Friday, November 30, 2012

Cascade Did you know

Did you know you can use cascade for a couple things BESIDES cleaning your dishes?

1. It gets baby poo out of EVERYTHING! I learned this from a friend at work and it seriously is the best mommy tip I have.  (besides loving your kids & remembering to feed them) It has to be the cascade with the GREEN top if you use liquid, or it can be powder that you add water to and make a paste. It smells like bleach but I promise won't bleach your baby's poopy clothes.  (just put the cascade on the stain, rub it in, rinse it out- repeat if necessary) We had ZERO outfits we had to toss because of poo stains-and if you have had a baby you know that is IMPRESSIVE-cause that stuff stains bad!

2. Today I learned it gets the funk out of your coffee pot. You see, for the last year we have had issues with our coffee pot "overflowing"- so every morning when I make coffee I also get to clean my counter cause it gets covered in coffee- lovely. So today my mom told me just to soak the lid in warm water mixed with the dishwasher soap. 5 soaks later my coffee pot lid is still leaching black stuff and chunks of black stuff- so mine might be a lost cause, but we are still trying! (Sorry if I have served you coffee ever- clearly I am not to be trusted in the beverage prep arena.)


*DISCLAIMER
- don't think I am too gross for having such a dirty coffee pot- I have cleaned it multiple times with vinegar water without any success- plus its been crazy around here- I kinda forget about it after I clean it up each morning. (Yes, I am afraid you will judge me for my coffee pot being dirty-but openly blogged about my pee spot. Also- I was not paid by Cascade to give my opinion- just wanted to share these helpful tips!

Emmaus is doing well today- Happy, Playful, head is still looking good- not swollen at all. She had a little issue with vomiting last night that had me a bit worried, but we think it was probably the anesthesia or something, cause it was very short lived.

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Thursday, November 29, 2012

Faithfulness

We are blown away by the goodness & faithfulness of the Lord. Last night at this time we had a room full of people praying for exactly what happened today.
1. That Emmaus would wake up and her head would be less swollen.
     - Check! It wasn't drastically less swollen- but the skin was not as tight and when touched her forehead kinda did the wave- so it was for sure less swollen.
2. That her CT would show no signs of hydrocephalus
     -Check! She definitely had fluid build up behind her skin, but her ventricles were normal sized! The Dr. was even surprised- but thrilled by this fact.
3. That she might not even need a drain so we could avoid a hospital stay.
     -Check! The Dr. decided it might be better just to "tap & wrap"- to Tap the fluid (stick a needle in her noggin and pull out the fluid - I asked to stay and watch cause I am so interested and they said no-boo!- they took 50mls out total.) And then Wrap her head tightly with a "compression dressing" to help her head not re-inflate & her skin re-adhere to her skull since it had been stretched a lot.
4. That she would absolutely not need a shunt!
     -Check!

Last night things weren't looking too good- and then overnight and a lot of expectant prayers later things are looking a whole lot better.

Sometimes when the road gets tough I fall into a hole and have trouble seeing out- I forget the faithfulness of the Lord- I forget the good things he has done for me- for our family. And although sometimes it takes a while (and definitely has been a learned practice) I now try to reach my head just out of the hole and look back down the road of the milestones of the Lord's faithfulness in my life.
And after a while I am ready to hoist myself out of the hole and keep walking down the tough road.

Today I have another milestone of faithfulness to add on my road- Tonight we should by all means be sitting in a hospital room tonight, with a drain and preparing for a shunt. And instead I am AT HOME writing my blog and watching this sweetness.
P.S. that is my hubby's arm not his midriff -hehe!-
Another funny pic from the day- I gave Emmaus a sucker after her procedure (caramel apple sucker-yum!) and I got this pic of her "smoking" it! haha!
gangsta'



