Friday, April 30, 2010
Thursday, April 29, 2010
Wednesday, April 28, 2010
She slept like that for about 20 minutes too!
So today we have a neuro appt and I get to meet our first nurse! I can't wait to meet them. I am a little nervous though but I am sure it will be fine. They are coming with me to the doctor too to help me.
Praying that tonight is better than yesterday!!
Tuesday, April 27, 2010
Monday, April 26, 2010
Saturday, April 24, 2010
So hear is to hoping and praying for a good night of rest!
I almost forgot something! This is what we came home to!!
Friday, April 23, 2010
Thursday, April 22, 2010
Wednesday, April 21, 2010
Tuesday, April 20, 2010
Emily had occupational therpay yesterday too and she noticed a huge difference in her muscles. She does a lot of stretching with her and normally Emily fights it and hates it, this time she completly relaxed and Susan did not have to stretch as much as normal and Emily even tried to pull her legs up under herself!! Yay progress everyday!!!
Monday, April 19, 2010
Going for a walk in a wagon at the hospital
Mom! Get that stupid camera out of my face!!
Also I just wanted to say that I have a bunch of visitors and not so many comments. I just want to know who is reading this blog and how you found it. :) A few people told me they don't know how to comment. All you do is click on the word comment right below the post you want to comment on, type your message and follow the instructions below that. Pretty simple. Also my email address is on my profile and facebook page is on the side if you ever want to send a private message.
Friday, April 16, 2010
Thursday, April 15, 2010
Tuesday, April 13, 2010
Monday, April 12, 2010
I honestly did not think she would like it because it was 15 grams of sweet potatoes and 10 grams of canola oil. It looks really gross!
I think she may start teething soon. She still does not have one tooth but she is drooling soooo much. I had to take this picture it looks like a drool beard. haha!
Saturday, April 10, 2010
Thursday, April 8, 2010
So I think we are going to start Emily on baby food again! Before the horrible side effects of her many seizure meds Emily was a fantastic eater! I made all of her baby food and she was not picky at all. She loved her veggies most though.
She slowly quit eating and it was so sad for me to see her not be able to eat. The past few days though she had tried to bite whatever comes close to her mouth! It is kinda funny. So I think she is ready.
So I got several ketogenic recipes from our amazing, wonderful, and newly engaged ;) dietitian, Stacy. I am a little nervous about it though. Change in anything with a seizure kiddo can bring on seizures so I am praying for a smooth transition.
I just wish there was something I could do to get her to sleep at night. Currently it is 2:10AM and she is squealing and kicking with delight. Don't get me wrong I am to the moon happy that she is in a good mood, I would just love to sleep at night because though the night there is less care to be done for her. In the morning, when she sleeps the best, I have to do her meds, g-tube care, feedings, make phone call, appts, deal with crappy home health companies (haha! can you tell i don't like them?) and it does not make it very easy for me to get good sleep.
I got a video of her last night, I say I love you to her probably a million times a day and last night it sounded like she was trying to say it! Just ignore me repeating myself over and over.
I was trying so hard to get a picture of her smiling but she would only smile after the flash went off. Also I understand that there are a few students in Mrs. Rollins class that check-up on Emily and like to see her pictures so I put this one on her for you all today. Thanks for thinking about Emily I told her that you all think she is cute and she smiled!
Wednesday, April 7, 2010
Emily had a long doctor appt today too so I already knew this was gonna be a rough day.
Luckily I had already packed Emily's bag for the day so she was pretty much ready to go.
We got there and there was literally one other patient so Joe got back very quickly and seen by the dr.
Chest x-ray, eeg, and blood work were all normal. They said he must had just pulled a muscle, gave him some pain meds and sent us on our way.
We were home by 7:30am. I know totally impressive for an ER visit by our family! HA!
I finally got 2 hours of sleep then had to peel myself out of bed and head off to the Dr. We are still in the same pediatricians office just switched to a different doctor in the group. She is a little more experienced with Emily's care.
I had mixed feelings about this because I have had mixed reviews about this doctor, but ultimately its up to our instincts and how we feel about them. We also met with her nurse who I am sure we will see more often plus I have learned that you talk with the doctors nurses a ton on the phone so it is good to build a good relationship with them. Joe and I were both very impressed!
I had not realized how much I was trying to do my by self and how much more help there is out there for Emily. I told Joe when we left I just felt like I could breath. Heidi (nurse) is helping us out a ton with calling companies and dealing with crappy home health company. She is also calling our insurance to see if we can find a way around crappy home health company. She is also seeing if we can get a nurse a few hours a week or more to help out.
I know there are a lot of family and friends who want to help us so much but it is just so hard when you are not medically trained because Emily's seizures are nothing like a normal seizure and her seizures change all the time.
I pray that one day we will be able to have family and friends be able to watch Emily and help us in that aspect. For now there is still a ton of things that you can help with. Cleaning my house is probably the last thing that gets done,not that it is getting done. I just told Joe last night I have no clue when the last time i vacuumed was. We have been having a couple meals a week from church brought to us and that is a HUGE help! Things like mowing the grass so that on the weekend Joe and I can spend time together with Emily or go to the park is another huge help.
The weekend is the only time Joe and I really see each other because when he gets home from work I try to take a nap so that I can be up with Emily all night. So when the weekend comes we try to get house/yard work done or go the grocery and that leaves us with little to no time together.
So while right now watching Emily is not area that can be helped, I would love some people to spend time with us so that they can begin to learn more about taking care of her especially if there is an emergency with Joe or myself they can at least be familiar enough with her in that situation.
Oh I almost forgot! Emily is in the 10% for her weight and head circumference! She has been in the 2-3% until now. She is below the 2% in her height though. She weighs 16.5 lbs!!