Poor Lilly

  
Wow,Almost 2 1/2 weeks into Lilly being sick,and we still have no clue what is going on.We have done a stool sample,multiple blood tests,and a celiac panel.All results have come back negative except the celiac panel,we are still waiting for results which should be here in the next day or two.
   I have to admit I'm exhausted,it was been a couple of very long weeks filled with cleaning up vomit and diarrhea.On payday I'm going to invest in a plastic tarp to cover Lilly's whole bedroom floor.I'm so afraid the carpet is going to be ruined and we rent so I cant have that :(
   I feel so bad for my little girl,she is so miserable and spends most of her time curled up under a blanket watching movies or on my lap.I have tried to just put all my housework aside and give her my all,but its hard as we are nearing 3 weeks of her being sick.
  

Lillian Update

   Lilly has been sick off and on for 6 days now.Alternating between horrendous diarreah and vomiting.The fever seems to be gone for now,I had finally decided maybe she was better til tonight....She threw up all over her bedroom floor,I have cleaned up enough yucky stuff this week to last me awhile,but hey,at least she figured out to get out of bed and vomit on the floor(I just put all clean bedding on her bed tonight!) lol Im getting worried because this seems so out of character for her,but since she cannot tell me what is wrong I have been trying to guess,giving motrin,7up,pedialyte,at different times.Poor girl,breaks Mommys heart when either of them are sick :(  ( Lilly not feeling well this week)

   On a happier note Lilly is finally seeing a Pediatric Developmental Specialist on Thursday,the specialize in Autism,Developmental Delays,and Sensory Issues.I am very excited for this appointment and I so hope I am not disappointed in the doctor.I hope and pray they finally have some answers for us.I almost think the hardest special needs have to be the unknown ones that nobody has answers for.I have struggled for almost 3 years with some pretty strange stuff with Lilly and begged our Ped for answers he doesnt have,its frustrating to say the least!
   We had a playdate with a friend yesterday (I truly thought Lilly was well again or I never ever would have taken her out!)whose little boy is 14 months younger than Lilly and it was kind of upsetting to see that Lilly is pretty much on the exact same age level developmentally other than the fact that Lilly can talk more (if she chooses to) but other than that she layed on tne floor and played with a couple small toys but setting them in a frisbee,or sitting in my lap.
   I have been watching her closely the past month or so,well ever since I went to a big Autism conference,and its so hard to describe her except she is-Lilly lol my little girl who has a few very strange quirks and is anti social lol.Some days I try to will myself into believing its all in my head but then something happens and it all just slaps me hard in the face (usually at like 2:30am) when I wake up to feces all over the floor and wall,her face,hairbed,everything.Nights like that in the past I sat down and cry,and I beg God why? Why my little girl?Why me?I think I have finally gotten to a point in my life that I just thank God for giving her to me and for not taking her away the different times she has quit breathing or been so sick.Honestly I struggled in the beginning,dont get me wrong,I always loved her with all my heart but it was extremely hard to bond with a new baby that never slept or quit screaming.There were days,many days I laid her in her crib and shut the door and went and took a hot shower or listened to music for a few moments just to get calmness in my heart.I still have days like that,but they are much fewer and farther in between,I have learned how to cope with the stress,not like before when we were barely surviving.
   First of all,I always get up and shower and dress BEFORE I get the girls up.I need that little bit of time to pamper myself before I start my day.
   Secondly,the girls lay down for 2 hours EVERY afternoon,I need that time in the middle of the day to relax or get caught up on things,have a hot latte,and some days I take a short nap.I wouldnt let myself nap for the longest time because I told myself I was wasting precious time I could be using to scrub the kitchen floor or fold laundry,I have learned if Im exhausted it is ok to nap so I am refreshed when the girls wake.
   Thirdly,bedtime is at 7pm EVERY night unless it is a very very special occasion like Halloween or Performance night (for Daisy).Not only does that give me and Nick time alone to spend together relaxing it also keeps Lilly on a tight schedule and she seems to do much better that way.She will now bring me her blanket at betime and ask to go to bed if I am even running a few minutes late.
   Fourthly,I have learned to say NO when people call me and ask me to do something or give someone a ride,if Im feeling overwhelmed I now say "No,Im sorry I cant today" this was a very,very hard one for me because I have always over extended myself for other people and I have realized my girls and my home now must be my top priority.
   Alot of days I feel like poor Daisy gets cheated out of time that should be set aside for just her so on occasions I have been getting Daisy up from Nap early or letting her stay up a little later after Lilly goes to bed,Some nights I lay in her bed with her and just spend time talkign with her and enjoying her,I always want her to know how much I love her.She was such a good girl today even I was surprised lol she sat and snuggled with Lilyl while they watched Happy Feet (Lillys favorite movie)even tho it wasnt her choice of movie then she helped me pick uup all the toys and make Lillys bed fro her.I love Daisys sweet caring spirit,she is so much fun to be around.

