Wednesday, December 25, 2013

merry christmas

hope everyone is having a merry christmas. lexi had fun got lots of gifts. my greatest gift of all is lexi has been seizure free for 5 days. that makes me so very happy









Monday, December 2, 2013

thanksgiving

on thanksgiving we went to my moms house and had a huge meal. it was a nice little get together. lexi has recently been not eating as much as she use to so she barely ate any of her thankgiving meal. my neice decided to help her out and ate her food lol. after dinner me my brother and sister in law went to walmart to go shopping. i got a 32 inch tv for 98 dollars so i was happy to save money that way. i also pretty much finished my christmas shopping except for my mom. but shes pretty easy to buy for. i figured i would get shopping done so i wouldnt have to worry about having to find someone to keep lexi so i could shop for her. plus shes has appointments so i figured its better to finish it now than later.

Saturday, November 23, 2013

more appointments

so monday i went and had an mri done on my ankle because it's been hurting to even walk for almost a month. well the x ray showed no fractures just a sprain or so we thought. went to the mri found out i do have a stress fracture so now im in a walking boot for 3-4 weeks. great just what i wanted lol. then on tuesday we went and saw lexis pulmonologist/sleep specialist. we decided to start her on a new medicine called razerm or something like that for sleep. we are also doing a bronch on december 10th to see if there is a reason for her sleep apnea since shes had her tonsils and adnoids out. we also saw her developmental ped who started her on folic acid.we decided to get a pulse ox to see if her oxygen drops at anytime during her sleep. we also plan on trying a few other things if needed. we  was suppose to see gi but for some reason her appointment was canceled and never told me about it. so we will see him on the 2nd after we see neurology again. so far keppra wean is going good no major side effects

Thursday, November 14, 2013

med changes

i feel like all we ever do is go to dr appointments. today we went and saw lexis neurologist. shes awesome and i love her. we decided to up trileptal to 3ml in the morning and 4ml in the evening. she wasnt going to start weaning keppra yet but since i expressed the fact that lexi is still having bad anger issues she decided it was safe to decrease keppra to 4ml in the morning and keeping the evening dose the same. im nervous to make these changes but im hoping it will help her. the neurologist did say that focal seizures are very hard to control so we will keep keeping on

Tuesday, November 5, 2013

what im thankful for

since i'm not into the whole lets write what we are thankful for everyday i figure i would make it one blog post. first of all im thankful for the wonderful maker of this earth. God is truely amazing and im glad to follow him and raise my daughter to know him. 2nd of all im thankful for my mom. without my mom i wouldnt be the woman i am today. she is my best friend and she is there when i need her. she also is the one who rents her house to me and watches my daughter after school. im thankful i have a wonderful daughter who is amazing despite all her challenges. im thankful for her doctors her therapist her school and bus driver they are part of the group we have. they keep her going and me going. im thankful for my friends. my friends seem to care much more than some of my family and im truely thankful for that. im thankful for the friends who have came with me to appointments have waited with me during hard and trying times with lexi and also have been there to just listen. despite everything if it wasnt for god we all wouldnt be here so i believe he is the one im most thankful for.

Monday, November 4, 2013

special needs and people who dont understand

i think i have some jealousy of people who have kids that dont have special needs. i was talking to my friend and she said her son got to go with his aunt and uncle for the weekend. it got me thinking that if i ever wanted lexi to go anywhere with anyone i would have to teach them how to give her meds through the g tube, i would have to teach them about her seizures and the types she has. i would also have to make sure they knew to give her her meds at the same time because if your late or miss a dose she can have more seizures. dont get me wrong she is a blessing but its just the thought of having someone keep her overnight that is exhausting. i guess thats why i keep her close to me and with me. i dont get the people who complain about their kids on facebook or go out and party every weekend. its like if you didnt want to have a kid why would you,

Saturday, November 2, 2013

loving life

so since the last time i blogged we went and saw her neurologist. she has spikes in her frontal lobe that then moves to being generlized. so that means she still has seizures. so because of the fact that we upped her keppra and her aggressive behaviors we have decided to start trileptal at 2ml. then on the 14th we will go back to the neurologist and start to wean keppra. to wean a med makes me nervous. im nervous that if we start weaning shes either going to have bad withdrawls or shes going to have an increase in seizures. but i guess we will deal with that in a couple weeks. as for parent teacher confrences shes doing good in school. we got an i pad for her to use at school with the proloquo app on it. we are hoping she can start to learn how to use it to communicate better with her peers and the teacher. i know the teacher gets frustrated because she doesnt understand what lexi wants or is trying to say. i can relate to that but with me i'v became accustomed to learning her ques to what shes trying to say. other than that we went trick or treating on thursday which went good. she walked the whole way and only complained about wanting to be carried towards the end. which is normal for her but im glad she pushed herself to do it. shes been sleeping more especially at night which is awesome but im waiting for the ball to drop. i know she wont continue to do it unless she was having seizures at night and since we started a 3rd med it has helped her sleep. guess we wont know for a while if it was that or if shes in her phase of sleeping again. ill try to blog more but its hard to remember to blog.

