Thursday, July 31, 2008

The dog days of summer

Princess Bear & I have been laying rather low lately. Its been hot as all get out here and with her inability to regulate her body temperature we've spent very little time outside. She has been getting in a fair amount of swimming. I think the child is part fish. The other part is obviously imp. I was rudely awakened at 6:45am (ok...I might have dealt better if I would have gone to sleep before 4am!) to my mom demanding that I find my dad's black shoes.....huh?!!!? Too caffeine... does not compute! I searched high and low as did my dad. No where to be found. PB wakes up an hour later and is her usual zombie like self for about a 1/2 hour. Then she perks up a bit and wants to play. My reaction was ok....after you show me where Dzadza's shoes are! She immediately points to this stool that is hollow with a removable top. I open it up and sure enough there are the shoes! I could have screamed! I had PB call my dad at work and she apologized and then handed me the phone. He asked where they were and I told him...he was roaring! UGH! I guess I'll understand when I'm a grandparent!

HM Sarah Siggy

Sunday, July 27, 2008

Still Alive! :)

HI! Sorry I haven't posted in so long. On Thursday night Princess Bear (PB) had a major allergy attack and was coughing A LOT in her sleep. Since she has a tendency to choke I was sticking close to her. Friday was our appointment in Chicago. It was the first trip that PB & I took with just my dad (usually my mom joins us). It definitely made for a different dynamic to be sure! The appointment wasn't until 2:20 so we didn't leave home until around 10. We stopped at a rest stop about an hour and a half from Peoria. We ate lunch and let PB play on the playground for a few minutes. She was so tickled to be eating outside. The rest stop is right next to some big fields and there was a plane flying overhead and PB loves any sort of air transportation! The playground was big fun too since she doesn't get to play on them much since she tends to overheat so quickly. We then hit the road again and got into Chicago and to the hospital about 20 minutes before our appointment. Google Maps gave us new directions and my dad decided to go with it. I found so many things I didn't know were so near! A Whole Foods! A Carters store, an Ulta (I LOVE Ulta!!!) and a Betsey Johnson boutique. PB has had some really cute stuff from her kids line! I was so excited. Unfortunately we didn't have time to stop before the appointment and after the appointment we were heading in the opposite direction. At least I know where these things are!!!

The appointment went very well! I love our Dr's nurse. She knows that I was very frustrated and made sure to sit in on the appointment so all of my questions would be answered. As it stands now PB's next surgery will be sometime between the ages of 7.5 and 9 years old. The Dr would like to wait as close to 9 as possible since it gives more time for growth and bone to become firm. Hopefully she won't keep growing at such a rapid pace or the endocrinologist can help out with that in some way. The Dr also wants the surgery to be PB's decision. This next surgery is to reshape her eye orbits and bring her eyes in closer together. The Dr feels that this surgery is more elective than the one she has had and others that are totally necessary. I don't know if a 9 year old is able to fully comprehend that kind of decision. I hate that kids have on several occasions looked at her and asked what was wrong with her. By the grace of G-d PB truly has no idea that she looks different or has any differences. I'm so thankful that she is so happy and well adjusted I can't even begin to describe it. I also don't want her to be a victim of ridicule for her life. How do you decide to do "elective" surgery that would be for the child's greater good as far as self esteem or not do the surgery and hope they are strong enough to deal with the teasing of others? Man I'm so glad that I have a lot of time before I have to deal with this.

