UPDATES!!

Okay so a lot has been going on since my last post. Seth on October 4th had his surgery...if you want to read about it click here.

-Seth did great during his surgery the recovery was the hard part! He was in so much pain and the medicine for me was the worst part. He hates taking medicine and he needed to eat to be able to take his tylenol with codeine and of course he is stubborn so he went over 24 hours without eating. He had so many bladder spasms that made his whole body convulse that also at the same time caused so much pain. It is so hard to watch your little baby in pain especially when there is NOTHING you can do for them. The first few nights home were horrible and no sleep was bad but again we got through it and by Monday he started acting like his normal self.

-Saturday the 9th Lisa threw a baby shower for my and our sweet new baby girl and even though there where not a lot of people there it was so great and fun! I loved everything about it...especially that everything was green and black :) Thank you so much Lisa for throwing such a fun and beautiful shower.

-Wednesday morning and when I say morning I mean 1am Sydney comes into our room throwing up. She woke up and threw up in her bed and then down the hallway trying to come get us. I spent the next few hours with her out in the living room having her vomit in a bucket. She has not had the stomach flu since she was 1 so she had no idea what was going on and really did not enjoy the "throwing up" part...not that anyone does but she just did not understand what was going on and why she kept doing it. She finally went back to sleep around 4 am and slept till about 6 am when the vomiting started again. Seth then woke up at about 7 am and my plan was to keep the two kiddos apart until I fed Seth his bottle and within 10 minutes he threw it all up so I had both kids with the flu which in the end I would rather that then different days. Sydney was sick till 11:30 and then she was totally fine and over it. She complained a few times that her tummy hurt but never threw up again. Seth kept going until Thursday morning. The rest of Thursday he was not quite himself just tired and not really wanting to eat but not throwing up until 7:30pm after his last feeding before bed.

-Friday...can I just say I hated this day!!! Around 2:50am I heard Seth crying in his room so I woke up and got him a bottle thinking he would be hungry because he did not eat much the two days before because he had the flu. So I went and made him a bottle and got him out of bed and went back into our room. I sat down on the bed and went to put the bottle in him mouth when he started having a seizure. It was so horrible holding him while he was having one and yet there is nothing that you can do for him. Mike was awake and all we could do was just watch him. I can not describe those two minutes to you except that it was not his normal spasms and the cry that came out of his mouth was just so sad and sounded like he couldn't catch his breath. So after he came out of it I laid him down on the bed and he started having tons of spasms in a row so I threw on some clothes and heading to Cardons. I got there about 3:45 am and not many people where there so after we got checked in we got into a room right away. They came in a started an IV and took some blood and then started all of the questions. It is always a good thing when you get a nurse that knows what CMV is because that means I have to explain less. Around 5:30 am we got his blood back and his depakote level was at a 7. The low level should be 50 so he was really low. This most likely was because of the stomach flu and not being able to keep anything down. We waiting for about 2 more hours until the pharmacy got him his meds and then it took an hour for it to get released through his IV. Finally around 9 am we were down and we were able to go home. He has only had one seizure since then and it was maybe 40 seconds but has had a TON of spasms.

-Monday we got a call from his neurologist and we told him everything was going on and he thinks that yes part of the reason he could have had a big seizure like that was because of the depakote levels but another reason could be that he is starting to have different kinds of seizures. (about 70% of kids that have a reason for infantile spasms will out grow it around 2-4 years old but then can develop another type of seizure disorder) Dr. Bernes decided to have us give him the depakote 3 times a day instead of twice and give it about a week to see if it helps...so far he is still having a lot of spasms so I think on Monday we will be making another phone call to him and will have to go in for an appointment. We did get some emergency medicine so that if he has another seizure lasting longer than 2 minutes or spasms that we can not control we give him this pill that will dissolve on his tongue. I am glad that we got this medicine because that means I do not have to go into the hospital every time unless it is a new type of seizure that he is having. Can I just say that out of everything that he has I think the seizures are the scariest thing for me. I am not sure I will ever get use to it either. It is so hard to watch and not be able to do a single thing for my little boy.

-This week we also went and saw a pediatric orthopedic surgeon who took a look at his legs and hip and then sent out down the street to another office to get some x-rays and then head back to the office to have the doctor look at the films. I think for the first time in a LONG time we actually got good results. Seth has nothing wrong with his hips at all and for the doctor his legs are tight but it is a good thing that we can stretch them. So we got a script for low profile braces on his feet so that we can actually get him some support when he starts bearing some weight on his feet. He is really tight in his hamstrings which is making it really hard for him to actually sit on his butt. So he actually does not sit up straight because the hamstrings are also connected to his back so it makes him curve his back and therefore leans forward way too far. But I was so glad to hear that he has nothing wrong with his hips. The doctor also said that he sees no physical reason why Seth wont walk. He might need some help to do it but physically he should be able to walk. The problem will be mentally or neurological.

