Wednesday, August 31, 2011

Asking for help

So I am TERRIBLE at asking for help. I think most of us are. We are raised to be independent and to be able to sustain ourselves. Yesterday I was on the phone with my friend Kelsey. I could hear her daughter in the background and then I heard Kelsey say "Do you need help Lila? Can you say Please help me mommy?". In that moment I realized the importance of teaching a child that it okay to need help doing something. Instilling in them that they are strong and independent, but that when it becomes to much it is okay to say "I need help". I don't know if I missed that lesson growing up, or just forgot it along the way. But I am relearning it now. Dan and I both are. We have learned that it is okay to ask for help. Okay to need help even. We are both givers- We would give you anything we have that you need because we love to do that. However, we are bad at receiving. Another thing we are learning in this time. It is instinct for us to say "no thank you" when people offer to bring us a meal - (even though be both know we will end up making a sandwich or mac & cheese because we are sometimes just too overwhelmed with all of this stuff to figure out dinner). We are working on asking for help. We are learning to say yes when other offer. Because honestly, it blesses us, and it blesses the person offering. (I know I LOVE when people let me do things for them when they need them)
Also- Woke up to this today (lets be honest- I was awake more than asleep last night so "woke up" is a relative term here).

Oh wow, Laurisa. You don't know me, but I "know" you;) I am a dear friend of Amy D. who you met at the TSC picnic, and I am fellow TSC mommy. My daughter "A" has TSC. I so wish you weren't walking this journey. I wish that your precious sweet girl wasn't being attacked by these stupid seizures.

I wish that I had the "magic words" to make it better, but the best advice that I can offer is to take it one day, one hour, or one minute at a time. Don't try to think about three years, or five years, or twenty years from now. I know that's nearly impossible, but there is GREAT hope for kiddos diagnosed with TSC today! Great hope!! I don't want to bombard you with information or advice because I know you are very overwhelmed. If you EVER need someone to talk to has truly walked a thousand miles in your shoes please don't hesitate to reach out to one of us.
My little girl just got on the bus and headed off to Kindergarten! She is resilient, courageous, and the absolute love and greatest joy of my life. She has changed so many lives, and brought many people to Jesus! I would take TSC from her in a heartbeat, but we refuse to allow TSC to steal our joy! Don't let Satan convince you that all is lost. . . that these seizures mean the worst possible outcome. Far from it! You will find the right medication and you will get them stopped! You may have to travel far from the safety and comfort of the halls of CMH, but there are experts in this disease out there who are making great strides towards giving kids with TSC an amazing life! Get your baby to one of them (a TS Clinic) as soon as you are able. (O.k.- that's the one little piece of advice I can't resist offering. . ., but so, so crucial!)

Hang in there, rely on friends, pray and stay in the Word, and know that there are many, many people thinking of you and lifting you up! (People you may have never met:)
Please don't hesitate to email me and I will send you my phone number!
God bless you and your sweet girl! You can do this!

Lisa, proud mommy of "A" 5 1/2 with TSC

And that right there is community people! I don't know Lisa, I couldn't tell you what color her hair is anything about her or her family (okay I lie-I FB stalked her once she accepted my friend request...her hair is brown- but the point is I don't know her personally...yet!) This is community at work. And not only a community of families with TSC but a community of families with Christ in common.
Jesus- Thank you for Lisa today and her encouragement.
Love, La

Tuesday, August 30, 2011

I know I've been quiet.