We are so overwhelmingly thankful for the prayer warriors we have on our team. For the care we have received from all of you and the massive spread of "pray for Emmaus" and commitment to pray we have seen on Facebook and other social media sites.
It's amazing.
So soak in the Lord's faithfulness tonight!
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Wednesday, November 28, 2012

urgent prayer & update

I refuse to let Tuberous Sclerosis determine the path of my life. I refuse to let sickness and this very broken world steal my joy. Just wanted to make that clear.
On that note- I am a bit discouraged today.
Em's fluid build up has continued to worsen and after sending another round of pictures to our doctor (I forgot to mention in the last post that we have been in close contact with our doctor- including a trip to the ER saturday, pictures on monday, ect) He has decided it is time to do something.
 Top is Monday Bottom pic is Today
So tomorrow we (my mom, Emmaus & I) will leave for St. Louis at 4:30am to go back to STL childrens hospital.  Emmaus will have a CT and then her drain put back in- so we will be admitted.

Here is the deal-
1. If the CT shows her ventricles (head ventricles not heart) are enlarged she will get the drain & will possibly need a shunt
2. If the CT shows her ventricles are fine she will just need a drain for a bit.

Emmaus has made HUGE strides since surgery- she is a little chatter box, she is moving all over the place & checking out EVERYTHING.

she is bright eyed, she wants to play with & hold her friends hands,

she is seizure free!!!!, she loves the "dodogs" and wants to cuddle them

and she's not content. I know not-content seems like a funny thing to be happy about- but she is mad she can't crawl, she gets bored easily & wants to play- she has never been like this before- it shows growth and development.
We are discouraged by this fluid leakage & that it threatens her huge strides.

Please pray that her head would get into gear and start absorbing the CSF NOW. That tomorrow when we get up to go her head would be NOTICEABLY smaller. That her ventricles would not be enlarged. We believe God can and will break into this obstacle.

We are having people gather tonight at 7pm to pray for intervention! For break through- Please consider praying at home. And please lift us up tomorrow as Dan and I are handing this with him at work and me in St. Louis.  Pray that Emmaus wouldn't even need a drain, and that if she does she would handle it well. Another random request- pray we get a private room. Its no fun having to share a room.

Thank you all for walking this journey with us.









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Tuesday, November 27, 2012

Confessions and stuff

Confessions & other random things.

1. I truly want to be watching Grey's Anatomy (season 8) instead of blogging- but my phone is dead and we haven't hooked up Netflix to our TV yet...
   Voice of reason- "go up stairs and get your phone charger".
   Me: "naw I'm too darn tired".

2. I'm getting nervous about my kid's head- I mean she's acting fine, but she how has half a softball hanging out on her left forehead- and I kinda want to say "I was so brave and together through surgery- can we just be done for a while now?! yaaaahhhhhh" All day today I said "I think it is smaller" but in reality after looking at her tonight I think it is bigger. (Jesus break in and take care of that fluid!)

3. I had the most DELISH Vietnamese curry for lunch. It was spicy-but not hot, I mean the temperature was hot-but the taste was spicy but not hot...I can't really explain it-but it was yummy!!! (Vietnam Cafe on rainbow blvd- go there!)

4. All I have been wanting to do since I've been home is craft! I think I have been too busy and too stressed lately to do anything beyond what is required of me so it feels really nice to have a little time off work to care for my little love and to have time to craft- it truly is good for my soul.

5.  I heard the powerball is super high- in fact I may have gone in on a group ticket- I know it's foolish- Dan informed me I had a higher chance of getting attacked by a polar bear & a grizzly bear in the same day than win....WOWZA.
HOWEVER!!
Our friends are doing an American girl doll raffle to help fund their adoption and word on the street is it only 45 tickets have been sold- so if you have a girl that has her heart set on an American girl doll for christmas- its worth a shot! Odds seem much higher- in fact I bet the odds are higher that you win the doll than even SEE a polar bear or grizzly bear. (Plus even if you don't win- you help this awesome family get their baby sooner!)  HURRY! Only a FEW DAYS LEFT to purchase your lotto ticket- cough- I mean RAFFLE ticket.  Register for that HERE


That's all I've got-
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Monday, November 26, 2012

Alien Head

I just wanted to give a quick update on the girl child. She is doing very well- playing lots, verbalizing lots and best of all STILL SEIZURE FREE!  However- we have also run into a little complication. Since Thanksgiving Emmaus' swelling has increased instead of decreased. I guess technically it's not swelling. She has a pocket of fluid build up at her craniotomy site. Basically due to "debris" or blood from the tumor removal she seems to not be reabsorbing her cerebral spinal fluid (CSF) completely.  So fluid has begun to leak out of her bone flap (craniotomy site) and is collecting under her skin.

