Good days

We have had several good days now. I think we are at 5 or 6 really good days! Thank you Jesus!

By good I mean little to no seizures, minimal spasms (but still there) she is alert, responsive, visually tracking us and toys and babbling like crazy!

She has been such a joy the last week! I don't think she has really cried much either. She is sleeping at least 5-6 hours at night. Most nights she does not go to sleep until 12:30 or 1am but I will take it!

Previous to our really good week she had probably some of her worst weeks, hence the no blogging.

She was seizing like crazy no matter how much meds we gave her. You could tell she was just so out of it and "off". Long story short-low grade temp, strong smelling urine, extremely fussy and increased seizures= massive urinary tract infection (e coli to be specific) Things got worse once we started the antibiotics and I was so nervous because she has never needed them before so I did not know how she would react. Just a couple days in and she was doing SO much better.

We noticed the weather forecast was calling for mid to upper 70's last Friday and Joe and I really wanted to get some family/18 months/Christmas picture taken so we asked our good friend Rebecca to take them for us. Also Joe's dad, step-mom (Brenda) and his grandma Mae were coming in that week too so that was a bonus. They were originally coming next week to celebrate Thanksgiving but Brenda and Lonnie are going to be grandparents again and they were cutting it close to the due date. Can't wait to meet Ava!

We got some great pictures! Rebecca is so talented and I am so thankful to have these pictures to look back on. I don't think she understood how grateful we are! To capture such great pictures on a beautiful day and one that Emily was feeling great, we will always have these to look at on bad days to remind us that it is not always going to be bad. Thanks again aunt Bec!! You can follow her here on facebook.

So I will leave you with a few of the pics! Have a blessed week!



One of my favorites!



This color was amazing!



She amazes me!



off

I don't really want to blog right now but I am making myself.

Things have not been good lately.

Emily's seizures have picked up in spite of everything we are doing.

She has what we think are seizure-free days once or twice every week to two weeks but I am not sure that they are really seizure free.

The past few days have gotten really bad.  She is having so many seizures and we are giving her a lot of meds to TRY and slow them down but they are not working well anymore.

She is weaker than she has ever been and has not been herself in a few days.

She is twitchy and very seizurey looking.

We took her to the ped yesterday just to check labs and urine to make sure it's not something simple like an infection or off labs we are dealing with but they were normal.

I really don't want to go the hospital (especially during cold and flu season) we have oxygen and and a monitor at home and we have been using it lately. She has only needed oxygen once but we are thankful we had it.

We are taking her in to see the neuro the beginning of next week and hopefully we can figure something out.

I want my happy smiling baby back.

still sick

Emily is beginning to feel a little better. She still has an on and off again fever. It's pretty low grade nothing over 100.

Joe's dad ( Lonnie), step-mom ( Brenda), and grandma ( Mae) all came down on Wednesday for Emily's party this weekend. They live over 4 hours away so we don't get to see them nearly as much as we would like. Joe's brother (George) also came over today too. We have a full house but I love it!!

It has been so nice to have them here. We enjoy their company and they are so helpful too! Lonnie mowed, Mae did laundry and cleaned and Brenda and I got to finish shopping for Emily's party. We had a pretty good day yesterday.

So as long as Emily is fever free for 24 hours than the party is still on. I will let everyone know how she is doing over the next couple days.

1st time for everything

Well Emily had her very first virus.

It started on Tuesday night with a low temp of 99.5. I went ahead and gave her Tylenol just in case it started to go up through the night and we went to bed. I should have known she was getting sick because I slept from 11:30pm-3am and that never happens!

When we woke up I checked her temp and it had gone up a bit so I gave her some more Tylenol. Around 8am I checked her again and it was 101. I made her a dr. appt and they checked her urine and blood and every thing came back perfect.

He chalked it up to a virus and said to call if she still has a temp in the morning.

When we got home I checked her again and it had jumped to 103.7 so into a cool bath she went. That and Motrin in addition to her Tylenol have finally broke the fever. Last check she was 97.

The fever explains her strange behavior. Since her fever broke she it not doing hardly any of the weird moving or shaking.

She has to be fever free for 24 hours to not be contagious so I am praying that it was just a 24 hour bug and we can still have her party on Sunday.

I guess it's a good thing she made it until after she was one before she had a fever or a cold.