Saturday, October 12, 2013

overall

lexi is doing well in school. Wednesday she had a sedated eeg and that was difficult. she had 2 doses of the sedative and she still woke up fighting the nasal cannula. she had a 20 sec apnea event where she stopped breathing as well but overall i guess it went well. Wednesday night she had a few more seizures but i didn't think anything about it. Thursday night she had 7 so i called neuro on Friday and she upped the keppra to 6mls 2x day, use diastat as needed, have blood work done on Monday and see neuro on Thursday. plus on Tuesday we have parent teacher conferences so this week will be fun.yesterday we went and picked up her special needs car seat which is totally cool. iv never seen a car seat so nice like she has now. much better and now i don't have to worry about her escaping. plus it helps with her low tone as well



Saturday, September 28, 2013

about lexis special needs

when lexi was 2 and a half she was diagnosed with autism,sensory processing disorder, hypotonia and behavior disorder. i thought that was bad and nothing could scare me. fast forward a year later when she first had her seizure. that right there scared the daylights out of me. i honestly didnt know what to do when she had her seizure. i was going to call my mom but instead called 911. and then witnessing her have multiple seizures that night scared me even worse. the fact that i was at the dr office holding her when she had another one as well scared me. but even then i dont think i quite understood that this is what we was gonna be dealing with. i heard about epilepsy but never thought it would happen to my child. since the day she was diagnosed 9-19-11 iv never slept that far away from her since her seizures happen at night. i worry everyday when shes at school just because i know seizures can happen anywhere. since the diagnosis of epilepsy she now has a diagnosis of apraxia, and asthma. she takes 2 seizure meds 2 times a day, a antacid, inhaler, vitamin and allergy pill. she has a g tube so we know shes getting her meds on time and its no longer a fight. she may have many diagnosis but shes an amazing little girl with a lot of strength and will power

Sunday, August 18, 2013

kindergarten

last wednesday lexi had her first day of school. she loves it i think. i honestly don't really know because she says no big school but from what the principal said she trys to communicate with them and she plays beside the other children just not with them. i hope the school will be more open to telling me how she is doing in school. its so hard not knowing what she does all day because they dont send home notes telling me anything. i decided to hide all the treats in the house in hope that she would start eating what i feed her but that hasn't been successful. she only ate 2 pancakes and 2 hotdogs yesterday and just a peanut butter sandwhich today. i offered her spegetti for dinner and i think she just played with it and never really ate any of it. i honestly dont understand why she wont eat unless there is something wrong. maybe her stomach hurts and thats why she doesnt want to eat who knows since she cant communicate it to me. friday was a bad day overall with her. she woke up at 4 and had 3 hrs of therapy and by the 3rd hr she was just not having it. she screamed for 20 mins straight. hopefully this week will be better and hopefully we will get her c pap and pediasure. now for some pics











Tuesday, August 13, 2013

new update

medical update then the rest. first on thursday we went and had an echo done. dont think we will find any surprises there just a check because it was one thing she hasn't had checked. friday we went and saw her endocrine dr and her geneticist. endocrine dr said she hasn't grown/gained weight in 10 months so hes checking her thyroid and checking for celiac disease since she has a gluten allergy. genetics was a waste of time except we did get a prescription for a special needs carseat which im excited about because she will no longer be able to get out of the carseat like she can now. little hoo diny figured out how to get out when shes mad so now just gotta wait until insurance approves this new carseat. yesterday we went and saw pulm, gi and developmental peds. pulm put her on singular a new rescue inhaler and ordered her to be put on a c pap at night. when she had her sleep study done it showed she has high co2 numbers so we need to get that fixed. he also got a x ray of her throat because i guess tonsils can grown back and he wants to make sure hers didnt. gi dr started her on zantac to see if that will help with her stomach acids and the fact that her g tube constintly leaks. so far it seems to have helped some. he also is putting a prescrip through the home health to get us pediasure or something close to it so i can make sure shes getting enough calories in her. he said since she wont eat and has never really been a big eater we really dont have to fight since we have the g tube. makes me feel better we are on the same page. maybe she will actually start gaining some weight now. developmental ped just basically went over the other appointments and said she would see us back in 3 months. we also started a new seizure med vimpat to hopefully stop the seizures. i know that if u dont control the seizures with 1 med then the likely hood of getting control of them is very slim. she did say that if it came between the ketogenic diet and the vns she would go with the ketogenic diet do to it being less invasive. im just hoping the vimpat works for her. we meet her new neurologist on tuesday and i hope shes really good. not saying anything bad about her neurologist now but i think we need one closer to home and on the same page as me. so now onto news about lexi. she starts kindergarten the 14th. i am nervously excited for her. so stay tuned and ill have pics to upload soon i promise

