Hippo Therapy

Seth started doing hippo therapy a few weeks ago for O.T. So every Thursday morning at 8:30 he gets to spend an hour on a horse! The first time ever he hated it! But now he smiles and even sometimes falls asleep. There is something about the rhythm of the house that just calms him and he just wants to sleep. Here are some pictures of his first session. Ignore the fact that his helmet is pink...it was the only one that would fit his small little head :)

Sydney had a great time. There was a little play area and she was able to pet the goats and the mini horse. She really wanted to ride the horse like her brother but we did not fill out the paperwork for her so Melanie promised the following week that she could ride the horse after Seths session.

Disneyland

September 29-October 2nd we got to get away and go to Disneyland. We decided we would take just Sydney and leave the little ones behind...as much as I didn't want to I'm really glad we did because it was so crowded and Seth would not have lasted very long at Disney. So my mom and dad kept Seth and our friend Jen kept Ember at our house. It was hard to leave both the little ones and I did have to fight back some tears but they were in good hands!

We left Thursday after Mike got done with his work golf tournament so we didn't get on the road until about 2:30pm. We got to Palm Springs about 7:40 and stopped at the Walmart in town and picked up a few things for the hotel room and got a bite to eat then continued to the hotel. We got to the hotel around 9pm and hung out in the room for a little bit then crashed for the night because we wanted to have a early start to the day. We stay at the Marriott Maingate and we love it...especially because we do not have to pay for breakfast! They provide a hot breakfast and it is amazing for being free. We stuff ourselves so that we can go as long as we can at Disney without eating a ton of expensive food. So Friday morning we got up ate breakfast and got to Disney about 15 min after it opened. We set out for Syd's favorite ride Nemo and waited like 5 min and then moved on to the rockets, Peter Pan and the carousel. By this time it was 10am and California Adventure was open and I was wanting to ride the new Ariel ride so we went over there and there was not even a wait we got right on and I loved it. We've never done the 3D Toy Story either so we hit that up and Sydney loved it. We also convinced her to do Soarin California which ended up being her favorite ride all together. After that we went back to Disneyland for the rest of the day and we had so much fun. We even got to do Goofy's Kitchen for dinner and Sydney enjoyed it so much! We got back to our hotel room around 8:30pm and we were exhausted. Sydney went non stop for over 12 hours without a stroller and she was so well behaved!

Saturday at Disneyland was insane! We had no idea but it was "Gay Days Anaheim 2011" while we were there and the place was packed. We did as much as we could but the lines were so long. What was maybe a 20 minute wait on Friday was anywhere from 1-1.5 hours. But the best part was getting to eat lunch at my favorite place Tony and Romas! Oh my goodness I LOVE that place and pray it never closes down!

Sunday we decided to go to Knotts Berry Farm. I haven't been since I was little and wanted to try it out. We got Sydney to do the log ride with us twice which is huge cause she wouldn't do it at Disneyland. The first time she didn't know what to expect the second time when the drop came she SCREAMED! But it was well worth it! We left when it closed at 5pm and went back to our hotel for dinner and then spent the last few hours before bed at downtown Disney. We love hanging out and just looking at all the little shops and then staying for the fireworks!

Sunday we packed up our stuff and ate a big breakfast and headed back home! Seth had a good time with my parents and even drank a few bottles for them. Ember spent every second with Jen and they did so much together including shopping :)

It was a great getaway and we had so much fun spending a few days with just Sydney! Sydney did talk a lot about Seth and Em and that she missed them and so did we. Mike did Disneyland every year with his dad and it is something that he wants to continue so next year I think the little ones will be ready to experience it as well!