I haven't written...because I don't really know what to write. Or where to start. Several things have happened lately that have made me realize that when I hurt, when things get tough, I get quiet. Me- the one that is rarely at a loss for words...quiet? Sure I still talk, I can spew facts at you, or tell you all about what we have learned about tsc...but when it comes to my heart and where it is, need time to sort it out. I need quiet.The last week has been extremely hard. And while it has had its blessings and positive moments a lot of the moments have been scary as hell and I have felt broken and helpless in a way that I have never experienced.Emmaus started having seizures last Wednesday. When I saw the first one I knew. Something in my gutt told me it was a seizure. And honestly my thought then (and several times since then) was "wow, we are really going to do this TSC thing".When we found out about the rhabdomyomas we prayed that it wouldn't be TSC. When she was born and we saw the skin marking on her arm we still prayed it wouldn't be TSC. When the hypo-pigmentation spots on her legs showed up I prayed it wouldn't be TSC. We knew it was, but we also know that our God is bigger than our daughters genetic code. We have prayed over her every day of her life. My prayer has always included. "Protect her brain, make her mind sharp". I knew that her having brain tubers was likely, but I was hoping that her case would be mild and that seizures wouldn't be a part of her case. And Wednesday I realized that "we are doing this thing", we are "walking down this road".The first day of her seizing and our trip to CMH that followed wasn't all that bad. Yes watching your kid have a seizure is about the most helpless feeling you can have, but we handled it. Thursday she was knocked out and man did I miss her! She seriously was asleep for 24 hours. And when she finally opened her eyes and started to wake up I was so thankful to see her little eyeballs. I missed my smiling, cooing, crying, baby.
We got to come home Thursday night with a seizure med for her to take and an emergency med incase of prolonged seizure activity.
No seizures Thursday.
No seizures Friday.Saturday they started again. She had about 15 Saturday and every single one was awful. All I could do was sit there. Stroke her little head, tell her "it will be okay" pray for her mind to be protected, pray for them to stop & tell her I love her.
Sunday there were less, but still some. Then sunday night our church community gathered together to pray for her. It was really encouraging. This child is very loved. These people pleaded with the father. Prayed in faith for healing, and strength. They prayed that this little girl grow up to run and jump to laugh and play, and above all to know the God who created her. This little girl is very loved. We have felt that love. We have felt the prayers. We have felt an overwhelming sense of calm and peace in this journey so far.
After our time praying for her she didn't have another seizure for 18hours. It was a wonderful time of rest for us all. And 18 hours is a victory that we are thankful for!
Monday night was rough. She had several seizures in the evening and then multiple episodes overnight. She would often wake up seizing. It made for a very sad and restless night. I was thankful to see dawn come.This morning (Tuesday) I finally lost it. My heart is breaking for my sweet baby girl. I don't feel that it is fair she have such a huge battle to fight at such a young age. This morning she had several longer seizures and even though they were only minutes long-they felt like forever. I cried buckets this morning. The exhaustion of being up all night definitely played into my sadness and emotional instability. Thankfully we both (baby girl and myself) got rest today.
Our small group night was tonight. I almost canceled it. It felt so overwhelming to think about being with people, to try to pull myself together enough to just be with people seemed like a huge task today. I am so glad we didn't we had a great time with our friends. And then we got a chance to pray for her as a group again. It is just really encouraging for us to hear the words people are feeling & praying. It is encouraging to know we are not alone in this and people are walking with us on this road.Tomorrow we have her EEG. Which measures brain activity and will tell us specifically where in the brain the seizures are coming from.

I am thankful for our community that has surrounded us in this time.
I am thankful that God (and those in our community) has/have provided for us financially. We have been so blessed by peoples generosity.
I am thankful that this baby girl is in our lives. She is growing peoples faith. (another blog post soon on my thoughts about this)
I am thankful for my husband. He is a constant support. He loves me well. He is encouraging. He is kind and he is a great father. I wouldn't want to be on this road with anyone else.
And last but not least we are thankful for the prayers that have been pouring in on our behalf. Like I said earlier we have felt them. We have felt covered by the spirit. I have had mulitiple facebook messages from people telling me our daughter is on their church's prayer chain, that "they don't know us, but they are praying for our baby." It has been cool to see God's kingdom band together and pray for this sweet baby.

I think that is enough rambling for now.


Thursday, August 25, 2011

Sick baby

I mean even after 6 IV attempts, 7 Seizures, Ativan & Phenobarb... She still looks so damn cute! Poor baby girl. (But never without a headband) Watching your kid have a seizure is about the saddest scariest thing ever. (And that is coming from a nurse who takes care of seizure kids on a regular basis and isn't really scared of them at all.)

Be Still there is a healer. His love is deeper than the sea. His Mercy is unfailing. His arms a fortress of the weak. Let faith arise.
We will wait for God to move and have faith that he WILL move.

Jesus- Everyone is praying. Do your thing!
Finding Strength in Psalm 91 today
Love, La

Tuesday, August 23, 2011

The circle goes round.