Tuesday, July 23, 2013

answers finally

so we went and saw the geneticist today. lexi has 3 duplications of her chromosomes. the first one is 2p21 involving six3gene. we dont think this one is affecting her because she doesn't have holoprosencephaly. the second one is 7q32.1 incolving the flnc gene. that one would explain her muscle weakness so they did blood work to make sure we arent dealing with a muscle myopathy. 3rd one is 15q22.2 involving the gene tpm1. now that one causes cardiomyopathy so we now have to have an echo to make sure her heart is ok. honestly we have answers but we also have questions as well but im glad they found something finally

Thursday, July 18, 2013

might just finally get results

so this morning i got a phone call from lexi the nurse at the  developmental dr office. she asked me if i knew lexi was referred to genetics and have a appointment on tuesday. i said no and asked why we was being referred once again to this genetecist. lets back up and give u a little back ground. we saw this genetecist like 2 yrs ago and they couldnt find anything so we moved on. in january of this year we saw a gentetics dr down at the children's hospital because they test for more than this dr. so when i asked why we was being rereffered i had all reasons to. the nurse said its because of the results from the chromosomal  microarray test they did in june. i almost forgot they even did the test because honestly figured if i hadnt heard anything by now then the results was normal. guess not so now on tuesday we will find out what they found. im kinda nervous but anxious. hopefully its helpful news and something that will make us go oh wow thats whats wrong with her. i will post the answers when i get them on tuesday

Monday, July 1, 2013

jinxed it

so last week was very eventful. on tuesday i went to give lexi her meds threw her tube and the tube came out. i then put it back in and filled the balloon and it stayed. well sometime between tuesday night and wendesday morning the tube came out when she was sleeping. i tried to put the tube back in again but couldnt find the hole to put it in.most likely because she wasn't relaxed but anyways we went to the hospital and they said they didnt have any mic-key buttons and couldnt put her old one back in. so they put a catheter in and we went to the the gi dr. got there and the gi dr didnt have any mic-key buttons either so we scheduled the mic-key button to be reinserted today. it went good actually went in better than the gi dr even thought it would go in. it took less than 5 minutes to place it and she was back with me in 20. we didnt get to go on our trip however but hey i guess thats life with a special needs child. i do have to say i do love her gi dr hes very sweet and caring. when he came in before taking her back he asked me what happened on thursday and i told him her g tube was infected and they put her on antibiotics. he looked and said wow it looks much better. so im glad she has him as her gi dr. all i have to say is what else is gonna go wrong lol i really wanted to go on our trip but i guess theres always next month to go.

Monday, June 24, 2013

summer is officially here

summer is here which means that it is getting hotter. on Friday i called her pulmonologist and they put her on an inhaler in hopes it will help her breathing at night. i can definitely tell when she is on asthma meds because she doesn't cough and is breathing so much better. this also means that she has a hard time breathing during the day when it is hot outside so she only plays for a little while before she comes in and takes a break. she hasn't been sleeping well again. guess i should have seen that coming. its like a cycle that keeps on repeating. she was suppose to have a sleep study done last monday but she refused to get hooked up so we came home and i requested to try somewhere else that might have more experience with special needs kids. so we are being referred an hour and a half away. dont have a date yet but hopefully soon we will. next sunday we are going on a trip so hopefully she does well on the trip

Thursday, June 13, 2013

many updates

On Monday I took lexi to the pulmonologist and her developmental pediatrician. The pulmonologist didn't say much about her not sleeping that we will wait to see what the sleep study shows on Monday. he did decide to start her on prednisone to see if the cough she constantly has might be asthma related. since she started on the med her breathing has gotten better especially at night. she also isn't coughing which is finally nice to be able to say. i will have to call the office tomorrow and tell them the med is working and they will prescribe her an inhaler to use. she is up to 36 lbs so that's a good thing. the developmental Dr was very nice this time. she said she doesn't want me to fight with lexi about potty training. she wants to give lexi a break and see what happens. she also has referred us to get her eyes checked, her hearing tested again and to see a neuropysch doctor in July or around then. i also talked to the Dr about getting lexi seen by the neurologist there because in that office you see the neurologist and not the nurse practitioner which with the neurologist she sees now lexi only sees the nurse practitioner. so i'm hoping they will get her into see that doctor soon. the doctor is also requesting to see a copy of her iep because she doesn't the school is going to be helping lexi enough next year and from her words shes very worried about her. which i am too. iv been saying that since day one but the school says if we place her in a special needs class then its going to be too restrictive. i guess we will cross that bridge when we get to it. summer update. lexi has been getting to go swimming with her babysitter and she is doing good with being in the water. the babysitter says shes like a little fish now. so awesome since she doesn't like baths. dont get me going about that one. she started summer school today and its only one day a week. im hoping it helps her a little more. the first week of july me and lexi are taking our own little vacation. its going to be an adventure but im ready for it. me and her deserve a much needed break. especially from work and everything it will be fun to get out and do some things. wont be a huge vacation but a little get away. i just hope the weather is nice and warm for us.

