Its a whole new world!

Wednesday was the day to get PP's glasses. I had been fretting the entire week leading up to this day. Was she gonna keep them on her head? I really didn't think so! Regardless of what I thought, I should have reminded myself that PP loves to surprise me. After charming the helpful staff at the optical store, we had the rubbery pink glasses and they were on PP's head! They even stayed on her head! Actually, they are a hit! She loves her glasses, and I couldn't feel better about the decision to get them. I personally think the reason she likes them so much is because she can FINALLY see! Her prescription is worse than mine. That's really bad. I can't see a clock from across the room if I don't have something on my eyes. So her eyes are terrible! Yay for glasses!

Well, at this very moment, I am trying out a new way of blogging. I figured I should get with the times and write on my iPhone! So far, so good!

Happy days and snowball fights! Tis the season! XOXOXO!

Hey, stranger!

The past month has been a roller coaster ride!

I don't know where to start, so I'll go from where I left off. The last entry I wrote was on Oct 17. I had just received a letter saying that PP's health insurance was back in order and things were going very smoothly. School is going great, we added a Speech Therapist to the mix, and we brought her orthotic leg braces into the specialist to adjust them. PP now walks with an orthotic boot that only goes up to her ankle, not her knee. She is allowed a larger range of motion and it forces her to use her own core to balance instead of relying on the brace to hold her leg straight. It's really exciting! The main goal is to get her walking by herself without braces, and through planned adjustments we will chip away at them until they are gone! 

Speech Therapy (ST) is interesting. I am not quite sure where it will take us, but I am excited about it. It seems like PP is concentrating more on walking than talking right now. Kids usually do one big thing at a time, so it's ok for her not to be very interested in it. However, starting this therapy right now is still a good idea. The therapist gives me tips and tools on how to get PP to make different sounds. I like using sign language with PP because it's a very short, basic way of communicating with her, but I know that she understands much more than she can say. When PP starts to walk her attention could switch to talking and I want to be ready to jump on the opportunity to teach her new things when she is ready. It's like doing orientation for a week before you start a new job, it's just stretched out over a few months. It also gives PP time to get to know her therapist, Lauren. She only sees Lauren once a month, but that's also how all of the other teachers started out. Over time, we increased the number of sessions per person every month and so far the system works beautifully. 

Anyways, so she started Speech Therapy. Cool. She's been busy with other things too!

During the week between visits, we focus mostly on the homework given to us by the Physical Therapist. With newly adjusted orthotics we are able to do more walking, so the therapist got a new walker for PP this past Thursday! It's metal, it goes around her back and it has handles on the front. It also has wheels on the front and rubber stoppers on the back. She loves it! PP tells us when she is ready to use it and she likes to use it a lot! It's amazing to see her in such a way, so grown up! I am a very proud momma!

That brings me to the most important thing as of late...PENELOPE IS TWO YEARS OLD! On 11/11/11, my girl turned two. I can't say it enough! It seems unreal! We had a nice, relaxing day. We played lots of games, opened presents, ate lots of cake, and went out for a pizza dinner with the family. I had to postpone her birthday party the following day, 11/12, because I chose to attend a funeral instead. My grandpa passed away from lung cancer and he was a very important person to me. I can celebrate my daughters birthday every day she is alive, but there is not always a chance to get the physical and emotional closure that a funeral can provide. Although it was difficult for me to do, I am very glad I made that decision. I can now celebrate my daughters birthday with a clear head and a happy heart! 

We went through the motions, which were unusually exhausting, to get PP some eyeglasses! She is farsighted and slightly cross-eyed. The glasses are a very flexible plastic with a head band that goes around the back of her head so they (hopefully) stay on. They will be in the store ready for pick up tomorrow, so we will see how that goes!

PP has been showing us more and more of her sassy personality every day! She is two, I am hoping she won't be terrible, but she is very driven and almost never takes 'no' for an answer. If you say no she finds a different way to get what she wants, by doing something that you haven't said no to yet! She's smart, she's sneaky, she's freaking hilarious. PP is giggly, flirty, loves to play games and dance. She is NOT a fan of realistic baby dolls. She's energetic and likes to explore her world.  My little girl is definitely not a baby anymore. That makes me happy and sad at the same time. I always kind of liked the fact that she was developmentally delayed because I got to have a baby for a little longer than most parents. I got to go through the developmental stages at a slower, more relaxed pace. It's nice because when she does something new it doesn't seem so drastic and I have a lot of time to prepare for what comes next. I didn't have to baby proof my house until she was about a year old because that's when she started to crawl! On the other hand, I am definitely ready to raise a toddler. Growing up is such an adventure! 