-Thursday Seth decided to sleep in until 8am and therefore did not have a nap before his appointments started. He had his developmental specialist come for a make-up and his scheduled O.T. appointment at 11:00am and then at 1:30pm we had his feeding specialist come. He did two hours of feeding without a nap the whole day and he did so good. He played in cheerios and apple juice and actually got it in his mouth and did not gag. He actually was licking it off his hands so that is a huge thing for him. We are not sure if he will always be the type that has to feed himself or if he will start letting us put a spoon in his mouth and chow down. Either way as long as he eats food I really do not care how he does it. That evening my mom watched the kids while Mike, my dad, and I went and looked at a few houses. My mom kept the kids and then after we went to dinner. It was fun to just go to dinner with Mike and my dad and I really like mexican food so Rubios worked for me even though I really wanted Olive Garden.

-Thursday night we had another seizure around 3am and I HATE them. After this one I have been looking online for seizure monitors that will alarm us if he is having one and or if he falls out of bed while having one. I have found a few but they are quite pricey so I am going to ask his neurologist for a script for one and see what insurance will cover first. But out of everything that he is struggling with or will struggle with I think seizures scare me the most. I know that I need to have complete faith in God and that no matter what happens to my little boy that it was all in God's plan and it is good...but when you talk about children and especially your child it is really hard to keep that perspective. SUDEP scares me and it is something that I have been worrying about since Seth had a different kind of seizure. The risks of SUDEP is higher in kids that have symptomatic epilepsy. It you think about it just pray that I do not worry too much about this and that I keep my faith and trust in God and that everything will work out for the good.

-I had a doctors appointment yesterday (33 weeks 3 days) and at the appointment the baby was head down which is a good thing but doctor says that I am not measuring big so the baby has a chance to move around but hopefully will stay put! Everything else looks good and my weight gain was good as well so I was feeling pretty good after that appointment. I also spent the afternoon at my moms house and Sydney and I went out for lunch while Seth stayed with my mom. We went to Red Robin and she LOVES that place...I think just because she can get a balloon. 

-Today we have just been hanging around the house and around 3 my dads works is having a family picnic so we will head to his work around 2pm. It should be a lot of fun especially for Sydney. They are going to have big slides, bounce houses, cake walks, dunk tanks, food, cotton candy, snow cones, petting zoo and so much more. I am not sure how Seth will do but we will try it anyways :)

Surgery!!!

So Monday morning we headed out at 6:30am to get to Phoenix Children's Hospital for Seth's surgery. We waited for about 20 minutes until they called us back to prep. We got Seth checked out and put him in his little hospital gown which by the way purple is not quite boyish but he still looked cute in it. We had to wait in the room for about an hour and all Seth wanted to do was eat because the last time he ate was 7:30pm on Sunday night and I tried to wake him up at 1am to get some food in him but he just really didn't want it then so needless to say at 8:45am he really wanted food. I finally got him to take a little nap and I think about 9:15am they told us he was ready to go. We walked him to the surgery room where the nurse took him from us. He was so happy at that moment that I wasn't too worried. It was the waiting that was hard! Mike and I went down and got some breakfast and then just hung out in the waiting room. The Doctor came and got us at 1:15 and told us he was out and in recovery and that everything went great. They did NOT have to put the stint in which is great because that means no other surgery. At 1:40pm we got to go back and see him and he was having some breathing issues which kept us down in recovery a little bit longer. He looked so pale and sad but once he was held he was okay. I think we got to our room around 3pm.

Okay so I understand the PCH is the best hospital and I can not wait until the new building is done because those rooms are ridiculous! First off the kids have to share rooms and once you pull the curtain the room is the size of a closet. If you have a crib in the room it is huge which leaves you with like 3 inches to walk around and you cant see the TV because the crib is in the way. So once Seth finally started to come back into the world he was in a lot of pain especially every time he would pee. So they got him morphine every 2 hours and he could not have the tylenol with codeine until he ate something. They also had him on anti spasm meds because his bladder will spasms because of the surgery and it is really painful. At about 5:00pm Seth got a room mate who was a boy at about 13 years old. Come on...lets put a teenager with a baby who is in pain and crying. I felt so bad for the boy because after 6:30pm Seth was just uncomfortable and in pain and would not eat so this boy had to listen to Seth cry while trying to watch Sponge Bob.