After the Dr's appointment my dad had to take PB past Wrigley since there was a game going on. Since my parents first apartment was near there he showed us that. Then it was off to run a few errands. PB was in the backseat piping up every couple of minutes that she wanted a hot dog. Well, there isn't a better city in the world, other than Chicago to get a hot dog. We stopped in one of the cities many many hot dog/ burger/ gyro eateries. PB got her ketchup only dog while my dad and I made like true Chicagoans and had ours walked through the garden. After that my dad wanted to go by the cemetery to check on his grandfathers plot. Most of my dads family who has passed on is in this particular cemetery. We got there and found the section. We also found out that most of the markers were gone. After searching for awhile and reprimanding PB for removing pinwheels from someones flowers we decided that we'd try again on another trip when the office was open. After that we had to head over to Minelli Bros Deli before they closed. If you live around Chicago check it out...they have the most amazing canolli (?) in the world. PB has decided she likes "Nolli's" a lot. She won't eat the shell. She sticks her fingers in and gets out the filling and goes to town. It was a bit entertaining and entirely too messy! After that we headed home. My dad disregarded my warning that it was Friday and traffic would be horrible. Sure enough the minute we got on 55 it was like a parking lot. The entire length of 55!!!!!!!!!!!!! Princess Bear had a total and complete meltdown. I felt so bad for my baby. She was so tired and just wanted to be held. We finally got back into town just before 10pm. Most definitely a long day. Yesterday was major running around and doing errands with my parents. Today was Church and family brunch. My nephew is getting so darn big! Then PB and I spent the rest of the afternoon prepping the pool and attempting to fill it. After about 2 hours of filling its still only about half full. Tomorrow is PB's first speech session since Miss Deb's daughter passed. I'm so glad that we'll see Deb just to see how she's holding up. I'm dreading it though because we love Deb so much and feel so bad for her loss. Anyway, that is the check in from this side.

HM Sarah Siggy

Wednesday, July 23, 2008

Life without enough caffeine is just not fun!


For some unknown reason I'm trying to limit my caffeine intake as well as take the second med my Dr. has prescribed which also helps me sleep (a HUGE plus!) Caffeine is a very near and dear friend. I've been trying to keep it to one can of soda and one mug of tea per day. Can I just say............. THIS SUCKS!!!! :) Ok I'm done with that one.

Life here has been its usual interesting status quo. One of the reasons I never really made any big attempt at getting my room cleaned is because I wondered what excuse my mom would come up with then to kick us out. At least with the room I was dealing with something I was used to. I'm not a big fan of the unknown. On Sunday night my mom had a MAJOR meltdown. My dad went and hid in his room (Just once I'd like to see him stand up to her or defend me) so I was on my own. At one point I pointed out that my mom was being totally unreasonable. She agreed and then went on to say that she didn't care. I just had to deal with it. Its times like that I ponder why I'm the one in therapy and on meds. Then I remind myself that I don't want to be her and repeat patterns.

Yesterday I took Princess Bear (PB) to a drive in restaurant here in town. She gets such a kick out of dinner being served in the car. She just loves it! I've been trying really hard to have some very solid quality time with her on a daily basis. She's such a strong willed spirited child that there are times I feel like I'm constantly yelling at her or she's in perpetual time out. I'm trying to equal things out a bit. I'm also putting some major consideration into eliminating HFCS from her diet. She had a hot dog, fries and sprite at dinner last night. She was beyond off the wall. If it isn't dietary I really don't know what else it could be!

Now that my room is clean I'm getting ready to start preparing for Christmas. I'm making Christmas planners for myself, my sister and my next door neighbor Mary Jean. I'm also gearing up to start creating soon. Bows, bracelets and socks here I come! I'm thinking of reopening my webstore and opening an etsy shop as well! For those of you who haven't seen my bracelets here are some:

I'm feel all sorts of creative lately! I just need to do some more organizing and then get a move on!

HM Sarah Siggy

Monday, July 21, 2008

Just how stressed out do you think I can get by Friday?