She looks like an big old Alien head on the left side. 


Her not reabsorbing fluid could be a temporary thing (Please Jesus) but could also be more permanent. We would love your prayers that it is temporary and it clear up quickly- while she makes a cute Alien- it can have more seriously complications and need some pretty serious interventions.  So we are just waiting at this point to see what happens. On a positive note she has NO other symptoms of hydrocephalus (the technical name for the more seriously issue) so we are encouraged by that.

And just so I'm not leaving you with the Alien head picture- one of my very much "morning girl" blabbering away with me at breakfast


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Saturday, November 24, 2012

Happy STEAKSgiving!

I realized today I have been doing a pretty terrible job at keeping people updated now that we are back home. But I am guessing everyone understands since we have gotten home, had a holiday & are still recouping.
 Emmaus helping daddy top the tree!

 Me doing a little crafting to ease my stressed soul.

Emmaus is doing extremely well! She now has officially be seizure free for 9 days! This is exactly what we had hoped for! She is healing well and playing hard. Sleep has been a bit of an issue. She has slept well some nights, but then had some pretty bad ones too. Last night topped the charts! I thought I had gotten her to bed at 745- until she woke up at 9pm...guess it was just a cat-nap to fuel her energy till 430 when she finally fell asleep. So we are tired around here. The other concern I have is her head- she is still very swollen over where they did her bone flap (where they entered her brain). I would expect the swelling to be decreasing by now- but she is still very swollen. If this doesn't decrease some in the next couple days we will see about taking her back to St. Louis this week. She has no other signs of infection, or distress, or hydrocephalus (which is too much fluid on her brain)- but it still is kinda concerning.  Otherwise are are doing well! 
Her language skills have seem to exploded! She was saying "Dog" (dodog) before but now says it all the time when she see a dog- she also will say "rowrow" when you ask  her what a dog says. It seems she is narrating life- we have been doing this with her for a while to encourage language skills- but she now is doing it for herself- all in baby talk of course. 


 Emmaus with her Dodog. 


 Lounging this morning reading some good books.
Then today we got to meet baby Anna. Some of our dear friend's little girl. We are so excited to meet her! 

We are so thrilled with the results from Emmaus' surgery. We cannot wait to see how she will change and grow in the months to come. She is such a little blessing.
Well I am off to go enjoy STEAKSgiving with my family! Kinda like thanksgiving minus the turkey-add in the steak...

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Thursday, November 22, 2012

Battle Scars.

Happy Thanksgiving!
   In our house we always have so much to be thankful for- but this year the blessing aren't hard to find or recall. The biggest one sits with me as I type this- woke me up at 4am and has developed a love for giving hugs and kisses & holding hands since her surgery. We are thankful for our army of a community that has fought hard for us and our little love. For food to eat, & people to eat it with. Thankful for so many things unspoken, held close to our hearts.