That night (Monday) was rough. I think I maybe got 2-3 hours of sleep. Seth wanted to be held but at the same time didn't want anyone to touch him. At 11:45pm I had to give him his spasm medicine, typically I give him his night time medicine while he is taking a bath because he is so happy in the tub and he wont cry when I put it in his mouth. If I don't do it in the bathtub he likes to hold it in his mouth and when you think he has swallowed it he turns and spits it out or chokes on it cause it has been in his mouth forever. Well Monday night was different he just screamed when you tried to put anything in his mouth and then he would choke on it because it would go down the wrong way or whatever. It was a PAIN and I felt so bad for him I just didn't want to give it to him but knew that he would feel better if I did. Trying to explain to a 15 month old who is in pain that if they take the horrible medicine they will actually feel better it hard to do but even harder to do with Seth. Also at this point Seth still would not eat so he was just getting morphine and couldn't have Tylenol w/codeine and I was going insane because there was nothing that I could do for the poor guy. If anyone knows Seth they know that he is one of the most stubborn kids (Honestly both my kids are horribly stubborn.) and if he does not want to eat he is not going to eat, the night nurse just did not get this and kept telling me that I needed to get him to eat. I just ignored her every time she came in and said I tried but he didn't want it. She kept bringing in fresh bottles every 3 hours and even if I was going to try I would need warm water because Seth WILL not drink a cold bottle so then if I did want to try and feed him I would have to ask for some warm water to get the bottle warm. It was literally a pain. By 5:45am I gave up on trying to get some sleep and that was a good idea because Seth was up at 6 anyways. Around 8:00am the doctor came and made his rounds. Seth at this point still did not eat a thing and the doctor said it was because he was on fluids so he was going to take him off it and in a few hours he should want to eat a few ounces. I also thought that Seth was having a lot of seizures and they were getting worse than they ever have been because his whole body was shaking and not like his typically startle. I was wrong they were not seizures they were actually his bladder having spasms. That made me feel a little bit better but it is still horrible to watch him have the spasms then try and pee and all that comes out is blood. The Doctor also took out his catheder which he said should help with the spasms and he said that if Seth starts eating we could go home. About 4 hours later Seth decided that it was time to eat and he ate about 4 ounces and he did that one other time on Tuesday!

Since the hospital Seth has still not been back to normal. Tuesday-Wednesday-Thursday nights were the hardest. Tuesday I think he was up at 1:30am until about 6 just crying and not comfortable. And he did the same thing Wednesday and Thursday nights. Friday and Saturday night he went to bed at his normal time but woke up at about 2 and didn't want to eat but giving him his meds made him more unhappy so eventually he fell back asleep but he is just not comfortable at night.

I want to thank Lisa and my mom for watching Sydney for us while we went through all of this with Seth. Also Rachel, thanks so much for coming all the way out to PCH and giving us such a wonderful bag of goodies :) It was so needed and it is such a blessing to have people in your life that know what you are going through and care so much to come all that way just to drop off a bag of stuff for my little muffin and for us as well. So thanks again for everyone who helped out so that I could stay with Seth at the hospital!

Sleeping before his surgery...He did so good for not having anything to eat since 7pm the night before.

Hanging out before the surgery in his purple gown.

Getting some snuggle time with Daddy

After his surgery drugged up on morphine

Tuesday morning still not eating anything but acting a little bit better for not sleeping more than 3 hours at a time.

Here is the stud muffin a few days after we got home from the hospital.

He is such a stud muffin and an amazing little boy. He is so strong for only being 16 months old and he has been through so much. He makes my heart melt and I love him so very much!!!

Forgetful.

So lately I have been feeling very overwhelmed especially with all of Seth's therapies. He now has 4 sessions a week (2 OT-1 PT- 1 Feeding ) and they want to add one more of PT which I think he really needs but can I really add in another one? I cant seem to keep everything straight and it is driving me insane. I didn't even know that yesterday was picture day for Sydney and even though she looked cute for school it was not something that I would have sent her in for pictures. So after I took Sydney to school I headed up to Barns and Noble to pick up the book "Out of Sync child" that many of his therapists have told me to read and then I saw the best thing EVER, well for me at least. It is a Moleskin planner, but instead on one there are 12 different colored, pocket sized planners-one for each month. I fell in love instantly and had to buy them. The only disappointing thing was that it doesn't start till 2011. So I am praying that this helps me out just a little bit. I can keep it in my purse or pull it out and it is not huge. I have tried using my phone and sometimes I will put things in it and other times I use a planner so no wonder I get confused...ITS GOTTA STOP :)

So as of today I am 30 weeks and 3 days and I am so ready to have this baby girl and yet I still have about 2 months left. In about a month we will start the house hunting process and I am praying that it works out great and that we find the house that will fit us all perfectly. I would love a 5 bedroom but that is hard to find in a one story and I would rather have a one story because we really have no idea how Seth will develop and if he will have a hard time walking and stuff like that. I am in LOVE with the Power Ranch area but it is really hard to find a house in our price range and big enough but I love the whole development, but I might have to get my mind out of that :)

So here is another thing that I have to get on top of...before Sydney was born I got a journal and Mike and I started writing in it to her I wanted to do this as much as possible and when she is 18 give them all to her. Well I went to get Seth's and noticed that I have not written in it since he was born. I mean I have his delivery but everything after NOTHING. So I am going to have to go to start printing off things from this blog and his own blog and glue them in there :) And I need to start on the little muffins as well.

Anyways thats all I got for today and Sydney is being her high energy self and I have got to get her something to drink before she melts down :)