Poor Lilly

   Poor Lilly has not been feeling well for a couple days

she was throwing up yesterday and then had horrendous diarrhea all night.I washed all of her bedding and blankie,scrubbed carpets,and bathed her multiple times since last night.I'm exhausted,but Daisy has dance tonight and she kind of cannot afford to miss it because her huge performance is in a couple weeks so practice times are limited and now we are down for the count!

   So hoping for a better night tonight for all of us!Nick went and got her some pedialyte and she is enjoying it so I suppose that is good,I hate giving her artificial sugary stuff like that but she needs to gain her energy back and be well hydrated.
   We got about 8 inches of snow last night and it is supposed to snow again tonight so Im debating of whether or not I should go get groceries to stock up or not today.I really dont  want to drag poor Lilly out although the weather is beautiful right now so maybe I should anyhow lol not to mention I need to stock up on a few medical items such as tummy meds,motrin,tylenol,pedialyte,cough drops etc.It would be nicest to be prepared for sickness unlike last night....lol
   I cut out 2 more sweater dresses for the girls last nightbetween scrubbing the floor and bathing Lilly lol I hope to sew them tonight while the girls are in bed,they have quickly become a favorite in our house!Not only for the girls but for me as well!I love to sew them they are so quick and easy and the girls always look so sweet in them with tights,and they are sooo versatile!

Halloween!

   Halloween was sooooo much fun!
   The girls loved every freaking second of it,and let me tell you they are pretty darn good at conning ppl out of their candy!Some how they brought home about 10lb of this stuff!

   Daisy went as Rapunzel from the movie Tangled

   Lilly went as Dorothy from the Wizard of OZ

   We carved 4 pumpkins then forgot to take pictures lol So I went and snapped a pic of one of them on the porch in the snow,it actually looks quite pretty sitting out there tonight :)

 
   All in all I would say Halloween was a success this year everyone had tons of fun!

Saturday Morning Ramblings

   It has been another busy,busy week.Trying to keep up with everything that is going on around me lol.
   Daisy's big dance performance is coming up next month,so we are trying to keep up with class and practicing at home,She also started attending a children's Bible group once a week,she LOVES it!This week they learned a bible verse,played games,had a snack,colored pictures and planted an Iris for her to bring home and water through the winter.She was soooo excited!
   Lilly has been doing a little better,things seem to be mellowing out for the moment,she has her BIG appointment with an Autism Specialist the beginning of November,so we are looking forward to that,with both excitement and fear.I know no diagnosis will change my daughter or how I feel about her,however knowing the different diagnosis (es) would be beneficial in terms of therapy and possibly future medications.
   We pretty much skipped fall here and went right into winter,several weeks ago we got 4 inches of snow,it didnt last long before it melter but it was fun while it lasted lol
   I have gotten back into the "I hate leaving my house" mode again so I have been getting alot accomplished.I have sewed 5 sweater dresses in the past week for the girls,so they are really excited about them and wear them constantly.I have alot of issues keeping clothes on Lilly especially but with these dresses BOTH girls stay dressed ALL day which is a HUGE accomplishment in my house!
   My computer still will not let me post pictures from my camera which is a huge pain in hte tush,so I have been trying to upload all pictures from my phone but its a pain too lol so Im really sorry about no pictures today,maybe later!
   Hope you all have a blessed weekend!