So I know I already posted today but I just wanted to share this.

Last night I realized that we almost already hit our 5k buck out of pocket max(opm) for our new insurance (we switched to Dans in July because that is when mine ended) (when I say almost hit- we will by monday when Em has her MRI.) I knew we would, but I guess I had forgotten that our OPM was so high. We just got done paying our 3k OPM for my birth/pregnancy and now here we are with the 5k due for our new insurance- that I might add is only for July-Dec and then we will start over on our deductible and OPM in January (which I assume we will hit again quickly due to Em's frequent exams) We also were facing a 1k buck lab test for Dan and I to see if the TSC was genetic or just a fluke thing. CMH genetics warned us this probably wouldn't be covered by insurance. So that is 9k in around 3 months on health bills alone.
Well today I called the insurance company to just check to be sure that they wouldn't pay for our lab work and guess what?? THEY WILL! Genetic testing is part of what our plans offer! That is 1 thousand buckaroos we don't have to shell out! Which was a huge relief!
Earlier in the day (before I found out about the labs being covered) I was talking to my mom about all of this and the stress of it all and feeling like it's hard enough to cope with TSC and all that it involves, however to add financial stress just tips me over the edge of what I handle with grace. So she suggested not only that we ask God for provision(which we do) but that we get specific. So today I said to God in desperation- God, we need extra income! Please bring me Etsy sales. So a few hours ago I checked my etsy site to get an address for an order I had last friday (the only order I've had since I put my shop back up a few weeks ago) and I had TWO new orders for multiple items! They actually came in last night, but I was so busy crying about how life isn't fair (and comforting a kiddo who cried a lot last night too-completely unrelated to me) I didn't see them.But I'm glad I didn't. Cause this is what happened instead...
I hit a point of wondering if God even cares that we are struggling down here. To say to God- "we are faithful with our finances, we are responsible with money, we don't live outside our means, we live frugally, we tithe, we give to others generously, and yet here we are again-for what feels like the millionth time in 2 years of spending all our money on health costs- so what's the deal God?!" To have the conversation that we trust him, but NEED to see his faithfulness. And then when we get to this breaking point He shows up. He always shows up. He always provides and provides in the perfect timing. Almost as saying "Now watch me redeem this situation". And somehow I'm surprised?! This happens every time! God Moves. And we begin to be pulled out of the rubble that has been piling onto our spirits, finances, hope, ect.So if you are one of the people that bought off my Etsy site last night, or in the last week really, Thank you. Thank you! You were instrumental in re-instilling hope in my spirit today. I know maybe it doesn't seem like a lot to you, but it is huge to us. Now to tackle the other 5k we owe... Here is the link to my etsy if you want a headband!
Baby Steps. But forward Steps at that.
Grateful-Love, La
Oh- P.s. Here is a cute pic of Em- She is seriously getting so those footie PJ's.

Uncovering the good stuff

So today I am finding it a little hard to be grateful for what we have and for all that we have been given/all the good times we have had in the last 2 years. I WANT to blog about how rough it has been in the last 2 years and how whenever we get money saved and I think we are getting close to a house down payment, we use that money for medical bills- I could write a book about this...and probably would....HOWEVER INSTEAD I am going to make a list of some of the stuff we have been given and some of the good times in the last two years to publicly remember. And so I don't complain this whole post.

-Dan and I got married and had a beautiful wedding provided for us just over 2 years ago
-We found out that Dan had medical problems in the nick of time in the hidden blessing of appendicitis
-We learned about Dave Ramsey which has given us so much financial peace and freedom...even if we never get to buy a home due to medical bills that are ever present in our family-we at least are not in debt.
-We both have jobs, and good ones at that!
-We have never been in need..."in want" plenty of times.. but we have always had enough to have good housing, food, clothing, ect
-We got to take a trip to Memphis last fall and just spend a week together
-We both have cars to drive
-We have a beautiful daughter that has added so much joy to our lives.
-We have a dog- she is neurotic yet entertaining. And that's all I'm gonna say about that.
-We have a wonderful community that surrounds us as well as great families
-My husband is madly in love with me and would do anything to support this family. (He is also crazy about Em she is lucky to have such a wonderful dad)
-God has always provided for us- and he will provide now. (I just need to say that about 100 times today to get it in my head)

I think that is progress. Because when I woke up today I was grateful only for my husband and my daughter and nothing else...The rest was covered in anger and stress.

