Wednesday, March 28, 2012

More Purple & 9mo old

Well After I posted the other day much more purple showed up to support epilepsy awareness! We all felt very loved around here. Everyone from co-workers (to the crazy purple work walls) friends from highschool, church, extended family and more pooches proudly wore purple in support and awareness
Here are some more of the pics. 





On another note-
Emmaus is 9months old! It really is crazy. I can't believe it has gone so fast. We went to the doctor yesterday for a well visit. She is 29.5 inches long(96.8 %) and 20lbs4oz (75%). Shes a big baby! Emmaus is a very happy child. She rarely cries and people often mistake her complaints for chatter. She likes to talk a lot and is saying a few consonants. (D's G's and B's are the most common ones). She has absolutely no stranger anxiety and once she sizes people up she will almost always smile at them. She lights up in the afternoons when her daddy comes home. She always has a smile and a squeal for him. Sleep has been rough this month. She goes to bed well. But doesn't stay asleep. Most nights one of us  ends up on the couch with her- which doesn't even always help. However- she naps pretty well during the day so that helps this mama out. She is a good eater and Eats 2-3 meals a day and nurses in the morning and before bed and gets a formula bottle around 2pm.
She isn't sitting yet but she is getting sturdier by the day. I said last months I was hoping she would sit in 2 months. Well I can guarantee she won't be doing it by next month. But I think around or a little after a year is a very realistic goal.
Emmaus likes singing songs, books, watching other children and outings with mom. Her favorite toy is a lamaze dragon "DeeDee" that my mom got her for valentines day.  She continues to sleep during bath time. She loves foods of all types and is getting better with chunky foods. She only has 2 teeth, but I do believe some top teeth will arrive soon. She loves to "pat pat" things and she is just starting to pinch things. She is still wearing the helmet and her head is rounding out very nicely.
It has been a rough month with seizures, med increases, and normal childhood illnesses...but that is just part of this gig. We are very much looking forward to spring and less germy weather.

Emmaus- you are a very easy happy child. I am so thankful to be your mommy, you make my job very easy. I do wish you would sleep better at night. (Mommy's need sleep too!) Your smile brightens my day and your laugh melts my heart. I am so proud of the things you can do and how much you have learned this month.
I love you so much!- Mommy
Here a few of my fav pics from the month
Ummm Thighs!

Shades

Seriously, those lips!

Besties

Physical Therapy at Target

Smiling even though she's sick! ROCK CHALK JAYHAWK!! *KU mens team makes final*

Sick snuggly baby

attitude....belly.

I think that about covers it all!
Love,
La

Monday, March 26, 2012

Epilepsy Awareness Day



Today is March 26 which means two things. 
1. Emmaus is 9 months old today! Crazy to believe she has now been on her own longer than she was with me.  I will write a 9 month blog later today or tomorrow.
2. Today is epilepsy awareness day. I posted it to my FB account and asked people to wear purple to show their support of those with epilepsy  and post a pic to my wall! It was been so fun to see all the pics people have been posting!

Emmaus and I showing our distaste for epilepsy. 
Look at her face! It just cracks me up! 

The following are all the pics that were posted to my wall!  We hope todays awareness and support helps those living with Epilepsy. We sure feel loved and supported today! 




this is baby zim. He is Emmaus' brother according to my friends little boy. Its an ongoing storyline.





Even furry friends wore purple today!! 
                

Thank you all for posting!
Love, La

Sunday, March 25, 2012

Week of the little sicky.

This week involved a trip to CMH ER because the little chubbs was having a ton of seizures.  Luckily they slowed a bit once we got there and she didn't have to be loaded to get them to stop. (Loaded= an IV med to help them to stop and a stay overnight). 
They did recommend us staying overnight for observation and a EEG in the morning 
(EEG= a scan to look at where the seizures are coming from in her brain)

At the ER being monitored
However, Dan and I felt like we could observe her well enough at home and the EEG was kinda pointless. We know that tubers in her brain are causing the seizures...so why does it matter (at this point) where they are located. Plus we had one a month ago. 
Anyway. They luckily respected our wishes to leave and said that was fine with them too. 

We were thinking we were just getting into a season of more seizure activity and that we probably needed to change her meds since she didn't seem sick at all.  HOWEVER! She woke up from a nap the very next day with yellow bogies pouring out of her nose! Hallelujah!
I know I know I am probably crazy to be glad she is sick...However, that gives us a reason for the increase in seizures. (Often with people with sz disorders get sick they have increased sz activity). So we are hopeful they will decrease once she starts feeling better. 
She is pretty sick though. Poor kid is even hoarse! Her little noises sound sickly! And because she ran a fever yesterday we couldn't wear the helmet. 

However, sick or not sick, hoarse or not hoarse....she is still cheering on the jayhawks!