I have been thinking a lot about scars, I mean how could I not- we have a huge one we now see daily. About the scars in my life- my young heart broken, the feeling of rejection that came from silly girls, betrayal, the life-long lie that I am not good enough, not as smart, or always wrong. That I am a burden.  The feeling of failure that comes with working full time & having a kid that needs more than I am often capable of giving.
Places in my life where I have been broken, and have stitched the wound back together again. Places that I have had to sit and think about, process through- sure I could have pushed them aside, (and sometimes I have) but the wound is just going to reopen (and some have). What does it mean to actually deal with our wounds/our scars? To open them wide up and clean them out- get rid of the thing that has become so toxic to our lives-incompatible with growth, or a joyfilled life.
To surround ourselves with life-giving people, purge out those who caused the wounds- or prevent them from healing.
It was an easy decision to choose to get rid of Emmaus' tuber- Something that was so toxic to her life, that limited her future. To surround her with the best surgeon & team of doctors. Sure it was hard, it was scary, we had no guarantee of results- but it also had the chance to create something beautiful. It was a process, and still is- and it is no promise that something will challenge her again, that she will have no future problems.
Growth and beauty come from the dark places, the wounds, the toxic things- but only if we take the time to process, purge & heal.

Too deep a thought for thanksgiving?! Just wanted a cute pic of the kid dressed as a turkey? Ehh sorry!
So I will leave you with a pic of Emmaus' scar- not a sad thing, but a badge of beauty in her life- of healing.
 And since I know that is disturbing to some of you- here is a picture from this AM- scar hidden under her hair! 



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Tuesday, November 20, 2012

home

Yesterday (Monday) morning we got the go ahead that Emmaus' drain could be pulled out.  They pulled it out around 9 and the resident told us we would have to stay 24 hours before we could go home. We also got to see her incision for the first time...which is impressive! Bigger than I guessed!  Our neurosurgeon came in a few minutes later and said he thought Emmaus was doing so well there was no need for us to stay the full 24 hours and we could leave in the afternoon! WHAT A HUGE SURPRISE & RELIEF! We had a great day exploring the hospital with Emmaus in tow.  We had been in  double room all week and go out first roommate around 11 (another reason we are glad we got to go). Emmaus had a good day like expected and we were discharged around 3pm.Got home around 8:30.
I am up writing now because Emmaus is still up. This kid is funny when it comes to sleep (and by funny I mean exhausting).  But we are home, she did amazing this week & still is seizure free and that is worth losing a little sleep to sit up with my girl over!
We are currently watching baby einstein christmas- guess I should get back to it.
More tomorrow.



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Sunday, November 18, 2012

Extreme Home Makeover & Sneaking little people into the hospital.

Well apparently while we have been gone the extreme home makeover people came to our house- or something like that.  (Truly it was friends from CMH- but still who cares if Ty wasn't there- they are incredible & we are so beyond grateful for the kindness of others- all for the love of this little girl. It's incredible)
Today the last of our friends/family that came to St. Louis returned to KC. And it was pretty hard really. It is very exhausting being in the hospital & the support of friends & family was a great distraction. However- tonight we sit on the cusp of hope for things to come. For change in our little girl- which ultimately means a change in our lives. For the joy of celebrating 72 hours of seizures freedom. For new beginnings.

We were hoping to be coming home tonight or tomorrow, however, Emmaus' ventricular drain is still draining and it is still pink/blood tinged. So thats not going to happen. She has to have the drain out and do well for 24 hours before we could come home.  Pray for straw colored drainage and them clamping the drain FIRST THING tomorrow morning. So maybe we can be heading back to KC by tuesday afternoon?!  Maybe.

Today we snuck this little cutie into the hospital to see her friend.

They kinda like each other a lot.

Our day has been filled with lots of playing, reading (this kids LOVES to read) and then a little bit of a dance party. 
We are thrilled to have a happy playful girl back! 

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Saturday, November 17, 2012

Day 2 update- with lots of pictures

(This post has lots of pictures- so if the swolleness will bother you, just know they are coming)

It truly is incredible that just two days ago Emmaus had brain surgery. Kids recoup so fast.  Emmaus is doing very well! Last night I got to hold her for the first time, which was so good for my aching mama arms. 
Overall last night was a bit rough with Emmaus being pretty fussy and awake a lot. But today she woke up like her old self- (minus the seizures and her protest for sleeping). Her main problem today was that she was bored and wanted to play- wanted to move. 
However- she still has a ventricular drain, draining excess fluid from her brain- which in order to work correctly has to be level to her ear- making her ever changing positions quite a struggle. 
Luckily we had several visitors that made the day pass quickly and we both even got in a nap while grandma & grandpa kept the chubbs entertained. 
singing and shaking her arms to her favorite video