That's all for now,
Love, La

Thursday, August 18, 2011

Emmaus Update

Well we got Em's lab results back today. The results were positive for TSC. She has a deletion on her TSC 2 gene. We knew that this result was coming, but of course were hoping for a negative result. And even though we were not surprised by the news, we are sad. I was actually kinda surprised that I was sad about it- I knew it would be positive, however, I guess that doesn't make the burden any less big or the sadness any less real to hear the news for sure. I was at coffee with friends when I got the news and I wasn't even able to keep it together and not cry. Good thing these were good friends...and even though they weren't crying-their hearts were breaking with me. I am so thankful to have a community to support us, walk with us and help us get through all of this.
So after hearing this news I asked CMH genetics to check out how much it would be costing to get Dan and I tested to see if we carry the gene or if this is randomly occurring.
Em's test was 8857.00 yep you read that right EIGHT THOUSAND EIGHT HUNDRED AND FIFTY SEVEN BUCKAROOS....luckily hers is covered by insurance-however, our test won't be (most likely) because they don't generally find it medically necessary to test us (our procreation isn't on their priority list I guess). So I have been in a bit of a panic about our tests. I mean who can afford to pay almost 18k for a blood test. Not us. I have said a lot this last week that Emmaus may have to be our only child (biologically at least). And every time I say it it taste like VINEGAR coming out of my mouth. Today the genetics people checked on the cost of the test for me. 475 bucks each. AMEN, HALLELUJAH, PTL, THANK YOU JESUS! Less than a thousand bucks!? We can find that money. I can't believe it! The lab is WAY less complicated than hers thus much less expensive. Our labs might come back positive and we may not have anymore babies, however at least then we know and I can begin to reconcile to the thought of only having one biological child. But not being able to afford to find out...that would just stink.
So here is where we are at.
-Em has a positive diagnosis of TSC
Her current symptoms include
-cardiac rhabdomyomas (tumors in her heart- which we see CMH cardiology to make sure there are no complications that form over time)
-Ash leaf spots (spots of hypopigmentation that she has on her legs)
-shire green patch (which is a orange peel feeling spot on her wrist)
-We have an MRI of her brain scheduled for August 29th to see if there are any brain tubers
-Dan and I will have blood work drawn to see if we carry the gene or if this is a randomly occurring case.

We are so thankful that so far she is developmentally normal and and very happy baby at that. We ask that you pray with us that she would have no further symptoms/complications. That her brain and kidneys would be protected and that she grow up to be a healthy little girl.

We are thankful that the lab work is not 18k and that is a much more affordable 1000 bucks. We ask that you pray with us that her case be a randomly occurring case so that Dan and I can fill our home with babies- This is truly the desire of my heart and God's word says he cares about the desires of our hearts.

We are thankful that we have found out her test is positive and have gotten her scheduled for an MRI so quickly. Please pray with us that she is able to be swaddled and stay still for the MRI and that she wouldn't have to be sedated. (This request is for my peace of mind) And then of course pray with us that she not have any brain involvement.

Pray for Dan and I to make good medical decisions for her and that we would have good council on how to best proceed and move forward with her care.

If you are not a praying person, we still appreciate that you care about us and our daughter enough to check in and see how she is doing. Your support in that alone means a lot to us.

Here is another way you can help!
I have an etsy site that sells headbands (THEY ARE SUPER CUTE IN MY HUMBLE OPINION!) and there are a bunch of new designs. By purchasing a headband for your little girl you can do two things.
1. You can help our friends the Kautzi's bring home their baby from Ethiopia- they are adopting and 50% of the profits go straight to their adoption fund.
2. Help us pay for our lab test- like I said before it is 1000 bucks and although that isn't a huge sum of money- it is still money. The other half of the profit will go towards paying for our lab tests.
See- buy one headband and two families benefit in big ways! (cough- if you buy two or more you get free shipping, or if you can pick it up or work with me I will give you the shipping cost as a discount!)
AND your daughter will look super cute in her little headband!
**IF you have a baby I can also make all the headbands with elastic instead of a rigid headband!
If you are only going to do one thing. PRAY. We believe in a God that can heal our daughter. That will heal her. Even if we have a journey to get there.
And that's all for now.
Love, LA

