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.

EEG results.

We had Seth's EEG on Wednesday and we also met with the Dr and we have decided that the best thing for Seth right now is to go on prednisone, so starting tomorrow he will start his 6 week course of it. The prednisone causes really bad reflux plus he already has it bad so if you think about it could you pray that he is not too miserable for the next six weeks. I will be taking him into the chiropractor a lot for the next six weeks to keep him comfortable. If you want to read more about the EEG and results you can go to his blog :) Gloriously Woven

Thanks so much for all of your prayers and support for Seth and our family!

Getting all of the cords attached to his little head.

Lookin like a mummy.

He did so amazing that day and was such a trooper. We love you Seth!

Results.

So on Wednesday Lisa watched Sydney for us while Mike and I took Seth to Phoenix Children's Hospital to get his EEG done. The test was suppose to be at 12:30 but they were a little bit behind so we did not get in till about 1:00. After the test we went across to another building to meet with his neurologist and talk about the results and medication for Seth.

The test was not a normal result but yet a better result than neurologist was thinking it was going to be. We have decided that the best route to take for Seth is to put him on the steroids, so he will be on prednisone for 6 weeks. For some reason everyone that I talked to about this including me thought that it was going to be a lot longer than 6 weeks but I guess 6 weeks is long enough to stop them...God willing! Dr. Bernes wanted some blood work done before we left to check his liver & kidney function, sugar levels, platelet counts and a few other things, so we headed down to the third floor to do his blood work. It was taking a lot longer than we thought it was going to and we had Seth's first Physical Therapy appointment at 4:00pm at out house and it was already 3:15pm. So I had to call Brenda, his PT, and ask if we could do it at 4:30pm so that we would not have yet another week without PT.

We got home at about 4:30 and had PT for an hour. He does for sure have high muscle tone in his arms and legs and low muscle tone in his torso. For this week we are suppose to be working on strengthening his abs by doing sit-ups with him. Our goal for the next few weeks are to get him to roll over from his back to his stomach and work on getting him to sit up by himself. I am really excited for PT to finally start and I really do like his PT Brenda.

Thursday while I was on my way out to meet Lisa and the kids for lunch I got a call from Seth's hematologist telling me that they have the results from his ultrasound that was on Monday. The ultrasound was on the whole abdomen and it was NORMAL! Everything was just fine and they have signed off so we no longer have to go and see the hematologist :) We will only have to go back to them if our pediatrician sends us there for a reason. The was the best news that I have gotten about Seth in a very long time and it actually gave me chills because it has been a long time since I have gotten some positive outcomes from the doctors.

Tomorrow (Sat.) we are starting the prednisone so if you think of it could you please be praying that first off it works and second off the side effects are not horrible and that he does not react badly from it. Tuesday at 10am Seth will be getting tubes in his ears to prevent fluid from just sitting in there like it has been for the past couple of months so if you think of it pray that everything goes smoothly from that as well.

Thanks again to everyone that has been praying for my little muffin and the family and thank you so much to those that have been here for me especially during all of this!

EEG

Tomorrow at 12:30 we have to take Seth to Phoenix Children's Hospital so he can have another EEG done. The test will be about an hour and they need him to be awake and asleep for the test. After the test the Neurologist will read it and then meet with us and talk to us about getting Seth on some steroids. This was something that I did not want but also something that needs to happen so it is a little frustrating and overwhelming for me.


I want Seth to be okay. I want the seizures to stop but right now I only give him the meds that I am told and they are not doing the trick so back to the doc again and praying for something to work out. This kind of tests I really do not look forward to (not that anyone would) and to be honest I get a little bit of anxiety about it. 


Please if you think about it pray for Seth and that if its God's will that He will heal him. I love him so much and sometimes the spasms bother him enough to make him cry and there is nothing that I can do for him. 

Spleen.

Tomorrow morning Seth has an ultrasound on his spleen. He has had an enlarged spleen and I have been holding off on the ultrasound because he has been sick lately. Please if you think of it pray that everything turns out to be totally fine.

Thanks again for all your prayers for my little muffin!

It's HARD....

Seizures are hard and I hate them. I do not know how to express to you how much they scare me and how much I truly HATE them.

I wrote some of this in Seth's blog "Gloriously Woven" so if you have already read some of it sorry.