It has been a topsy-turvy month, but my bunch can handle it! We are family (just like the song says)! The three of us will head-butt and triumph over the obstacles life throws at us! 

So, until next time, sweet kisses and fuzzy feelings! 

Battles and Victories.

After two months of going back and forth with Hennepin County regarding PP's health insurance, I am pleased to announce that her MA case is active (again)! I worked for hours on paperwork and spent many irritating hours on the phone trying to get this done. Finally, all of the medical bills have been re-billed to the insurance company! We will no longer receive ER bills for $2000 (that's only one visit), nor will we get hairy eyeballs from the folks at her pharmacy when I can't pay for her monthly $300 prescription (that's just for one, she had 5 last month). No more bills for various tests and clinic visits. We can bring her in to get a pair of glasses that she's needed for a while. I can schedule her 2 year Well Child Checkup with peace of mind. The amount of medical bills we have accrued in this past month alone is enough to give me an ulcer, but now a heavy yolk has been lifted off of my back. I accomplished a big goal today and I feel very happy about it!

Working with disabled adults and having a Special Needs child has taught me a thing or two about being a good advocate. Being the voice for someone who has trouble expressing their needs, or who is easily taken advantage of, is crucial to their survival. It is especially important to be an advocate when there is an ominous threat that vital services could be/are being taken away. I am proud to be such a person for my daughter. Completing a difficult and lengthly task in itself is immensely rewarding, and having the outcome turn out in my favor makes me literally dance with joy. I am not kidding, I happy danced with PP today when I heard the good news! 

The people in our ECFE class helped me realize that we are not the only family who goes through these types of situations. I consider the Super Parents to be a precious resource in helping me become the best mom and advocate I can be. In spite of all the bureaucratic bullshit we as parents deal with, they've inspired me not to give up, be persistent, be educated on the programs available, and to know the right way of going through the process to get what you and your child need. They have taught me that nothing will ever be handed to you; don't expect anything in return if you aren't willing to work your butt off for it. However, I know this definitely won't be the last time I will have deal with something insanely frustrating. This is true for any parent and it's a very hard lesson to learn. Parenting is, and always will be an uphill battle, but I have more tools in my toolbox now and I feel like I could take on anything.

PS — PP has started to monkey crawl (I think that's what it's called) on her hands and feet with her butt in the air. It's adorable, and it just brings her that much closer to walking! She will be on her own two feet in no time!

Sunny days and safe travels! 

Silver lining.

Blah blah blah crappy clouds.

I had kind of a gloomy day. The sky was grey. It rained. I didn't get to put leaves in the pumpkin garbage bags. I didn't even make cookies, although I had every intention to.  I had a nasty tummy ache for the better part of the day. I'm tired, and I don't even feel like writing this, but I still have a cool story to tell.

PP HAS STARTED TO STAND UP ON HER OWN! YES! *this calls for a chicken dance*

She STOOD UP yesterday for about 5 seconds, and then again at school today! PP doesn't even realize she's doing it. Of course, when she does realize what she's doing, she plops back down on her butt. STILL. I am totally psyched so everyone else should be too.

While I was telling my fellow Super Parent's at school about it, I got all crazy excited. I started giggling about it and thought they were all just going to burst out laughing at me. It was fun! They were excited for me! It's really nice to have other parents around me who empathize with my giggling foolishness. There is a little girl in the class that is about the same age as PP who just started to crawl and stand up. She jumped forward like 3 months in a weeks time! It was a very happy day at school! One person had a birthday, so there was chocolate cake and coffee at 10AM. Yes, these are my kind of people!

So, all in all, I guess today wasn't SO bad. There's your silver lining, I suppose!

PS I also found a link about vesicoureteral reflux! PP has level 2 VUR, and this study proves the problem doesn't carry on into adulthood! Woop woop!
http://news.yahoo.com/kids-urinary-infections-usually-not-kidney-risk-171847180.html

Sweet dreams and cozy toes!