Saturday, August 13, 2011

You say granola, I say green.

well we have been cloth diapering for 48 hours now and for the most things have gone very well.
Things I've loved-
* In 48 hours we have had ZERO blow outs! Before we were having at least one blow out a day. We have had several blow out worthy poo's but no blow outs. Which is great because poo is hard to get out of her outfits.
*I have already washed a load and they came completely clean! No stains at all-I was very impressed
*The wet bag situation was MUCH easier than I thought it would be. (A wet bag is what you put your dirty diapers in when you are out and about)
*At night when she goes the longest without being changed (around 5 hours) her bum was dry! The fleece insert really does a great job at pulling the moisture away from her body. This is a HUGE improvement from old school cloth diapers
*I don't care at all if I change her and about 25 seconds later she poops or pees. That really was annoying with normal diapers because I just see money being flushed down the toilet! Now I hear cha-ching, cha-ching. (See cloth diapering is green in TWO Ways! Reduce waste, save some moolah!)
* I washed the diapers in too much soap so she got a diaper rash. At first I thought it was something I ate or maybe the diapers themselves, but after talking to a friend who cloth diapers her daughter she said her daughter got a rash at first too and she found out it was because she was using too much soap. (You have to use a special soap on your laundry when you cloth diaper because oils can break down the absorbency of the diapers.) After we discussed how much soap to use I am guessing that was the problem.
*Since she now has a diaper rash I had to Re-rinse all the diapers and figure out a cream for her bum..
*You CANNOT use diaper rash cream with cloth because like normal detergent it will make the diapers less absorbent- So what you have to do is put some type of barrier between her bum and the diaper OR use disposable. We have done both. We used disposable last night and today have been using a barrier-
Speaking of barriers
I had to cut up an old t-shirt to put between her bum and the diapers to avoid getting the cream on the diapers today. (YEP- I know you all are saying "YOU ARE CRAZY!! JUST USE DISPOSABLE!") Since we have committed to doing cloth we need to find a solution and not just run out and buy disposable diapers anytime the kid gets a rash. (I'm not that crazy- We will use disposable if she is on an antibiotic and will be pooping 100 times a day, or when we travel)
*Another issue I ran into is wipes- When we are home, using regular diaper wipes is fine because we can just throw them away- however when we are out we have nothing to put the dirty wipes in (usually you just put them in the diaper and toss both!) So I am considering using some of those t-shirt squares as wipes when we are out and about. Because that way I CAN just tuck them in the diaper and wash them like I would the diapers.

So we had a little sample of Burts Bee's diaper ointment however, we ran out of that. So I found a recipe to make my own ointment. I am going to be mixing it up as soon as I post this, so I will have to see how it works. The first things the doc's in the hospital order for diaper rash is nystatin which is an anti-fungal. So this cream includes a barrier, an anti-fungal and a "relief" ingredient. If it works well I will post the recipe.
And lastly- here is a cute pic of my ever-growing gal. (I know she is always in those jean shorts, but they are just so damn cute!)

Thursday, August 11, 2011

So I've recovered from yesterdays Whine fest. I have half a mind to delete that post because it really was quite whiny...however, it was real life so I will keep it. Today I had my "six week" check up. Obstetrix group really provided me WONDERFUL care and I would recommend delivering at St.Luke's and that practice to anyone...however- I really hope my next baby can be born in a birth center and we can forgo the "high risk" classification.

So last night we took baby E swimming. My grandma had been anxious for us to come out and get her in the water- however due to the fact she seemed to have the ever lasting umbilical stump (Stanley) we were just now able to take a dunk. She really didn't mind it for the most part. The water was very warm. At first she cried, but after she got used to it she was actually pretty happy. We remembered everything for her but forgot towels for ourselves. I guess there is no better way to get used to your post baby body than to walk down the street in your two piece suit without a towel. Bah.