I am one of those people that is just a natural born worrier. Can't help it; its just who I am. In some ways its miraculous that I've never developed an ulcer or anything along those lines. One of the things I tend to do when dealing with Princess Bear (PB) and her health issues is not to deal. If you can put things off (if they can be but off without harming her obviously) then I'm all for it. Its a great defense mechanism. Unfortunately all good things must come to an end and many of my avoidance issues are coming front and center at the same time. I'm beginning to feel like I'm on an out of control roller coaster. I called PB's plastic surgeon this morning thinking that we'd get an appointment sometime within the next couple of months. Yeah does this Friday sound? AAAAAAUUUUUUUUUUUUUUUGGGGGHHHHHHHHHHH!!!! I instantly said no but was then told that the Dr was going to be gone for all of August and then they had no idea when we'd be able to get an appointment. Since we have to drive to Chicago (approximately a 3 hour ride) it seems more prudent to do it now than in potentially bad weather. Maybe this is better but I'm in full on panic mode.

I guess you need a bit more background for any of this to make sense. PB was born with something called bi coronal craniosynostosis. What this means is that 2 of her soft spots were already fused at birth. Bi coronal cranio is one of the whose to have because it involves both coronal sutures and can seriously affect the way the skull and brain can and do form. Not surprisingly when you affect the way the brain forms you can have a lot of secondary health issues which PB does. It was known from the night that PB was born that something was wrong and within the first 5 days she had a CT scan and an MRI as well as a plethora of other testing. Our first trip to Children's Memorial Hospital in Chicago was when PB was 2 1/2 weeks old. (My dad felt it was necessary to introduce PB to some Chicagoland staples and drove her by Wrigley Field and we had to eat at Malnati's) We meet with a plastic surgeon on that trip since a plastic surgeon is actually the Dr doing most of the work. The neurosurgeon is a very important part of the team but in the long run there is actually more plastics work done. We really liked the Dr and he seemed to understand our fears and answer all of our questions and put us at ease. PB had her first major surgery at 7 1/2 months of age. The surgery was over 6 hours long (and we drove through a blizzard to get to Chicago...what a long long long 24 hours!). Now I'm sure that there is nothing that Drs can do to prepare you for what your child will look like after this kind of surgery (the incision is literally from ear to ear as the entire skull is opened up and reshaped) but I was still sorely unprepared. My daughter was completely unrecognizable for several days. To the point that my parents didn't recognize her without me by her (because she literally could not tolerate to be held for the first 2 1/2 days). The plastics Dr and the Neurosurgeon were both great but frankly the neurosurgeon was the voice of reason during the whole hospital stay. PB had a few complications but was released on Sun (surgery was Tues). During that time if I wasn't in love with Children's Memorial at the onset I was by the time I walked out the doors. I literally spent every moment in the hospital and for the most part the nurses were beyond amazing. (We had a problem with PB day nurse who didn't want to administer morphine. I understand the risks but I also understand that my child just had her head cracked open and was in huge pain and was still refusing to eat 2 1/2 days in). The other nurses were truly angels on earth! I got sick while we were there and I'm a big tea drinker as it is but even more so when I'm sick. The only times I was leaving PB was to use the bathroom, to order meals to be brought up to the room and to get hot water for tea. One of our night nurses was so kind and started bringing me tea bags from home! How nice is that?!!!? She also would make sure that I knew what was going on with PB at all times. Then there was nurse Rae...truly a remarkable woman. Kids loved her and she loved them! By Saturday I was just beyond exhausted. Anyone who has spent time in the hospital with a child knows that sleep isn't a real option. As I mentioned earlier PB couldn't tolerate being held for the first 2 1/2 days after that she didn't want to be put down and mommy's arms were the best. Her eyes were swollen shut until Saturday evening when little slits were opened. Well by Saturday I was among the living dead. Nurse Rae put PB in a stroller and told me to take a shower and a nap. She took PB on her rounds with her and then kept her at the desk with her for a bit. I cannot tell anyone how much that bit of downtime revived me.

