PP did so many wonderful things today! She signed "open" for the first time at Speech Therapy at Children's! It was monumental! A little while after that, when the therapist asked PP to point to her mouth while showing her what to do, PP pointed to her own mouth and made a "mmm" sound. This is also very big! She is imitating the action while making a deliberate, consonant sound. Consonants are a harder sound to make so I can see that she is gaining strength in her face. She will be able to move her muscles the way she wants them to, eventually. It all takes lots of practice. I have been using sign language with PP since she was a tiny baby, and she is just recently able to sign back to me. We have always practiced daily (slightly obsessively) to keep things progressing and to keep challenging PP.
We have even started to do back to back therapies. Days like today, when we have two therapies in one day, our schedule runs very tight. It is hard for PP to get on track some days, but she seems to do very well when we have a busy day. I can tell she gets tired, but I know how much I can push her until she becomes Crazy Child. Days like today can make her CC. The ones where we have three therapies are even worse, though they are few and far between.
Today, we got out the door late, but made it to ST at Children's on time! Don't ask me how that happened! Therapy went very well today, and when we got home it was about ten after eleven. Oh man! Laura, the Speech Therapist from the school, was coming at noon! I needed to get some chores done and start some lunch! I did it, even though I had a certain someone clinging to my leg the entire time. With lots of coffee, I am so awesome at time management. The two of us were sitting calmly at the table eating our PB-n-J's when Laura arrived. During lunch, Laura and I talked about the different things that PP has been doing the past month, periodically stopping our conversation to admire something about PP. Even if she can't talk, PP is a very social girl. She likes to feel included in the conversation.
Anyways, during Laura's visit PP signed "help" and "go" for the first time! I was astounded. Seriously, little girl, four milestones in one day?! Heck yes! I am so proud of her! Now that she has mastered walking, she will master communication. This process will take a long time, or so I've been told. We will see what PP wants to do!
She is snoozing now, what a little sugar dumpling!
Cocoa and Cookies
XoX
Momma Lace thinks her little bug is SO cool, she wants to tell the world about it! Penelope has a rare genetic disorder, Weaver Syndrome, which makes life a bit different for her family...here's our story!
Thursday, May 24, 2012
Wednesday, May 23, 2012
Hello, Goodbye.
What an eventful spring!
First of all, I completed spring semester at MCTC with a 3.6 GPA! Wahoo! I am so proud of myself, just had to brag a bit :)
My lil PP is even MORE to brag about! She is becoming an expert walker! She can manage moderately uneven surfaces, which is huge! She can walk all over the yard, step over small bumps (uneven sidewalks, area rugs, etc.) and she can step sideways to avoid walking on something that will make her trip. She doesn't always watch where she is going, or control the speed of her walking, but I am always hovering! Hah! She expects people to catch her when she falls and will sometimes do it on purpose, we call it checking in. It's like consistently needing the intense sensation of a Trust Fall. Physical contact is very important to becoming a friend of PP. The more physical you get with her, the more she will like you. So, I should be flattered when she head-butts my throat, right? Ouch! Teaching a two year old to be gentle through sign language and positive reinforcement is hard.
There are funny sides to this physical contact infatuation! Going upstairs is a gas; she will rest her head in my lap as we are walking up the stairs, then kick her legs out "Liu Kang Bicycle Kick" style. She loves to hold my hand. If her mood is right, she gives me hugs and kisses. She likes to jump on the bed with me. Being PP's momma is really, really fun!
People LOVE PP! She is so shy, and it just makes people want to say hello and complement her glasses. She will still flirt with strangers if she's feeling particularly sassy that day. We have been making a point to get her out into public places to help her become more at ease with new surroundings and strangers, but she get's overwhelmed quickly. She used to fuss and cry and throw her head around if we went into a store, now she sits calmly in the cart for a little bit. She is shy for the most part. She's so cute when she is shy! She will put her head down, but still look out from under her hair with a smile on her face. PP is a shy-flirt.
A new and exciting area of development we are getting into is pretend play. It is so FUN! We have tea parties, we feed the dinosaurs, we kiss and hug sock monkeys, we rock out when a good song is on and we lay on the lawn to point at the sky. I always talk about the differently shaped clouds even if there aren't any. PP is a girly little girl, with her jingly bracelets, pink princess purse, and dress up sessions!
Our first Urology appointment is next week, the 30th. I am nervous and curious about what they will say. PP could just change to a different medication, or she could need surgery. EEEK! Keep those fingers crossed for us.
We are heading into the end of the semester at school, and today was our last day at ECFE for the summer. I am sad, I will miss the teachers, but the families are planning on keeping a regular play date to keep in touch and keep supporting one another. I am so grateful for the parents of Special Friends. They are such an amazing group of people. The teachers who visit PP will also be changing because some of PP's teachers don't work through the summer.
