Thursday, February 3, 2011

Grocery Shopping

   O,how I dread grocery shopping!I tend to put it off as long as possible because I hate it so much!In all honesty Lilly has nearly brought me around to her way of thinking that little children should never leave the home!OK,so not really lol but if she thought I might come around I'm sure she would try even harder!
   As single parent it is HARD going grocery shopping with two little kids(that must remain in the cart due to behavior issues)Our typical grocery shopping trip usually consists of just Walmart,one store,one check out,one unloading of the cart,one stop for pretty much everything we need.However,Lilly HATES Walmart,and every other store in town,so that doesn't help matters any!
  Daisy usually sits in the front seat of the cart where I can keep a close eye on her or she opens every package I put into the cart,she sits on the bread and eats the fruit.Lilly stands in the basket where she can kind of control everything around her,somehow she always feels much more secure in the basket,but riding in the basket has its own set of risks too!Lilly can tell you all about them from the day she fell out,I was so sad for her but after a moment she was OK,and she STILL REFUSES to sit!
  Its almost 11pm,the girls are asleep and I'm sitting here dreading the fact that at some point tomorrow I need to go get groceries lol not that's sad!
  I'm hoping if I dread it long enough and make it to be this huge ugly thing in my mind that I procrastinate about for days that tomorrow when we get home and all the groceries are put away I can say to myself "see that wasn't so bad!so much better than you made it out to be!"
  But for now,I'm going to go to bed and try to get some sleep because I highly doubt my rambling little post is even making sense :)

Unofficial Diagnosis of Autism

   The doctor called this morning,he had been on the phone to different  psychologists out of Washington's Children's Hospital.Lilly's unofficial diagnosis is Autism...
   When the doctor said those words,something inside of me was crushed,something inside of me died.Autism here is a diagnosis of doom,most of the kids I worked with thru the school districts special ed class were Autistic,and let me tell you,it was a  very bad experience that is burned deeply into my mind!For months I have been praying "please God,anything but Autism,you know I'm not cut out to parent with the needs related to Autism,please God heal my daughter!"
   I cried,I went and took a hot shower,I cried some more,I made breakfast,I cried,I did laundry,and cried even more.I cried for myself,I cried that isn't fair,I cried for the dreams I had for my baby,I cried that life is changing in a whole new and scary way.
   Then it hit me.....
   I'm not losing my daughter,in fact,she is still the same sweet baby she always has been.She is still my daughter,she is still the light of my life,just now there is a reason for her weird,quirky behaviors.There is a reason she rages uncontrollably and honestly I'm glad she isn't acting out in these ways because she wants to or because she likes to be miserable.
   Now,that there is a reason for the behaviors there is also a treatment plan already in effect,her doctor is really helping me to get on top of it all,and is trying to help get her sleeping habits under control so that both her and I can get up refreshed in the morning.By the time evening comes around Iam totally exhausted,almost ready to snap.Thegirls go to bed between 7 and 730 EVERY evening,giving me an hour or two to regain my sanity and relax before bed.
  It has been a real fight getting Lilly to eat lately so I have gone to drastic measures lol and they seem to be working!If all else fails TRY SPRINKLES!
Blueberry pancakes with pink sugar and pink hearts were a big hit!
   I did a little sewing today which was very relaxing and now Im in the mood to do more!Maybe I will work on the girls new dresses for a bit?

Wednesday, February 2, 2011

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

Sunday, January 30, 2011

More Sewing

   I have been trying to slip in a little sewing whenever possible.I have several custom orders to complete this week and then I will be free to sew for summer clothes for the girls.So ,here is a pic of their latest dresses.

Sick Again

   I have been totally preoccupied at home with everyone being sick again.So far in past 2 weeks we have had colds,stomach flu AND croup! IT was a little rough for a few days to say the least!Lilly was throwing up everywhere for 12 hours with terrible diarrhea for about 2 days.I had been sick coughing and sore throat for a week before I came down with the flu yesterday.I had been counting hours til bedtime yesterday I was so exhausted and finally I was able to go to bed around 9:30 when about an hour and a half later I heard Daisy coughing,I got up and went in  her room and sure enough she had CROUP! on top of everything else lol so I put her in my bed and we opened the windows all the way and about froze our selves to death(esp me with my fever from the stomach flu lol) but she was finally able to stop coughing and breath.

   Today everyone seems a little better,Lilly still has a really yucky nose and my guess is she is getting a sinus infection,her birthday is tomorrow and she will be 2!I can hardly believe how fast time flies!I guess I need to hurry up and get busy,I still have a birthday dress to sew on time for the birthday dinner tomorrow!