Sunday, June 2, 2013

sickness

well lexi had a virus that resulted in her puking over 5 times very violently. poor girl just wanted to sleep instead of getting sick. then to top it off i have lost my voice and lexi thinks its funny when i try to talk to her because my voice sounds very funny. sad to say i have never had my voice sound this way but i guess this year i get sick with the weird things. other than sickness going around lexi is doing good. shes been talking more since she got the ear tubes placed. you still can't totally understand her but its getting better. her seizures are still occurring but hopefully the nurse practitioner will either up her med even more or try a new med. so hard watching her have a seizure. her anger issues are still happening very often. i have noticed a new symptom where she starts sweating for absolutely no reason or she becomes very clamy like her body cant regulate her temp. its very odd

Thursday, May 23, 2013

another update

so lexi is still having an increase in seizures especially at night so the neurologist has upped her keppra to 4ml in the morning and 5 ml in the evenings. we go and see the nurse practitioner tomorrow to see what to do now. shes been very clumsy and falling alot and hasnt been wanting to sleep so im not sure if its due to seizures or not but its not normal. school is out for lexi next tuesday and then she will be only going on thursdays until kindergarten starts. hard to believe she will be in kindergarten. she had ear tubes placed on monday and did really well with that. which im glad about.

Sunday, May 12, 2013

sneak peak

 we had pictures takes by two different photographers on two different days to try and get some really cute pics of lexi. she hasnt had any professional pics done in a while so i figured why not now





Friday, May 3, 2013

alot has happened

not sure when i last posted a blog but i know its been a few weeks.last week lexi saw her developmental dr and the sleep specialist. the developmental dr appointment didnt go so well. i dont think it ever goes well but this time the dr pissed me off more than ever. she said lexis development has stalled and so has her language. she then said lexi is like a 2 yr old only bigger. i dont agree with that because in school they say shes developmentally a 3 yr old. the doctor also told me i should feel lucky that she got lexi a g tube. it even says in the notes from the last appointment that lexi is very strong and will not take her meds even for the dr who says she is skilled at getting kids to take meds. plus on top of that lexi doesnt eat as much as she needs to grow so she needs the g tube. then the dr decided to put her on adhd meds which she is not adhd. the first night she had the med she started having seizures again. so i tried another night just to see if it was a fluke and again she had more seizures. i dont understand why the dr would put her on meds when it even says it may increase seizures. now the sleep specialist/pulmunologist was a better appointment. he put her on 2 weeks of antibiotics and ferrous sulfate for low iron. he also said if her cough isn't better in two weeks to come back because he wants to figure out why she has a cough all the time. he did say he wants another sleep study to see if her sleep apnea is any better or if she needs a c pap. so that is scheduled for june 17th i think. over all lexi is doing ok. shes still not sleeping but now shes crying shes in pain so who knows where shes in pain from. her speech class ended for the yr so now she goes to school for 2 days a week. we also moved last week so its been a busy week

Monday, April 15, 2013

how do you get doctor's to listen

First of all I wanted to say lexi got her mic-key button placed and it went well. shes back to being happy again. ok now onto what i want to say today. most of lexi's life i'v had to fight to feed her. in the hospital when she was born she wouldn't eat and wanted to sleep. i got yelled at by a nurse because it was over 6 hours between feedings. she lived on formula until she was close to 9 months old because she despised baby food and would refuse to open her mouth. after that she still liked formula to food. shes never been a good eater. she rather just sit there watching everyone else than eat. she got her gtube not because of eating but because of her need for meds and her refusal to take her meds. only reason we even met with a gi doctor was because her developmental pediatrician knew she needed her meds. when we met with the gi doctor they blew me off with any concerns about her eating. i told them she wont eat and that its a miricle that she got up to 35lbs. most of that weight comes from milk honestly. instead they put the g tube in just for medicine purposes. when she got the tube i did research and started bolus feeding. the doctor still wont acknowledge that i bolus feed. he said good job that i learned but nothing more. he went so far to tell me to just hold her down and give her meds forcefully. one i feel like a failure because i cant make my child eat and two i feel like they don't listen to me. i like her gi doctor but im beginning to think he either needs to listen to me or i need to find one that will listen to me. shes been 35lbs for a yr and a half and just wont gain no more weight. i guess its good shes stable but i thought that she should be gaining at least something. her sleep specialist is the same way. because she wont wear a c pap they said there is nothing else to do for her. i know there is something someone can do to help her central apnea and to get her to sleep thru the night and not wake up numerous times at night. its like because shes not diagnosed with a syndrome they don't want to help me.