Children's Memorial also does really nice things like having a massage therapist come in once a week for the parents!!!! How awesome is that? You get a 1/2 hour massage for free! A cart is brought around every morning and a volunteer gives you coffee, tea or hot cocoa and a magazine or paper. You can go to the cafeteria every few days and order meals to be brought up to your child's room for just a few dollars a meal. I would go down around midnight and place orders for 2 days at a time. PB was sleeping and it gave me a few minutes to stretch my legs! Everyone working there from the custodial staff, to the cafeteria workers, volunteers, nurses and Drs are NICE! Its almost amazing when you consider the number of people you deal with and its always pleasant! Something you don't always expect in Chicago! (I love the city but you don't always associate it with friendly!)

Why am I telling you all of this? To set the background. I felt very comfortable having PB having surgery at Children's. Then her Dr. started to work at Shriners also. PLEASE DON"T THINK I'M KNOCKING SHRINERS! Its an awesome hospital as well and does a lot of very very valuable work. I just don't feel comfortable having my daughter have major surgery there. I told her Dr. that we could do her yearly visits there but no surgery. He was ok with that so we tried that route for awhile. The next problem we had was that our Dr. didn't want to answer any questions. Now I'm a worrier and I know this but I also want to know what I can expect for the next few years of my daughters life. Whenever I asked questions about the future and what he expected he would just say its years away don't worry. Sorry that just doesn't work for me. So I meet with another plastic surgeon in Chicago. I really liked him but it wasn't Children's. I've been hemming and hawing (?) about what to do. I guess I'll have a much better idea after this Friday. Its time for the Dr to give me some idea on what to expect. I know that Drs are also fearful of lawsuits but I still want to have some idea of what to expect. It might be nice to have some idea of when my daughter next major surgery is expected to be.

I'm sorry....I'm sure that this is very long, drawn out and doesn't make much sense. I must say that it helped me calm down a bit to just lay it all out there. I can't change anything and know I shouldn't borrow trouble so I guess I'll just enjoy this week with PB and go into the Drs with a list of questions and walk out with answers either way. Now its time for a shower, a cup of tea and bed!

HM Sarah Siggy

Saturday, July 19, 2008

Is is a good idea to trash a lot of my things & then leave town & leave your Discover Card with me?!!? :)

Ok...long story short. My room is clean but my mom went psycho in it yesterday. I am one of those very into makeup & my nails people. Don't have nearly the time I used to but still try! Anyway my mom trashed my makeup & nail polishes yesterday. If anyone is living in Central IL I can give you directions to my house...grab any of the garbage bags on trash'll be like hitting a jackpot! I'm pretty brain dead after the all out with my mom but life will go on. My room & Princess Bears (PB) room are clean so I guess my mom will have to think of some other reasons to kick us out!

On a totally different note PB found the Easter Seals fundraising video from last year...she's in it & loves to watch herself! Not vain or anything! The cool thing is they her segments were taped in a speech therapy session with Miss Deb. They were playing with some cars and PB came out with such a clear "GO" they included voice in the video for the first time ever! They also used audio for another kiddo! I really can't tell you want a difference Easter Seals has made in our lives! It used to be that I felt we were living there. PB was in feeding, ot, pt, speech, behavior & lekotech therapies. She's graduated out of everything but speech (she gets ot, pt & speech at school but speech is the only one she needs the backup on at this point!). Here is a link to the video. What do you think of PB with short hair? My mom and neighbor want me to cut it so its just a cap of curls again.

Wednesday, July 16, 2008

It's a good thing she's so cute!


Ok I've got to say that G-d clearly knew what he was doing when making babies and kids cuter than all get out! My child has spent this week testing my limits and giving me more new gray hair than I thought possible in one week!

