starters since its been 6 months since i apologize iv been extremly busy.
lexi: shes been doing ok in school now that we have found ways to help her better. her beginning of 1st grade was really hard she was being disruptive and not doing her school work. we had her iep in february and since then a huge change has happened. we have decided to add in play time after she does some work and that has been a major improvement. we have also decided that she needs to focus on how to be socially appropriate and how to act right socially so they are working on that as well. health wise its been up and down. seizures have been occuring more and she had a 3 minute tonic clonic a few weeks ago. shes been referred to the mayo clinic but i havent heard from them. we are working on getting a communication device for her as well. the holidays were hard on her but we got through them and she celebrated her 8th birthday 3 weeks ago.
my sweet addalynn. she is now almost 6 months old and is getting so big. in october she was diagnosed with milk protein allergy after having blood in her stools. so we switch her to nutramigin and then her reflux hit hard. so shes been on zantac since. she still has bad reflux but overall shes a happy little baby. she is sleeping mostly thru the night waking at 2:30 to eat. she learned how to roll over at 13 weeks which shocked me but since then she is content in rolling all over. she laughs and smiles at everything and has found a love for putting her feet in her mouth. she loves her nana papa auntie and is fond of her daddy when she sees him. she is growing so big and i cant wait to see what life has in store for this sweet little girl.
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.