Monday, September 21, 2015
let me first back track and update the last 2 months. lexi started vimpat after having an increase in seizures again and since putting her on that med her seizures have calmed down again which is good. we never did the eeg because i was having complications with my pregnancy so i canceled it and will hopefully reschedule it or get a eeg scheduled for around here closer to home. lexi started school in august and loves being in 1st grade. they are working with sign language and trying to figure out the best way to help her learn. at the end of august she went and seen neurogenetics and he decided to do an extensive epilepsy panel that will take 4 months to come back. lets hope something shows so we can finally figure out whats going on with her. other than that everything has been status quo with lexi. now with my end of my pregnancy i hit a really rough patch. during a routine visit in august my blood pressure was really high, so they started to really watch it. the next one was high again so they decided to do extensive blood work and had me do a 24 hr urine collection to see if i was going into preeclampsia. during that time i was getting nst 2 times a week which showed she was happy but i was having contractions which at first i wasnt feeling. then the 5th when i went to the hospital to have my nst my dr decided it was time to put me on blood pressure meds because it was only getting higher and not any lower. at that time he said he didnt think i would make it much longer due to the contractions i was having. that monday i went back in again for a nst and again was having contractions and he once again said he highly doubted i would make it much longer and wouldnt be suprised if i came back that night. instead of relaxing that day i went to the flea market with my mom and continued to have contractions but around bed time they died down and i was able to sleep. tuesday the 8th i went to work and started to have bad contractions around 4 but i figured they were braxton hicks and worked the rest of my shift. that night my mom was like call me if u need me i really believe ur in labor. so i went home and during the whole night i contracted hard and finally around 9am i texted my sister inlaw and asked her how i would know if i was in true labor. she decided to come take me to the hospital. we got to the hospital where they hooked me up and the monitor showed i was having very strong contractions. the nurse paged my dr who after talking with my other dr who delivered lexi decided it was best for me to have my c section that night. so they got me prepped and at 8:23pm on september 9th addalynn was born. she weighed 5lbs 9.6oz and was 18 1/2 inches long. when the dr went to cut me my uterus started to shred but they dont know why it did that. addie did have a hard time learning to breath and her blood sugars took a few days to finally even out. but now 12 days later we are getting into a routine and she is a huge blessing to my family. she is gaining weigh but very slowly so hopefully she starts to gain more soon
Saturday, July 18, 2015
1st let me update on our cinncinati trip. we went and saw the dr on the 2nd and it went well. we are weaning off one seizure medicine and will be starting a medicine she was previously on again but this time putting her on a higher dose. we are also scheduled to have a 72 hr eeg in august as long as baby corroperates and im aloud to travel that far away lol. besides that they didnt have any other suggestions and they will follow up with her neuro here if we have questions or concerns. lexi however hasnt been sleeping all that much. for about a month or so she would only get 4 hrs of sleep and wake up at 2 in the morning. last week we put her on clonidine and its been working ok except for the past couple nights. friday early morning she woke up screaming because the thunder woke her up at 4 in the morning. i get that and was fine with her coming into my room but she never went back to sleep. then this morning she decided to wake up at 2 and scream until i let her out of her bed. once i did she then decided to get into my bread and my ham and act like she was going to eat it but instead got crumbs all over my bed. school starts in less than a month and im ready for her to go back because when shes in school she does a lot better. i hear that alot with kids who have autism though. i try to keep everything structured but its hard to at home.
Sunday, June 21, 2015
summer is here and the last month has been super busy. we started the ketogenic diet but then 2 weeks ago decided it wasn't working out and came off it. lexi just wasn't eating enough to gain weight and wasn't drinking as much as what you have to on the diet. since being off she is so much happier and hopefully will be gaining the weight she lost back soon. coming off the diet also means we now are going to cinncinati to see their epilepsy clinic. it is ranked as a top 3 or 4 i think so im anxious to see what they say we can do differently or if surgery is an option for lexi. we go the 2nd so my anxiety has been high to say the least. lexi is out of school and will be going onto 1st grade next year. hard to believe this year is done and over with. the biggest news is lexi had her make a wish which was for a room makeover with sensory things added. they got her a swing for inside and it has been her favorite since. her room is a room every girl wants and im glad for her opportunity for this. as far as mommy goes baby addie is still growing. i am 25 weeks. i found out i have low iron and failed my 1 hr glucose test so i now have to take the 3 hr one this week.
Sunday, May 10, 2015
on monday we was admitted to start the diet. when we got to the hospital they had no orders for her to be admitted but once i showed them the email from the dietician they figured it out and it only took 15 minutes to get into a room. once there we got checked in and around 12 she had her first ketocal formula meal. we chose to do that since we didnt have the cream or other stuff she needed up from the kitchen just yet. that day was pretty easy as she just had her urine checked for ketones and ate when it was time. tuesday early morning was eventful she threw up at 2:30 and we discovered her blood surgar was 44 so we ended up giving her orange juice to get it up since she was symptomatic. then she threw up again at 330 and 630 and we decided to hold her feeds for a lil while. well she then decided to not eat and couldnt tolerate her formula either. wednesday the attending thought they was going to send us home but the dietician wanted us to stay til thursday because she was becoming acidic. thursday morning she once again threw up her feeds and i finally told the dr and the dietican that if we was going to go home we would need a feeding pump so we could feed her very slowly. they at first was against it but finally they approved the feeding pump and ordered it. i finally was able to give her fluids and formula very slowly but she held them down. friday she ate one meal by mouth and the rest was through her g tube and saturday was basically the same. today we got her to eat 2 snacks and one meal so we are getting there finally. its a learning experience but i have hope that it will work for her.