Fall has Arrived

Lillian

   OK,I have a confession to make.....
   I am a bad mommy....
   After a couple weeks of no paci and Lilly screaming uncontrollably for hours I finally gave her the damn thing back.And guess what? She doesn't want to suck on it,but likes to carry it around in her beloved backpack,but....
   THE SCREAMING HAS NEARLY WENT AWAY!
    I also gave the girls back their TVs.I was desperate for quietness during nap and bedtime.I don't believe any kid should have a TV in their room however the screaming was wearing on my sanity,and I decided if she wants to lay in her room and suck on a paci while she watches a learning show then SO BE IT! lol of course it was only fair to give Daisy hers back too and she has been going to bed quietly each night and both girls have been asleep within 30 minutes. SO,even tho I know this isn't the best solution to our problem it is a temporary fix and has helped me get some much needed quietness and gain a little sanity back before the next wave hits.
   I think all parents,but especially parents of special needs kiddos make compromises and some aren't exactly stellar decisions but they help us and our little ones cope with life and the  situations we have been given.I love both my girls ever so much and there are days I wish things were much,much different,but they aren't and so I have to find ways to work with what we have and make life a better place for everyone involved.

Just a Little Lilly Update

   I took Lilly off of all dairy a week ago,we first decided to try Coconut milk,along with coconut yogurt and veggie cheese,dairy free pizza,etc,etc,you name it we got it to try to make the change a little easier and less noticeable for her.

   Well,she is allergic to the coconut milk and her face broke out in a horrible,hot,red rash and she got terrible diarrhea,coconut milk=no go.I felt so bad for her,she was so miserable.

   So last night we switched back to rice milk,so far so good.

   Her behaviour seems a little better at this point and she doesn't complain that her tummy hurts anymore,so hopefully we are on the right track.

  Today she is happy and delightful,she laid down for a nap quietly and peacefully for the first time in a long time.I have high hopes things will start getting better in the long run.

   She is nearly potty trained,she never has pee accidents (except at bedtime) and wears panties all the time,she does really well going out and about and staying dry.Poo on the other hand,well,lets say she almost has it figured out lol each morning before bath we sit her on the potty (knowing that's when she has a bm daily) and usually she sits until she goes,then she gets lots of praise and lots of stickers to put on her chart.Then again before nap time (a usual time of feces smearing) I put her on the potty and have her sit until she poos again,so far so good.I think it is helping? lol

   However,she will NOT sleep in her bed but chooses to sleep anywhere and everywhere EXCEPT her bed lol she has a beautiful handcrafted log bed my dad built for her but it is untouched :(Not only does she like to sleep in weird places,we have a HUGE routine she has to go thru every night to make her "bed" on the floor(her doctor assumes its due to the severe OCD),its almost comical but can be very frustrating lol like last night  I did it all the way she always wants it,Princess blanket laid out first princess facing West (lol yeah I know) pink minky pillow at top of princesses,woody,baby,kitty,on the left side,goofy on right side,butterfly blanket over pillow,with Garfield next to her.Wrap her up tightly in Dora blanket then she is set,well except she is getting too long to fit in the Dora blankie so her feet stick out then she screams and I have to recover her and wrap her,then her hand sticks out and we start over again,then its something else yet again.Well,anyhow last night I so proudly laid it all out for her while she was going potty,proud of myself that I remembered every long drawn out obsessive compulsive step,I called Nick to come see her perfectly made floor bed and told him"get a good look you may need it one day if I'm gone" Then Lilly comes in.....

   She says"not want it like this" and with one arm scoops my perfectly combobulated mess into a big heap across the floor and says "I sleep here tonight" and threw it all down in a bigger,less organized mess and burrowed down into it.Sigh,so much for learning her technique lol Nick left the room howling with laughter.I gotta say it was pretty funny  and I will not attempt to learn her methods or it will all make me crazy long before I am old :)

   Oh,how I love this little girl,she is so special,but some days I fear for Daisy that she will become a lost child in the midst of all the day to day struggles with her sister,but I am trying so hard to have just special times with her too.Its hard to balance everything out but we are doing the best we can from day to day :)

Tired of Shit,Literally....