Seth had his reflux surgery Feb 11th and that following Sunday he started to act like he was getting startled easily. It went on for about a week and then Monday (Feb 22nd) Lisa was feeding him and he did it at least 7-9 times in a minute period and I told her that "that" is what was concerning me and she actually said that she would call the neurologist so when I got home that is what I did. I got home and called and left a message and they called right back and said that they were going to have his actual doctor call me and talk to me. So he called me back around 4:30pm and told me he was having seizures called "infantile spasms". He said they are one of the hardest types of seizures in kids to treat who have a reason to have them and for Seth he does have a reason. If Sydney just came in to the doctor with them the mild medicine would work very well for her but that is because she has no brain issues to begin with. Seth was born with cCMV so that is his reason and therefore might be harder to treat. They increased his meds and started him on something new as well. Dr. Bernes said that if the new meds do not help then we will have to get him started on steroids. He also want an EEG again on Seth and see if there is anything that we are missing or to see if the brain scan is more abnormal than it was or if anything is calming down at all.  

For some reason when I talked with his neurologist and they gave Seth some new meds I was not thinking and I stopped giving him his Keppra which is what he was on before these spasms started. I did not realize that was suppose to give that to him as well as the new meds. I guess when you have a kid with seizures the meds can be tricky and it can be hard to find the right combination but once you do it will work. So anyways, on Sunday the 28th I woke up and fed Seth his bottle at 6:10am and he was almost done with it when he had a full blown seizure that scared the CRAP out of me. It was about 4 minutes 6 seconds long and I went into the bedroom and woke Michael up and said that I was heading to the ER because I did not want it to happen again and I just was not comfortable with the whole situation and how Seth was during and after the seizure. To make a looooooong story short...I was at the hospital all day, they tried to get an IV in Seth 3 times until finally the 4th time worked, he got 15 ml of Keppra (his normal dose is 1.5ml) and we were sent home by 2:45pm. It ended up being my fault because I stopped giving him his keppra and you are not suppose to do that. I guess you have to wean kids of their meds and this is one that you can not just STOP. It will make them have a seizure if you do that, and that is exactly what I did. 

I hate them and I have been having a really hard time with them. I hate knowing that this is something that he is going to struggle with, maybe his whole life and it makes me really sad. I want to be able to fix it for him and I CAN'T and as a mom...Seth's mom that is all that I want to do for my little boy. He does not deserve any of this it. I pray everyday that he could be healed from what this horrible virus did to him. It eats at me all the time that a cold virus can do such HORRIBLE thing and it makes me sick that such a cold virus did such HORRIBLE things to my little boy.

I have been having a hard time lately and I am not sure if it is because of many diagnosis at once, different tests that need to be ran on him, a lot of doctor appointments, the seizures and dealing with new things, or the fact that he is just getting older and I am noticing a lot more things. Actually, it is probably the combination of them all if I really think about it. Don't get me wrong here...I am not trying to get people to feel sorry for me in any way, shape, or form. I will keep doing what I can do for my little man and I will do it the best way I know how but it is hard! I have already been to over 24 doctor appointment since 2010 and it is hard to imagine how many more I am going to have to take him to this year alone. He already had Occupational Therapy and Developmental Specialist come out once a week and we are adding Physical Therapy (Praise the LORD) and a Feeding Specialist which will both want to see him once a week as well. That alone just gives me anxiety thinking about it. I just want to do the best thing for Seth and give him the best chance he can have. He is a miracle and he is here for a reason and I want to help him the best way that I know how. I feel like I fail him everyday. I sometimes feel like I failed him by getting a cold but I know that He has bigger and better plans and that He planned this out perfectly. It is just getting my heart and mind to both agree to that. So to say that this is hard for me is an understatement but I really am not sure what a good word is :)

I hate SEIZURES!!!

I was just looking at my blog and I have not given an update on Seth and his seizures in a while.

Lets start by saying..."I HATE them."

Seth had his reflux surgery Feb 11th and that following Sunday he started to act like he was getting startled easily. It went on for about a week and then Monday (Feb 22nd) Lisa was feeding him and he did it at least 7-9 times in a minute period and I told her that "that" is what was concerning me and she actually said that she would call the neurologist so when I got home that is what I did. I got home and called and left a message and they called right back and said that they were going to have his actual doctor call me and talk to me. So he called me back around 4:30pm and told me he was having seizures called "infantile spasms". He said they are one of the hardest types of seizures in kids to treat who have a reason to have them and for Seth he does have a reason. If Sydney just came in to the doctor with them the mild medicine would work very well for her but that is because she has no brain issues to begin with. Seth was born with cCMV so that is his reason and therefore might be harder to treat. They increased his meds and started him on something new as well. Dr. Bernes said that if the new meds do not help then we will have to get him started on steroids. He also want an EEG again on Seth and see if there is anything that we are missing or to see if the brain scan is more abnormal than it was or if anything is calming down at all.