Next fall, we will prepare for PP to enter pre-school. I am excited and anxious for this new phase! The teachers and I talk about next steps when we come within a few months of achieving preset goals from the beginning of the year, pre-school is on the horizon. PP will be able to enter school when she turns 3 in November. She will leave the house on a bus, without me, go for a few hours for however many days a week the teachers and I think is appropriate. By that time we will have a PCA to help out as well, so our lives will change dramatically in the next few months. These are very positive changes for our family! We are growing and changing just like we are supposed to.
An unforeseen change for next year is the deletion of the Service Coordinator position, which means we lose Stephanie. Yeah, I am losing my inside link to HC, and it sucks. I am really pissed off actually. It's back to the drawing board to find a new person to help me on a regular basis within the county. It is possible, but it takes a lot more work than dealing with Stephanie alone. At least I finally have the fiasco with HC straightened out for the time being! It turns out that PP wasn't actually Certified Disabled yet, the approval for the TEFRA program would provide us with that disability status. Thankfully it is all squared away! Now I can move on to the next (more fun) stage of getting different services for PP as she grows up.
There will always be ups and downs. I do have my bad days when I hit a road block, but I have way more good days that make me jump over those obstacles. I set goals and make a point to get them done and it is very rewarding. I am so happy with the way things are going! I finally feel like I've reached light at the end of the tunnel, and by this time next year life will be even better! Wahoo!
Strawberry Fields Forever
XoX
First of all, I completed spring semester at MCTC with a 3.6 GPA! Wahoo! I am so proud of myself, just had to brag a bit :)
My lil PP is even MORE to brag about! She is becoming an expert walker! She can manage moderately uneven surfaces, which is huge! She can walk all over the yard, step over small bumps (uneven sidewalks, area rugs, etc.) and she can step sideways to avoid walking on something that will make her trip. She doesn't always watch where she is going, or control the speed of her walking, but I am always hovering! Hah! She expects people to catch her when she falls and will sometimes do it on purpose, we call it checking in. It's like consistently needing the intense sensation of a Trust Fall. Physical contact is very important to becoming a friend of PP. The more physical you get with her, the more she will like you. So, I should be flattered when she head-butts my throat, right? Ouch! Teaching a two year old to be gentle through sign language and positive reinforcement is hard.
There are funny sides to this physical contact infatuation! Going upstairs is a gas; she will rest her head in my lap as we are walking up the stairs, then kick her legs out "Liu Kang Bicycle Kick" style. She loves to hold my hand. If her mood is right, she gives me hugs and kisses. She likes to jump on the bed with me. Being PP's momma is really, really fun!
People LOVE PP! She is so shy, and it just makes people want to say hello and complement her glasses. She will still flirt with strangers if she's feeling particularly sassy that day. We have been making a point to get her out into public places to help her become more at ease with new surroundings and strangers, but she get's overwhelmed quickly. She used to fuss and cry and throw her head around if we went into a store, now she sits calmly in the cart for a little bit. She is shy for the most part. She's so cute when she is shy! She will put her head down, but still look out from under her hair with a smile on her face. PP is a shy-flirt.
A new and exciting area of development we are getting into is pretend play. It is so FUN! We have tea parties, we feed the dinosaurs, we kiss and hug sock monkeys, we rock out when a good song is on and we lay on the lawn to point at the sky. I always talk about the differently shaped clouds even if there aren't any. PP is a girly little girl, with her jingly bracelets, pink princess purse, and dress up sessions!
Our first Urology appointment is next week, the 30th. I am nervous and curious about what they will say. PP could just change to a different medication, or she could need surgery. EEEK! Keep those fingers crossed for us.
We are heading into the end of the semester at school, and today was our last day at ECFE for the summer. I am sad, I will miss the teachers, but the families are planning on keeping a regular play date to keep in touch and keep supporting one another. I am so grateful for the parents of Special Friends. They are such an amazing group of people. The teachers who visit PP will also be changing because some of PP's teachers don't work through the summer.
Next fall, we will prepare for PP to enter pre-school. I am excited and anxious for this new phase! The teachers and I talk about next steps when we come within a few months of achieving preset goals from the beginning of the year, pre-school is on the horizon. PP will be able to enter school when she turns 3 in November. She will leave the house on a bus, without me, go for a few hours for however many days a week the teachers and I think is appropriate. By that time we will have a PCA to help out as well, so our lives will change dramatically in the next few months. These are very positive changes for our family! We are growing and changing just like we are supposed to.
An unforeseen change for next year is the deletion of the Service Coordinator position, which means we lose Stephanie. Yeah, I am losing my inside link to HC, and it sucks. I am really pissed off actually. It's back to the drawing board to find a new person to help me on a regular basis within the county. It is possible, but it takes a lot more work than dealing with Stephanie alone. At least I finally have the fiasco with HC straightened out for the time being! It turns out that PP wasn't actually Certified Disabled yet, the approval for the TEFRA program would provide us with that disability status. Thankfully it is all squared away! Now I can move on to the next (more fun) stage of getting different services for PP as she grows up.
