So not fun!

A week from tomorrow we go to Phoenix Children's Hospital so that Seth can have surgery. It will be a 4 or 5 hour surgery and that scares me. That is just a long time for my little guy to be under...the longest he has been under has been maybe 45 minutes. He surgery starts at 7:30am so Mike is going to take off of work and we will be at the hospital together and then late that afternoon or evening he will pick up Sydney from Lisa's (Lisa is letting Sydney stay with her Sunday over night so we do not have to take her over there at 5:30am) and have her for the night. Tuesday and Wednesday Mike will just come by the hospital when he can in between work and having Sydney.

I hate seeing my little boy in pain so I am praying that they can control his pain and I am praying that because he does not walk too much that he actually wont be in a ton of pain. But you also hear all the time that getting up and moving is always the best thing after surgery.

So last week we got home from a wonderful vacation in Palm Springs and I posted lots of pictures on our family blog here but I will post a few of the little muffin here for his blog :)

All ready to go to the pool.

First day at the pool he got so tired and slept on the chair for an hour

Playing in his boat.

The last day Mike took Seth down the slide and as you can tell by his face he LOVED it!

Here he comes

The last time with daddy

He is so tired...the slide wore him out

His big sister the "fish"

So if you think about it pray for my nerves and Mikes as our little guy has surgery next week, that everything goes great during and after the surgery, and that we do not have to stay at the hospital longer than Wednesday.

Strong Enough

Last night was a hard night for me. Sydney woke up screaming and of course that woke up Seth. I went in and tried to get him back to sleep and he was just so not himself. He was having so many spasms and he just did not look there. I do not know how else to describe it besides that it seemed like my little guy was empty. I decided I would wait 30 min to see if he falls back asleep and then if not I would give him some meds. I went back in at 2:45am and he was still awake so I gave him some meds in his bottle and then put him back to bed contemplating if I was doing the right thing or if I should be taking him to the hospital. So then I spent the next hour or so looking up infantile spasms online even though I have done it many times before I just thought that maybe I would find something different. And of course the more I read the more I got frustrated and scared for Seth. These spasms (seizures) are the hardest to treat and sometimes the meds do not work at all. I found one drug besides the only one that we have not tried that comes in shot form. If your insurance does not cover the shots it can be really expensive but there have been a lot of people that had success with it but also some that didn't but had success with vigabatrin which is the one that can cause vision issues. So I am just getting tired of all of this and especially everything that Seth is going through. I do not feel strong enough to handle this all and I know either does Mike. We both feel spent and frustrated and it just seems like one thing after another. But I heard this song yesterday and I had to buy it because I felt like Matthew West was singing it to me and my family. I know that I am not strong enough and I know that Mike and I together...still we are not strong enough but with HIM we are strong enough and we will get through this. It is just really hard right now. If you think of it please pray for me and Mike and of course Seth. We are fighting and it is going to be a long fight.

Strong Enough

You must, You must think I'm strong

To give me what I'm going through

Forgive me, Forgive me if I'm wrong

But this looks like more than I can do

On my own...

I know I'm not strong enough

To be everything that I'm suppose to be

I give up, I'm not strong enough

Hands of mercy wont you cover me

Lord I know I'm asking you to be

Strong enough, strong enough for the both of us

Well maybe, well maybe thats the point

To reach the point of giving up

Cause when I'm finally, finally at rock bottom

Well thats when I start looking up

And reaching out...

I know I'm not strong enough

To be everything that I'm suppose to be

I give up, I'm not strong enough

Hands of mercy wont you cover me

Lord I know I'm asking you to be

Strong enough, strong enough

Cause I'm broken, down to nothing

But I'm still holding on to the one thing

You are God and You are strong and I'm with...

I can do all things Through Christ who gives me strength

And I don't have to be 

Strong enough, strong enough

I can do all things Through Christ who gives me strength

And I don't have to be

Strong enough, strong enough

I know I'm not strong enough

To be everything that I'm suppose to be

I give up, I'm not strong enough

Hands of mercy wont you cover me

Lord I know I'm asking you to be

Strong enough, strong enough, strong enough

Doctors-Vacation-UTI's

Today I had a doctors appointment (28 weeks 6 days) and everything was fine. The baby is for sure head up and Dr. Seymann had be put my hands on my belly on each side of her head and he shook her head between my hands, that was one of the weirdest things I have every felt it was crazy. Seth took a long time before he went head down and as of right now we have some time. I have had a few days where I have had some contractions and Dr. Seymann said that I have to call in if I have 5 or more cramps in an hour and at the next appointment he should start doing the FFN's. I passed my glucose test which was nice to know and I had no harmful antigen in my blood so that concludes a few things for me but I wont go into that right now. So I will start going back every 2 weeks which is nice...I am getting closer.