We also ran out of newborn sized diapers today. She is big enough now to wear her Bum Genius 4.0 cloth diapers. So here we go! We start our cloth diaper journey. I pre-washed them all today and she is now wearing her very first one! I love this color it is my favorite. It is a bit bulkier than her newborn diapers, but still fits well under her clothes. I was afraid they would make her clothes fit too tight.
I am planning on posting some on cloth diapering for those of you interested in how it is going- or for those of you who think I am psycho for cloth diapering!
Here is a little info on the diapers

*Initial investment was about 300bucks. And then I am guessing we will spend about 5-10 extra dollars a month in washing diapers. (Maybe that is a bit off, but its just a guess)
*We were spending about 20 bucks a box of 84 diapers and that was lasting 8-10 days. So around 60-75$ a month on diapers. So in order to make our money back for the costs of the diapers we will have to successfully cloth diaper for 5 months before we start saving money.
(HOWEVER, all of our diapers we got as gifts so we will start saving about 50-60 bucks a month immediately-yay! That's 720 bucks a year people!)
*I have heard these specific cloth diapers are SUPER easy to use/clean so I am not expecting a huge time or hassle investment
*So far so good- I mean lets be real...The kid has been wearing the diaper for about an hour. And nothing is leaking yet. She is still pretty little and I am afraid they will leak a little at first-lets hope not!

I really can't believe she is already getting so big! She is also getting really strong. She will sit on Dan's lap for long amounts of time at night just holding her head up looking around. She is just curious about everything! She is super smiley now too. Today she has been a total crank-pot...but she really just wants to be held. It has been good for me to stop all the tasks I make for myself and just hold my baby for most of the day. She is so sweet- even when she is a crank-pot. I've been bouncing a lot today- I just think of it as a good leg exercise.

And last but not least Dan bought me this super cute necklace from Waxing Poetic- I might be a bit obsessed with them. But due to the cost of their jewelry I haven't gotten a piece yet. Anyway it is a silver and brass heart that looks like is a wax stamp with an E on it. It reminds me of a poem I like By E.E. cummings
i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)

i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

Emmaus Anne- I carry your heart (I carry it in my heart)

I think that's all for now
Love, LA

Wednesday, August 10, 2011

For the love of God I'm not a hurdler

I remember sitting in my hospital bed getting to know my precious little girl when I first saw the spot on her arm. We were told that generally TSC is very easy to diagnose because the skin criteria that are common with TSC are usually present at birth and thus they can use those to help diagnose the disease. The spot is called a shagreen patched and is just an area where the skin has a raised bumpy texture. It almost looks like bad eczema. As soon as I saw the spot I knew what it meant. Although her blood work is still pending I knew it was a positive verbal diagnosis. It was a sinking feeling. A feeling of disappointment,sadness, and fear all wrapped into one. What are the odds right?! 1 in 6000 lives births, only 50,000 people in the USA, 1-2 million people total? And this is happening to US?
Well I got that feeling again today. I was nursing Emmaus and noticed another skin symptom. She has a couple areas of hypo-pigmentation on her right leg. I know it isn't a huge deal. It isn't like we found a brain or kidney tuber-however, it is just another thing that shows that she has symptoms showing up.
We have a MRI scheduled to check out her brain at the end of August. I am dreading it really. I'm super thankful that we got in quickly and will know better what is going on...but I am dreading it. I am fearful of what we might find. I am trying hard to trust God and be positive...however today I am Failing. Failing. FAILING!!!(luckily I had plans today and was distracted from my sad negativity).
My baby girl is so sweet. She is developmentally appropriate so far and I am so thankful for that! She is beautiful and has added more joy to my life than I could have EVER had expected. She is wonderful.
However- TSC is a bunch of bullshit. I feel like it is unfair that it is apart of our lives and that our sweet baby girl should have such a huge battle to fight at such a young age.
I think I am just tired. It really has been a LONG 3 years. We have had to fight a lot of battles and while we have had a ton of joy in those years & a lot of things to celebrate we have also had a lot of hurdles to jump over. I am tired of jumping.
Okay I think I'm done now. Sorry for the language . And for the whining that just happened.