Sunday, April 7, 2013

the last couple days

Oh my what a roller coaster this week has been. On Thursday lexi started to bleed a lot from around the g tube. more than iv seen and more than just from from the skin being rubbed on. So when I got home I called her doctor and after telling him it was still bleeding and she was in pain he told me to go to the hospital and that he would have her be admitted and we would get the g tube out and put the mic-key button in depending on what he finds in there. So we get to the er and they take us right back. well when the er doctor came in he told me there was no reason to be admitted and that he wanted to change the tube right there. i told him under no circumstance was he taking out her g tube and that he better go call her GI doctor. So then to get back at me the er doctor told her doctor that it wasn't bleeding and that it was just to close to her skin. So her doctor decided based on that not to admit her. The er doctor came in and had 5 other nurses hold lexi down and pulled her tube away from the skin. All of this took 5 hours which was totally unnecessary. Then Friday the doctor called and said he wanted to get her tube removed this Monday. Well medicaid said no so now we have to wait until the 15th. Its just stupid that she has to go through so much when its unnecessary. Plus on top of it all lexi has decided that 3 am is a good time to wake up and stay awake. Honestly what child wakes up at 3 and is ready to play lol. During speech on Friday her therapist decided that because lexi isn't progressing as well in verbal language that it is defiantly time to start teaching lexi to sign what she wants and needs. I'm impressed to say that after one session of teaching her animal signs she knows how to do them pretty well.

Sunday, March 31, 2013

Easter 2013 plus some

So today was a good day. I got lexi some bubbles,chalk and sandbox toys for her Easter bucket. I decided to go small because 1. Easter isn't about gifts its about Jesus rising from the grave and 2. she really doesn't need anything but stuff to do outside. We went to church and then in the afternoon we went to my moms house and ate dinner and hung out. I rode my first 4 wheeler today and that was fun. She did start to freak out with everyone there but after a while she was OK being there. Its hard seeing her not being able to fully enjoy being around other kids. I did find out on Friday she is being referred to the ENT so her appointment for that is April 15th. I'm just ready to get this done and over with. I just hope she doesn't suffer any hearing loss due to her ear drums bursting twice. Good news is her g tube is starting to look better so i'm thinking on Thursday i'll be able to schedule her endoscopy to switch her peg tube to the mic-key button. I'll be happy to not have the extension constantly  hooked up like it is with the peg tube. Spring is almost here. We have had some beautiful days in the 50's but tomorrow and tuesday it looks like its only suppose to be 36 which sucks. I'm ready for the windows to be open and the sun to be shining again. Hope everyone had a wonderful Easter.





Thursday, March 28, 2013

update

so for the past week lexi's g tube has been infected or at least the site around the g tube has been. when we went to the GI dr last week he told me to put a&d ointment and triple antibiotic cream on it. over the weekend it has steadily gotten worse. well i was finally able to get her into the GI dr today and he took one look at her g tube and say its really infected now even with the ointments so he put her on an antibiotic for a week. he also said since we are having issues with this tube then we should switch her to a mic-key button so next week when we go back to make sure its finally healing we will be setting up the appointment to get it switched. i think it will be easier when we get the mic-key button or at least i hope so.

Tuesday, March 26, 2013

lexi's story of epilepsy

Lexi was lucky to not have seizures up until the summer of 2011. Why she all of a sudden developed seizures we have no clue. in september of 2011 she was cranky the whole day. so i ended up putting her to bed and i was laying down playing on the computer when all of a sudden i heard her make a choking noise and i got up turned on the light and there on the floor she was having a seizure. it scared me shitless excuse my french. i called the ambulance and we went to the hospital only to be released shortly after from what they called a febril seizure. i brushed it off came home and slept on the floor with her. the whole rest of the night she constintly had seizures one after the other. i made an appointment with her pediatrician and we went in. the doctor tried to give her some medicine to get her fever down and when that didnt work we undressed her and put cool rags on her. she started seizing shortly after the dr walked out the door. the dr ran back in and said we needed to be admitted that she was calling for an ambulance. they never did figure out what her fever was from that time. we stayed at the hospital for one night and got sent home. fast forward two weeks later. me lexi my friend and her father went to the park so lexi could spend some time with her dad. we had just started walking back towards the car when i heard a loud plunk. i looked back and there was lexi seizing. i grabbed her and yelled for someone to call 911. i will never forget all the children there at the park looking scared.anyways during that hospital visit they decided to try to do a cat scan but that didnt work so they put her on kepra and scheduled her for an mri a couple days later. during her first mri they found a cyst on her brain which they don't know what it is. since the inital seizures shes had more. shes now on 3.5ml of kepra 2 times a day. because of her not wanting to take her meds she has had a g tube place and since then her seizures have been under control. i will never ever forget the moment i had to watch my daughter seize.here she is today sporting purple to help raise awareness