For some reason when I talked with his neurologist and they gave Seth some new meds I was not thinking and I stopped giving him his Keppra which is what he was on before these spasms started. I did not realize that was suppose to give that to him as well as the new meds. I guess when you have a kid with seizures the meds can be tricky and it can be hard to find the right combination but once you do it will work. So anyways, on Sunday the 28th I woke up and fed Seth his bottle at 6:10am and he was almost done with it when he had a full blown seizure that scared the CRAP out of me. It was about 4 minutes 6 seconds long and I went into the bedroom and woke Michael up and said that I was heading to the ER because I did not want it to happen again and I just was not comfortable with the whole situation and how Seth was during and after the seizure. To make a looooooong story short...I was at the hospital all day, they tried to get an IV in Seth 3 times until finally the 4th time worked, he got 15 ml of Keppra (his normal dose is 1.5ml) and we were sent home by 2:45pm. It ended up being my fault because I stopped giving him his keppra and you are not suppose to do that. I guess you have to wean kids of their meds and this is one that you can not just STOP. It will make them have a seizure if you do that, and that is exactly what I did.

I hate them and I have been having a really hard time with them. I hate knowing that this is something that he is going to struggle with, maybe his whole life and it makes me really sad. I want to be able to fix it for him and I CAN'T and as a mom...Seth's mom that is all that I want to do for my little boy. He does not deserve any of this it. I pray everyday that he could be healed from what this horrible virus did to him. It eats at me all the time that a cold virus can do such HORRIBLE thing and it makes me sick that such a cold virus did such HORRIBLE things to my little boy.

Feeling Yucky.

I hate when you try so hard to keep your kids from getting sick but they do anyways, that drives me insane but when you have a kid that is always in and out of doctor offices it is rather hard. Since January Seth has gotten RSV twice, a double ear infection twice and now he is getting another cold. I hope that the cold does not rest in his lungs and cause us more issues.

He is getting his two bottom teeth and I can not wait for them to break through because he can be in so much pain from them. Some nights he just shoves his fist so hard into his mouth hoping that it will help him but I normally have to torture the poor little muffin with either teething tablets or pain reliever.

I have been trying to feed Seth solids since we was about 5 months old. At 5 months I just thought that he was not ready for food. He would just spit it out like he does with him medicine, so I just stopped thinking that he was not ready and tried again at 6 months. I was trying every other day since then praying that he would get the hang of it but if you ever saw him try and eat you would know that he just really, and I mean really does NOT like it. Now I try as often as I can because he really needs to start eating...last night he ate 12 spoons full of sweet potatoes and rice cereal! I was so excited because normally I cant even get him to eat more than 5. He was such a good boy and only gagged a few times and actually tried to swallow it rather than find a way to spit it out.

Right now Seth has a developmental specialist that comes to the house on Thursdays and and Occupational Therapist that comes on Tuesdays. We finally got provided with a Physical Therapist which I have been praying for, for a long time. The state has been a little slow at getting one and Donny, Seth's OT was getting beyond frustrated as was I, so he called his company and got one for me :) I am not sure what days she will be coming out but I am praying that it can be either a Tuesday or a Thursday so that all my days are not crazy.

So if you think of it prayers for Seth are huge and that he stays healthy.

HAIRCUT!

I have been wanting to give Seth a haircut for a while now and it was getting long on the sides so that is exactly what I ended up doing, Well I guess its what Lisa ended up doing :) I wanted to give him a mohawk but did not have the clippers to do so but aunt Lisa did. I went over Friday to drop something off and ended up staying for a little while so we could cut his hair. He is so freakin cute its not even funny, I smile every time I see him. I have always had people mention to me how much they love his hair color, or that he has such pretty hair, BUT I have never had so many people tell me how much they love his hair or how cute it is. I may be biased but He is such a muffin!

The First day out and STYLED!

In his bath before I washed his hair.

I can not help but smile at the little muffin.

Oh he is so cute!

I love that he has drool hanging from his chin.

NO more pictures mom!

I love him!

Haircut!

I have been wanting to give Seth a haircut for a while now and it was getting long on the sides so that is exactly what I ended up doing, Well I guess its what Lisa ended up doing :) I wanted to give him a mohawk but did not have the clippers to do so but aunt Lisa did. I went over Friday to drop something off and ended up staying for a little while so we could cut his hair. He is so freakin cute its not even funny, I smile every time I see him. I have always had people mention to me how much they love his hair color, or that he has such pretty hair, BUT I have never had so many people tell me how much they love his hair or how cute it is. I may be biased but He is such a muffin!

The First day out and STYLED!

In his bath before I washed his hair.

I can not help but smile at the little muffin.

Oh he is so cute!

I love that he has drool hanging from his chin.

NO more pictures mom!

I love him!