There will always be ups and downs. I do have my bad days when I hit a road block, but I have way more good days that make me jump over those obstacles. I set goals and make a point to get them done and it is very rewarding. I am so happy with the way things are going! I finally feel like I've reached light at the end of the tunnel, and by this time next year life will be even better! Wahoo!
Strawberry Fields Forever
XoX
Tuesday, May 1, 2012
Pictures.
In college world, it's finals week. I am terribly busy and overwhelmingly stressed. One week left!
The very least that I can do is show some pictures. They make me smile, and I hope they make someone else smile too! Here are some photogs from the past few months.
Here's...NELLY
\
February 2, 2012
February 10, 2012
March 9, 2012
April 16, 2012
Happy Hump Day!
XoX
Monday, April 16, 2012
G'day mate!
Today shaped up to be pretty spanktacular! I think it had something to do with me complaining about Hennepin County the other day...what's it called... a COINCIDENCE! Or, as I like to call these little occurrences "coinky-dinks"!
I live for coinky-dinks. Like how the name Penelope means weaver.
On my way to Archaeology class, rocking out to "Swallowed" by Bush and feeling in between, I got a call from the county. I held my breath! Not for long though, since I was driving. I can't be losing consciousness while driving, that's crazy, especially at the expense of HC. That is ludicrous.
Surprisingly, HC had good news for me. When I saw their number I was ready to throw down, but the news was delivered by someone I had never talked to before; she is new to our team and she sounded very young and sweet. She giggled and said "um" a lot, that worried me. I have a hard time dealing with people who can't act professionally in this type of circumstance. I don't talk candidly when it comes to matters regarding PP. I'm past the "duh duh, how cute am I" stage. Nevertheless, I was able to carry a coherent conversation with her.
She said she was having troubles with our case because she didn't understand it completely. How encouraging! At the very least, she assured me that she was being helped along. This is just a tiny example of the bureaucratic bullshit I deal with on a regular basis with HC. They expect me to have all my ducks in order, within an unreasonable time frame, as they continuously send out unnecessary and time consuming paperwork, then put people on my team that don't know what they are doing in the middle of this complicated process. I guess it's good that she was covering all the bases, crossing her i's and dotting her t's, it's stupid little things like this that have bitten me in the ass before.
JEEZ! FLUFF OFF HC!
I explained what was going on with my part in the process since she was calling for clarification about services PP had been denied in the past. She said that the HC team was done reviewing PP's case so it was on it's way up to the State level to be reviewed by the SMRT team.
YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!!!!!!!!!!!!!!!!!!
I had no further clarification on the actual status of our case, which sucked. At least it was making it's way up the ladder more quickly than I had been told by my Public Health Nurse. It felt good to know that I did everything right because the HC worker didn't say that I needed to send over any additional paper work. The time frame I was looking at as of Friday the 13th was two weeks out just for the review process, so the fact that the first leg of the journey was completed almost a week early is very encouraging! I just hope that the remainder will keep this momentum and soon we will have everything PP needs and maybe I'll have a chance at less paper work hanging over my head.
I can count on three things in life: death, taxes, and paperwork. Alas, there will always be paper work, but less is easier.
I am super excited to call Stephanie, the Public Health Nurse, tomorrow with the news. She will double check the system because she has personal access to all HC files regarding PP's case, just to make sure we aren't missing anything. And I know that she will appreciate the progress, maybe even celebrate briefly with me until PP throws grenades at me to get off the phone.
That's enough about that.
PP is in full therapy mode. She has therapy 3 to 4 times a week, plus school at an elementary for two hours every week.
We had Occupational Therapy at the hospital today. It was fun. We were introduced to 'brushing'. It's a process to de-sensitize children with sensory issues. As with many things, I could talk for a very long time about PP's sensory issues and why brushing is a good thing for her. However, I will attempt to put it in a nutshell: to make everyday sensory activities like dressing or changing diapers easier, using this soft plastic brush on PP's legs, arms, and back will help her cope with the negative feedback she is getting from her nervous system when she does activities of daily living. When PP needs her diaper changed, needs to change clothes, put shoes on, almost every transitional activity that "normal" people can glide through without noticing, her nervous system sends really exaggerated signals to her brain saying that these events are really unpleasant. Since she can't speak, when she gets this negative feedback her reaction is giggling in a nervous way, kicking, arching her back, screaming, hitting, crying, even biting. She will try pretty much anything you could imagine trying to do yourself, if you were to try to stop someone from rubbing rough grain sandpaper on your skin. The brush used in brushing is like a very fine grain sandpaper that is used multiple times a day in hopes to make the sensation more tolerable. There are so many dynamics that go into this process, including vestibular and proprioceptive feedback that involve the concept of PP's body self-awareness within space. Incorporation of brushing is just one little drop in the ocean of PP.