Birthdays/Palm Springs

My birthday is August 29th and Mikes is four days later on September 2nd. This year we did not do much for our birthdays at all! Mike had a babysitter lined up for my birthday but it didn't work out so we just kind of laid low :) We both however ended up getting tattoos the weekend before which could count as our birthday gifts :) I honestly have been so bad with taking pictures that I'm not sure I even have a picture of our tattoos but I will post some soon. Mike got a graffiti style Mickey Mouse spray painting the word Disney and the artist did an amazing job! She could not get it done in one session because she only had a two hour slot so he got the outline done and then a week later went back for the color. I got two dandelions intertwined with each other and it's blowing in the wind and turning into 3 birds. Two black birds and one blue symbolizing the kiddos. It looks amazing and I'm so in love with it. Thank you Matt and Lisa for watching the kids for us so that we could go out and spend some time together!

August was a busy month! The 14th-21st we did our trip with the Finneys and MacCallums to Palm Springs and had a great time! Our days consisted of Lisa and I working out in the am-pool until lunch-lunch time-naps-dinner-game times-hangout-sleep-repeat! Thursday was street fair night which is always a fun time. We even had a bug incident this time which is way too hard for me to type out but it started with Lisa yelling at me to get it off and ended with Sydney, Lorelai, and Topher screaming and crying and me almost peeing my pants! We all had a great time and Sydney had so much fun she is still talking about it and we are in the middle of October! I have very few pictures because I forgot my camera at home but Mike did take some and well the rest I'm gonna have to steal from Lisa :) so when I can I will post some pictures!

CSF

In April of 2010 Seth got his first set of tubes in his ears and it was because fluid would just sit by his eardrums, not because he had constant ear infections and actually thinking about it he never had any up to that point. So he got the tubes put in his ears and then all of a sudden he gets them at least once a month and it is insane. Always draining and typically clear or a little yellow. Sometimes he gets them really bad and they are gunky and those for sure I know have been infections but today when I took him to get them checked out and once again they say just keep putting drops in them. But when I was leaving I got this thought that what if it is CSF and the more I think about it and the more I looked it up the more worried I got. When you leak CSF and then get tubes in your ears it is a direct channel to leak out and then cause infection and it can also cause infection in the brain. It would explain a lot of this if this is what it really is. I called and left a message with our neurologist and really would like to get him in next week to get it checked out. If Seth could tell me that his head hurts, or he is dizzy or any of that stuff this would be a lot easier. He is such a good natured little boy so when he is crabby and being a butt more often than not it makes me think that something is weird. If you could please pray that it is not CSF and that he just has a ton of infections that would make me feel so much better. Thanks so much.

Tubes

So July 7th Seth was due for a new set of tubes and another ABR hearing test. I was really unsure about going through with the surgery because of the cold that he had and how bad his breathing can get. They kept telling me that he would be fine for surgery so I decided I would go down there just to prove them wrong. So Thursday morning I had to get up and get him to the hospital by 5:30 cause the surgery was at 7am. I was totally waiting for them to send me home but he ended up not having a fever at all just sounded really congested. It just so happened that the anesthesiologist worked many years with my mom and he came in a talked with me and said that he would actually intubate him and give him 2 breathing treatments before the surgery. Normally with a 5 min surgery they would just knock him out but because of his situation and the fact that he was already so congested they decided to intubate him plus the hearing test would be about an hour and he has to be under for that as well.

So about 7:10am they took him back and sent me into the waiting room. I saw the doctor walking around 10 mins later so I knew that they have moved on to the hearing test and were done with the tubes. I knew the hearing test itself was about an hour so around 8:30am at the latest I thought that they would be done but NOPE. The came 9am and still nothing so by this point I am getting worried and thinking either the hearing test is not going well or something else is going on. By 9:45am the doctor finally came out and sat next to me and said, "He has profound hearing loss in the left ear. The right ear is perfect and he should be able to develop speech just fine." I lost it and started bawling he basically just handed me a box of tissues and said I am a guy and not good with this stuff. I was a mess and felt so bad that his hearing is going as well. I prayed all the time that if he is going to be blind please let him keep his hearing. It was a very hard blow and something that I still have a hard time with. I went back and saw him as soon as they let me and he was so not happy. The nurse said that he had some issues after surgery with breathing and his O2 at 82 but after they suctioned him he went back to 97. The doctor came back in and I had a few questions for him. I asked about the possibility of hearing aids and if he thinks the hearing will leave his right ear as well. He said that we can for sure aid him but that when he turns 4 he would like to do a BAHA (bone anchored hearing aid) basically he described it...they would go in a place a titanium implant into his skull and then he would have a little button on the outside of his head by his ear and the hearing aid would transmit the vibrations to the good ear and make him hear. Kind of confusing but makes sense when they explain it :) He also said that he does not think he will lose the hearing in the right ear because he should already show signs or loss by now. I will not get my hopes up because I read so many stories of cmv kids randomly losing their hearing at all different ages...so I will just pray he keeps it and we are able to get the BAHA.