Friday, August 5, 2011

Worry Wart

In this world you will have trouble. But take heart! I have overcome the world. John 16:33

Thank you Jesus! Man oh man did I need to hear that verse today. Yesterday was a rough day for miss Emmaus and thus for mommy too- really mommy had a rough morning today. She just was out of sorts yesterday. She cried A LOT. I have mentioned before this child doesn't cry. She gets fussy, she grumbles sometimes, but she doesn't really cry. I heard her cry more yesterday than I have in last 6 weeks combined! She wasn't super alert, she was grumpy and she was super hard to console. I wasn't sure if she was sick, or just uncomfortable, or what was going on.
Here is the thing. I know that babies having "off days" is completely normal. However, in our case I also know there is a high likely hood that even though she is a completely "normal" baby right now there may be a day that her "normal" changes a lot. So when she has an off day I think to myself- is this the beginning of her having neurological problems? Is this the end of "normal" for us? When she cries and it is high pitched and she grumbles and it is high pitched...I think does that sound like a "neuro" cry? (When babies have neurological problems their cry is different, it is really high pitched and shrill a lot of the times). I am pretty sure any of my nurse friends upon hearing her cry would say- "No its not a neuro cry" you are just worried.
WORRY. BAH. Can I say I hate worrying?!? I will admit to over thinking everything, I dissect things, and plan way to much...(my plans rarely work out) but I wouldn't classify myself as high anxiety or worrisome. And I think I would worry about a healthy baby- but GEEZ LOUISE having a baby with health complications I worry far to much and have way too much anxiety. I am working on it. Every day I am working on it. Every day I work on casting my cares on the Lord, laying my daughters life and well-being in his hands and releasing my death grip of worry. Cause I hate worrying and I hate having anxiety. Cause that's just not who I am.
I have the best friends. They keep me grounded. They encourage me to let go of the above mentioned death grip of worry. They love Dan and I and our daughter well. They pray for me- I mean I texted a group of people to pray for me this AM and seriously about 5 minutes later one showed up at my door to pray for us! Yah- that's how great my friends are. (Thing is I wouldn't have been shocked if any of them had done that!) I am thankful I have a community of people to walk alongside me in life. How do people do this alone?!?!
Today Emmaus is much better. She has been very alert, her UNcrabby self and even flashed me a few smiles. (Which pretty much makes my heart melt into a pool of mush!)
She is just the sweetest little gal. And I am so thankful to have HER as my daughter. Even if the little stinker causes me to worry.
Cast your cares on the LORD
and he will sustain you;
I think that's it for now.
Love, La
Oh- yah P.S. Stanley the stump seriously fell off about 45 minutes after my post yesterday- I guess he was just waiting for his day in the blog spotlight before his departure!

Thursday, August 4, 2011

Ode to Stanley

So last night was somewhat eventful. My friend Suzy had to make a sudden trip to the ER and didn't want to take her 1 week old baby girl (for obvious reasons) so June came to stay for a few hours around 4am and Emmaus and June (although unbeknownst to both of them) had their first little sleep over. They both slept the whole time...probably the last time that will happen when they have a sleep over- I say this only because I remember what it was like when I slept over at Suzy's house as a kid and there was very little sleeping. Sometimes there was me peeing my pants and getting a gazillion hives (another story for another blog post), or us sneaking a bit of champagne on thanksgiving, or dance parties to "brick house" or eating entire packs of twizzlers, or even watching the sunrise a few times...however there really never was a ton of sleeping. And when our girls add Clara Bury to the mix I am sure NO sleeping will ever happen at their future sleepovers.

However, even though that was eventful the purpose of this blog post is to give a little shout out, a little nudge even to our friend "stanley the stump" (don't be overly impressed...I named him solely for this post...however, if I knew he would be "hanging around" for so long I WOULD have named him for realz)


Stanley dear you did sustain,
However now I find you quite a pain.
You gave nutrients to my dear sweet girl,
But now look like poop and make me want to hurl.
By around two weeks they said you would be gone,
However six weeks later you are still on.
It truly is time for you to go free,
So baby girl can go to the pool with me.
So thank you for working hard for 9 months long,
But it is really time to head to the trash where you belong.

A Pic of stanley & Emmaus...just hanging around
Emmaus knew I was going to post on stanley so pointed him out to you all especially for this pic. Yes, I know she is EXTREMELY advanced for just shy of 6 weeks old.
(Don't judge her shanky looking belly shirt. We are just hanging out in the house today- I don't take her out looking like this!)