 Rock chalk says the little chubbs. 
(or big chubbs in this pic! Her little face is so swollen from being sick!) 

RCJHGKU- 
Love, 
La


Tuesday, March 20, 2012

Perspective or lack there of.

I haven't written a lot lately. I really miss it. All this house buying and beautiful weather has had me distracted.

I have been in a funk lately. Super judgemental of other people. Feeling kinda sorry for myself actually. A lot of people we  know had babies around the same time as we had Emmaus.  It stings to get on facebook and see videos of every kid we know sitting, crawling, standing, walking. And for us to be so far from that place. (Although it is super exciting and I too would post a video!)

I used to have a healthy perspective and now I have an unhealthy one. (Literally- I have a perspective of a mom with a chronically ill kid- not  the perspective of a mom with a healthy kid.) And while we might be much more excited for milestones when they come because of the hours and hours of work we have spent on them. We also feel the sting of seeing those things pass.

While I have no perspective on the common cold, ear infection or diaper rash being a big deal...that doesn't mean they aren't...or that they aren't rough for those going through them.
I think in the last month I have fallen into a place of self pity and self righteousness. Like somtimes I think to myself "Well who cares if your kid has diaper rash, rsv, or an ear infection..my kid has seizures, is developmentally delayed and who knows what her future looks like. Plus we still deal with those common things. BAM" yah- graceful huh?
I am embarassed to write this actually. (please don't feel like I am talking about you if your kid had any of those things recently its just a generalization)

I seriously bashed my friend for saying she and her hubby wanted a boy next pregnancy. That they would be kinda disapointed if it wasn't a boy. BECAUSE I HAVE NO PERSPECTIVE FOR THAT. I mean I REALLY wanted a girl. And I probably would have been disapointed for a second if Emmaus was a boy. But then TSC came into our lives. And I know gender will never matter again. Of course everyone wants healthy first. But it is a luxury (and the mark of having healthy kids and being able to get pregnant easily) to want a specific gender.  But me in my little hole of self pity judged her harshly out of my perspective and didn't consider her perspective at all.

I don't want to be like this. I don't want to judgemental or think my burden is bigger than yours. (Damn I hate TSC.) We all have burdens to bare. Now how do we learn to do it with grace and joy?

I think I have lost all perspective or any that is worth having.
This parenting thing is hard. It is hard to have a kid in general. It is hard to have a chronically ill child. We are all just doing the best we can and need to stop judging each other. (That goes for me too).

Now here is something you need very little perspective to appreciate

I just can't handle this kid in all her cuteness.

Happy first day of spring!
Love,
La






Thursday, March 15, 2012

Your Daily Reminder

I often learn these cool little things about God or the bible. That I THINK apply to me, that I love, and share with others. But it sure is the PITTS when you have to actually put them into practice.
At church on Sunday a part of the sermon was first few minutes of this documentary about an incredible woman. In the intro she says she has lived through both the Nazi's and communist russia, and because God says 366 times in the bible "do not be afraid", (or some variation of that) she chose not to be afraid.
So on the way home Dan brings this up and pointed out how cool it is that God says "Do not fear" 366 times and in a year (leap year) there are 366 days.
Seems pretty important to not be afraid if God would mention it to us every day.

Well in our lives I feel like there is a lot to fear. (In anyones life really) But Just Emmaus having TSC alone is a lot to fear. It is such a broad spectrum of outcomes for these kiddos. She could be fine, or not fine, or delayed, or developmetally normal, or she could not speak, or maybe she will. IT IS SO UNKNOWN!
I think as people we fear the unknown the most.

So this week I've been going along my merry way. Trying not to fear and then BAM God has me put it into practice. (Rude)
Some friends we have made over the last year who's daughter also has TS had a scare. Their little girl has been seizure free-ish (besides when she has been sick) for a while now. She has had brain surgeries and is doing very well developmentally. Anyway- she randomly had a huge status seizure and ended up intubated in the ICU. (She is doing much better now and will increase her meds to help prevent seizures)
First this breaks my heart because I can relate. I can imagine us there with Emmaus. We are on a very similar journey to them and while we have different kids, different story we are all one family brought together under this disease.
This also scares me. It scares me that even though she is doing so well something like this can still happen. It scares me that we will never be truly "out of the woods" with this disease.

I am having to practice NOT BEING AFRAID. Not because it is easy but because God cared enough to remind me once for every day of the year. He commands me not to fear.

Today Emmaus is doing well.  She is having very few seizures. She is interactive and developing. She loves to laugh at her daddy and she gabbs away all the day long. She is the chubb masta' and loves to eat foods of all types. She is Happy and Growing and Lovely.
So I am choosing to rejoice in those things today. Not fear her seizing. Not fear her development. But Rejoice in her. I cannot control those other things anyway.