So we got to go home and went back to Dr Fucci a week later. He checked out his ear and explained his hearing loss a little more. Basically in right ear is perfect and in normal ranges for everything the left ear on the other hand is pretty bad. He said that Seth starts hearing sounds of trains or airplanes. So if I were to sit Seth next to a train he can barely start hearing that. The crazy thing is how fast his hearing left. I remember in the NICU hearing was perfect and then in April 2010 they did his first set of tubes and an ABR hearing test. I thought he said that it came back great but actually he was already at slight hearing loss in his left ear. Just before Christmas I noticed him always holding things up to his right ear and for a little bit I though oh no his hearing is gone from the left but he would always hear the quietest things so I thought maybe he rather hold things up to that ear and not his left. I should have known something was going on.

If you think about it please pray for Seth that they hearing does not leave his right ear and pray for me that I keep up the strength cause this road is hard and I do get tired!

Seth turns 2!

So Seth had his second birthday and it just so happened that it was also the same day as his Cold Stone fundraiser so why not have a fun day at Cold Stone!

Lisa and I met up at Cold Stone and then quite of people came around lunch time and got to see Seth and have lots of ice-cream. Lisa and the kids got him a little button for his shirt, a piano which he loves and also a thing that makes a weird noise...I have no idea what it is called :) We had a great time there and of course I was the one that left my camera at home on his birthday but Lisa did get a few pictures but he was quite a pill that day so here are a few that I stole from her FB page :)

The only way he was happy...hanging upside down

Drew with Em

 See not happy! (he did have surgery 6 days before maybe thats part of it)

OH Goodness!

Seth we LOVE you so much and we are so blessed to have you as our son. You are an amazing little boy who surprises us every day. You have been through so much in your 2 years of life yet you are so very strong! You can light up a room with your great big smile and your laugh is so precious and you can not help but smile. You might be one of the silliest, most stubborn, craziest little boy I know. I love you with everything that I have and can not wait to see what God has in store for you! 

Surgery!

Okay so can we say I am a little behind on this blog, oh goodness! So this will be the first of many posts to come so keep your eyes open for new ones :)

Seth had his g-tube surgery on June 16th.

Wednesday night I took Sydney over to the MacCallum's because they were amazing and totally willing to keep her for the few nights. That night I decided to try and keep Seth up a little later because after 3am he could not have any pediasure so I think I got him to last until 9:30pm and he was ready for bed. I set my alarm for 3am to try and get Seth up and eat a little bit but of course he wanted nothing to do with it and went right back to bed. We woke up and got Emmy to my moms house by 8:00am so that we could give her any instructions and went on our way to Phoenix Children's. We got there at 9:30am so guess what we waited and waited for what seemed like forever. We finally got into a room and got him in his gown around 11am and then we waited some more. Let me remind you that Seth has not eaten anything since 9:30pm the night before and he was hungry. He was allowed to have clear liquids up until 8am and guess what SETH does not drink anything but his pediasure but man I had to try and he refused. So around 12:45pm the nurse came in again and said that the surgeon had to go into an emergency heart surgery so when she is done she will come and do Seth. But let me tell you Seth was such a happy boy playing on the hospital bed and you know whats even better...........HE CRAWLED for the first time ever. I had to sneeze so as I was getting a kleenex Mike was yelling at me to look at Seth cause he crawled but I did not believe it at all, but then all of a sudden I caught a little glimpse of what he was talking about. So I told Mike that he had to have his phone on video and have it in the ready position. I got the little piano he was playing with earlier and started moving it away from him and he decided to get up on all fours and just decided to camp out there for a little bit and then all of a sudden he was off and he decided he was just going to crawl across the entire bed! It was so AMAZING! For a while I always had expectations for Seth and then I decided to always fight for him and try my best to not set high expectations that can not be met so that I will not get disappointed so that is what I did and you know what when he crawled it was so amazing because I never knew if he was going to be able to do it and he proved that HE can and he does it so well. Mike and I at that moment actually wanted to pack up our things and leave because we were afraid that after his surgery he was not going to start crawling again because it will be on his stomach. But since then he has done it a couple times. He does not do it all the time and not even every day but he can crawl and that is enough for me.

