almost pulling himself to stand, and we have to work on his "dismount" lol... basically teach him to sit on his butt when he is falling back from standing. He is a crazy, busy baby and so stinking cute if we do say so ourselves! I will try and get some video so that you can see. If you want to come and visit, just call us. Now is the time since RSV and Flu season is over!

Mesage from Josh

m, . ,mm ,jm l +699/...........ml ,m....8'..+s00............. 56/-0..mm9 m,99 ooimmmmmmmmm51 22o*********"= i0p/" nh67m uygfngfgfgfgghghgg bv*&{L

I don't know what it means, but he typed it!

GI Visit

We went to see the GI doc on Tuesday and she is REALLY happy with his progress. He is 18.5 lbs and 28 inches long (this may not be accurate as he wouldn't hold still). She thinks the weight gain is great and decided that he no longer needs any extra calories. She also said that he is ready for whole milk. He is eating baby food for breakfast, lunch and dinner and eating between 4-6 ounces 4-5 times a day. She decided that we can also stop the Zantac but continue the Prevacid. On that note, since we have stopped the Zantac his appetite is already increasing. I did look it up and it can cause loss of appetite (along with constipation) I am not sure if this is it, but he seems to be chowing down. We may be able to stop the Miralax too....

We were hoping he was 20 lbs so that we can forward face the car seat. I am going to talk to his pedi and see if he is ready. Sometimes they will say go ahead when their head control and sitting up is good which Josh's is.

He is doing this funny face lately. I haven't gotten a picture yet, but he wrinkles up his nose and snorts... omg, it is the funniest thing. He is finally crawling actively and climbing... if we are on the bed he is climbing up either Dave or I to get to the headboard where he can stand up and play with the window shade (don't worry, we have secured the cord). He is going to be a crazy baby to keep up with. He is curious about everything and into everything he can reach. He chases the cat and Jake is NOT amused at all. In his walker, he is speedy and either runs after the cat or one of us.. rolling over toes in the process.

He is now waving bye-bye (to himself usually) and plays patty cake.... he does "roll it, roll it" and it's very funny... all in all he is just a very funny baby. He has a wonderful personality. We are biased of course, but he is such a joy. I have been blessed with two well mannered boys (well Arran was well mannered until he became a teenager.. don't even get me started there!). I will definitely get more pictures up soon. I have been bad again.

I'll update next week after the pediatrician's visit.

Love you all!

Update

Hello all! I am not sure that anyone ever looks anymore but here goes anyway. The March of Dimes walk went really well. It was not a great weather day (dreary and chilly) but a good day for a walk since we were all sweating at the end! I did my speech and managed not to totally break down. I did choke up during the part about Emilee.. I always do. Hopefully it made an impact on people, but most of them had their own reasons for being there. Our team raised about $5,500. I will be doing it again for many years to come. We only have one picture... my camera battery died after that one shot! Thanks to everyone for your donations.

Can you believe Josh is 15 months already? We went to see the eye surgeon last week and she said the surgical part of his eyes are looking fine. She will see him in a year (most surgeons discharge them at some point!!). We have a GI appointment next week so we will get weighed (yay!) and talk about his diet and if we are going to stop formula at some point. I see her telling us that we should continue with the toddler formula's because there are more vitamins and calories. We still do the extra calories but the more he eats of the real food, the less calories he will be getting....

He is almost sitting up on his own (he does it sometimes), but does belly crawl across the floor and will crawl up and down Dave and I (pulling himself up). He got his first tooth through last week (on the bottom). He says a few words .. mama, dada, nana (not sure what that is!) some is just baby babble but we'll take it. It's so hard not to compare him with other babies his own age and even his adjusted age. He is still a little delayed for his adjusted age, but I know he is getting there. I'm not really worried, but I still get a little jealous when other babies are doing more. That's pretty much it for now. I will update after the GI appointment since we will have a weight. I hate not getting them done every other week!

I'll take some pictures and post them soon.

Love to you all!

14 months

I have been bad about keeping up lately. There just isn't anything to update! Josh is doing really well. He is coming along developmentally... he is sitting up on his own for longer periods, and he is rolling lots. He may be crawling sometime soon but he knows he can get what he wants by rolling to get there so that may be good enough for him! We see OT and PT each twice a month and are working on those areas that he is lagging.

I am sure you all know that we were asked to be the Ambassador Family for the Greater Mystic Walk for Babies. It is an honor but does mean that I have to tell our story. I had a trial run at an executive breakfast and it went okay. I can't get through Emilee without crying. I'll have to speak the day of the walk. If you haven't donated... would you please? It really is for a good cause!

Here are some pictures that I took today. He is a funny boy!

Long awaited Birthday pics

Sorry guys. I have been a little slow at getting the pics up, especially because I didn't take these. Thanks Chele for taking our birthday pics!

He didn't like the frosting... can you tell?

Sneaky--sneaky!

Whoo hoo!

No more diuretics. Yup. We saw the pulmonologist and she said we could stop. She wants an e-ray, EKG and Echocardiogram in a month to make sure that all is well, but that's it. Two down, two to go... It's a proud day, since Josh has been on diuretics for pretty much the whole year.

Some More

Josh was playing with Daddy's hat this morning!

Video

Josh was amusing himself in his play yard.... no clue what had him so tickled!

One Year Pictures

I didn't get a chance to take pictures yesterday so I took them tonight. Pardon the red-eye. The computer downstairs has the program to fix it and I was lazy and just used the laptop.

Look at the big boy sitting all by himself!

I think he was annoyed!

One Year!

Wow. Joshua is a year old today. I can hardly believe it. Sometimes it seems so long ago, and then of course there are days when it feels like just yesterday. So much has happened in that year. 123 NICU days. Homecoming, stressing over weight gain and now a happy one year old. I look at his birth pictures all the time. I think term mom's sometimes take for granted the milestones that their babies so easily hit. We have our own milestones and Josh is really doing well considering his early start.

Thank you to all for being there for us this last year. Being our strength when we had none, sending so many prayers when they were so desparately needed. Just knowing that you were all there helped us more than you can ever know. And thank you all for being a part of Joshua's life. He is a lucky boy for having all of you.

More Pictures - Taken Feb 2, 2008