Back on the Rollercoaster

Unfortunately although we had a great Halloween we noticed Baybeblue starting to make some new eye fluttering. It got a little more frequent and then a couple times I thought I saw a couple jerks. Then about a week ago Baybe was sleeping on the floor and woke up wrenching her body and screaming at the top of her lungs. I swooped her up and calmed her down and chalked it up to a bad dream or maybe she was laying on her arm or neck wrong and it hurt when she woke up idk. But then it happened... Laying next to me in my bed she thrust her whole body suddenly and started screaming like an invisible person just walked up and punched her. She cried for about 30-45 seconds until I got her to look at me and she calmed again but then passed out hard. There was no confusion about what had happened now because I have seen this before many times, This was a crying seizure. NOOOO not again these were the worst seizures by far not in the sense that she cant breath or that they last too long because there have been many worse in that way, but this kind hits me differently, right in the heart. These are the seizures that I went through for 2 years trying to convince some doctor somewhere that these were seizures and watching her look like she was suffering in so much pain. THere was never anything I could do but hold her and sometimes they got so bad she would cry for hours several times a day. These ones that are happening now are really short but like I said slowly progressed from an eye flutter so Im nervous that they will still get worse. I planned on calling the doctor after she had 7 more the next day but decided to collect some info first so I took her temp and it said 97.0 which is a little low for her and we have had hypothermia before so I got another thermomater and checked again (rectally always) and again 97.0. I proceeded to check 5 different thermomaters and got all the same result. I then did a catheter on her and collected urine to test for any blood or high results that might indicate she was beginning an infection. I used the test strips I always use and looked for the normal things nitrates and blood, ketones, glucose etc.. which all were totally normal. Except there was on result that made no sence. I had never been asked to watch for this nor had I ever heard of it. The strip said she had and unusual level of urobilinogen. I used this info and called the Doc and of course they told me to bring her in for blood tests. Although I hate when she has to be poked I knew that we had to confirm the high level and figure out why it ws happening. By the time I got to the hospital and we started her examination I started to notice a rash on her arms and searched all over and it was on her belly and chest, face and behind her ear. After being at the hospital all day, the test confirmed that her urobilinogen level was elevated but normally this meant there was a problem with the liver and when they did a liver function test it looked fine so they were completely confused. They told me since she didnt have a fever or any other really severe symptoms they told me to observe her closely for the next week to watch for any new symptoms or fever and if so then bring her back in, otherwise we were to come back in a week for new tests. Meanwhile they want me to set up appt with neurology even though there is nothing they can do, but it is time for her to get a new EEG and Mri, it has been a while. Then I have to set up an aprt with uerology to do new tests to make sure her kidney refluxe is still under control. Then it will be endocrynology to talk about whether we can try and come off the saline diet and try some real formula and see what happens since her calcium has been staying at a nice spot for a while. THEN its time for a new swallow study!! This means they will test her to see if she can swallow bites of food yet. I have high hopes since I havent heard her asperate since she has been off the meds. Other than that she is actually really happy. SHe is so active moving around that she has thrown herself off my bed and restricted to floor play to avoid injuries. Im working on getting her a soft helmit because she keeps smashing her head into everything. I have lots of new videos on youtube so check those out to see her talking and dancing and singing.

Lala and Tay are doing great too. EVeryones in school mode so were focusing on grades and homework and trying to have a little fun in between.

Amazing things are happening for Kevin at work and hes so worried. I know he doesnt need to be because hes amazing at what he does. Iv never met anyone and actually watched there dreams come true, its a pretty cool experience. Ill try not to take too long in between blogs but I got my own stuff going on in my head right now, issues I shouldnt have to be dealing with. I will rise above like always, I hope everyone has a wonderful day and dont let ANYONE get you down :))))