-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 :)
Melissa...you have SO much going on. Bless your heart. Thinking of you.
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