   I'm absolutely desperate to figure out a way Lilly cannot get her diaper and clothes off.She is pretty much potty trained with only the occasional accident with poop.However,she will NOT stop pooping and peeing all over the floor in her bedroom! Almost every morning she has done one,the other,or both and I am getting so sick of cleaning up poop off my carpets and walls :( Last week I shampooed her room and redid it a few times ,and since then she has made such a mess of it all again :(
   It is all behavior,I know she can hold it,whenever I go into her room (first thing in morning or nap) she laughs in my face and says proudly "I pooped on your floor" she says it in a high sing song voice like she is trying to torment me!grrrrrr

Lillian Update 2

   I'm exhausted today.Lilly was awake and throwing her first horrendous fit by 7:45 am this morning...Gee,what a way to start the day lol I have no clue what even set her off because she had just woke up and when I opened her door she was screaming,I promptly shut the door and left the room until all was quiet for a good ten minutes.It took her approximately 20 minutes to calm down,when I reentered her room it looked like a tornado had went thru it,completely trashed.I haven't gotten it cleaned up again yet,was saving the task for after nap so if it happens again at least she can have a clean room for the afternoon and evening.
   Last week,I took her tv out of her room,packed up almost all of the toys,took out her dresser and clothes and removed anything she could completely destroy or get hurt on.Of course she has her bed and pillows and blankets,but refuses to sleep in the bed and sleeps on a blanket on the floor,even after I tuck her into her beautiful log bed my dad made for her,with her beautiful handmade kitten quilt with matching pillowcases and curtains I made for her room :( I guess I can take solace in the fact that at least she is sleeping on her kitten quilt on the floor lol
   It makes me so sad to see my little girl such a mess,even now as I'm typing the tears are running down my face because its so hard to see such a perfect child on the outside and wonder what is going on inside,in my mind disabilities such as Autism are so much harder than physical disabilities such as Cerebral Palsy.I have worked with severely physically disabled children since I was 17 years old,and this is by far the hardest child I have ever worked with.Funny how that works beings she is my own biological child whom I love and adore with all my heart.
   I couldn't even begin to imagine my life with out my girls,I would be so lost without them to fill the dull moments in my life.I love them so much,everything about them.I love spending time with them,teaching them different things,taking them to the park,reading stories,praying together,baking together,I even enjoy cleaning their rooms and doing their laundry.Yes,being a mum is definitely the hardest full time job I ever had,but I wouldn't change it for all the money in the world.

Is it Socially Unacceptable?

   I feel like the meanest Mommy in the world.This is a huge battle,is it even worth it? Her teeth are already ruined,and honestly I don't care if a pacifier at 2 1/2 is socially unacceptable or not.
   Lilly's uncontrollable rages are getting worse every day (today I think she has had 4).There is nothing I can do except sit and watch her throwing herself into walls,slamming herself onto the floor and screaming/sobbing (at same time) for no apparent reason!
   Once it was because I woke the girls up from their nap to go to the park this afternoon.
   Once it was because I asked her to go potty before nap,once because I put a clean pull up on her,and the last time I cant even remember.Honestly most of the time by the time she decides to end her fit I cant even remember what set her off,it is getting that bad.
   I have tried to wrap her in her blankie and hold her,she head butts me and tries to slam her head into my face,I have tried to ignore her but she continues,I have put her in time out she just continues and becomes worse,I have put her in on her bed and she trashes her room
   I'm at a loss as what to do,nothing seems to be working and taking her paci away seems to be making it all worse.
   Does anyone have any suggestions?
   Is it really that bad for a 2 1/2 yr old with special needs to have a pacifier 24/7? I hate the darn thing but I'm beginning to hate these rages much more than paci!
   HELP!!!!!!!!!!!!!!!