Now my mom left on Sunday for Miami. This should have been a wonderful laid back week! The only thing to put a damper on things is my moms declaration of anything not "done" in my room is getting thrown out on Friday. Ok, fair enough! So looking forward to being able to just chill a bit was seriously waylaid by my gorgeous daughter. I swear that talking to a wall would get better results. She is doing things she clearly knows better than. Its making me crazy. I'm about 2 seconds from crawling into bed and staying there! Now I know that Princess Bear (PB) has some issues but this is ridiculous! I'm at my wits end and really don't know how to deal with it anymore. My child would spend her life in time out if I go that route. I'm reading Raising the Spirited Child (this woman met my kid before she wrote the books!!!!!!!!!!!!!!!!!!!!!!!!!). Even things that are for her well being and safety she disregards. I'm at the shoot me now or send the kid to the moon impasse. Please tell me that this happens to all moms. How do you deal with it?!!!?

HM Sarah Siggy

Friday, July 11, 2008


Thanks to my online blogging friend Heather I've copied this (except for answers of course!) lock, stock & barrel! Happy Friday y'all!

Yes! Check this out; my maternal grandmother was named Sarah which she disliked so much because there were too many Sarah's back in her day that she legally changed it to Shirlee. Then I'm born and my mom saddled me with Sarah (I was supposed to be Jordana (pronounced Jordonna) but at the last minute my dad convinced my mom that everyone would call me Donna & my mom had a real dislike of someone named Donna so here we are!). Rose my middle name is my paternal great grandmother.

Surprisingly its been awhile!

Yes, when my wrist is cooperating! I've been told its too girly though. Having nice writing is not a good thing...I was the lucky one who got to address all of my sisters wedding invitations!

Bourbon chicken...yum!

1 daughter


Who me?!!? No way!

No! It was part of my moms diabolical plot to never go out on New Years Eve in college

It depends, in theory I'm great with the concept. I have a thing though where I get physically sick at heights. So if I could get up high enough without getting sick it would be game on!

Raisin Bran Crunch

Seeing as I wear Crocs or birks most of the time no laces involved! For my Docs I unlace just because I tend to baby my crocs

Emotionally it varies. I'm told I am but I don't always buy in on that theory. Physically yes.

13. WHAT IS YOUR FAVORITE ICE CREAM? Mint chocolate chip, pralines n cream or peppermint (can you tell I'm not good with choices?)


depends! Are we talking lipstick, nailpolish, clothes or room color?!!?

I'm not organized

Old friends

18. WHAT COLOR SHOES ARE YOU WEARING? No shoes...I always go barefoot in the summer.

hot pocket cheese egg & bacon. Wanted to make pecan pie muffins but we're out of eggs!

TV, Princess Bear has a CD playing in the kitchen and someone is mowing the lawn outside

21. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Periwinkle. LOVE IT! There is a house here in town that is white with periwinkle ornate shutters I've loved it since I was little!

Vanilla, Christmasy (esp Yankee home for the holidays) & lavender

My mom (checking on my back to see if I was mobile!)

Seems very nice & she is clearly intelligent and shares her knowledge!

NFL. Die hard Bears fan

26. Hair Color?

hazel All over the place. Green, brown, bluish, amber

not lately (they screwed up the scrip for the left eye so I need to get new ones)

Seafood Casino. Unfortunately Basta doesn't serve it anymore & I can't find a similar recipe!

Happy endings.

Don't remember!

black pj top (I'm bumming it today!)


Depends on who & when

pecan pie

The Strong willed child

Some company my dad deals with

Misc sitcoms on lifetime

My daughter

If I have to pick I guess the beatles

Don't know! I'd have to dig out my map. Either my trip through the soutwest or Niagra falls


Now, I'd love to see your answers. Post a comment if you're participating, so I can come by and read all about you.

HM Sarah Siggy

Tuesday, July 8, 2008

Checking In

Wow! Once again I've fallen off the face of the earth! Sorry about that! All sorts of things going on with Princess Bear (PB) and my family in general. We went to my sisters on the 3rd and did fireworks so we tried them again on the 4th. PB was way more interested in playing. She couldn't have cared less! We spent more time this weekend cleaning out our attic. We need to just rent a dumpster and start chucking things in there!!!