Emmaus has taken really great naps- I think that is the biggst thing I have noticed is REALLY different she is exhausted after playing, when normally she would just keep on going and refuse to sleep. 
Her drain was draining a whole lot (which helped keep down the swelling) so they changed the settings to make it drain less, however now the swelling is WAY worse. Kid looks like she got in a bar fight. 
We are praying we can get the drain out soon. It is really exhausting being in the hospital. 
I left with a friend to get dinner tonight and just take a break and as we were walking through a store I realized that my shoulders were killing me and that just relaxing them helped so much! I didn't even know I was tensing up. 
Emmaus & Emily -one of her (and my) favorite people- I know the pic is blurry, but I just love it cause they both look so happy (well Emily does, Emmaus is-but looks kinds like she is giving Emily the stink eye)
Emmaus still has had zero seizures since surgery. We are very excited about this and although seizure freedom is never a guarantee, we are excited with how she is doing so far. I am finding I am nervous to let myself believe this could be our new normal. But I really hope it is. 
I can't wait to get this girl home!

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Friday, November 16, 2012

Moving on up

Well I have been waiting all day to update until we saw the neuro-surgeon.
Emmaus did really well last night- she mainly just slept and then woke up for a couple minutes then slept again.
She had a fever over night, but has been fever free all day. She also had an elevated blood glucose level (230) and was having PVC's (an irregular heart beat). All of that turned out to be nothing. Thank God!
Today it took her a while to wake up but she is now very chipper- trying to pull out all her lines, playing with her dolly- eating 3 jars of baby food and an 8oz bottle.
(Her right eye is truly open in this pic)
We just saw our neurosurgeon- he said he is really happy with how she is doing & the MRI looks great.
Icing on the cake?! Zero seizures since surgery. Emmaus' seizures usually happen at the bridge between wake and sleep- she has done a lot of "waking & sleeping" in the last 24 hours- so we are pretty happy with those results.
Our neurologist explained that this does not mean she is out of the woods- the first 24 hours don't really tell us much- but we will know in the first week what the surgery accomplished.
As a mom I am super happy with 24 hours seizure free because I don't think she has had a seizure free day since before she started seizing.

She is very swollen and will get more swollen in the next couple of days. She will also get more brusied.
(Her daddy singing her a very sweet song not like my next example)

Her left ear is very low on her head due to the swelling- I am assured it will rise back up- I know this makes me a horrible mother or something but I just can't stop wanting to sing "do your ears hang low" to her.  (I guess since it is a temporary problem its probably okay!)
We were very nervous about our ICU stay- but it really has been great. But we are very excited to move to a more"wireless" setting on the med-surg floor.

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Thursday, November 15, 2012

Post Surgery night 1


Well our girl did great. No surgery complications or surprises. Surgery was a bit shorter than we thought it would be and truly the part that seemed the longest was from the point we knew she was done to when we could go back and see her. She has been very sleepy but has woken up several times. She prefers to see a familar face when she wakes up.
Her incision is bigger than I thought it would be- and honestly in a much different place than I figured. A headband should cover it nicely.
We felt so much peace today and we know it only could be due to the incredible amount of prayers and support we had. I seriously stopped looking at my phone/fb ect cause I just couldn't keep up- WHAT A GREAT PROBLEM TO HAVE!!
Emmaus is in the ICU now.
Couple of cool things- 1. Our surgeon was willing to pray with us this am and then thanked us for the prayers this afternoon.
2. Our nurse that is getting her settled in the ICU was a nurse who worked at CMH's recovery unit and that I got report from all the time.
It is just so nice to see a familiar face when I are walking into a foreign environment.

Thank you so much for your thoughts and prayers today. They truly have been incredible.
Okay back to my sweet girl. I will post a pic below. She looks super white due to blood loss- but hasn't needed a transfusion yet. She also will get much more swollen in the next few days.

