Bye, 2011.

The New Year is fast approaching. I am excited.

PP has been taking 3-5 independent steps every day now, she's so big. I am really excited to see all of her teachers next week! Before the break I spoke to each of them and they told me how excited they were to come back to work and see the progress PP has made. We have had a lovely time off from school, but it gets boring at home and we love our teachers. PP has definitely been making progress in the past two weeks! Besides walking, her sign language has improved and it's clear to see what she is trying to do with her hands. It's such a neat process! She has also been making more sounds verbally, and non-verbally. Now, PP likes to burp and fart intentionally and she thinks it's very funny! She has been adding more "B" and hard consonant sounds to her vocabulary. Pointing at things and asking for "help" is mostly how she communicates, along with high pitched screaming. Her laugh is still the same, and I hope it always stays that way. PP has the BEST laugh I have ever heard. I am not biased because I've heard that from everyone who hears her belly laugh!

This New Year promises to bring a lot of change to our family and I am so ready for it. I am going back to school, and Chris (quitting smoking almost a year ago) has a whole new outlook on his health, and PP has a lot of growing to do!


Happy freakin' New Year!
XoX

Can you say, "Best Christmas, EVER?!"

What a fun Christmas! Our little clan did a lot of traveling in the past two days. The yearly migration from South MPLS to the northern suburbs is daunting but well worth it! After all, it's just for the weekend. We visited GG's house, Auntie Stacey's house, Grandpa and Grandma Babcock's, and even a quick stop to see Great Grandma Donna and Auntie Karri! We drove over the Great Mississippi a couple times too. I had the tune, "Over the river and through the woods, to Grandmother's house we go!" stuck in my head all weekend. How cute.

PP got lots of toys, of course! She also got zebra print clothes and an easel. I wanted to get her a puppy, but while shopping I was able to remind myself of my distaste for raising dogs! I'll stick with just the kid for now. It's so fun to see her play with all these new toys! PP especially likes her new wagon! I've always wanted to get a wagon for her, but just until a few months ago I was sure she would easily lose her balance and fall out. She is so much more stable these days! Taking a couple more independent steps at the Babcock's this morning was my favorite Christmas present! I am positive that PP is ready to have her own wagon now. The amount of change that she has gone through in the past year is astounding. This year she was engaged in the activities, she played with her Cousins and Uncles and Aunts! She could show the family her sign language and flirt like no other. She showed off her walking skills, having one hand held isn't so hard anymore! PP even threw a fit and pinched mommy on purpose, but it's OK. It's not that we allow her to do these things, she surely doesn't get away with hitting, but I am excited because it's behavior you would expect from a two year old. You have to appreciate things for what they are sometimes. I feel like a very lucky person!

After my awesome daughter, supportive family and friends are a large chunk of what keeps me going through the day. I have felt so much love from so many people! My goal is to dish it back ten-fold throughout this coming year. This time of year can really bring out the best in us! I hope everyone is having a wonderful Holiday season!

Sugar plums and snuggles!
XoX

VCUG's, VUR and P

Vesicoureteral reflux is defined as "the abnormal flow of urine from the bladder to the upper urinary tract." In other words, some of the urine in the bladder flows back up instead of down. This introduces lots of bacteria to the ureters and kidneys which can cause serious Urinary Tract Infections (UTI) and scarring.


We first figured out there was a problem in PP's kidneys/bladder when she was just about 5 months old. She got a terrible UTI that set her in the hospital for a few days. PP was in so much pain at one point they had to give her Morphine to calm down. I have never seen a child in so much pain before and I really hope that I never see it again. I remember sitting in her hospital room with Chris and the nurse: it was early in the morning, maybe 2AM, and the three of us were trying everything to figure out why this child was screaming bloody murder refusing to let anyone touch her! We were all having a hard time with the situation. The poor nurse was so rattled and embarrassed she couldn't even grab a glass of water from the end table without spilling it all over the floor. Before we asked her to go take a break and send someone else to help, she just stood with her hands over her face, shivering. I felt very bad for everyone involved! Shortly thereafter PP's morphine was administered and the room fell quiet. The nurses left so Chris and I just went to sleep after that. 


Those terrible days are long gone thanks to a daily prophylactic antibiotic! PP has had a few flare ups and Emergency Room visits, but nothing we can't handle at home. We found out she had VUR by a special x-ray of her bladder and ureters. While they pumped a dye mixture into PP to fill her bladder, they note the amount of solution going back up her ureters. This test is called a VCUG or voiding cystourethrogram. It's kind of a cool process, but it's not my favorite test she's taken. I personally like the barium swallow studies! Anyways, the first time this test was done they found that she had Grade 2 Bilateral VUR. The reflux was occurring in both ureters but was not traveling all the way back up to her kidneys. The most recent test she had done showed a decrease in reflux, just occurring in the left ureter now. The prophylactic antibiotic is definitely doing it's job, but to get rid of this urologic disease you must grow out of it or have surgery. 


