Getting Things Done.

This week Seth only has one therapy appointment and it is today so I really have to get on the ball and get things together because next week we are back to our normal stuff. I have been slacking on the cleaning and school work with Sydney. But today it is all going to change!

• This morning I vacuumed the house and the couches, organized the toy room which will be a mess in a few hours because of a little 3 year old, cleaned the kitchen and when Seth wakes up I will put his laundry away along with Sydney's.

• This Thursday Sydney has her first tumbling class with her closest friends and I hope that she has a blast. I think she will be very good at it if she actually listens and doesn't throw her typical attitude.

• I am planning a baby shower for my bestest girl in August and I am just waiting for the invites to come in the mail so that I can start getting on the ball with that stuff. I still have quite a few things that I have to buy for the shower but I have to wait for a few things to come in the mail so that I can color coordinate the rest of it. I have never planned a baby shower except for Dani's and I had tons of help for that one and the help came from Lisa...so I hope that everything turns out great. 

• Friday we have our big ultrasound at 9:30am so if you could be praying that everything is okay and that everything is functioning the way it should that would be amazing! 

Paid it all.

In Church this morning we sang this song...

Jesus Paid it all.

I hear the Savior say 

Thy strength indeed is small 

Child of weakness watch and pray 

Find in me thine all in all 

Jesus paid it all 

All to him I owe 

Sin had left a crimson stain 

He washed it white as snow 

Lord now indeed I find 

Thy power and thine alone 

Can change the lepers spots 

And melt the heart of stone 

Jesus paid it all 

All to him I owe 

Sin had left a crimson stain 

He washed it white as snow 

It's washed away! All my sin! And all my shame! 

And when before the throne 

I stand in him complete

Jesus died my soul to save 

My lips shall still repeat 

Jesus paid it all 

All to him I owe 

Sin had left a crimson stain 

He washed it white as snow 

Sin had left a crimson stain 

He washed it white as snow 

Oh praise the one who paid my debt and raised this life up from the dead

Oh praise the one who paid my debt and raised this life up from the dead

Oh praise the one who paid my debt and raised this life up from the dead

Oh praise the one who paid my debt and raised this life up from the dead

Oh praise the one who paid my debt and raised this life up from the dead

Oh praise the one who paid my debt and raised this life up from the dead 

Jesus paid it all 

All to him I owe 

Sin had left a crimson stain 

He washed it white as snow 

This is one of my all time favorite songs and I have heard it many many times but for some reason this morning it made me cry for a very different reason...my little boy.

I can not tell you exactly why but little parts here and there made me just think of him and what he has been through in his short life so far and just how much I want him to be okay. But the thing that is hard for me is that when I want him to be okay and healthy and perfect, in Gods eyes he is already perfect. Stuff with Seth has been hard lately not necessarily anything new just stuff in general and it has nothing to do with Seth he has been great it has all been me and my own thoughts. And when I really think about it and what we have been through I can get really angry. I wish sometimes that cCMV was a cause from something like doing drugs or eating cold cuts while pregnant cause if that was the case Seth would have never gotten it but instead it is a virus that anyone can get and God allowed me to get it and I will figure out this tough road with HIM of course but right now it is a really rough one and it is hard and scary and a sad one.

The stomach virus is finally GONE!

It has been a crazy few weeks at the Marinello house hold. Seth got the stomach virus twice since his birthday and the last one was about a week long and it was starting to drive me crazy! I have seen enough vomit and diarrhea that I should not have to see any more for years.

Last week was not too good for Seth in the therapy side because we had to cancel them because he was sick. This week was his last one with Donny his OT and now we just have to wait until we get another one. Today we had PT and he actually did really well. He was sitting and leaned forward too much and was able to use his hands and push himself up which is amazing for him! He was laughing for the first 30 min which was so funny and he just loves him PT Brenda and she is so good with him.

Tomorrow we have his year check up and he should be getting some shots but I tend to split them up so that is what I will continue to do with him but now that I think about it he is actually not allowed to get the shots because he just started back on his steroids. He will be on the steroids for another week and then next week we go to the neurologist and talk about another med that should hopefully stop them completely.

Next Friday I have my 19 week ultrasound so if you think about it just pray that everything is going great with the little muffin and everything is growing and functioning the way it should. This pregnancy I have been worried in general just that everything will be okay with this little one. I can not explain it but its hard.

Pray for Seth!