Little one resting well.

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READY.

With dawn (or maybe the sun hasn't come up yet) comes a new day. A big day. We are ready.
I woke up early to avoid rushing this morning. To take my time. We have a king bed in our hotel room & Dan is all the way on his edge and Emmaus is spooning him- She's the big spoon. She loves to snuggle-especially her daddy.  She woke up a few minutes later with a seizure (like always). We are ready for our new chapter. For our post-surgery hopefully seizure free mornings.
I woke to a mound of texts, fb messages & comments. And we feel covered.
A friend sent us Phillipians 4:6-7 and then Ephesians 3- a chunk of verses I pray over Emmaus at night.

Here is Phil 4:7 
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

That is exactly what we need. Our hearts and minds to be guarded today. We slept well. We snuggled well. We are ready.


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Wednesday, November 14, 2012

St. Louis, MRI & my mommy heartaches.

Today was a long one- and I know it will have nothing on tomorrow.
We left our house early & got to St. Louis around 1030. Emmaus had a sedated MRI & then we met with her surgeon to go over details.
Everything went smoothly. The meeting with the Neurosurgeon to talk about details was a bit more of a reality check then I was ready for. (I kinda smirk when I type this-cause clearly I will get a reality check tomorrow regardless of if I am ready).

The medical stuff doesn't bother me- I get the risks, I know the standard set of complications- yada yada.
It is the mommy stuff that gets me.
The fact that my baby's perfect little noggin is never going to be the same- that she will have a big scar. I get a little emotional as I run my fingers in her hair knowing her scalp will have a large "ridge" come tomorrow. That her cute little pigtails will be absent for a time.

I think as parents we have such an instinct to protect our children. And while we are protecting her from her own body- from her missing gene sequence that is wreaking havoc on her- and ultimately it is protection...right now it doesn't feel quite like that.  I know my girl. She is fearless- she is happy and she is strong. I know all of these things are so much of a bigger deal to me than to her- but right now my mama heart is just a little sore, a little tired, and pretty sad for my baby.

That being said we feel so overwhelmingly loved. Our parents & best friends have come down for the surgery/recovery. We have about every person on the planet praying for us it seems. Seeing people's words of encouragement/prayers on instagram, FB & texts have been so amazing.
I feel peace tonight about her surgery. I know it will be a long few hours, however I feel peace.  And I feel hopeful.

Surgery starts around 10am tomorrow and will last about 4-6hours. The tuber they are removing is big- the size of a ping pong ball or larger- which considering her noggin size is pretty big.
I plan to drop my baby girl off in the capable hands of our surgery team, listen to my ipod and then watch some downton abbey (rumor has it I may or may not have myself a copy of season 3-AND I DON'T EVEN FEEL BAD ABOUT IT). So there it is.

Okay I am going to get back to my little girl who is rolling around on our bed just chatting my sadness away.

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Tuesday, November 13, 2012

Prayer & Twilight- Yes the vampire series

Twilight and Prayer- (If you haven't read twilight and you are planning to see the movie this will be a spoiler so BEWARE!)

So I sometimes compare things in my life to the Twilight series.  During my labor with Emmaus I knew in my head if I "lost it" there would be no return and often thought about how Bella turned into a vampire without making a noise and I used her as my example- and although I made some sounds it was a very quite peaceful experience over all.  (Yep I know I used a fictional character in a fictional circumstance as my birthing example- its weird I get it)

If you have read Breaking Dawn (the last twilight book) you know that Bella has special powers to protect her family, to cover them with some sort of forcefield or something. The last part of the book speaks about how she just stretches it over them one by one reaching further and further until they are all taken care of.

Well sunday we had a prayer time at our church for Emmaus & us before church started. For the first part of it everyone prayed aloud at the same time. I know it might sound weird- but it was so cool to us.  To hear the collective prayer of a group of around 30 people all at the same time was so powerful. Dan and I both felt so "covered". I could hear and feel the words lifted to the Lord pouring over me, covering me. Stretching to the places of our deepest fears. Protecting our little one. Helping us let go and trust. The words dug deep into the ground around us and planted seeds of hope, springing into beautiful flowering vines that grew up to surround us.  I left that time in awe. Feeling hopeful. Knowing we are so very covered in prayer. Knowing that was the voice of 30 and there are so many more praying.