Monday.

Sitting under the windows, eating a bowl of Chex Mix and petting the cross eyed cat feels like a great way to start the week.

Monday is starting to become my favorite day. No obligations, no appointments, no work, just a relaxing day at home. It is weird to think that almost every one else I know dreaded waking up this morning before the sun, kicking themselves to stay awake while they work, trying hard to remember the feeling of the weekend. *tiny violin music plays*

Yes, I slept in this morning. Yes, I watched cartoons and ate Count Chocula all morning with PP. But I was up at 2AM this morning because a certain someone decided it was time to put on an Oscar worthy performance; screaming, crying, even tears. Bravo.
*tiny violin music plays*

Regardless, I have been trying this new thing lately. It's called 'being optimistic.' Its crazy, right? So when I feel pissed about having to pgo to work, or waking up to a screaming child right in the middle of an awesome dream, I just think to myself, "Remember when the cops raided the downstairs neighbors apartment at my old house? I almost shit my pants. This isn't quite as bad as that." There's my optimism.

Happy Monday.

Stand tall!

PP receives home-school services from a program called ECSE (Early Childhood Special Education). It is provided by the MPLS School District. During the week, various people from our team come to the house and play with PP for an hour. We talk a lot about developmental milestones and different ways we can help PP achieve them. That involves various activities, including putting a ball in a shape sorter or drinking from a straw. Every week they give me some sort of homework to do with PP like using her walker and braces or sign language. She's been doing it since she was a little baby!

This weeks therapy was focused on standing up and sign language.

PP's teacher was very impressed by her ability to sign some ASL during a visit! She signed "all done" and "more." We have been working on using signs with PP for a very long time now, since she about 3 months old. Knowing that one of the characteristics of Weaver's syndrome is delayed speech and then slurred speech, I figured I could teach her how to communicate a different way until she can use her words. She likes it! Her vocabulary grows gradually over time, but at this point I can sign simple sentences to her that she understands. ASL is a really valuable tool to our family! 

Who taught Mama Lace, you ask? I work at a group home and one of my clients is deaf. She is one of the coolest people I've ever met and she teaches me new signs all the time! 

Physical therapy is always an interesting visit for PP. The therapist is so good with her, and she does push PP to the limit, but I always look forward to Thursdays! This week, PP is supposed to work on using her walker outside! We took it for a spin this week, and PP loved it, so that's what we will work on until the next Thursday rolls along! 

Times UP!

Happy travels!

Onward and upward.

It all started on Friday, as most weekends do, and we were still wondering what was going on with PP. She spent the past week going in and out of the hospital for a fever and some sort of skin rash. Many tests were run to rule out different kinds of bacterial infections. After all the tests were sent to the lab, we got a call from her doctor saying that one of the blood tests came back positive. It turned out to be the bacteria that the doctor felt was a bit of a long shot, but they might as well test for it and try to rule it out. Am I surprised? Nope! Can I remember the name of the bacteria? Nope! Is PP on another antibiotic? Yes! That's really all I care about. The rash is gone, and she is not showing any signs of discomfort. Back to square one on this lovely Monday. I hope this week goes smoothly.

Mystery: SOLVED!


I want to start the week with a few silly facts about PP:

• PP loves anything that has to do with string. She will chew on it, nearly swallow it, put it in between her toes, put it on her head, carry the slobbery string all over the house...freaking loves it. 
• Cell phones are an obsession. If she sees one you'd better be prepared to give it to her, and let her explore it with her mouth, or face the wrath of PP. 
• Cats and dogs are exhilarating. Whenever she sees an animal she lunges at them while laughing, screaming her head off and pointing. It's priceless. 
• PP has orthotic braces that support her lower legs and ankles when she walks. She doesn't walk on her own so we make special time during the day to practice using the braces. She likes doing this because she can get to all the things that are unreachable while crawling. She also loves to run in them! I have a sneaking suspicion that PP will run before she walks, just because it's the opposite of what she is supposed to do! As her Physical Therapist would say, "Any kind of independent mobility is GOOD mobility." So I don't care what order she does things in, I just have to help her along in any way that I can. 

My 15-minute time limit is up! The cat is meowing incessantly, and PP is ransacking the kitchen. I think they want breakfast now. Au revoir!