Wednesday, April 29, 2015
lexi has been doing ok. she had a repeat sleep study and it came back that shes having uncontrolled seizures when sleeping causing and aggravating her central sleep apnea so her neuro upped her lamictal and added onfi. since doing that she has not had that many seizures that iv seen when shes asleep. we also go on monday to start the ketogenic diet in hopes that it helps her epilepsy. we will be admitted til wednesday or thursday. im nervous about it but i know this is our last chance before i request that she gets sent to cinncinati or clevland to their epilepsy clinic.i know the diet is gonna be hard for her but im hopeful it will help her. this week marks a yr since she had the vns rejection and infection. i still wish there was a way she could have the vns to see if it actually helps her cuz she never got a real chance at it. bigger news is lexi is going to be a big sister come september. i am currently 18 weeks pregnant and have the gender ultrasound may 13th. we are both excited but i think she is more excited lol.
Wednesday, March 4, 2015
so we did the blood work and it came back weird but we now have to wait until her doctor comes back which is either next week or the week after. im not really worried about her labs im more than ready to set a date to start the ketogenic diet. but we have to wait until the dr comes back. other than that lexi has been doing good. finally sleeping through the night again which is nice. we had her birthday party over the weekend and it went down without any problems. she got new toys so thats always fun.
Saturday, February 21, 2015
wow a month has passed since iv updated oops. since iv updated lexi has turned 7. where has the time gone and how can she be 7 already. i had planned to take a cake in to the school but lil miss got a day off of school due to the extreme cold we have been dealing with. we are having a party next weekend with just some family. health wise she has been ok. 2 weeks ago she had both of her ear drums burst so she was dealing with pain from that. we seen her neurologist and we weaned phenobarbital in the mornings to help with her anger issues and it has helped. shes only on pheno in the evening now. we also saw developmental and she finally sent a script for pull ups which is much nicer because lexi is no longer wetting through her clothes which is nice. she also tried to get her into iq testing but the only place that can do it has a yr and a half wait so for now we wait for that. finally we went down to rileys childrens hospital and went to the ketogenic diet clinic and we did blood work and today i will be submitting a 3 day food diary and once they get the blood work done they will give us a date to be admitted. once we are admitted we will learn about the diet and hopefully she will be ok with the diet changes. they said it will take at least 6 months to know if it will help her. she will be eating orally but also be fed ketocal through her g tube. we are anxious to start this diet and hopeful it will help
Friday, January 16, 2015
this surgery has really sucked. i cant bare weight so now im confined to a wheel chair or knee walker and both are hard to use. the fact i have to lay down with my ankle propped up also makes it hard on me. never in my life have i ever stayed down like this. it just sucks and now my ankle is starting to itch and that just drives me crazy since i cant even reach it. the positive is lexi has been very helpful and willing get what i need. im hoping to be able to go home tomorrow but i guess it depends on when my mom will feel comfortable with me being home with lexi by myself.
Wednesday, January 14, 2015
i had my surgery to fix my ankle yesterday. we got there at 9 and i didnt get taken back to have surgery until 1230. i woke up crying so hard because of the pain and i believe the affects of the anesthesia. i know it worried them enough to have the dr come and ask me what was wrong and then the nurse even went and asked the anesthesiologist if there was anything else they could do. they offered to do a nerve block but i declined and they gave me more pain meds. last night was rough im only able to sleep for 2 hrs at a time because i cant get comfortable enough to sleep.here are some pics from what they did to my ankle and how much they wrapped it up to protect it
Friday, January 9, 2015
lexi has not been sleeping well and has had an increase in seizures at night so wednesday i called the neurologist. her neurologist was out of the office but her nurse called the neuro and she decided to increase phenobarbital to 5mls in the morning and 10 at night.with that increase lexi slept the best shes slept in a week. her nurse did happen to talk to me about different remedies that just might help her seizures and has printed off them and will mail them to me. some even include essential oils. she also told me about a research being done down at the childrens hospital with cbd oil. the neuro and her nurse are going to look into seeing how to get lexi into the research because they feel lexi would be a good candidate since she failed the vns and multiple medicines. onto other news we got about 6 inches of snow and the kids around here have now had 2 snow days. i went out this morning to a huge snow drift in front of my garage so im guessing im not going anywhere anytime soon.
Sunday, January 4, 2015
winter has officially decided to come and it has started snowing just enough to make it slippery. i dislike snow but at the same time its nice because its finally gonna be cold enough for it to kill some of the germs. we have gotten lucky and lexi hasn't gotten the flu thats been going around. which is good since i'v been worried about if she would catch it. school starts back on tuesday and i think shes ready for it since she has been out of her routine for 2 weeks now. im hoping she will start being happier again once shes in school. they did finally find her a new teacher since her teacher quit to go work in another class room. im just hoping shes a good fit and will be great with lexi like the other teacher was. the best part is her para will still be there so she will see her and hopefully her para can help her adjust to a new teacher. shes been cranky today and im for one ready for her to go to bed lol. hope everyone has a great sunday
Friday, January 2, 2015
over a month since iv updated and alot has happened. first of all lexis doing good. she started phenobarbital and has responded well to it. she was suppose to go dec 18th to rileys to do the ketogenic diet clinic but the dr had an emergency so now we have to wait until feb 17th before she can go down. it would have been this month but i have to have surgery so i had to postpone clinic til then. shes done really good in school and had a good christmas. she has been having more accidents so i think its time to figure out whats going on with that. as for me im having surgery on the 13th on my ankle and i wont be able to bear weight for up to 8 weeks. its gonna be very hard on me but im anxious to not be in pain anymore.hope everyone had a great christmas and new years