Long Time, no post

Ok- so I hope you all aren't ready to shoot me for waiting so long to post. I don't have a big reason - just busy and have let the blog take second seat to other important things. Thanks to those of you who have still checked in and for still praying for us.

In some ways I feel like not much has happened and in others it seems like it's been a long three weeks. This is just going to be a catch up post - nothing too deep. ( there's lots of pics at the bottom)

I don't think I ever updated you guys on Cohen's cardiologist appointment. It went really well - his heart looks great. He does have a slight murmur but the cardiologist said it was completely normal -nothing at all to be concerned about and that we won't have to follow up with him except for maybe every year or so at most unless something changes!! I really liked the doctor but am glad to cross one doctor off the list!!! :)

He continues to do well with his breathing and is able to stay off the oxygen more and more during the day without dipping in his saturation levels.

Eating continues to be tough. About a week and a half ago several things happened sort of all at once - I'll see if I can summarize.

1. On a Thursday he had an all time low with eating - he took about 14 oz. all day and was really fussy while he ate. I took him to the doctor the next day and he had a nasty ear infection.

2. That same night ( Thursday Night) I found out while doing some Internet research that prevacid had milk in it!! So here I was cutting all dairy out of my diet and giving him medicine with milk in it!! So I didn't give it to him that night or the next 2 days and in spite of an ear infection he ate super well - better than he ever had. He had a really bad bought of throwing up starting on Saturday night ( 4 out of 5 feeds) so I started giving him the prevacid again out of fear he would really start hurting and to test to see if the good feedings were due to removing the prevacid. He went back to his old ways of eating.

3. So at the end of last week we took him off the prevacid and back on the zantac. I was really hopeful but this time we have not had super feedings and in fact today has been a really bad day for eating. He still continues to eat 1 - 1.5 oz easily and then doesn't want to drink anymore. On good days I get 2- 3 oz. in him at each feed but it doesn't come easily. Since he's been off the prevacid, the diaper rash is clearing up. The last time I was able to get it cleared was when he was on zantac before too. Not exactly sure what this means.

4. We saw a new OT last week who I think will be taking over his case. I really loved my other OT so I'll miss her for sure. The new OT seems to think most of his eating issues are related to his breathing. I know this may certainly be the case but it seems odd to me because Cort ate the EXACT same way and did not have breathing issues. Cohen's suck is def. a little less coordinated than Cort's was but other than that it is like living the same eating nightmare over again. I think we are also going to increase his OT to 2x a week and while I am all for Cohen getting all the intervention he needs I am stressed about what this does to our family. It is about a 2.5 - 3 hour process to go to one therapy session.( we'll do this 3x a week when you add in PT once a week) This is not great for Cohen's sleeping or schedule for sure and I am not quite sure what the best scenario is for babysitters for Cort. We're just taking it one day at a time. It's so difficult to make decisions that are best for our whole family.

So, there's his eating scenario. He continues to some how gain weight so all the hard work with feedings are paying off but it's very frustrating. Prayers are appreciated.

We are working hard on motor skills too. He still can't lift his head when on his tummy and doesn't turn his head much to look at things either. We just keep doing lots of tummy time to increase his neck strength. Hopefully it will come soon.

We had our geneticist appointment to but I'll probably save all those details for a separate post - this is getting long and I'm running out of nap time - don't worry not really any news to share so I'm not holding out on you!


Cort has jumped into summer play full force. He would live outside if I let him and is quite the little fish these days. We haven't gone to the neighborhood pool yet but he is living in our blow up pool and sprinkler in the back yard.



We had a great mother's day. I was dreading that day throughout my pregnancy. It was such a joy to spend it with my 2 boys. Cohen gave me a great flipbook of him having his footprints done for his birth certificate and Cort gave me a travel coffee mug( i just use it for tea) with a picture he painted inserted in it.( i had been complaining that my husband always had the travel mugs at work and that even Cort had one of his own from a free zoo gift) Loved them both. Such a thoughtful husband.

mother's day picture take one

and take 2

Memorial day weekend was great because we had nothing to do!!!! We were able to spend some good family time and some time with friends.

Chris got a inflatable Kayak for his birthday and we tested it out - first in the front yard and then at a pond.
Chris loved it and Cort wasn't too sure.




Some random pics from a trip to the zoo from a while ago:



Mesmerized by the mobile

Cort introduced Cohen to Baby Einstein( now before I get a ton of comments about it - don't worry I will not make a habit of letting my 2.5 month old watch TV) Cohen absolutely loved it - he smiled and talked to all of the toys and characters.

Sweet pictures of my boys