Oh man! It's past my bedtime
soft pillows and fairy dust,
XoX
I live for coinky-dinks. Like how the name Penelope means weaver.
On my way to Archaeology class, rocking out to "Swallowed" by Bush and feeling in between, I got a call from the county. I held my breath! Not for long though, since I was driving. I can't be losing consciousness while driving, that's crazy, especially at the expense of HC. That is ludicrous.
Surprisingly, HC had good news for me. When I saw their number I was ready to throw down, but the news was delivered by someone I had never talked to before; she is new to our team and she sounded very young and sweet. She giggled and said "um" a lot, that worried me. I have a hard time dealing with people who can't act professionally in this type of circumstance. I don't talk candidly when it comes to matters regarding PP. I'm past the "duh duh, how cute am I" stage. Nevertheless, I was able to carry a coherent conversation with her.
She said she was having troubles with our case because she didn't understand it completely. How encouraging! At the very least, she assured me that she was being helped along. This is just a tiny example of the bureaucratic bullshit I deal with on a regular basis with HC. They expect me to have all my ducks in order, within an unreasonable time frame, as they continuously send out unnecessary and time consuming paperwork, then put people on my team that don't know what they are doing in the middle of this complicated process. I guess it's good that she was covering all the bases, crossing her i's and dotting her t's, it's stupid little things like this that have bitten me in the ass before.
JEEZ! FLUFF OFF HC!
I explained what was going on with my part in the process since she was calling for clarification about services PP had been denied in the past. She said that the HC team was done reviewing PP's case so it was on it's way up to the State level to be reviewed by the SMRT team.
YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!!!!!!!!!!!!!!!!!!
I had no further clarification on the actual status of our case, which sucked. At least it was making it's way up the ladder more quickly than I had been told by my Public Health Nurse. It felt good to know that I did everything right because the HC worker didn't say that I needed to send over any additional paper work. The time frame I was looking at as of Friday the 13th was two weeks out just for the review process, so the fact that the first leg of the journey was completed almost a week early is very encouraging! I just hope that the remainder will keep this momentum and soon we will have everything PP needs and maybe I'll have a chance at less paper work hanging over my head.
I can count on three things in life: death, taxes, and paperwork. Alas, there will always be paper work, but less is easier.
I am super excited to call Stephanie, the Public Health Nurse, tomorrow with the news. She will double check the system because she has personal access to all HC files regarding PP's case, just to make sure we aren't missing anything. And I know that she will appreciate the progress, maybe even celebrate briefly with me until PP throws grenades at me to get off the phone.
That's enough about that.
PP is in full therapy mode. She has therapy 3 to 4 times a week, plus school at an elementary for two hours every week.
We had Occupational Therapy at the hospital today. It was fun. We were introduced to 'brushing'. It's a process to de-sensitize children with sensory issues. As with many things, I could talk for a very long time about PP's sensory issues and why brushing is a good thing for her. However, I will attempt to put it in a nutshell: to make everyday sensory activities like dressing or changing diapers easier, using this soft plastic brush on PP's legs, arms, and back will help her cope with the negative feedback she is getting from her nervous system when she does activities of daily living. When PP needs her diaper changed, needs to change clothes, put shoes on, almost every transitional activity that "normal" people can glide through without noticing, her nervous system sends really exaggerated signals to her brain saying that these events are really unpleasant. Since she can't speak, when she gets this negative feedback her reaction is giggling in a nervous way, kicking, arching her back, screaming, hitting, crying, even biting. She will try pretty much anything you could imagine trying to do yourself, if you were to try to stop someone from rubbing rough grain sandpaper on your skin. The brush used in brushing is like a very fine grain sandpaper that is used multiple times a day in hopes to make the sensation more tolerable. There are so many dynamics that go into this process, including vestibular and proprioceptive feedback that involve the concept of PP's body self-awareness within space. Incorporation of brushing is just one little drop in the ocean of PP.
Oh man! It's past my bedtime
soft pillows and fairy dust,
XoX
Sunday, April 15, 2012
Enough already! Ugh!
Sometimes, I have a bad day.
More than what I like to let on.
Today is one of those freaking frakkin days.
Blame the rain and non-tornadoes for making me stay inside and worry about nonsense.
I have been having an extra stressful day since the end of February. I got on the ball to get everything in line for the PCA services to start up, but then Hennepin County needed to review PP's case suddenly and she was taken off insurance through HC because our income+her age= a new income bracket for Chris and I to fit into, and we are just over the limit.