Friday, March 22, 2013

go purple on march 26th

on march 26th its purple day. which means wear purple to help raise awareness for kids battleing epilepsy. up until september 2011 i really didn't know what epilepsy was. i learned very quickly what a gran mal seizure looks like and how frightening it is to watch your child have one. i will be sharing the whole story behind lexi's epilepsy diagnosis on tuesday but for now i would just like for everyone to wear purple on tuesday and if you could post a picture on lexi's facebook page so she can see how many people are helping raise awareness for her and everyone else. her facebook page is https://www.facebook.com/Advocatingforlexi  

Wednesday, March 20, 2013

ear infection/ sleepy

So on Saturday Lexi started to complain about her ear hurting. So we gave her Tylenol and she slept a lot. she woke up on Sunday morning doing OK but by afternoon she was sleeping once again and complaining of her ear hurting. so Monday i took her in to the doctor and she has another busted ear drum. mind you she had a busted ear drum in January as well. so my question is how does she get 2 really bad ear infections that bust her ear drum I just don't understand. last night she slept from 6:50 to 5:30 this morning. I'm glad shes getting sleep but I think its her body's reaction to sleep when ever shes in pain or don't feel good. Today we have an appointment with her gi to hopefully schedule the switch from the peg tube to a mic-key button or mini button. Hopefully it will be soon and hopefully we will get in with an  ent soon as well to schedule getting tubes in. I'm just praying with 2 busted ear drums within 3 months of each other that she doesn't have any hearing loss. I know its rare but my father lost his hearing due to a ear infection so now I'm causious when it happens with lexi.

Friday, March 15, 2013

iep meeting for kindergarten

The meeting for the iep for kindergarten went Ok I guess. I honestly don't believe they have dealt with special needs kids like Lexi before. Her kindergarten teacher when i asked if she knows sign language she laughed and said thats not something shes gonna learn. How do you expect to teach a child with communication issues and not know how to know what she is saying. Then i asked about how many kids are gonna be in a class and what happens if lexi cant handle it and the teacher and the principal says well kids in kindergarten are loud so guess she will have to deal with it.seriously i don't think they truely understand sensory processing disorder. they are willing to let Lexi go somewhere and rest if she needs to. so that's a good thing. To top it off i asked about an aid for lexi and the principal said there will be someone in the class but not someone who is working one on one with her. that makes me worry because i was hoping for a para who would work with lexi one on one and be able to help her when needed. i guess she could suprise me and do really good in school but still shes so far behind and needs extra help that i honestly don't believe shes gonna get at the school shes assigned to go to.

Tuesday, March 12, 2013

some results from the geneticist

Well yesterday i got the results from the comparative genomic hybridrization and its normal. Now what does that mean it means that her chromosomes are normal. Now while that is good news I still am hoping they find something on the other tests they have done. Don't get me wrong I don't want something wrong with Lexi but since there's already so much going on with her i would like to have a name or syndrome so that way when people ask whats going on i can be like she has this and not name off everything. I mean having a name probably wont help but still it would be nice to not be undiagnosed. She is doing better with the snotty nose and the cough. I'm thinking the doctor was correct and it is allergies. Now that just means the doctor will probably want to do allergy testing to see what she is allergic too. Another new development is that she's not wanting to eat much now. I don't know if its a sensory thing or if she just doesn't want to but i'v been having to put pediasure in her tube at night so she can get extra calories. People say kids wont starve themselves but when she has been 35lbs for quit some time its time to get her some extra calories.