Okay back to the surgery. So finally about 1:45pm they took him back and every time he goes back you would think it would get easier but it never is. The surgery itself was about a half hour but it took more like an hour until we could go back and see him. He stayed sleeping for a while with oxygen and finally we got a room around 4:30pm. He was in quite a bit of pain and was on morphine right when we got in the room and went back to sleep. Around 8:00pm Seth got a roommate and can I just say NEVER put an older kid with a little one. I honestly do not get that at all. The surgery was done at the new hospital but he had to be at the old one for the stay and that means sharing a room. I can not wait until everything is at the new one and then we wont have to share rooms anymore. Anyways this boy was 15 years old with a really bad kidney infection and horrible headaches and then you have Seth crying during the night and I did not get much sleep I am thinking about 2 hours at the max. I had a night nurse that I could barely understand and she wanted to wake him up to change his diaper and I just wanted to smack her because why would you wake up a sleeping "baby" toddler to change the diaper, who just had surgery and needs to sleep not wake up? I told her no and we can change it when he wakes up. He woke up at about 3am and I was asked again to change his diaper which I did even though it was totally dry! We then got a talk from her and from what I understood he needs to have wet diapers or we were not going to be able to go home. Sure enough by 6:45am he had 3 very full diapers and she left me alone. Around 10am on Friday we had the dr come in and she told us that we would be able to go home if Seth could keep his normal feeding amounts down so we had to wait for the nutritionist to come in and talk to us and figure out what his feeding schedule was going to be. I know for a simple fact that I did not want to have feedings at night because he already knows how to sleep through the night and I really do not want him to be so different than other kids and eat at night and only a little bit during the day. If he was totally not gaining weight and actually losing weight than I would do night feedings but I just did not see the point as of right now and I was so glad that she agreed with me. And since he does take a bottle and about 8oz each time we did not have to get a pump. Everything is gravity which is really nice. So by this time it is about 1:45pm and He has not eaten for over 24 hours and they decided to try some food. So at about 2 we gave him 6oz of food and kept it down just fine!!!!!! YAY we were going to go home and then we both looked at each other and had no idea how to do any of this and we knew that we needed to be able to because whatever food he does not finish from the bottle goes straight into the tube and that mean in a few hours he was going to eat again and we had no idea what we were doing. So when the nurse released us we asked her to show us how and she did but apparently there were some other things that we needed to know that we found out 2 weeks later. So we got to go home...and after we got home I went and got Sydney for the wonderful MacCallums and my dad brought Emmy home for us. The first 3 nights were pretty rough cause all he wants to do is sleep on his belly and it really hurt him to do so. But can I say he slept a lot and I loved it. I think the first three mornings home he did not wake up until 10am and Mike and I were able to sleep in until about 8:30am which was AMAZING! The next few days took a while to get use to and you always realize when you do something wrong because you will either have food or medicine all over you! I think I have done that about twice already! Giving him is medicine is about a million times better...what use to take us about 30-45min to give meds now takes us about 2 minutes so that is a major blessing and benefit to having the g-tube! Thank you all who were praying for Seth and those that continue to do so we are so blessed to have prayers going for our special little boy.

In recovery a little longer than planned cause he needed a little help breathing

What is stomach looks like now...thats his new little friend.