Seriously, like $500 a month over the limit, which is like a little bit of pee pee in a big bucket. Someone give me a break dammit! Screw you HC and everyone who abuses the system. You make it harder for people who actually need services to get them. For the past month and a half I have had enough pending paper work and phone calls to fill a full-time job. I have piles of paper everywhere.
PP can still receive services like ER visits, prescriptions, and therapy, but her PCA stuff is suspended until we get this sorted out. I really need these PCA services! I have had to put my plans for PhunPhase3 on hold until I got the PCA, but I didn't anticipate it would take this long! Ugh!
So now what happens? Well, I fill out shit tons of paper work. I mean, like, TONS of paper work. If there is one thing I hate, it is doing paper work for HC and beyond. I have to prove that PP is disabled to a few different teams on the county and state level so she can qualify for a certain kind of insurance program. Then I have to wait. And wait. And wait. And call. I make so many phone calls and sit on hold forever and ever. She would have primary insurance through Chris' work, but then she would be on a supplemental state program to pick up the bill for all of her services and doctors appointments. It's much more complicated than that, I could spend a day talking about it there's so much to it but I am lazy right now. It's called TEFRA, google it.
Since I have to dig out all of PP's past medical records (including doctors visits, ER visits, therapy evaluations, school evaluations, and anything else that can prove she is disabled) I am completely reminded of the hard, cold truth about my girl. She is disabled, and I kind of forget about it sometimes. She is just PP, that's how I see her, but doctors and therapists see her differently than I do. The Developmental Pediatrician sent his report last month, as does everyone who works with PP, but there was something I read that I think about a lot. It's hard for me to gauge where PP is developmentally; she is kind of all over the board. The Developmental Pediatrician put it in black and white: in terms of developmental milestones, my 2 1/2 year old girl is operating at a 11-14 month old level. Just reading that makes my heart beat in a weird way. I can't explain it, but I would never wish that feeling upon anyone.
Ugh. Enough already! I don't really know what to say about that.
Ugh. Enough already! I don't really know what to say about that.
I guess I would just say that I am incredibly thankful for everyone who works with PP, because they care a lot for her and our family. It means more to me than I can even express. The people who work with her have become like a weird sub-family who speak in medical jargon and remember how PP was when she was little in a way that my biological family wouldn't understand. I don't know where she would be without them!
Her doctors and therapists take pictures and videos of her regularly and give them to me, it's almost like they are surrogate grandpas and grandmas. I keep these things to myself though, they are special to me in a way that I don't want to share with anyone besides Papa Chris. I can't explain that feeling either I suppose.
Her doctors and therapists take pictures and videos of her regularly and give them to me, it's almost like they are surrogate grandpas and grandmas. I keep these things to myself though, they are special to me in a way that I don't want to share with anyone besides Papa Chris. I can't explain that feeling either I suppose.
Another "bah-humbug" moment came when I got a phone call the other day. It was a number from the hospital (I pretty much have every number memorized) but it was one that I didn't recognize completely. I didn't recognize it because it was from the newest addition to the family: Urology. It was the receptionist calling to make an appointment, and it kind of caught me off guard. Dr. Meysenburg, PP's new primary doctor, said it was finally time to see a Urologist for PP's vesicoureteral reflux in her kidneys. This is a big deal to me because this brings the possibility of PP needing surgery for her nasty reflux to the top of my list of things to worry about. They will do bunches of tests and probably catheterize PP to get the stuff they need. Great. Ugh. Enough already!
Whatevs, I'll deal with it like a darn-tootin rockstar.
Sometimes I think it's ok to feel bad, mad, sad. It reminds me that I am a human being and not just a super-mommy robot-zombie. I will feel better tomorrow because I get to go to Archaeology class and that is always fun for me. I get to talk about rocks, history, and the subject of 'How preposterous are ALIENS?' comes up every time without fail. My wily teacher swears about stickin' it to the man. It's really great. I love talking about aliens and rocks and history and stickin' it to the man. The class demographic is all over the place, there's only about 10 students on a good day, so the conversation is always entertaining!
Anyways, back to the crabbiness. I hate HC and I hate paperwork. That's the point I really wanted to stress right now. I get sad about my PP being disabled but I love her more and more every day, so I think it equals out somewhere in the universe.
My case worker/Public Health Nurse is amazing BTW, she kept tabs on me during her vacation and even did a little work for me. What a gal! She is keeping the fire lit under the HC teams reviewing PP's case, so now I play the waiting/calling game until I hear something I like. She's like a mentor. She always says "Well Lacey, it's good that you're doing all of this now. You are doing a good job, and I know it's a lot of hard work. You will be the best Public Health Nurse! This is how I learned how to do my job before I went to school, be thankful for it because it will pay off." She understands me, and everything that I am going through. Thank goodness for people like Stephanie! Mad props to you, home girl.
