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.

I'm still alive :)

Sorry it has been a really LONG time since I have done a post and quite a bit has been going on in the Marinello household.

1. Seth finally got a feeding specialist!
2. Seth had tubes put in his tiny little ears.
3. We are starting to get Seth off his prednisone.
4. My little boy will be 11 months in 2 weeks...holy cow it has gone by so fast.
5. Swimming lessons start for Sydney next week!
6. Sydney had her 3yr check up and is in the 90% for height and 85%  for height
7. Mike started playing softball on Friday nights with Matt
8. Palm Spring Vacation is booked and I am so ready to go and hang out at the pool.
9. CMV D-Backs game June 13
10. I'm pregnant and due December 7.

I will fill you in later when I have sometime to sit down and write and upload some pictures :)

So...

I use to buy a lot more healthy food for our house meaning snack wise. I use to always go to the farmers market because we use to live right by one and I would just buy tons of fruit and vegetables and if we ever wanted a snack that is what we would have...same with Sydney. Since we have moved I have gotten really bad at it and quite frankly lazy. It was just easier for me to go to the store and buy some cookies or fruit snacks and call it a day. Well that is changing now. Mike and I talked about it this afternoon and we both miss the days of just having good healthy food in our house. I mean I always buy the wheat bread, lite mayo, cream cheese, or sour cream, and not a huge amount of pastas for dinner and that kind of stuff, but Sydney is now getting use to the chips and cookies that we use to never have in the house and she is such a good fruit and veggie eater anyways that I would so rather her eat that then the junk.

So when we get home from our little vacation I will be making better choices for the snacks that we have in the house and make a lot more trips to the farmers market. I am actually really excited about this and really have missed all the yummy fruits and veggies we use to have :)

On March 22 my little man turned 9 months old...let me say that again 9 months old. Are you serious? I can not believe that 9 months ago I just wanted the little man out! He is such a happy boy and I love him so much. It is weird sometimes, he acts so much like a little baby and yet at the same time he is HUGE. I mean when you are holding him he is so much like a baby...he does not grab on like a monkey, and you have to support him but then when you lay him on the floor he is so big its kinda scary :) Anyways, he makes me laugh all the time and I love him. April 27th he is getting tubes in his ears and we have to be there so freakin early...I believe 6:30am so that means we need to leave here by 5:50am so I will have to get by by 5:15am! But for right now I am just praying that he stays healthy because he is on steroids and I just really do not want him catching anything because he is going to have a really hard time fighting it.

Much Love!

Random ;)

So I have been on a Dr. Seuss kick for a really long time and I finally ordered stuff for his room and it has ARRIVED :)

I got some cool wall stickers, blankets, burp cloths, hamper, and an awesome chair. I can not wait to get a few more things and the cool thing is I will be able to use it for the next kid as well because I am so in LOVE with it ;)

Here are some pics of his rooms now:

The coolest chair EVER!

My FAVORITE wall!

I need to find something to cover the shelf...it came with something but Sydney tore it off when she was one and I have not gotten anything yet.

Last weekend we went to the Park for James' third birthday and Sydney had so much fun. She could play at the park all day long if we let her and then if we add her bestest friends, The MacCallum clan, she would never come home. I love watching her play with her friends and how much she loves them. I love the MacCallum kids so much and they are all so freakin cute and make me laugh in their own ways.

Helping grandpa with the wood floors. He loves it when she wants to hang out with him!

Sydney and Lorelai...oh how they love each other. They are way too cute!

A day at the park

Running like a crazy kid.