So last week we went to Palm Springs FINALLY and had such a great time. I love having nothing to do especially NO doctor appointments and just spending the whole day at the pool. We went out to dinner a few nights, out for ice-cream at this yummy Hawaiian place, a night at the Street Fair, it was an eventful week and yet not so much. We all had so much fun swimming and of course Sydney wanted to swim all day and I mean ALL day. Seth loved being in the water, I think that was the only time he was really happy on the whole vacation. He had a horrible first night...I mean horrible, I don't think he has had a night that bad since he was a wee little guy. He had so many seizures and he just cried everytime he had one. So Sunday I called Phoenix Children's Hospital to talk to his neurologist and ask what we should do. It was a different doc on call so we were told to up his dose for the next 24 hours and get a hold of Dr. Bernes on Monday. So thats what we ended up doing and we have a new med for him which we had a few problems getting it so his first dose was Friday night and I would have to say that I have seen an improvement but they have not totally stopped. I thought Sunday night was gonna be the only rough night but man was I wrong. I thought for a few days that it was just because we were out of town and he was not in his own bed but by Thursday I figured that something was wrong because seriously the only time he was happy was when he was in the pool. Friday night was our last night and we decided to go out for dinner and that is when Seth decided to start his fit. After we got back to our room I figured we just needed to get him to bed and he would be fine. At about 11pm he decided to cry and cry and cry and he did that for about 3 hours and finally I just put him in the living room because I did not know what to do with him...then after 30 minutes I felt bad and went out to him and gave him some tylenol and  camped out on the pull out couch with him and finally he fell asleep. Saturday morning we spent the morning packing up everything and cleaning up and we headed out at about 9:45am and got home about 1:15pm. Sydney did great on the drive home but again Seth was a different story.

So after we got home and unpacked I tried to relax a little bit before Twilight opened because I needed to take him to the doc but I did not want to go to an urgent care. We got to Twilight at about 6:30 and by 7:45pm we were still not in a room. Seth was getting a little annoyed and so was I but I did not want to go anywhere else and I did not want to go home because I felt something was buggin him. By 8 we finally got seen and I mentioned that maybe it was an ear infection because of how much we were at the pool and of course his ears were perfect. So she looked in his mouth and did a swab on his throat because it was a little red and of course the test for strep was negative. So with Seths history we also had to check for a UTI which of course I knew that they needed to do but so did not want it done for his sake. And guess what showed up + for UTI. So after all of that I got home close to 10pm and was beyond tired and so was Seth and he went right to bed and slept through the whole night which he did not do the whole time we were on vacation.

Here are some pictures from our fun vacation.

Getting ready to go hang at the pool

Syd playing with a ball

Not a happy camper

Sydney swimming on dads back

Seth sleeping on daddy

He was so tired he slept for about an hour at the pool

Sweet Ezra

Syd had so much fun with her dad

Lisa teaching Ezra to dance

My little fish

Dad with his muffin

So Sydney would only go on the slide with an adult and finally we convinced her to go down with Lorelai and this is what we saw...Sydney would not let go of Lorelai. I am so glad Lorelai was such a trooper and let Sydney hold on to her for dear life.

Lorelai going down the slide by herself...she LOVED it. (sorry the picture is blurry)

Topher all by himself...it took him a few days but he finally did it!

Sydney going down on the last day with daddy

Having a melt down. What would a day be without a melt down?

So Matt was spending some time with Seth on the last day and the slide was closed for about 10 min so we was going over to the slide and just putting Seth on it to feel the running water. Seth was laughing so hard so and when Matt picked him up his shorts were completely down to his ankles...it was too funny. After I knew that he loved the running water we decided that he needed to go down the slide so Mike agreed to take him down and that boy thought it was the best thing ever. He had the biggest smile on his face. 

He was so happy

I love this one

We should have been taking him down the slide the whole week.

And now he is ready for a nap.

So even thought Seth was not too happy the whole trip we had a great time and we love going to Palm Springs and just hanging out. Last year when we went to PS our lives were a little bit of a wreck. We had just gone through two of the biggest trials ever...one losing John and then the whole NICU with Seth and him being positive for cCMV. So needless to say last year we were in a little bit of a daze. This year by Gods grace we were doing a lot better. Also last year Lisa and I spent a lot of time at the pool during the kiddos naps but this year we did not do that once and honestly with both of us pregnant and so very tired I do not think we would have made it down at the pool. We had a great time and Thanks so much MacCallums for inviting us with you guys again!

There is always something.

This past week has been a little crazy. Seth had a fever over the weekend so I decided to take him to the Docs Tuesday and sure enough he has an infection....a GUM INFECTION! I have never heard of a little kid getting a gum infection unless they never brush their teeth and I brush Seth's teeth every day so I was a little confused. I guess it is a bacteria strain from strep but in the gums. It is on the top gums in the front. You just have to touch them and they start bleeding...poor guy. So needless to say he is on another round of antibiotics for 10 days, I hate giving this little muffin medicine, it breaks my heart.