Come to think of it, every teacher of PP's is always encouraging and willing to lend an ear about whatever I need to talk about. Teachers and Nurses are the best breed of professionals! They will go above and beyond to help others!
It seems like I have generated enough positive energy to detract grumpy momma Lace. Kudos, momma Lace. I am not so crabby anymore!
I still am not fond of HC tho. Make a note of it.
Time to geek out and watch Game of Thrones with Papa Chris.
Tata!
XoX
Monday, March 26, 2012
To the Moon!
I had a nice little thought on my way home from school today:
It could seem as though the decisions I've made in my life seem backwards and unfortunate. Yes, I can see how getting pregnant at 21 isn't a good idea for most people. No, I am not married to the father of my child. No, I do not own my own house and I do not have a degree or career yet. Jeez! Where's the good part?! It could be depressing...but it's most certainly not.
The second happiest moment in my life was when I realized that I could live my life exactly the way that I wanted to; in a way that went against every rule I was taught for living the American Dream. I get to write a story like no one I've ever known! It's liberating, scary, satisfying, fills me with curiosity and uncertainty. I love learning and I love people so I've always wanted to live a life that revolved around those two things. I always thought that planning the rest of your life out while you were in your 20's was insanely boring, useless, SO not what I wanted for myself. Doing things backwards, in a sense, made the most sense to me. I hear a lot of people say that having a baby "before you're ready" means you have to throw your dreams out the window, which is wholly untrue. It makes things harder in some ways, but it makes things easier in almost every other way because love can help you accomplish anything and everything. I got what could be considered an end result in the beginning of my life, so I see my end result as limitless. What better environment to help you plan out the rest of your life, than to be surrounded by people who want to teach, learn, love, and have fun with you? I've got my family, now I can concentrate on making a life that fits us best.
Speaking of family, PP starts her new Occupational and Speech therapy next week! I am so excited! Therapy starts on her Spring Break from the school system which is nice because we can introduce her to this new stuff without overwhelming her. It will be really different, but I am looking forward to the new techniques and resources we will get from her new therapists.
PP has recovered from a UTI this past week, the darn bilateral reflux in her ureters flared up. She had a bad fever, but no cold or flu-like symptoms which sent up a red flag for me. She can't talk, but when she would try to void her bladder she would scream like a banshee and it doesn't take a rocket scientist to put two-and-two together. A 3AM trip to the ER went very quickly and we got a substantial amount of antibiotics for her. We endured about 4 consecutive nights of being up ALL night, with Chris and myself taking turns sleeping on the couch and watching a movie in our bed with PP. The three of us trying to sleep in the same bed together was nearly impossible, and probably pretty funny if I wasn't blinded by sleep deprivation. I forget which day it was, probably day 3 of no sleep, I was trying to play with PP. I say "trying" because even though I was sitting up, talking to her, and moving toys in my hands I was falling asleep. Like, really, falling asleep. It was the weirdest feeling! Sheesh! I survived with the help of large iced caramel macchiatos from Dunn Bros, which I would chug in less than 5 minutes. I'm so glad it's over and PP is all better now!
Today, we went to Children's Hospital to have blood drawn. The three of us each had 10mL of blood taken so it could be tested for Weavers by those eager beaver scientists up in Canada! Chris went first, then me, then PP. This was by far the best blood draw PP has ever done! She cried and tried to pull her arm away, but I know she can pack a punch when pitted against a phlebotomist. Thankfully, this wasn't the case today! I think that watching me and Chris do it first helped her a lot. She recovered quickly, and within a few minutes you wouldn't have known that the phlebotomist had to dig in her arm to find a vein! I don't know when the test results will come back, but I won't hold my breath. Genetic testing is very complicated. I can imagine that testing for a very obscure and rare genetic disorder would take longer than a normal test.
PP is such a character! She loves going outside. She stands by the door and yanks on my purse or her jacket, then bangs on the door when she wants to go out. She loves to take rides in her Radio Flyer, playing in her play house and sliding down the little slide. She loves to walk near the street too, so showing her not to walk where the cars are driving is something I have been trying to teach her. It usually starts with me trying to block her way and explain why it's bad to walk into the middle of a busy street, trying to redirect her, then she ends up throwing a fit and we have to go into the house so she can throw herself around on the couch or in her crib where it's safe to do so. She also hates dogs that bark. They are very scary and send her into a frenzy that is only cured by a hug, walking and singing. She likes to use her reverse four-wheeled walker in the yard. It helps her stay stable over the uneven surface, and gives her more independence. She can kick beach balls and chase Momma all over (almost). PP also likes to lay on her back on the ground in search for airplanes and puffy clouds to point at, which is absolutely adorable.