Princess Bear started breaking out with a weird rash and her oh too regular hives on the 4th so things have been interesting to say the least. She literally has been asking for the pink medicine (Benedryl). My poor kiddo. We are having a really really BIG problem with her listening to any of us so we're doing some tough love. If she doesn't listen we're done doing whatever it is that we're doing. Well, today I tried going to the grocery store with her. I said she could ride in a car cart or help me push. PB doesn't want to help push she wants to do it all herself. Nope not unless I'm trying to turn the store into a demolition derby. I gave her one warning and it didn't work so I picked her up and left. PB raised holy heck and a woman thought I was hurting her....UGH!!!!

I also found out today that Miss Deb, our beloved speech therapist for PB, lost her daughter on the 1st. I feel so bad for her. I truly cannot imagine burying my child no matter what their age. I also feel bad because I did not know and consequently didn't attend the funeral. Heather was such a joyous person and the world is a much sadder place without her. My heart goes out to Deb.

HM Sarah Siggy

Friday, July 4, 2008

Happy 4th!



Have a wonderful, safe Holiday!

Thursday, July 3, 2008

Ever feel like you're living Groundhog Day?


I'm aware that one of the constants in my blog is the issues surrounding getting the house clean. I don't remember how much detail I went into about my parents going through Princess Bears (PB) room with garbage bags a few months bag but although traumatic for all parties it really did do the trick. It's pretty easy to whip her room into shape. Unfortunately there are still a few problems. The same day that the great garbage detail happened my parents moved about 75% of PBs toys from the family room into her room and that definitely makes it a bit more challenging to keep up. Also I think my parents forget that its a 5 year olds room. She plays A LOT! Unfortunately picking up isn't not her strong suit. Now I won't lie and say that from time to time I slip up and don't go in there and straighten up but it does get taken care of. Last night was one of those nights. I went in and did a pretty good job getting things squared away. Then today rolled around and while I was cleaning in my room PB was playing/performing the role of Captain Destructo to the hilt. We ran out of time before we had to head out for the fireworks (which is a whole different blog. So much fun to see her enjoy it!). We didn't get home until 10pm which is way past her bedtime. PB knew that she had to pick up so we agreed to do it tomorrow. Enter my mom having a fit about the condition of her room. I must also say that the "deal" has been that I have to have it so her room can be picked up in 15 minutes. Fair enough. Tonight it took 20 but I still think that's doable. Here are some pics of before and after. What do you think? Please give me your honest opinions. I know that before is pretty awful but after looks ok, right? Is 20 minutes fair? I just feel like I'm fighting a battle that I won't be able to win no matter what.





HM Sarah Siggy

Wednesday, July 2, 2008

The best made plans.....


Well, I decided it was time for a parenting time out today. We have this great place here in town through the Crittendon Centers called the Crisis Nursery. They provide parenting time outs. Basically you call the day before and say you'd like to bring your child in for X amount of time. Its basically set up like a day care with lots of workers and structured activities. I've been letting Princess Bear go about every other week. This is our own down time away from each other since she's not in school right now. She really likes being around other kids and I really like having some free time! Win win all the way around! Unfortunately it seems that on these days I spend lots of time cramming in as many errands as possible so I don't have to drag PB out (her sensory issues have gotten really bad in stores...way too much stimulation). From the time I dropped her off until my parents brought her home I was on the go. It was absolutely wonderful to go to so many places and get so much accomplished with ease. No fighting about seat belts or riding or not riding in the cart! I have decided the next time PB goes I'm having a total me day. Maybe lunch with a friend or just a nap.

I've got almost everything ready to put the pool up. My dad is still trying to decide where he wants it. It was HOT today. I wish we'd get the ball rolling on this! Then again welcome to Illinois it was low 90's today and we're expecting low 70's tomorrow!

Well that is the run down here! I'm off to do some more laundry and then SLEEP! Do you have any exciting plans for the 4th of July?!!!?

HM Sarah Siggy