On Monday Mike and I were talking about Sydney and getting her into a program to get her out of the house and for her to do something that Seth doesn't do. She has a really hard time when therapists come over and she can not be a part of it so we decided we would send her to preschool 2 days a week (Tuesday and Thursday) from 2-4. She cries when we drop her off but when we pick her up she is all smiles. I think this will be good for her and at the same time I was not wanting to send her to school. I had really gotten things going at home on the homeschool side and we were doing it every day. She was even asking to do some school work on the weekend. We are still planning to homeschool. I work with her M W and F...and when it is time to go into kindergarten we will hopefully do homeschool as long as the schedule works out with everything that Seth has going on.

Here are a few pictures on her first day of school before we left the house. If you notice in every picture her best friend is in the background just hanging out :)

Seth in occupational therapy on Thursday Seth put his little legs under his body and got onto his forearms and started to rock. This is huge for him because he has never put any weight onto any part of his arms. So I was so excited for the little muffin. 

So in the next few months we have a lot going on...

September

 -Vacation (much needed)
 -Moms Birthday

October

 -Seth has surgery 4th-6th

 -Baby shower

 -Dads Birthday

 -Lisa has her baby hopefully :)

 -Halloween

November

 -Sydney's 4th Birthday

 -Lorelai and Lisa's Birthday

 -Thanksgiving

December

 -7th BABY due

Jen

This past weekend a friend of mine that I met while in high school through EVBC was involved in a car accident. (story here) She was hit by a semi from behind and she lost her two little babies in the accident. Liliana was 13 months and Gabriel was 3 weeks old. Sonja one of her closest friends has been giving me updates when she can. Jen will physically be fine, a few broken ribs, stitches, and staples in her head. No brain injury or internal injuries.

I can not imagine the road that Jen has in front of her and I also have a hard time understanding when things like this happen. I know that God had a reason. I know the truth and I faith in Jesus but yet at the same time I can not help but ask why? Why did you take those little precious kids and leave her here? I know that God has a reason and we may never understand it but He does and I just have to have faith.

Please pray for her if you get a chance. Pray that she is filled with an overwhelming sense of peace. I know that there will be lots of dark days but pray that she runs to Him. The funeral for the babies is tomorrow at 4pm. I can not imagine losing one baby but to lose both is just so heart wrenching!

Love you Jen!

Birthday Man!

HAPPY BIRTHDAY TO MY WONDERFUL HUSBAND!

Michael Anthony Marinello is 28 years old. Holy Cow we got old fast :) I can not believe that I have spent 8 birthdays with him and 6 of them we have been married for! I hope that you have a great day and you get everything that you wanted. The kids and I are taking him out tonight to Joe's Crab Shack which is one of his favorite places but I really do not like fish or the smell for that matter so I only go when he really wants to go and I thought I would let him pick where he wanted to eat dinner for his birthday. I wish I had a baby picture that I could put up of him but they are all packed away since we moved into this house I only unpacked what we needed. So anyways, Happy Birthday to MICHAEL :)

Not a ton happening in the Marinello household which I think for us is a good thing. We leave next Saturday for Palm Springs for a week and I am so excited to just hang out and spend some time with friends and be at the pool all week...although I am not too excited about being in a bathing suit in front of people but I am going to have to get over that real quick.

I have been pretty consistent for the past two weeks and homeschooling Sydney and she actually really likes it and enjoys doing her worksheets and learning how to write her letters. Mike and I talked the other night about getting her into a preschool so I think we are going to send her two days a week and I will work with her the other days. She just needs a place to get some energy out and also learn cause I think she gets board really quickly and I also have to work with Seth so school might be a really good thing for her. I am going to call the school this morning and see what is available.

Seth finally got an OT and she will be coming every Tuesday and Thursday at 10:30am. His OT works really well with sensory issues which is really good for Seth so I think she will really help out. Today I have his support coordinator coming out to go over his IFSP which is just basically goals and renewing his therapies.

In 2006 I started taking classes for medical transcription and I ended up getting an extension about 6 months before Seth was born. But since June of 2009 I have done no school at all and I haven't really had the time for it. But I decided that I really wanted to finish it so I re-enrolled which they were really nice about it and I only have to pay for the new classes that I have to take not the whole course. So I am waiting for it to ship out to me so I can get going before our little girl is here. I don't think I will be able to finish before she comes because we go on vacation next week and then we have Seth's surgery when we get back...a baby shower :) Sydney's birthday, Thanksgiving, and then here comes baby number 3. But I am really glad that I am getting on the ball with this because I really want to finish it.