If you get a chance and think about Seth could you please be praying for him. He has been having a lot more infantile spasms and they are causing a blue ring around his mouth. The doctor last night said that if it gets worse we will have to take him into the ER but for right now just watch him. What is happening is when he is having the seizure all the blood is freaking out and rushing to his heart and not going elsewhere. Earlier yesterday I had called the neurologist before the whole blue mouth issue and we have to give him strong doses of prednisone for the next three days and see if that helps. He also started his new medicine last week and got one pill each night and starting last night he got 2 pills each night. Right now another issue is that he is not keeping anything down and have diarrhea. I am not as worried about the the stomach issues as I am with the blue ring around his mouth. But if you have a chance to pray for him that would be amazing!

Seth John Asher turns ONE!

I can not believe that my little muffin is already ONE. 

Your labor was quite easy until the last hour but I will not share the story again but if you would like to read it its here. Since he has been born we have had many mixed emotions and feelings. I have felt every emotion in the book since he has been born and yet he can always make me smile. Medically we have been through so much:

• CMV diagnosis
• CVI diagnosis
• Seizures and many different meds
• 8 UTI's
• Two surgeries (tubes and kidney reflux)
• Lots of lab work

But he has come so far in a little time. In January 2010 when we got our PT and OT Seth was at a developmental age of 2 months and now 5 months later he is at a 6 month age but he also still does somethings at a 4 month age because of his vision. So we are really trying to work past that and try to get him to grab toys or at least search for them even if he does not see it.

With everything that this little muffin has been through he is such a HAPPY boy! He amazes me at his attitude through things and how he can always be happy. I remember the day of his circ and reflux surgery and all he wanted to do after was eat and then he was fine. He did not even cry...Lisa and I were able to go and get lunch after and he just hung out with us and was so happy.

Seth will always find a way to make me smile. He gets me every time with his frustrated facial expressions, his big smile with his two top chompers, his pissed off cry, they way he plays with his toys, and the way Lisa tries to get him to look at her with a black and white mask!

Here are a few pictures of his wonderful year so far...

9:40pm 

9 pounds 1 ounce

In the NICU (4 days old)

2 months old

4 months old

6 months old

8 months old

10 months old

And here is the ONE year old.

Happy Birthday sweet little boy, We love you so much and can not wait to see what next year holds for you!

JUNE...

Last year June was one of the worst months EVER. I do not even think I could explain how horrible it was but I am praying that this June will be so much better. The only amazing thing that came out of last June was our precious little muffin boy Seth, but only 18 hours later all hell broke loose again. 

I just want this month to be somewhat normal. I am not sure if June will ever be normal but maybe we will just get use to it each year. 

June has now become National CMV awareness month and on the 13th we are going to a Diamond Backs game where there will be other families there that have kids that have been affected with cCMV. It should be nice having a day with family and close friends and meeting other people that have gone through or are going through some of the same things that I am going through.

June 22 my little muffin with be ONE. I cant believe he is going to be one. This past year has been so crazy, especially with Seth and all of the medical things that we have gone through but at the same time it has gone by so very fast. We have had our UP moments and we have definitely had our DOWN moments but I would not trade him for anything. He is such an amazing little happy boy and he makes anyone who sees him smile. I am just still in shock that in 20 days Seth will be one. 

It has been a long time...

Oh wow it has been a while since I have done an update on Seth.

He started steroids to help with his infantile spasms and it helped for a little bit but then they came back. He is still on them but they are being maintained. If we were just to take him off the steroids he would start having a LOT more. There is another medicine that we can try to see if it will stop them but it could do damage to the eyes and we are not sure we want to cause any more eye damage.

He is starting to hold onto toys which is such a good thing. It has taken us a really long time of trying to find that one toy that he would play with and then one day he just started playing with them. He has certain toys that he would love to play with more and his favorite is a ball with holes in it that he can grab and shake.

In PT they are working on getting Seth to be able to sit up and also stand. He is doing so good in the standing area the sitting is a little harder for him. He does not sit on his butt he actually sits more on his tailbone which does not help in the sitting department. Donny his OT is actually going to be coming 2x a week and working on some feeding with Seth as well which should be very helpful.

We had Arizona School for the Deaf and Blind come out to the house and they did an evaluation on him and they said he does not use his vision enough to be called sighted. He does track bright colors, lights, and things that shine. They did say that the good thing about CVI is that it wont get worse and it can get better. The next day Seth had an eye appointment and the Dr said the same thing as ASDB. They will not see him again for another year unless I feel that things are getting worse or that something else might be wrong.

I can not believe that in 20 days my little muffin is going to be ONE! This years has been so crazy and yet at the same time gone by so very fast.