We are 2 days from surgery. By this time Thursday miss Emmaus will be in the operating room. And we are feeling a bit nervous- but hopeful.
(I about chased two nuns down in JoAnns to ask them to pray for her- a classic example of my nerves-  I was at JoAnns getting the back to a quilt that I decided last minute she MUST have for surgery- again nerves)
Turned out pretty stinking cute huh!?!

But we know this is the best road for Emmaus and so we are ready to walk it. We are hopeful for her future- and that big development and seizure freedom may come from the surgery.

We leave for St. Louis tomorrow AM.  She will have an MRI and Neurosurgery consult tomorrow.


I leave you with this little face. Cause it surely is a cute one! 



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Thursday, November 8, 2012

Christmas shopping guide- giving TWICE!

You know it is going to be a good day when you eat a gourmet cupcake for breakfast- and I had coffee too- I always start my day with coffee. (one week till surgery- I think I have the right to cope with a cupcake for breakfast)

So I have been thinking a lot about Christmas. About how I want it to be more than just a fanfare of gifts, food & decor. 
I want to give back. We have been given SO MUCH this year- infact we have been given so much in life in general-

So why not give gifts that not only are fun to give, but that also help others.

Support small businesses. Support communities across the world, that are just learning to support themselves. Or how about supporting a family that is trying to bring home a baby?
Here are a few businesses, families, or ideas if you are interested.  (I am posting pics of my favorite items- I have expensive taste, but they all have things in a lot of price ranges)

(Gorgeous right?!?)


(A raffle to support an adoption- to win an american girl doll!) 






(This is an ETSY store where the proceeds go to TSC research!
They also do custom prints.)


*Hey Mom- I am pretty sure Emmaus may NEED these shoes- just saying*

So this year- think about giving twice! And shop early- so you have time to give meaningful gifts.
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Tuesday, November 6, 2012

The brain surgery deets


Well first off Happy Election day! 
I am so thankful to live in a country where there is freedom and democracy.
And that is all I am going to say about that!
Now a little break from election coverage to hear about brain surgery!




People have been asking me a lot about Emmaus' upcoming surgery. It is 9 (SINGLE DIGITS) days away. Which is very crazy- and nerve wracking.
So here are some details

What is she having done?
     She is having a left frontal tuberectomy. Meaning they are taking a tuber out of her left frontal lobe. It is the tuber that caused 37/38 seizures she had while she was hooked up to the EEG machine

How long is the surgery?
     We previously thought it was longer however we are very relieved that it is only a 4 hour surgery- 

Will they shave her head?
     They will only shave where they are doing the incision so besides the incision her sweet little hair should stay on her sweet little head.

So what will the incision look like?
    The incision will start behind her hair line on the left side and go straight back to her ear and curl around in front of her ear- kind of like a question mark

How long will she be in the hospital?
    Emmaus will be in the ICU for one night- barring any complications. Our total hospital stay will probably be around 4 days.

Will she have a lot of pain?
    A friend told me the other day that for their family this surgery was way harder on them as parents than on their child. If I have learned anything working as a pediatric nurse it is that children are resilient.   And generally do much better than the adults with them!

What will the surgery accomplish?
     Well that is yet to be seen- but we are hoping with better seizure control more development will happen. She is in the midst of a developmental spurt at the moment and it is so very fun and exciting. We are very hopeful that more development will come after surgery.

Do you have other questions?! Please feel free to ask. I will be blogging during our surgery journey. We are so glad to be sharing our story. To be living life out loud. We are hopeful Emmaus will have great results from this surgery. We are realistic and understand surgery is not a "cure all" for Tuberous Sclerosis- but we are hopeful non the less.


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