Sunday, March 10, 2013

allergies in the winter?

so i took lexi to the doctor on friday since shes still coughing alot and has a snotty nose. well the doctor came in and said it sounds like allergies. its possible it could be allergies im just hoping she gets relief soon. the doc put her on zrytec and it does seem to help some so thats a plus. the doc also said if shes not better in 3 months then she will send her for allergy testing. i honestly don't want that but i will do what ever helps her. still don't have an appointment with a ent hoping they will schedule that appointment tomorrow so that we can be seen soon and have tubes placed. on to other news we will be having the case conference soon to get her ready for kindergarten. but from the sounds of it the teacher don't think she needs the special help and she will do just fine. my fear is that shes already regressing in speech and other areas of development that she does need more help. shes not even any where near potty trained. its not from lack of trying either because lord knows we have tried so many times to get her potty trained. she just seems to lose interest or regresses to where she doesnt want to go on the potty anymore. well have a great week

Saturday, March 2, 2013

sickness

Sunday Lexi got sick and i couldn't get her fever to break for nothing. she had it from friday night til monday so i took her into the er where they gave her some cough medicine to help her stop coughing so much and they also did a x ray which showed nothing. The doctor looked in her ear said it was infected so he gave her an antibiotic as well. well two days later she was still coughing very bad plus her g tube look infected so i took her back into the er and all they did was change her antibiotic to something stronger. So for now we are just waiting for her to get better hopefully soon. Yesterday we had therapy and all her therapists said she is regressing. They aren't sure if it's due to the sickness or what but shes very clumsy, very tired/pale and her speech is not as well as it had been. Hopefully it's just the sickness making everything worse but with her you never know. We also had her yearly hearing test and she is hearing worse than she was last year but that's probably because they found out her ears are full of fluid. So now sometime soon we will most likely be looking at getting tubes placed. It kinda upsets me because it seems like here lately she has had to go through a lot but at the same time i'm glad its just fluid in her ears and not permanent hearing loss. So thats a good thing.

Sunday, February 24, 2013

genetics appointment

Well Friday we went and  saw the genetics doctor down at Riley's and they was very informative. Also very nice considering we was half an hour late because of the snow and ice we ran into heading down. The doctor said that while nothing stands out they are rechecking all her chromosomes because i guess they can detect things that other places cant. they also are going to rule out Rhett syndrome since she does have the autism and she has seizures. they said she would have a mild case of it if she did have it but they are pretty sure she doesn't. they are also checking for 3 specific genes that can cause developmental delays and seizures. they said that since Lexi is pretty healthy that its very hard to pin point anything by just looking at her. the geneticist said that we can continue to look for disorders if they don't find anything and that its my choice when we stop. overall i found them very helpful and hope they figure out what is going on with her. it may not change anything but it would be nice to know whats causing everything. Also on Friday we went to the children's museum which pretty much was a bust because between the lights and the noise it sent her into sensory overload and she cried and complained the whole time. I'v never seen her react to lights before so that was kind of strange in itself

Tuesday, February 19, 2013

happy 5th birthday

today at 4:20pm lexi officially turned 5 yrs old. hard to believe she is now 5 years old. she has overcame so much and continues to overcome alot.

Monday, February 18, 2013

results from the video eeg

we finally got the results of the video eeg that was done in january. the neurologist said that her eeg is abnormal which means her brain was sparking alot. so in other words she either was having seizures during the eeg or her brain has the tendency to have seizure activity. so either way we need to continue medicine and we go back in 3 months for a follow up. they also ran some blood work to check her kepra levels and check her electrolites to see how they are. im just glad that we finally have answers and that i wasnt just thinking i saw a seizure when i actually did. also im glad that i did go ahead and get the g tube put in because her doctor even said that shes never seen a child not take medicine but when the nurses who are experienced in giving meds cant then something has to be done. i guess it was the doctors first time ever having a g tube placed because of failure to take meds but what ever works to keep seizures at bay.

Saturday, February 9, 2013

update and moving

so lexi is still on pain meds every few hours. shes in major pain still and its kinda worrying me. i would think that by now it would stop hurting or at least lessen the pain. she is doing really well though not messing with it and letting me give her meds through the g tube. which is now a relief to know she is getting her meds everyday. on to other news i have decided to rent my moms house. so as soon as she gets moved in with her boyfriend and moves her stuff out i will be able to move into her house. im excited because its a 3 bedroom house and has a big back yard for lexi to play.

Monday, February 4, 2013

g tube surgery

lexi had her g tube placed today. it went all good until we got into her room and then the nurse did something to her iv and it squirted blood everywhere. so then we had to go to the treatment room and fix her iv. she then got into her room and she cried for a good 2 hours before the doctor on call got her some pain meds. let me tell you i have never seen lexi in so much pain until today. i definetly was not prepared for the pain. the nurse also thinks she had some kind of reaction to the anestesthia as well. we had a roommate but he got to go home which from the sounds of it was good since they had been here for 6 days. after a nap she is now happy. we are now just waiting until the doctor tells us that it is safe for her to eat and just hang out until tomorrow

Wednesday, January 23, 2013

kinda long update

so today lexi had her follow up mri. the neurosurgeon said it looks the same and that she will see her in one year and if its still the same size then we will not worry about it again. yay so happy to be able to move on from that. the neurosurgeon wasn't happy that they didnt get us into neurogenetics so now we have an appointment on feb 22nd with regular genetics and if we dont see the doctor that the neurosurgeon wants us to see then we will go to the appointment on march 25th. so hopefully we will get some answers about whats going on with her. while we was there i got the call from the gi's nurse and they scheduled the upper gi for friday at 7:45. and she said that for the g tube we will have to be there at 8am on feb 4th. plus on top of everything else lexi has therapy on friday and a dentist appointment. i also need to call at some point and make a eye doctor appointment for her and a hearing test just to make sure those are still good. 