Blog Posts up next:
Seths First Birthday
Ear Tube surgery
Wheelchair and appointments
Palm Springs

CMV awareness month!

June is national cmv awareness month. I have a hard time with this one and I will try to explain it the best way I can but I can not promise that it will make any sense.

CMV has changed my world upside down. I hate the virus with a passion! It has done horrible things to innocent little babies and yet there is nothing to stop it and very little people know about it.

I will never stop a pregnant person and tell them about cmv and what it can do to the baby. If they ask that is a different story but I am not going to scare them and freak them out for no reason and yet at the same time I think people need to know about it so we can STOP it with a vaccine! There is no other way to stop cmv unless there is a vaccine. It is such a fragile virus and it can be passed in so many different ways and even doctors do not understand the virus completely! I want more than anything to have a vaccine so that no one else has to go through what we go through as a family but more importantly what Seth has to go through every day! I wish that there was cmv testing on all babies that were born and failed their hearing test so that we really know how many babies this effects and so we can find a vaccine.

I have a hard time when people say this can be stopped with simple hand washing...it's not that easy. I'm not a dirty person I wash my hand very often I most likely did not get it from not washing my hands but rather kissing my own daughter, sharing her drink, kissing my husband, watching a friends kids, working at the church. And to be honest so very few women who even get cmv even transfer it in utero, that is why its so rare. As of right now there is nothing we can do to stop cmv except eliminate it with a vaccine and I'm all for finding one! I'm all for raising awareness but in a tactful way. I will share everything I know about it to whoever wants to listen but I do not want to scare you for no reason either because most likely you have already had it and if you don't you probably will not transfer it.

It's hard for me to live with the guilt and the everyday heartache that I could not keep my little boy healthy inside of me which is suppose to be the best place for him and in the end it caused more damage than being out of the womb. But God knows what He is doing and I have to keep asking Him to show me the way! He is the healer of all things and He will be glorified and who knows Seth could be here to change the world cause He truly is that special!

Thoughts, Fears, and Eternity.

I see little boys that are Seth's age and I have a hard time. They are running around at the park, fighting with their siblings, eating solid foods without gagging, talking all the time, coloring on walls with markers, cutting their own hair, making a huge mess while they play in the sink, or saying "mommy I love you." I'm sure it's jealously cause it is wanting something that I do not have or can't have but yet at the same time it hurts and it is hard. Life is hard!

It is hard to think that I might not see Seth stand up on his own, or walk down the hallway, or eat food off his plate, or say "I love you", or play sports. I try not to focus on these thoughts but at night when everyone else is asleep I have these thoughts. The worst one I have is that if I go to sleep and I miss something happening to my little boy and I wake up in the morning and something happened. That's what keeps me awake.

I know God is in control and He has our days already numbered and everything is for His glory...I just need to constantly remind myself that what I know trumps what I feel and that God is glorified and God will take care of my family and my little boy! God is the most perfect Father and I am just blessed that He calls me his daughter. I didn't do anything to deserve His grace but He gave it to me. God Has Seth right where He needs to be and He has me where I'm suppose to be. I'm not going to lie, it's hard and sometimes it sucks, but eternity FOREVER awaits for me and one day I can call that my home!

GI Appointment

So it has been a while since I have posted. We have gone to the urgent care again with Seth last Monday and he got a new steroid and an inhaler with a chamber. He does okay with it but he really hates it. He has been hitting his head a lot lately and only on one side and the tantrums that he has been throwing are CRAZY so we have an appointment with his neurologist on May 6th so maybe we will get a few things answered. 

Last Wednesday we had an appointment with our GI doctor and they decided that my precious little muffin needs a g-tube. When we got there they weighed him and he gained 2 POUNDS in 3 months!!! That is HUGE and awesome...but it did not solve the g-tube issue because he still has trouble with the whole swallowing/aspirating. The doctor thinking that the pneumonia eventually will take him and would rather get the g-tube and use that as a safety net.  We have an appointment with the surgeon on May 11th and we also need to do another barium swallow study. It will tell us what he is able to handle and what we will have to put in the g-tube. We know for sure all his meds will have to go into the g-tube but we are not sure about his bottles. I would LOVE to still be able to feed him and only use the g-tube for meds and if he gets sicks just some extra fluids. So if you think of it you could pray that we would still be able to feed him his pediasure through the bottle and not a g-tube. 