Like I said before it is the Pitts learning these lessons huh? But I guess rewarding.
Okay. I'm off to make a zillion more bracelets! See my last post and order a few! We are trying to get a baby home here people!
Love,
La

Friday, March 9, 2012

Simply Love Bracelets


 So we know these peeps. They are starting a family. (I know sooo exciting!) Well they aren't doing it the old fashioned way. Instead they are adopting! Giving a sweet tiny (so tiny he isn't even born yet) baby boy a home. They will be great parents.  Cool huh? You know what isn't cool? IT COST SO FRIGGIN MUCH TO ADOPT!
So while I don't have excess money to give- or not a whole lot. I do have my craftiness. So here is to hoping maybe a few of you have just a few extra buckaroos you could give!

I have been seeing these bracelets everywhere! Anthropology, Stella and Dot,  and even sports illustrated (yes it was the swimsuit edition- No my hubby doesn't read it...but I sure do. I am kinda obsessed with the painted on swimsuits. I mean they look real! It blows my mind) Anyway point in in several shoots they were wearing bracelets similar to these.

SOOOO... I decided to make some to try to help fund their adoption! I got a super generous hobby lobby gift card from my MIL for christmas so I didn't have any out of pocket cost! SOOO ALL the profit goes straight to the adoption fees! (Minus shipping. Shipping will be 2 bucks if you need that!)

I think they are really cute & colorful for spring. They have an adjustable back that is easy to adjust to any size wrist and easy to get on and off.
Anyway. Here are some pics. You can get the in any combo or color.  They are 3 bucks a piece or 3 for 8 bucks.
This is a SET of bracelets which is 8$





This is a single bracelet 3$





back closure
COLOR OPTIONS

Color options are 
Brown 
Green
White
Tan
Red
Purple
Blue
Yellow
Orange
Black
 Buy one...buy a few...bring a baby home!

Think about it!
Email me at ( Laurisa.Ballew at gmail.com )  if you are interested

Love,
La





Tuesday, March 6, 2012

Baby food and stuff

The last two nights have consisted of Dan and I making baby food. LOTS AND LOTS of baby food. I usually make it as we go. But I kinda got lazy- or busy (busy. definitely busy) and let us pretty much run out so it has been a baby food making marathon around here. It makes for very a very messy kitchen.




I know making your own baby food isn't for everyone but it was been really great for us.

It is CHEAP. My child eats very well for very cheap. We do mostly organic fresh produce and a meal cost us about 10 cents. 30 cents a day to feed the little chubbs? Not too shabby!
Plus I love that we can use seasonings that they don't offer in store bought foods. I have been using seasonings that Dan and I eat a lot. Curry, cumin, cinnamon, ginger, garlic, if it is a spice/seasoning that we use often we add it (in a mild amount) to her food. My hopes is that she develops a taste for those things so that when she gets a little bit older we aren't doing the whole "kid dinner" "adult dinner"deal. (Yes I know all you mothers with 2-5 year olds out there are saying "good luck with that sister". I said I am doing this IN HOPE...)
And on top of that stuff Dan and I have even found some great foods that we didn't know we would like but do! Butternut squash? Um where have you been all my life? (Peas...I still kinda gag when I make emmaus eat them, they have not won me over through this experience)

So I thought I would share a few of my favorite recipes to make for Em.
I primarily use wholesomebabyfoods.com to get all my recipes.



Brown Rice Chicken & Peaches
Ingredients:
1/2 cup cooked boneless chicken - chopped
1/4 cup cooked brown rice
1 ripe peach
1 tb juice (white grape or apple juice may be used or use water)
1 tb milk and 2 ts wheat germ
Directions:
Mix all ingredients together, transfer to blender/food processor and puree or chop to make textured for older babies
*I left out the wheat germ

Vanilla Apple, Pear, Blueberry Puree
1 apple diced
1/2 pear diced
1/2 cup blueberries
1/4 tsp vanilla

Add all ingredients to pot, add water to almost cover fruit. Simmer for 5 minutes. Puree or mash to appropriate texture.


Rice with Apple and Butternut Squash Purée (4)6 months+
1 squash - acorn, butternut or other winter squash
1 or 2 cups cooked brown rice
1/2 cup applesauce
Cut acorn or butternut squash in half, scoop out seeds
Place halves face down in a pan and cover with an inch of water
Bake in a 400 degree oven for 40 minutes or until the “shell/skin” puckers and halves feel soft then scoop squash “meat” out of the shell
Place squash "meat" into your choice of appliance for pureeing
Add cooked rice and applesauce and blend
Add water as necessary to achieve a smooth, thin consistency
*I added just a dash of cinnamon





So there you have it.  
Oh P.S. looks like we bought a house. One final step to go and I can say that for sure. And then I will share more details.
And just cause I can't get over these pics from this morning 


So sweet. Love that kid.
Love, La