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.

VCUG and Neurologist.

So last week Seth had 3 doctor appointment and they were not our favorites but we did get some answers. Tuesday we went to Banner and he had a VCUG done which is a voiding test where they put some liquid through a catheter and watched where it went. (meaning if it goes back up into the kidneys or stays in the ureters and out through the bladder) Seth's did not. His went straight back up to the kidneys. When he was born he had a grade 4 or the right side and a grade 5 on the left side. In February he had a minor surgery where they put deflux balls to stop the urine from going up to the kidneys. He has had one UTI since then but as of Tuesday that surgery really didn't help at all (Left side is still grade 5 and right side is a grade 3) we were just lucky to avoid them. So on Thursday we met with the urologist and they did an ultrasound on his kidneys and ureters and then came and talked with us. From the results of the VCUG and the ultrasound they decided to go ahead and do a surgery to correct it. It ends up being a 99% success rate which we are happy with. I really do not want him to have to have surgery but if it mean no more UTI's and antibiotics for this reason I am okay with it. So on October 4th we have to be at Phoenix Children's Hospital at 6am and the surgery will probably start at 7:30am if they are on time. The surgery will last anywhere from 3-4 hours and they will but below his belly button and open up his bladder. They will then reconstruct/reroute his ureters. If they have to cut too much of the ureters then they will have to insert a stint which will most likely happen and that they will leave in for 6-8 weeks and then do an outpatient surgery to take it out. After the surgery he will be in the hospital for 2 days minimum depending on how he does. He will have a lot of bladder spasms after so they will give him an epidural to help with the pain and stuff and then start pain meds. He is one tough cookie so I think he will do great. In my head because he is not walking yet maybe he wont have a ton of pain like the kiddos who want to get up and move at one but yet on the other had you hear that you always heal faster if you get up and walk around so I am not quite sure how it will go but he will do great like he always does. Here are some pictures from the VCUG.

Not a fan of the purple gown for boys but couldn't do anything about that.

Just hanging out.

This is what happens when you dad is a goof and acts like a robot when he got his vest on. I could not be in the room during the test because I am pregnant but I had to get a picture of them.

Right before the test and not too happy.

And again not happy.

During the test they have to strap him to a board at his head, stomach and feet and he was not a happy camper but did not cry until Mike had to put his arm above his head which if you know Seth he LOVES his hands...so that when he started freaking out. The nice thing is that they just filled his bladder until its full and he went pee right away so he only had to be held down for like 5 minutes. 

So Friday we met with his Neurologist about his seizures. The doctor decided to try a drug keppra (that he was on before the spasms) and we are going to try it for 2 weeks and if it doesn't work then we have one other drug Depakote to try for two weeks and then if that does not work we will go with vigabatrin (the one that can cause vision loss) So far we have seen a big decrease in is spasms. He is still having them but it is a lot less and we still have next week when we increase the dose so we are praying that this actually helps so that he can just stay on this drug until they are gone. I love this drug because of the fact that the side effects are so little and it is such a safe drug. So if you think about it or Seth just pray that they drugs that he is on right now will keep working and we wont have to change anything!

Seth and Swimming.

So last week Seth had 3 doctor appointment and they were not our favorites but we did get some answers. Tuesday we went to Banner and he had a VCUG done which is a voiding test where they put some liquid through a catheter and watched where it went. (meaning if it goes back up into the kidneys or stays in the ureters and out through the bladder) Seth's did not. His went straight back up to the kidneys. When he was born he had a grade 4 or the right side and a grade 5 on the left side. In February he had a minor surgery where they put deflux balls to stop the urine from going up to the kidneys. He has had one UTI since then but as of Tuesday that surgery really didn't help at all (Left side is still grade 5 and right side is a grade 3) we were just lucky to avoid them. So on Thursday we met with the urologist and they did an ultrasound on his kidneys and ureters and then came and talked with us. From the results of the VCUG and the ultrasound they decided to go ahead and do a surgery to correct it. It ends up being a 99% success rate which we are happy with. I really do not want him to have to have surgery but if it mean no more UTI's and antibiotics for this reason I am okay with it. So on October 4th we have to be at Phoenix Children's Hospital at 6am and the surgery will probably start at 7:30am if they are on time. The surgery will last anywhere from 3-4 hours and they will but below his belly button and open up his bladder. They will then reconstruct/reroute his ureters. If they have to cut too much of the ureters then they will have to insert a stint which will most likely happen and that they will leave in for 6-8 weeks and then do an outpatient surgery to take it out. After the surgery he will be in the hospital for 2 days minimum depending on how he does. He will have a lot of bladder spasms after so they will give him an epidural to help with the pain and stuff and then start pain meds. He is one tough cookie so I think he will do great. In my head because he is not walking yet maybe he wont have a ton of pain like the kiddos who want to get up and move at one but yet on the other had you hear that you always heal faster if you get up and walk around so I am not quite sure how it will go but he will do great like he always does. Here are some pictures from the VCUG.