We have another VCUG scheduled in July. We hope that PP's ureters are working like clockwork by then because there are brand new guidelines for children on prophylactic medicines and how long they can be on them. PP is past that time frame already, but since she has a unique situation the doctor told me that it was OK for her to take it for a while longer. PP is always the exception to the rule! I really don't want her to have surgery, so I will keep trying alternate options until surgery is our only option. 


That's about as much as I can say about that.


Happy Friday 
XOX

Pictures.

Brand new baby 

4 months

9 months

15 months                                                        

20 months

24 months

                 

Two years and counting...

Being two isn't always easy. Some days you will get spoiled by grandparents and even get to eat McDonald's. Sometimes you might get shots, and blood drawn, and your head measured. The latter isn't nearly as good as those juicy Chicken McNuggets. The tests and measurements are for Mommy and the doctors.

Today PP's measurements ranged from 62nd to off the charts percentile. The doctors use a slightly different chart for PP, and they don't put the actual percentile into forethought as much as they look at the  steady increase of her measurements over time. A new test PP had done today was a body mass index (BMI). She has 16% BMI, in the 62nd percentile, which is just fine. Her head measured in the 96th percentile. Height was 37.1" which was off the charts so they called it 99th percentile. She weighs 32lbs 11oz, which is a decrease from last time but still in the 98th percentile. In other words, Dr. Sarah thinks PP is growing just great. I agree with her. 

The doctor and I talked about the diagnosis of Weaver's Syndrome and what it means for PP. Dr. Sarah had never met PP before so she did a little homework before our visit. Finding information on Weaver's is easier if you're a doctor, but she wasn't able to find much. This basic information never seems to increase or change, ever. However, she proved that having a fresh set of eyes look at PP's chart is very helpful. Dr. Sarah suggested we see Developmental Pediatrics in hopes to get further testing on PP's behavior and other areas. This is an effort to see which of PP's symptoms line up with Weaver's and which ones could fit somewhere else. I asked Dr. Sarah about Autism as well. Honestly, I wasn't very concerned about it, but when I was given an Autism Q&A at the office I checked off more boxes than I thought I would. Some symptoms that PP has line up with Autism as well as Weaver's. That's where this new developmental testing will come in handy! We can sift through all the little things to get a better view of the big picture. Weaver's Syndrome, PP style. 

So this new adventure has an order written for one year. I can't imagine where PP will be then. When I think about where she was one year ago I feel a lot of emotions. I'm happy, sad, proud, excited, anxious,  lotsa things. Last year on her birthday I had to help her sit up to open presents and she was still on thickened fluids. She hadn't gotten her diagnosis yet. Now she is so close to walking and her sign language is getting much better; this is fantastic progress. Our little family has embraced the diagnosis and now we just go with it. We already have orders written for various tests next year, like the VCUG, which I am nervous about. I would love to be done with this 'medicine every day' thing and not worry about my daughter getting a UTI, but I won't hold my breath. I am still so proud of my girl because she works hard and gets what she wants, just like her momma. She's motivated and energetic, which makes me anxious for her future. I want to see her succeed so badly! I can't rush her though, because I know that she has to do things her way and in her own time. PP needs me to do what I do best: support, love and help her become her own person. Also, to make chocolate chip cookies. 

When we arrived home from our doctors visit I found a letter in the mail from our beloved Dr. Melchert. He will no longer be practicing medicine in the Children's Clinic, he's moving to the Emergency Room. It's time to start looking for a new doctor! Thankfully, I have a tip for a great doctor over at Gillette Children's hospital in St. Paul. This hospital is geared towards children with disabilities so I am definitely excited for this new change!

Bottom line, there will be lots of cookies and love in my house this next year along with fun, new adventures. I can't wait!

Ho ho ho's and jingle bells 

XOX

Wee woo wee woo!

Sudden fever and crankiness hit Ms PP last night! The damage was immeasurable because mom and dad were too tired to measure. There were four cases of sweaty kid, two evidence soaked diapers, and three screaming incidents throughout the night.
Information on this event is limited, due to the fact that the report has not been properly completed because mom got to sleep in and she's too happy to care what happened last night! That is all.

XoX

UKULELE!

Online shopping is my newest addiction, as with the majority of the US. I think I like it SO much because I love to get mail. Especially pretty new things in the mail. Particularly, a ukulele.

YEAH! I GOT A UKULELE! It's a pineapple. It sounds so sweet, I love it. Being this excited is not something I am used to so I just had to share!  

Happy strummin!

XOX

Yearly review.

As the end of the year draws near, I think about my New Year's resolution from last year. It was simple: "Make this year better than the last."

During the month of January I wasn't in the hospital with PP. I am so grateful for that. We still lived in our old apartment with the horrible downstairs neighbors. The cats named Sergeant Pepper and Ernie lived in my house. I had my little red car. A new school year began and we had a solid IEP.