I guess I figure if I write her cord a poem it might FINALLY come off. PRETTY MUCH LONGEST LASTING CORD EVER...(actually her Dr. said she saw one stay on for 8 weeks! I can tell he won't make it that long)
Well, That's all for now,
Love, La

Wednesday, August 3, 2011

random ramblings

A couple quick thoughts as I must run out the door in about 2 seconds.
I have to use a lot more under-eye cover up than I did 6 weeks ago. Those circles are getting dark. Funny thing is- I was EXHAUSTED when I was pregnant and I don't even feel tired now...however I look tired.

I have to make my work schedule tonight. I could probably cry over it. I told Dan I only want to work once a week. He said nothing. haha. I do want to work some...but even trying to find two days a week to work is kinda difficult. (I am trying to avoid child care-which will make the above mentioned cover up and dark circles much more present)

I pretty much love being a mom. It could be that I have an extremely easy baby- but if we didn't have to wait to do a bunch of genetic testing on dan and I- and if we didn't have health complications with Emmaus that may need a lot of attention in a few months I would totally get pregnant again soon. Like before christmas soon. Yah- Yah- I know, I'm mental. However, I would.

Speaking of health complications- The more I read about TSC the more I want to punch it in the face. just saying. It kinda infuriates me. However, we are going to get to see CMH genetics before 9 months now. Which is a huge blessing. But even the thought of having to have my baby get an MRI under anesthesia makes me nervous as all get out. Yah-again, I know ship other peoples kids off to MRI all the time at work no problem...but I'm a huge wuss when it comes to my own kid.

Speaking of the kid... look at this pic.
She gets so excited sometimes now. Loving her smiles.

That's all for now
Love La

Oh one more thing- Yahoo new and the news on TV need to get there stories together. I will read about one thing on yahoo and then see it on the morning show a week later...or vice-versa. its old news then! (Yah-that's how busy I am now...I watch the morning show)

Monday, August 1, 2011

miscellany monday

Miscellany Monday @ lowercase letters
hop on over to carrisa's blog and link up!
A Few random thoughts for Monday

1. It is a full time job feeding a baby. (A job I am very thankful to have...but it is a full one)

2. I ran my first post-baby mile today. My time was TERRIBLE...but It didn't feel terrible and I ran the whole thing. I am going to have to improve a lot to run a 28min 5k in Oct...but I have time. Glad to have mile 1 under my belt though!

3. Nothing makes me flinch like the sound of my baby farting when I am changing her diaper. I realized last night that I close my eyes and mouth and kinda move over when I hear it. Opening my eyes only when the toot has stopped and assessing the area to make sure I am not covered in yellow speckles.

3 1/2. -Speaking of that...the kid has a knack for peeing and pooping AS SOON as you lift her little legs up to change her. It is incredible really. Her diaper can be soaked and full of poo and she will still let the streams flow and shart all over you! Good thing she is so darn cute. Come to think of it...she never does this at bath time when she is completely naked. Odd.

4. I have become very superstitious when it comes to the wee one. For example- At night I will not change her RIGHT before I put her back to bed. If she poops while I am feeding her I stop feeding her, change her and then finish feeding her (This can waste diapers cause sometimes she poops again-which is a huge bummer). However, I have found if I change her right before I lay her back down she pops open those eyeballs and looks all around and quickly announces it is wake time. (She is getting better at soothing herself and sometimes will even fall asleep from this state, but not often enough for me to let go of this little ritual-mama likes to sleep at night!)

5. We got a Trader Joe's in our area. At first I didn't understand what all the hype was about. It isn't a store you can you ALL your grocery shopping at and seeing as I already go to two stores to shop (Aldi for most things and Mexi-chopper for all the things you can't buy at aldi- mexi-chopper is the price chopper by our house. It is amazing and has the most impressive produce section EVER!) I wasn't thrilled with the idea of it. Plus- while its prices are better than whole foods It still is kinda pricey. However, my MIL gave us a gift card to trader joe's and they actually have a lot of cool stuff. I mainly got "luxury" items I wouldn't buy on a normal occasion, but I got a couple of things to make fun meals that are outside of our normal meal routine!

We had a fun weekend that really had no agenda-which rarely happens. It was nice and relaxing.
I guess that is all for now.
Love, La