Tuesday, January 22, 2013

g tube

so today i went to lexi's developmental peds appointment and told her how we are still fighting to get lexi to take her meds. her dr then decided enough is enough and got us in to see the gastro interologist today. they decided since we have tried every way to get her to take her meds its time to just place a g tube. so on feb 4th we will have the g tube placed. im still waiting for them to call with a day and time to do a upper gi on lexi before the g tube placement. i also need to schedule a eye dr appointment along with a hearing test as well for lexi. lots of appointments but it all needs to be done. pray for us as we go to rileys tomorrow for lexis mri and appointment with the neuro surgeon. i know there isnt changes but still praying we make it down safely

Friday, January 18, 2013

busy week ahead of us

Today is a day of doing laundry and just relaxing. Surprisingly Lexi didn't have therapy today because they had some kind of meeting so all therapies were cancelled. So for the first time in a very long time me and Lexi are just relaxing today. Its nice since next week is going to be very busy. I work Monday then Tuesday Lexi has school and has an appointment with her developmental doctor. Then on Wednesday we have to travel down to Riley's for an mri and to see her neurosurgeon. Then Thursday is back to school for Lexi and work for me. Friday is a day of therapy and a dentist appointment for Lexi as well. so next week is super busy. This week has gone good though I got her progress report and she is progressing very well. Speech however is very difficult for her. They say she understands more than she can say which i believe is very true. Still no word on the results of the eeg last week but we will probably get the results the 29th when we go to the follow up appointment with her neurologist. Another thing new this week is she refuses to go to sleep now until very late. last night it was after 1030 and she was up early. Not sure whats going on with the sleeping schedule

Thursday, January 10, 2013

update on hospital visit

i honestly have to say i love parkview regional medical center. they are so friendly and the nurses actually care. i was told by the nurse this morning that they wanted to keep lexi because she was a quiet patient and they like the quiet patients to stay along time lol. during the stay she got a barbie, a stuff animal and a book. the book came from an organization called kateskart.org. if you have time you should check out the website. very cool that they provide a book to children for free when they are admitted. i got to see lexis neurologist and not the nurse practitioner and she said because lexi had a seizure in september or october she must still be on meds so depending on the results from the video eeg they will decide what to do. i can not say enough about this hospital and the nurses. i mean the nurses and even the people who brought up the food and the cleaning lady was so very sweet. they treated lexi like a person and not like a child who doesnt matter. now i believe lexi has an ear infection because shes been crying in pain and saying her ears hurt. poor girl cant catch a break thats for sure.

Wednesday, January 9, 2013

hospital

we are admitted and currently having the eeg done. Lexi fought like I knew she would but they got the leads on so hopefully they will catch something. The nurse practitioner came by and said once again that there is nothing they can do about her not taking her medicine but they are hoping they can catch something on the eeg. i hope so as well since i really don't want this to be a pointless admission. I do have to say I do like this hospital its very nice and they gave lexi an ariel barbie so she is increasing her barbie collection here latey. and they also gave her a stuff animal so that was nice of them. i can tell the nurses her cares for each patient because they treat lexi like a person and not like its just part of their job. my view from the room sucks though lol. its of the roof so not much to see lol. well that is all i guess. im bored but lexi is doing good and not trying to escape lol

Monday, January 7, 2013

well now lexi is sick

well now lexi is sick with a 101.5 fever. shes coughing and has a runny nose like as well. what ever this is hurts so bad and i cant stop coughing to where im not gagging from coughing so bad. i think it has moved into bronchitis or something. this crap needs to go away because if i feel this bad still i can only imagine what lexi feels like. but i guess everyone has it and if they dont have this one then they have the other kind. im so over winter already. it seems like everyone is sick now and its not going away. another thing is on wednesday lexi goes to the hospital to be admitted for her 24 hour video eeg which im hoping will catch something and not be a waste of time.

Friday, January 4, 2013

flu

of course wouldn't you know that when I tell people I don't get sick I actually jinx myself. I've been sick now almost 4 days but 2 days with high fevers. luckily i went to the doctor and was diagnosed with the flu and started on tamiflu so hopefully i start feeling better soon because i feel like crap to say it nicely. i just hope and pray lexi dont get it because it might not be good for her.