February rolled along so Chris and I celebrated our birthdays by doing nothing. Then my little red car broke and I had a difficult time doing anything. I finally got a new car after a couple weeks of looking. Although the Matrix isn't perfect, I love it every day and am incredibly thankful for it. The horrible downstairs neighbors were raided for drugs and put me into hysterics, so I started apartment searching. There was a terrible snow storm, but my new car didn't get stuck.

The day we got PP's diagnosis of Weaver's Sydrome was on March 7.
I found an apartment for my family located in a great part of MPLS and moved in early. We started exploring the community and fell in love with it. South Minneapolis may just be my forever home. I turned 23 on March 5th and started baking a lot of cookies.

When it was April 14th I remembered someone close to me who passed away last year. Peace and rest, Mary B. PP got orthotic braces for her legs, or I like to call them "Magic Shoes." Chris and I started our infatuous relationship with the Guthrie Theater.

May was the month we stopped feeding PP thickened fluids for swallowing problems, officially starting her obsession with apple juice. Chris and I quit smoking. We also went camping sans child, which was fantastic.

June snuck in and gave us fabulous weather, so me and PP spent a lot of time outside. Enjoying summer was important this year. We gardened, beached-it, walked, swam, ran, layed around, went to the park, took day trips to Southern and Southwestern MN, went antiquing, danced, ate on the Dairy Queen patio at night. These were very, very, very good times.

I found more of myself in July.
With our first garage sale we made some money, and learned that incredibly lazy and irresponsible neighbors can have the BEST intentions.

August had the feeling of change in the air. School didn't start for about a month and I had a lot of free time for myself and PP. We had another garage sale, the last one of the year. Preparing for the Fall/Winter season was the biggest thing on my mind so a lot of nesting took place.

September comes before you're ready. School started with a bang and has been non-stop ever since. I started working at the Convention Center as a banquet server for extra money. Chris was very busy at work, doing 10 hour days 5-6 times a week. Me and PP spent a lot time running errands, going to school, and doing whatever else was necessary for the day. I got butterflies from my Uncle Troy and Mr Molly the Siamese cat ate them. PP got hives that looked scary but were treatable. I'm so happy that was her most serious hospitalization this year.

October was fun. PP started Speech Therapy. I hosted a Stella and Dot jewelry party with my friend Veronica which was very fun. Chris and I participated in the Zombie Pub Crawl with a few of our friends and good times were had by all. Our dear friends, Brendon and Jamie, got married. Chris was a groomsman and he looked so handsome. We danced all night long!

I always look forward to November, the month of PP's birthday. Unfortunately, my grandpa Richard died from lung cancer as well. It was a very hard time for me, I was shaken. I had to postpone PP's birthday party because the funeral fell on the same day. It was a very important and personal choice for me to attend the funeral, so that's the way it had to be. I felt much better afterwards. The weekend after Thanksgiving we celebrated PP's birthday party with family and great friends. She got lots of fun toys and big girl jewelry.

December has only just arrived. We have been trucking along with the same-old, but we are getting ready for Christmas season with pretty lights and big bear hugs.

As I look back on the year I can't help but feel like I've transformed into a better Lacey Mom. During a bicker with Chris one day he said to me, " You always have the weight of the world on your shoulders. " I heard him. That mentality carries over into every area of your life, and can get scary. I felt like I never did things for myself and was forgotten. Relentlessly doing everything for someone else who has many needs is a big burden to carry, and I couldn't figure out how to adjust the weight of it all. I was bitter and felt short-changed. It was like there was always something wrong, like no one could possibly understand me. I ached for a break somewhere because I didn't want to be so serious and so tired anymore. It took me a while to realize I have to break myself. I couldn't stay in this stale frame of mind. I'd have to grow up all by myself.

Now I make a conscious effort to take myself and other less seriously. I don't fill my cup to the brim every day. I look at people for who they are and not what they should be. I tell a secret now and then. I ask for help. I tell people I love them, and feel happy when they say it to me. I sing out loud but only to my private audience. Asking Chris to help me do things that make me smile ended up being surprise date nights with lots of laughs and slobber-kisses. I love it. PP is always changing. Happiness comes with her no matter what, and with my new outlook we are able to enjoy beautiful works of chalk art on the floor and lots of chocolate milk. I finally enrolled in school again so January will be full of surprises, I'm sure. I'm expecting a pineapple ukulele in the mail today and a piano some time in the near future. I have been finding things that make me feel good and doing them. It makes me feel free, it makes me happy. Being the best mom I have ever been is the biggest trophy made from these changes, because it's for my baby P. It's a platinum trophy if you were wondering. It feels good to be me. Two thousand and eleven was a good year. Let's make next year even better!

Candy canes and twinkling lights!
XOX