Happy Halloween!

I'll of course have pictures later. Josh has some new words... he likes the big ones and they seem to be associated with food now that I think about it! 'delicious' is one and the last one that grammy taught him was 'scrumptious'! He likes to eat what he likes to eat. Any parent knows exactly what that means. Some days he likes it, and the next day he won't eat it. Still my carb freak...bread, pasta and loves his fruit which is good. He is still on the small side, but I have no worries there! His big brother is 6'1" at 15 so I think Josh is going to be just fine!

We went for a preschool visit last week to prepare for his PPT coming up next week. The teachers think that he is not going to qualify for any extra services. They won't know for sure until the PPT is done, but that is the preliminary evaluation. This is great news because it means that they don't think he is behind in any areas, but sucks because I was hoping to at least get him into preschool for a few days to get this boy some social skills. He is with grammy and grampy every day which is a great thing (I don't know what I would do without them!!) and he occasionally plays with his cousin and one of my MIL's sisters grandson's but never in a group. Although we wouldn't do anything until next April after flu and RSV season is over. We have a daycare program at work and I can see if I can get him in there a few times a week then.

This is the first year he hasn't gotten Synagis which is a good thing, he has a HUGE fear of doctors right now. Doctors on television make him cry poor little man. We are having a hard time getting the H1N1 shot, although he did get his seasonal. His ped has the flumyst version which Josh can't have because of his chronic lung disease. He must get the shot and with the limited production it's tough to get. My ped doesn't have a waiting list for those who are considered at risk, it's first come, first serve and I have to call every Friday to see if it came in. What a pain. But we will keep trying. I also called the pulmonologist to see if she had any. Nope, so we got on a list there. He is on lockdown now. We just don't want to take that chance. After the pneumonia/RSV he had in January, I really don't want to see him sick again. our hospital has put a visitation restriction on for anyone under the age of 18 or if you have flu symptoms. Some people are not that smart and will go out with the virus and infect everyone else. Hopefully this will die down eventually.

So that is our latest update. Nothing really new. Will post Halloween pics later. He is a puppy again because his costume still fits from last year( I hope!!). A friend from work made his this adorable trick or treat bag that looks like a milk-bone... LOVE it!

Summertime

Summertime is almost over. Josh loves water play... Grandma has a little pool and water/sand table that he spends lots of time with.

He is now hitting those "terrible twos". NO is a common word, and the throwing of the fit when he doesn't get his way.. we LOVE that. But, he is starting to learn that it still doesn't get him what he wants. I am easy for some things, but I don't want a nasty spoiled child.

Overall though, he is a pretty happy child. LOVES his grandpa and brother more than anyone else. Likes Sprout TV and will ask for it even when he is half asleep.

He still has a bottle at nap and bedtime and will try to get it at other times, but we try to hold fast to that rule. Of course when it's hot as heck and he is not drinking a lot from the cup we sometimes give in and let him have it in a bottle because we know that he will drink more that way. I know that there are some that say he should be off it by now... and to them I say... phooey! He will give it up sometime.

Potty training has been talked about but I really don't feel that he is ready yet. Maybe before he turns 3.. maybe not. Others sometimes forget that he is still a few months behind. Now that he is doing so well, they stop thinking about the delay, but we know it's still there.

He is talking up a storm and I thought he was beyond his age, but then I see some that are around his age that are talking so much more or better and I realize too that he is still behind a bit. BUT he has come such a long way since his birth that we are proud of every little thing, every milestone. Who would have thought a few years ago that he would be where he is today.

I think the only issue we really have is that he has to have Miralax nightly. Otherwise he has really painful BM's. I think that's a small one compared to others. He eats pretty well but he is definitely a carb lover. Loves his pasta... mac and cheese, ravioli, you name it if it's pasta he will eat it. The rest depends on his mood. And bananas. We of course have to limit those as we have enough issues with constipation!

So there you have it. Our latest update. I will TRY to be a bit better. I have been really slacking lately. Until then....

June

It's been awhile. Mostly because things are uneventful.. that is so good for a change! We have had a good few months. Josh loved the Easter bunny... I think he thought he was a big stuffed animal.. he kept trying to go back. It was pretty funny!

He had been downgraded to mild chronic lung disease at his last pulmonary visit. She thinks he is crusing right along. We will continue to see her for awhile I am suspected to be sure that nothing crops up later.

At our next IEP eval the Physical Therapist is going to discharge him I think. She is a friend of ours and has stated more than once that there really isn't anything more she can do for him at the moment. He is meeting all of his milestones. We will get evaluated by the school system juset before he turns 3 but without IEP I am sure they are going to deny services. We'll have to see. I think he will just be in a regular pre-school setting which is more than we could have ever hoped for. Who would have thought 2 years ago that he would have come this far.... we are truly blessed and I am thankful every day!

So there you have it. There really isn't much going on. We have a child into the "terrible" two's but really, with all that he has been through a little obstinance isn't bad. He is really a good child most of the time, just inquisitive and getting truly brave and into everything. He knows what he likes and doesn't like and isn't afraid to let us know!

First Official Haircut

Well it was time. I gave him a bath the other night and realized just how long it really is. When it curls it doesn't look as long, but it was, and it was time. I still blamed it all on Dave LOL and pouted the whole time. The hair salon we went to caters to kids.. has the chair that are trucks or cars and videos for the kids... very cool! He hated the clippers (Arran never liked those either) and cried when she brushed off the back of his neck with the fluffy brush.

Look Elmo!!

He has also decided that he likes to sit in the fireplace. It's a fake fireplace.. not even enough room to add a gas/electric insert. Not sure what the person who created it was thinking. It's pretty but certainly not at all functional.

We had put a comforter over the stones (the hearth is all stone) and Josh decided that he wanted to sit there. So we put some of the couch cushions in there so that he would have a place to sit back.

Josh is 2!

Josh is 2 today. Can you believe it? 2 years ago he was this tiny baby struggling to survive. Today he is 2.

In the past year we have met so many milestones. He learned to crawl, and then walk and he is saying many words. We are so proud and amazed every day of just how far he has come. I know all my preemie mom friends totally understand!

We had a family birthday party yesterday and today some friends. We wanted to split the germs and not have that many people all at once. He is still getting Synagis (our last year) and is just getting over a bout of something.. (could have been RSV or a touch of pneumonia) but he was pretty sick. Luckily not sick enough for a hospital visit but we were on steroids, antibiotics and breathing treatments. We count our blessings that he has not had to be re-hospitalized. YAY!

We had cupcakes and cupcakes and cupcakes! (regular, mini and cupcakes baked inside of an ice cream cone). The opposite of last year, all Josh wanted to do was to lick the frosting off of them.

A friend at work made us this amazing sweater. We wear it every day. It is so warm that we use it as a winter coat (on the days that it is not below zero!). We have had a very cold winter this year!

So without further adieu!

Josh's '2" picture

Another with a balloon

frosting on the table and everywhere else!

Yummy yummy cupcakes!

Josh's new sweater!

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!