"She's a blessing to him too..."

It's been a very long while since I posted last time. Not too much has happened, I just have a few little things to post about before I forget!

Currently Max, Abi, Liv, and I are in New Jersey visiting family and friends. We got here a week ago as of today (June 25th 2014). On Sunday (June 22nd) we left for Huntington West Virginia to welcome my cousin Madison home at the airport from her LDS mission in California. The kids traveled very well on the way there. Max slept most of the way and Abi just hung out and cooed most of the drive. We split the drive up by going to my sister Margo's in Morgantown WV before heading to Huntington. It's about 5 hours to my sister's house from my parent's house in NJ and then another 3 hours from my sister's house in Morgantown to Huntington. So we would drive 5 hours to Margo's, stay the night, then head out to Huntington..then visa versa on the way back.

I don't know if it was the traveling or just where she is right now in her brain, but Abi's schedule is very backwards. She stayed up until 3am that first night at Margos. But she wasn't up screaming, instead she was up happy and playing. Then she slept until 2 or 3pm the next day. It's been like that since Sunday. Monday night she was up until about 2 or 3am again, and then slept during the day. Then last night she was up playing and happy until 4am! Needless to say, she is still sleeping right now at noon. When she's awake she's very happy and calm and pretty aware/alert too..she's just awake at the wrong time of day! I'm sure eventually it will get back on schedule where it should be. I don't love it when she's on this schedule (I've seen it before) but it has worked itself out in the past so I'm not super worried about it. She also, as of yesterday, started feeling a little warm again like she's going to start having those fevers again - so that may have something to do with the upset sleep schedule.

She did have one seizure on Monday night. It's the only one we've seen since before we left Utah to come to NJ. What we've been seeing now with her seizures is about that. She will go a week without any seizures, then she will have a day or two of multiple seizures in the day. This time, however, it was just one seizure. I like that. But, like I said, she is a little warm so we'll see where that takes us.

Before we all left for NJ Abi and I were able to squeeze in some last doctor check-ups and therapy sessions. We will miss all of our care down in Southern Utah so very much. Oh, for those of you who haven't heard yet our family is moving back up north because Jaren and I both got jobs teaching in the Saratoga Springs area. Jaren will be teaching 9th grade CTE at Vista Heights Middle School in Saratoga Springs, and I will be teaching 1st-9th grade PE and 7th grade Health at North Star Academy in Bluffdale UT (which is right on the border of Saratoga Springs). We are going to miss our little Mayberry of Orderville quite a bit but are also very excited for the new start. Abi and I are going to miss her therapists and doctors and especially her pharmacist from our life down there, but are very excited for all the therapy opportunities that will be available up in Utah county of which will be much closer! I think this move will be so good on so many levels, especially with the level and accessibility of care for Abi, although we are sad to leave our Orderville friends and family. Back to her last visit with Dr. Larsen, her pediatrician, we were sitting in the office and he was giving me suggestions/referrals for pediatricians up north. He is such a very sweet, sincere, caring doctor and was trying to 'prepare' me, of sorts, for when Max grows up it will highlight how behind Abigail actually is. I assured him I am very aware as I see cousins, nephews, friends, etc whose kids are her age, or close to, and I can see the delay..He then said, and I'm not sure exactly where in the conversation it came up, or how it fit in, but I, again, was talking about how I'm sure Max will be good to have for when he gets older and blah blah blah. But Dr. Larsen said "She's a blessing for him too"...Meaning it's not just Abi whose lucky to have Max, but Max is also lucky to have Abi. It goes both ways. I don't think he meant that to be as 'profound' as it ended up being. But it was really a neat thing to hear from an unbiased party.

Also before we left for NJ Abi, Max, My dad, and I were able to go up to the "Get Seizure Smart" conference held by the Epilepsy Association of Utah (EAU). It was a phenomenal conference with a lot of information presented. The main reason I went was to learn more about the Cannabis oil and how it will work in Utah, how I can get it, and what I need to do to get it all in to place. I learned a whole lot of information about it at this conference including that they are going to try to get 3,000 patients off of the waitlist with their next harvest in October. The reason it takes so long is that the plants need to be cloned - not just grown. The Realm of Caring ,which is the group that has charlotte's web (the type of oil we would need), just recently got a new lab that will allow them to clone a lot more at a time. The plants are able to harvest in March and October of each year..In order to qualify for the oil, based on Utah laws, the child must have 'intractable epilepsy' meaning they have tried and resisted at least 2 treatments (Abi is now currently on her 5th or 6th 'cocktail' of treatment - which is minimal for many children with resistant epilepsy like Abigail has. I know families who have tried 18+ medications and still have seen no results). We have to get a letter from a certified neurologist stating that this child has tried 2 or more treatments with resistance and could benefit from trying hemp oils. Right now I've got a  neurologist that is anti cannabis oil, but has told me he would write the letter with caution. I want to switch neurologists for a few reasons, but the main one is that I feel as if he has kind of given up on Abi. He doesn't want to try the hemp oils but he doesn't think trying anything else will do much more for her condition..which is true - with each treatment attempt and resistance the likelihood of something else working gets slimmer, but not impossible..so I need to go to someone who won't give up.
Something else I learned at the conference is that there are neuro-chiropractors! There are 2 in the state of Utah and one of them is in Lehi - which is the next town over from where we will be living in Saratoga Springs! It's like physical therapy and chiropractor mixed. I've wanted to get Abi into chiropractic care for a while..I actually tried once and the only reason I stopped was because it was too far away and scheduling was too much..but I've wanted to get back into it for a while, now we've got the perfect option right down the road.

Lastly, because of the conference I found out that Abigail is number 1,190 on the out of state wait list for the Realm of Caring's Charlotte's Web. But like I mentioned, they are planning and hoping to get 3,000 kids off of the wait list this October! So our chances of getting the oil in a few months has just gotten a whole lot higher! Just gotta get the ducks in a row with the letter from our neurologist and then going through the process of getting our red card from the Utah Health Department. I will press that really hard when I get back to Utah at the end of July. I would like to get it all in place by the end of August - but September at the latest!


That's all I have right now. The two main things I wanted to jot down were that Abi and Max are here for each other not just Max for Abi and also that she is number 1,190 on the wait list but with the hefty goal of 3,000 to obtain oil that means we are relatively high up on the list and we have a high chance of being able to obtain it this October!

Oh, and I can see 8+ little white teeth wanting to pop through Abi's little gums. It's going to be so interesting to see Abi with a whole mouth full of teeth! She's getting so big. Love that little girl!

This is AbiNormal