Bye Bye Pacifier

   I have a confession to make...
   Lilly is 2 1/2 years old and still has a pacifier...well still had a pacifier til this morning.Because I am a lazy mama.I didn't want to her her whine and cry over not having it,I didn't want to see her sad or upset we tried the whole nap time and bedtime only and somehow she still constantly had one in her mouth basically at all times.This morning I was trying to understand something she kept saying and I realized she is lisping really bad even without the paci,I didn't want to be the mean one and take it away, and I can barely even understand her anymore!Blah,we have worked so hard for months getting her speech to where it is Ill be damned if I lose it over a freaking pacifier!
   I went to drastic measures this morning!The girls went through the whole house and a pacifier search,they brought all the pacis they could find and we put them in a bowl together,and I lied to my kid! I told Lilly that there were little baby fairies that needed the pacis way up in the sky and that Tinkerbell was going to come get all the pacis and take them to the baby fairies and Lost Boys way up in the sky.She went along with the plan willingly when after I told her since she was a big girl and gave the babies her pacis we were gonna go big girl shopping for lip gloss and princess high heels,she was all over it!Those are her two loves,lip gloss and high heels (and she owned neither lol)As of tonight she did really well at nap time with no paci and went right to sleep,I was amazed.Tonight she was a little harder to convince but I reminded her Tinkerbell had taken them away while we went big girl shopping (ok,I lied again,they re up in the tippy toppest cupboard,I was scared I would want to give in) and she went to bed and WENT TO SLEEP!!!!yes,she cried and demanded her paci but she fell asleep without it!I so do not feel like giving in anymore!

Lillian Update

   Today is one of those days...
      Today we went to the library and she cried and carried on for most of the time we were there because she didn't want to be in the stroller,and because she didn't want any books.
   Then we went to the park with friends and walked around the lake,Lilly screamed the entire time,I had to carry her the whole way around the lake,and it was one friggin long walk!(I forgot the stroller,but you can  guarantee that wont ever happen again!lol Blah,then I had a fleeting thought of stopping at the liquor store and buying the biggest bottle of vodka I could find and drink my troubles away,then I thought of all the stuff my kids could get into and make a huge mess of and decided that wasn't worth it.So I brought them home and put them to bed.Ahhhh the peace,the quietness of nap time,blissful! lol
   The adapted jammies did NOT work!Lilly still managed to get them off and poop and pee all over her room :( Honestly,when I realized even the jammies weren't gonna work I sat and cried,I sobbed til I felt a calm peace flood over me.I realized no matter what God will not give me more than I can handle.
   Honestly having a child with such complex special needs is so very hard and daily I feel like I'm a bad parent.Daily I feel that somehow it is my fault that Lilly has the issues she has.I feel that somehow I created the mess that we are in,like somehow I could have prevented this,but deep down I know there is nothing I could have done and that now the next step for me is to be able to come to a total peace and calm about Lilly's special needs and keep reading and studying and searching until I find the help my daughter needs.I love Lilly with all my heart and it makes me so sad to see her so miserable all the time.I only wish I knew what she was thinkin,what she is experiencing inside.I wish I somehow knew how to give her peace and happiness,how I could make her sensory and anxiety issues better.I love my kids ever so much and I know full well being a parent is never easy,however being the parent of kids with special needs is even harder.That being said,I want to become an even better,more caring,more intune mother and do my best to be the very very best mum I can be!
 

  

Lilly

    I love Lilly so much but maybe it is time for me to let go of the ideas I have and just try to love her without wanting any kind of love in return.I am crying as I write this because I know full well being a mum isn't easy,but honestly there are days I feel like God gave me way more than I can handle and that He didn't prepare me at all for what he was giving me.Today I feel like I was dropped into all of this not knowing anything,and I am overwhelmed and discouraged.
    Lilly has become so grouchy and mean the past few days,I think the move is taking its toll on her and she isn't coping very well.Both girls have their own rooms now and Nicks mum bought all new bedding and curtains and pillows  so everything is new and poor Lilly doesn't know how to deal with it all.On top of it all she is sick and got a nasty cold and runny nose which isn't helping.
   She has screamed and cried constantly and its getting hard to listen to at times,I have tried everything,I bought new movies,a new toy,everything to try to occupy her time for more than 30 seconds but to no avail.
   Lilly has also started this new high pitched scream/squeal whenever she is upset and truthfully its almost worse than the screaming if you can imagine that lol
   I feel like a really bad mum when I see my child in such a state of misery,I try to comfort her and she head butts me in the face,I try to hold her,she screams,I try to do typical mother/daughter things with her,I do her hair and she just rips it out,I do her nails and she rubs the polish off before its even dry,I take her shopping and she screams nonstop.Its the most frustrating thing to have a child who you love with all your heart who seems to not care if you live or die at only 2 yrs old.
     I need to give Lilly tylenol for her fever,then she is going down for a nap. Daisy is waiting to watch a new movie we bought them and my coffee is brewing.
   As soon as it is quiet I'm going to spend some time in prayer and the Bible begging God for guidance for instructions on how to help my little girl.If you all think about it please throw some prayers out there for us today,it is a really rough one!