PP loves to give hugs and kisses, but mostly to Momma and her sock monkeys. She's shy to give kisses to Papa Chris, I think it's because of his whiskers! However, she does giggle A LOT when Papa gives her tickle-ly whisker smooches! She loves to give hugs, cuddle and watch her Papa edit his photos. We tried to use the FaceTime application on our phones the other day which went terribly! She looked horrified; crying and screaming when she saw Chris' face on the phone! It was funny to me, but obviously not to her. She gets upset when he's not around, and she would prefer it if both of us stayed in the same room at all times and gave her our undivided attention. She's two, ya know! Very bossy!
PP has started to sign two signs together, like "more" and what I am beginning to pin down as "eat" or "drink". She is making up her own signs, but she's lucky that I have developed the priceless skill of knowing how to dissect non-verbal language from years of working with Alzheimer's patients and people with disabilities. I never imagined how useful those skills would become!
PP loves to jump on the bed with Momma, and she loves to play dress up! She wears my shirts, hats, shoes and jewelry. She also puts clothes on me! The other day I was wearing two blankets on my head, a hat, sunglasses, and a stacking toy in my mouth which she thought was hilarious. She has an odd fashion sense that is totally PP. She is most definitely a unique girly girl!
Well, time for bed.
Sweet dreams and pleasant thoughts
XoX
It could seem as though the decisions I've made in my life seem backwards and unfortunate. Yes, I can see how getting pregnant at 21 isn't a good idea for most people. No, I am not married to the father of my child. No, I do not own my own house and I do not have a degree or career yet. Jeez! Where's the good part?! It could be depressing...but it's most certainly not.
The second happiest moment in my life was when I realized that I could live my life exactly the way that I wanted to; in a way that went against every rule I was taught for living the American Dream. I get to write a story like no one I've ever known! It's liberating, scary, satisfying, fills me with curiosity and uncertainty. I love learning and I love people so I've always wanted to live a life that revolved around those two things. I always thought that planning the rest of your life out while you were in your 20's was insanely boring, useless, SO not what I wanted for myself. Doing things backwards, in a sense, made the most sense to me. I hear a lot of people say that having a baby "before you're ready" means you have to throw your dreams out the window, which is wholly untrue. It makes things harder in some ways, but it makes things easier in almost every other way because love can help you accomplish anything and everything. I got what could be considered an end result in the beginning of my life, so I see my end result as limitless. What better environment to help you plan out the rest of your life, than to be surrounded by people who want to teach, learn, love, and have fun with you? I've got my family, now I can concentrate on making a life that fits us best.
Speaking of family, PP starts her new Occupational and Speech therapy next week! I am so excited! Therapy starts on her Spring Break from the school system which is nice because we can introduce her to this new stuff without overwhelming her. It will be really different, but I am looking forward to the new techniques and resources we will get from her new therapists.
PP has recovered from a UTI this past week, the darn bilateral reflux in her ureters flared up. She had a bad fever, but no cold or flu-like symptoms which sent up a red flag for me. She can't talk, but when she would try to void her bladder she would scream like a banshee and it doesn't take a rocket scientist to put two-and-two together. A 3AM trip to the ER went very quickly and we got a substantial amount of antibiotics for her. We endured about 4 consecutive nights of being up ALL night, with Chris and myself taking turns sleeping on the couch and watching a movie in our bed with PP. The three of us trying to sleep in the same bed together was nearly impossible, and probably pretty funny if I wasn't blinded by sleep deprivation. I forget which day it was, probably day 3 of no sleep, I was trying to play with PP. I say "trying" because even though I was sitting up, talking to her, and moving toys in my hands I was falling asleep. Like, really, falling asleep. It was the weirdest feeling! Sheesh! I survived with the help of large iced caramel macchiatos from Dunn Bros, which I would chug in less than 5 minutes. I'm so glad it's over and PP is all better now!
Today, we went to Children's Hospital to have blood drawn. The three of us each had 10mL of blood taken so it could be tested for Weavers by those eager beaver scientists up in Canada! Chris went first, then me, then PP. This was by far the best blood draw PP has ever done! She cried and tried to pull her arm away, but I know she can pack a punch when pitted against a phlebotomist. Thankfully, this wasn't the case today! I think that watching me and Chris do it first helped her a lot. She recovered quickly, and within a few minutes you wouldn't have known that the phlebotomist had to dig in her arm to find a vein! I don't know when the test results will come back, but I won't hold my breath. Genetic testing is very complicated. I can imagine that testing for a very obscure and rare genetic disorder would take longer than a normal test.
