Our family photos by the Amazing Jennie Lynn!!!

Our Little Family!!!!

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Surgery Day

Well this day came so fast again! This time Bailey had the SEEG surgery on her left side. We checked into the Surgery Center at 5:30am and by 8:00am the doctors came and took her back. She was so brave and really just slept the whole time we were waiting. She had a long night last night, we stayed up until 11:00pm waiting for daddy to get here!  Bailey is such a daddy's girl and was so happy to see him. She told all of her nurse's yesterday that, "daddy was on a plane, and be here soon." He did get here but it was not easy. Jared's flight out of Salt Lake City was cancelled so he had to take a small  propeller plane to Denver and then a big jet to Cleveland. We were sad it was taking so long to see daddy, but to calm ourselves down we ordered a big plate of Nachos with lots of dips (Dips are Bailey's favorite) watched the Vikings and Buckiners game. Bailey loves football and Hockey. She will sit down and  watch sports with us all day.
I should probably back up, Yesterday they let us check out from the hospital for one night to get a good nights rest and let Bailey run around before the big Surgery. It was such a nice break but made it a little harder to come back in this morning. I kinda just wanted to take my baby and run!!!  But now here we are done with the Surgery and she is awake and doing well. She does not have any pain, she is eating her Chicken Noodle Soup and wanting to run around. She even made friends with her nurse Jason. Only Jason could help her or talk to her, it was so funny!!! Its now 9:00pm and we are slowly winding down for bedtime. Hopefully tomorrow we can get up to the monitoring unit and capture some seizures so we can go home!!!!

Waiting for Dr. Gonzalez

They give you these pagers so you can stay updated during the Surgery

Also they took her down for a CT and X-Ray and they show no bleeding. YAY!!!!! So thankful for Dr. Gonzalez and team for taking such great care of our Little Bailey Bug!!! 

Resting after Surgery

Daddys Small Plane from Utah to Denver
(He said it was not a fun Flight)

Things are going good!! Should have posted yesterday (Wednesday )

Yay for TODAY!!!!!!! Bailey had an Ictal Spect scheduled for Tuesday and Wednesday.  The idea of this test is to inject isotope at the onset of a seizure. Cerebral blood flow is known to increase during seizures at the problem area. For Ictal spect to truly work the injection has to be given before the end of the seizure. It is a hardy tricky test to complete and we were not successful the first day. But luckily Miss Bailey Started having seizures again last night and with a little sleep deprivation  it only took about 30mins and we were done!! It was a huge relief to have that test done and out of the way!!!! The nerve racking part about this test is that we only had  two hours to get a seizure and we only had two days to get it. Now that they have a scan with  with the seizure they will compare it to the baseline scan we did  on Tuesday, and hopefully be able to help pin point the location. I was talking to my mom this morning after all this good news she brought up a good point, no matter what the outcome of all this is at least we know we have done all of the testing and can feel confident with what they tell us. I am not sure if another resection is in her future or not but I am so happy we came to Cleveland and that we came back to finish the last few tests. I hope hope hope we can do a safe second resection and be done with hospitals for awhile, but if that is not the case we at least don't have to keep guessing. Well this has been a good day so far and I hope the good stuff keeps coming!!!!!
                                                           

                       Waking up from the test and starting to feel better after her big lunch!!!

Always being watched!!!

Happy Daddy is almost here!!!

Hi ho, hi ho it's back to Cleveland we GO!!!

We made it safe and sound! So far things have went much smoother than last time. For starters they got her IV in on the first try!!! Last stay it took 8 times. I have been so anxious over that silly IV. You really shouldn't loose sleep over things like that! But they got it and Bailey was so brave!!! It's amazing how brave she really is. She knows Exactly where we are and what they are going to do. They will come in with something and before they can say anything she is telling them what is going to happen.
The schedule this week is not great! Tomorrow we head down for another MEG Scan and then Tuesday and Wednesday we try for a Spec scan. After that she has her MRI Thursday and the SEEG surgery on Friday. That surgery is 5-6 hours long and they will put 10-20 pins in her head. It's not as complicated as the grids like she had before so I am happy about that. After Friday we just watch and wait for seizures and to see where they are coming from. I am hopeful that they can find the location and that it is in a safe area so we can remove it and get our baby healthy!!! The past few weeks Bailey has had so many good days it is hard to think of her as "sick". She is learning and catching up like never before. The only down side to that is, it's hard to make these decisions when she is doing so well. I keep asking the doctors over and over "this new pill I think it worked, do you think they  will be gone for good?" of course they never know! That is the worst part of this disease, it's unpredictable and nobody can tell you really why or where. It's always a guess, they are educated guesses but still a guess. They always tell us her seizures go into a "honeymoon" phase and will be back. Chances of finding a medication that will work or be that "miracle" drug is less than 5%. So that is why we are here and going forward. Just a few more tests and we will have our answers. We are so close!!!! I am going to say a little prayer that she will have a few safe seizures each day so we can get our answers. I will keep you posted. Good night!!