I think they need a new color for the boys gowns! Just hanging out before the catheter.

So of course my husband would love putting his vest on and acting like a robot. I could not be in the room during the test so I just took some pictures before.

So Friday we met with his Neurologist about his seizures. The doctor decided to try a drug keppra (that he was on before the spasms) and we are going to try it for 2 weeks and if it doesn't work then we have one other drug Depakote to try for two weeks and then if that does not work we will go with vigabatrin (the one that can cause vision loss) So far we have seen a big decrease in is spasms. He is still having them but it is a lot less and we still have next week when we increase the dose so we are praying that this actually helps so that he can just stay on this drug until they are gone. I love this drug because of the fact that the side effects are so little and it is such a safe drug.

While we had the two urologist appointments Sydney went with the MacCallum kiddos to grandma Patti's house and go to go swimming. I can not tell you how much this little girl LOVES to swim but she would swim all day if you let her. Here are some pictures I stole off of Lisa's facebook of her and her friends having a great time.

Topher, Sydney, Lorelai, and Drew

Ezra, Topher, Sydney, Lorelai, and Drew

Sydney Flying! I so LOVE it!

Okay so I have to do some explaining here. Lisa said that she wanted to get a picture with all of the kids jumping into the pool and Sydney just didn't get it. So all of the kids are in the air and Sydney is just watching.

And watching again :)

Lisa got a great idea to put Sydney with Drew so that she could tug her when it was time to jump.

FINALLY!!! So freakin cute.

I love You!

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves

I LOVE you Seth and I will never ever give up trying to make everything perfect in your life!

Oh Boy!

I just uploaded pictures that we got done in December on my other blog and Seth looked so amazing. These past few weeks or about a month Seth just hasn't looked that great. I have no idea if it has to do with his blood, seizures, heart, or the fact that he attacks his face all the time but it makes me sad that he looks sick sometimes. I just wish that he could look healthy again. I have been starting to get overwhelmed again with doctors and just stuff with Seth and I get worried very easily. I know that everything will be okay and that God has everything in control and everything He does is perfect but sometimes my mind just takes a while to get there. I also get worried/anxious when I think about having this little girl and how I will handle everything. Our planning was not perfect but Gods planning is so I will trust in that.

About a month ago we have ASDB come out again and I am not sure if I posted about it but we were told that he does not have CVI but rather ONH and that the eye doctor report actually shows nothing to do with CVI and has ONH listed. The thing is we knew that he had ONH (optic nerve hypoplasia) which means his optic never was not fully developed and we have known that since he was 4 months old. We were just told along with that, that he has CVI. So I have to get him into the eye doctor to find out what he really has (not till Sept.) The problem is that we have been doing things to help him as if he had CVI not ONH. ONH there are other things to do that involve bright colors and waiting to see what he really sees. It is like CVI in that it wont get worse and it can get better. The eye report that I read from his doc also says his pupils were non responsive to light which is not the best thing. I looked it up online dealing with ONH and basically it means it is a more severe case. But this will all be a waiting game until he can tell us what he sees. We also found out that his eyes are actually sensitive to sun light and it actually hurts his eyes to be out in the sun (thats why he NEVER opens his eyes when we are outside) so he needs to wear sunglasses when he is outside. 

So today I went to the doctors and right by my OB is his eye doctors office and inside is a children glasses store and they sell these sunglasses that work well for small kiddos so I got two pairs just in case I lose one. Thursday morning we have ASDB coming again and she will be bringing some more sunglasses (baby bandz) that strap to his head but we have already tried these and he hate them. Today the lady at see saw optical said that a lot of babies have had problems with them (baby bandz) so I am glad that I bought the ones at the store. Here is a few pictures of him in his new cool shades!

Family Pics

We got pictures taken in December 2009 when Seth was six months and Sydney was 3 and we finally got the CD with the pictures so I can finally post them. I am a little jealous of the way I looked then because now I so do not look like that. A little girl has taken over my body but in the end it will be worth it! There were so many so I had to pic a few to share...a few meaning about 30 :) So here they are have some fun!

I love her eyes!

He is so precious.

What a stud muffin!

Daddy's little monsters.

Oh I love him!

She makes me laugh all the time!

So freakin happy.

Trying really hard.

I think he is pretty darn cute :)

My second MIRACLE and thats an understatement!

Oh I love this one too!

Marinello's