PP is such a character! She loves going outside. She stands by the door and yanks on my purse or her jacket, then bangs on the door when she wants to go out. She loves to take rides in her Radio Flyer, playing in her play house and sliding down the little slide. She loves to walk near the street too, so showing her not to walk where the cars are driving is something I have been trying to teach her. It usually starts with me trying to block her way and explain why it's bad to walk into the middle of a busy street, trying to redirect her, then she ends up throwing a fit and we have to go into the house so she can throw herself around on the couch or in her crib where it's safe to do so. She also hates dogs that bark. They are very scary and send her into a frenzy that is only cured by a hug, walking and singing. She likes to use her reverse four-wheeled walker in the yard. It helps her stay stable over the uneven surface, and gives her more independence. She can kick beach balls and chase Momma all over (almost). PP also likes to lay on her back on the ground in search for airplanes and puffy clouds to point at, which is absolutely adorable.
PP loves to give hugs and kisses, but mostly to Momma and her sock monkeys. She's shy to give kisses to Papa Chris, I think it's because of his whiskers! However, she does giggle A LOT when Papa gives her tickle-ly whisker smooches! She loves to give hugs, cuddle and watch her Papa edit his photos. We tried to use the FaceTime application on our phones the other day which went terribly! She looked horrified; crying and screaming when she saw Chris' face on the phone! It was funny to me, but obviously not to her. She gets upset when he's not around, and she would prefer it if both of us stayed in the same room at all times and gave her our undivided attention. She's two, ya know! Very bossy!
PP has started to sign two signs together, like "more" and what I am beginning to pin down as "eat" or "drink". She is making up her own signs, but she's lucky that I have developed the priceless skill of knowing how to dissect non-verbal language from years of working with Alzheimer's patients and people with disabilities. I never imagined how useful those skills would become!
PP loves to jump on the bed with Momma, and she loves to play dress up! She wears my shirts, hats, shoes and jewelry. She also puts clothes on me! The other day I was wearing two blankets on my head, a hat, sunglasses, and a stacking toy in my mouth which she thought was hilarious. She has an odd fashion sense that is totally PP. She is most definitely a unique girly girl!
Well, time for bed.
Sweet dreams and pleasant thoughts
XoX
Monday, March 19, 2012
Oh happy day!
It's days like today that put a hop in my stride. Accomplishing things that have been weighing down my head for a long time is so rewarding!
I finally got all of PP's medical assistance paperwork put together. HALLELUJAH!!! This involved coordinating the efforts of my school and my ex-employer. I was worried about how it would all work out because my ex-employer seems flighty when it comes to things that are actually important. I finally got their last bit of paperwork today, so I don't think I'll have to deal with them until tax season next year! Thankfully, the school was very prompt in returning their completed paperwork!
This problem came about in the first place because I misunderstood the due date for her initial 6-month income review paper work, and unfortunately it has set us back about a month. I only missed the due date by a few days! PP can still get services when she needs them because she's disabled, but to avoid having to deal with re-submitting insurance claims (which are a HUGE pain in the ass) it is most favorable to have paperwork done before their due dates. The county is quick to take away benefits, if they have any excuse to not cover PP they will jump at the chance! It is very expensive to take care of a special needs child and the county has a whole flock of them.
I am super happy that I got everything together, and that my social worker even went into work on her day off to take care of the rest of the paper work. I talk to her on almost a daily basis. She is so awesome! She is always willing to go that extra mile to help us out, and if she didn't we would be in hot water! Stephanie is my direct link to the county and she knows all the right things to do to get things pushed through as quickly as possible. It's people like her that I wish to imitate when I become a public health nurse! Hard workers are priceless!
Well, speaking of hard work, I gotta go do some American Literature discussion posts!
Peace out!
XoX
I finally got all of PP's medical assistance paperwork put together. HALLELUJAH!!! This involved coordinating the efforts of my school and my ex-employer. I was worried about how it would all work out because my ex-employer seems flighty when it comes to things that are actually important. I finally got their last bit of paperwork today, so I don't think I'll have to deal with them until tax season next year! Thankfully, the school was very prompt in returning their completed paperwork!
This problem came about in the first place because I misunderstood the due date for her initial 6-month income review paper work, and unfortunately it has set us back about a month. I only missed the due date by a few days! PP can still get services when she needs them because she's disabled, but to avoid having to deal with re-submitting insurance claims (which are a HUGE pain in the ass) it is most favorable to have paperwork done before their due dates. The county is quick to take away benefits, if they have any excuse to not cover PP they will jump at the chance! It is very expensive to take care of a special needs child and the county has a whole flock of them.
I am super happy that I got everything together, and that my social worker even went into work on her day off to take care of the rest of the paper work. I talk to her on almost a daily basis. She is so awesome! She is always willing to go that extra mile to help us out, and if she didn't we would be in hot water! Stephanie is my direct link to the county and she knows all the right things to do to get things pushed through as quickly as possible. It's people like her that I wish to imitate when I become a public health nurse! Hard workers are priceless!
Well, speaking of hard work, I gotta go do some American Literature discussion posts!
Peace out!
XoX
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