Good Day!

   It has been a GREAT day with Lilly! Yay! She has been so good and smiley today and it has given me so much hope that better days are on the horizon!
   Made Spaghetti for dinner tonight and Lilly ate like a champ!
   Here is a pic from this weekend when we went shopping :)

Lilly's Bear

Lilly's New Haircut

   As you can see Lillys hair had actually grown quite long,long enough I could almost braid her little piggytails.I was so excited,extatic at how long and beautiful her hair was getting and then....WHAM!just like that my heart was broken!Daisy found a pair of scissors and in one spare,private moment she CHOPPED off Lillys little piggytails! I was devestated,I cried!And...Im still heartbroken,but even I must admit this is just pretty darn cute too! And I daresay,I think she likes it!!!!

A New Journey

   I took Lilly to the doctor this morning,to see if we could figure out why she has pretty much screamed nonstop since Monday night.Its been a very hard few days!Her doctor really had no answers at this point but needed to make some phone calls To the Children's Hospital to see if he could locate someone who might be able to help,he said dome of her issues sound like they are behavioral,which we already knew,however there are enough problems that sound like maybe Autism or something of that nature,she is definitely NOT a typical child and never has been from the day she was born.Here is a list of her current troubling behaviors
 1.Screaming non-stop for days
 2.Does not sleep hardly ever
 3.Has severe Sensory Integration Issues
 4.Severe Anxiety Issues
 5.Smears feces from her diaper everywhere including on herself
 6.Tunes people out very well to the point I had her hearing tested
 7.Is becoming aggressive (alot of hitting)
 8.Eating Issues
 9.Falls constantly
 10.Bangs her head on the wall
 11.Developmentally delayed
 12.Speech delayed (but has pretty much caught up with therapy)
 13.Terrible temper tantrums
 14.Low blood sugar
   Ok,so thats the ones I can think of right off,I knew the day she was born that something was wrong,her blood sugar was so low and they had trouble bringing it up at birth.when they discharged her at 22 hours old they could not take her blood because she was too dehydrated.At 2 days old we rushed her into the Emergency Room nearly dead,they called the flight team from Denver Childrens Hospital,the weather was so bad they ended coming all the way by ground in an Ambulance,she was hospitalized in Denver for 2 weeks,released with no clue of what had happened to our baby girl.Dec 2009,at 11 months old she completely quit breathing and "died" on my livingroom floor,I remember telling the 911 dispatcher she was dead,and she said "Dont give up!keep doing CPR,the paramedics are almost there!"She started breathing mere seconds before paramedics arrived.She always had what we thought was severe colic and screamed the first 7 months of her life,she refused to let anyone but me hold her,even 22 hr after birth.It has been a really long journey with her the past 2 years but I hope we are one step closer to finding out what is wrong so maybe we can help her to at least become a happy child.
   I signed up for school,however I dont even know now if Im going to go at this point partially because of Lilly partially because we are still waiting to move.I have to think that I am her Mother and there are days I sit and cry because I can hardly handle the screaming and I wonder how a daycare provider would be able to deal with it from a child they only had around to get paid for.Im scared someone else will get frustrated and hurt her,or worse and I know for a fact I wouldnt be able to live with myself if that happened to her.
   Alot of thoughts are swirling thru my head right now,alot of frustration, alot of fears,alot of what ifs,but for nowall I can do is wait for answers.
   On a happier note,Lilly just turned 2 on Monday,we had a fun little birthday party for her,and she got alot of cute gifts.My family celebrated her birthday a couple weeks ago along with my dads birthday and my nephews first birthday,so the birthday cheer was kind of spread thru the month,and it was FUN! Lilly started getting upset when we sang Happy Birthday to her but other than a couple major meltdowns we made it thru!
   Here are a few pics from her party