This whole g-tube has been really hard on me. I really do not want him to have to go through this and another surgery. Seth does not deserve this...he deserves way better than this. Watching him in feeding therapy and how much he really does not enjoy eating food and just how hard it is for him to just even figure it out and swallow the food and breathe at the same time. I hate what CMV did it him. I know that I should not think this way but sometimes my thoughts just go there. I wish I could take away all that he has to go through. I would get a g-tube and never swallow food again so that my little boy could. 

Seth has been really cranky lately and normally he is such a happy boy. I hate seeing him not happy and that something is bothering him. We have an appointment with his neurologist May 6th so praying that we might get some answers as to what is going on.

We had a great Easter and I need to get the pictures off my camera and onto my computer so the next post will be Easter and family fun. I hope that everyone had an amazing Easter!

ARISE MY LOVE

Not a word was heard at the tomb that day.

Just shuffling of soldiers feet as they guarded the grave.

One day, two days, three days had past.

Could it be that Jesus breathed his last?

Could it be that his Father had forsaken him?

Turned his back on his son, dispising our sin.

Oh hell seemed to whisper, "Just forget it, He's dead."

Then the Father looked down to his son and he said..

Arise, My love.

Arise, My love.

The grave no longer has a hold on you

No more death sting

No more suffering

Arise...Arise...my love.

The Earth trembled and the tomb began to shake, and like lightening from Heaven

The stone was rolled away. 

And this dead man the guards they all stood there in fright

As the power of love displayed its might

And suddenly a melody filled the air

Riding wings of wind, it was everywhere

The words of creation had been longing to hear.

The sweet sound of victory, so loud and clear.

Arise, my love. 

Arise, my love.

The grave no longer has a hold on you.

No more death sting no more suffering

Arise...arise....

Sin, where are your shackles?

Death, where is your sting?

Hell; has been defeated. The grave will not hold, the king.

Arise, my love.

Arise, my love.

Arise....Arise....Arise 

FUNDS FOR SETH!

So we have a new blog for our little muffin Seth. It is a blog for fund raising and to also let everyone know how things are coming along and of course how Seth is doing. Please if you get a chance go and check it out and follow us as we travel on this journey to do the very best for our little boy. Seth is a precious gift from God and deserves the best so please check it out!

http://fundsforseth.blogspot.com/

The kiddos.

Its been a while since I have uploaded some pictures from my camera onto my computer so I decided I would put some on the blog. These are from February and March, enjoy :)

She is the craziest girl I know but man I love her!

Ember trying out the bumbo

Sydney LOVES her sister!

Trying to sit in the bumbo and well she was actually able to get her little bottom in there.

First time with pneumonia (Feb 27th) he was able to keep his o2 stats up so we did not have to get admitted he was able to just come home after some IV antibiotics.

He decided he wanted the play-mat on top of him and he had so much fun doing it!

She is so funny! Only Sydney would walk around the house in just her undies and a helmet!

Sweet girl

We got Sydney some money jars and let her paint them and we have decided that we would start giving her a chance to earn some money and start understanding how it works. So we have decided that she will get 4 dollars every time we get paid and she will keep 2 dollars and 1 dollar will go into savings and 1 dollar with go into giving. Once she builds up enough we will open her up a savings account. She had so much fun painting them and she wanted me to paint one of them so I did but I was really proud of myself in that I did not help her at ALL with the two that she painted!

Ember Noelle @ almost 4 months 

(April 1st she will be 4 months) time sure goes by fast!

How can you not fall in love with this face???

She sure knows how to make us smile!

Out of all her toys on her "fun land" she wanted to play with the cup holders the most. 

Sweet muffin Seth at 21 months (on my gosh he is almost 2 years old)