Friday, September 30, 2011

Praise you in this storm

I was sure by now, God you would have reached down and wiped our tears away. Stepped in and saved the day. But once again I say Amen and it’s still raining. As the thunder rolls I barely hear you whisper through the rain, “I’m with you”. And as your mercy falls I will raise my hands and praise the God who gives, and takes away.

And I’ll praise you in this storm and I will lift my hands. That you are who you are no matter where I am. And every tear I cry you hold in your hand. You’ve never left my side. And though my heart is torn. I will praise you in this storm.


Love this kid.

La

Wednesday, September 28, 2011

Out of control

So I am reading this great book on prayer. It is called "A praying Life" and is by Paul Miller. In the chapter I read today it said this-

"When you stop trying to control your life and instead allow your anxieties and problems to bring you to God in prayer, you shift from worrying to watching. You watch God weave his patterns in the story of your life. Instead of trying to be out front, designing your life, you realize you are inside God's drama. As you wait, you begin to see him work and your life begins to sparkle with wonder. You are learning to trust again. "

I am a control freak. I don't consider myself to be high anxiety, but I guess the reason I like to control my life so much is so that I don't feel anxious about what is happening. If I have a plan I can be calm. I like a plan...I don't like flying by the seat of my pants. When I am at work (I'm a pediatric nurse) one of the first things I do when I meet the family I am taking care of is letting them know the plan for the night. I feel like communicating what I am thinking and letting them know what to expect brings the best working relationship. I do this with God too. I often let Him know "the plan"- expecting that if He knows what I am thinking we will have a good working relationship. Problem number one- I can't see the big picture and He can. I can imagine God chuckling when I tell him "the plan". I can see him saying "Okay my child- you let me know how that is working for you" and about 25 seconds later when the plan falls apart he is there to pick me back up and share His plan with me.

With everything going on with Emmaus I can honestly say I have NO PLAN. I feel like with my life in general I have no plan anymore. I can plan on going to jazzercise in the afternoon, but if Em has a rough day with lots of seizures that is not something I can control and I stay home. If we have plans with friends but I am too tired due to a rough night, I cancel. If we are planning to go on a date and Em is having a rough day we stay home. I guess you could say I am learning to fly by the seat of my pants. I have learned over the last 3 months that anxiety does creep into my life when I am unable to make a plan. But I have also learned that being anxious does NOTHING (besides make me sad and miserable).
So I am learning to pray. I pray for Emmaus before she goes to sleep at night that she would not seize & rest. I pray for her when she wakes up. I pray for her when she is having a seizure. I pray for her development, for her minds protection. I pray that we would not be swallowed up with the grieving & hurdles in this process, but be overwhelmed with the Joy that this child brings into our lives. I pray for Dan on nights I work and he is at home with her alone. I pray for smooth nights at work so I am not feeling stress at work and at home. I pray for Dans job that it would become rewarding. I just pray. A lot. Cause that is all I can do. And I am switching from worrying to watching. I am working on discuss less, pray more.

Guess thats all,
Love, La
"Life's unexpected turns had created a path in my heart to God; God taught me to pray through suffering" -just one more quote from the book that is so so so true for me.

Tuesday, September 27, 2011

Victories!


Today we did this....


And I did this....
My super crafty friend Amanda showed me how! (I might have gone to hobby lobby to spend 5 dollars on the supplies I needed to make this wreath...and I ended up spending almost 20. Crafting is good for my soul and makes me happy so I guess it is worth it.)

And Emmaus did this!
Look at our girl! She has not been lifting her head up at all during tummy time (at least not since the seizures started) two days ago she would have been forehead to the mat...but not today! She was up looking around. I was so excited I almost cried. Baby steps...but we count it as a victory! And I couldn't be more proud or excited!

Love, La

Monday, September 26, 2011

3 months old!

Welp I waited till 11:20pm to start writing this post. The babes is sleeping in her car seat and will probably wake up at any moment demanding to be feed and then we will go to bed. Today Little Emmaus is THREE months old! I can hardly believe it! She has grown so much and changed so much in such a short amount of time.
I remember those first few moments so well. I maybe teared up a little looking at those first pictures today. I cannot explain the amount of joy this little being has brought into our lives

Being a mom is the best thing that has ever happened to me. And I know Dan would echo that claim.

Emmaus is such an easy baby! (TSC excluded-that is rough) She smiles, coo's and laughs. She has started playing some, batting at toys when laying on her play mat. She weights about 13.5lbs and is over 24inches long. She is nursing 6-7 times a day and takes about 5oz when she takes a bottle. I started back to work this month and Dan does wonderful with her at home on the nights I work. She sleeps pretty well at night usually we do our last feed around 11 and she will sleep till about 3, get up to eat and then go back to sleep until around 7:45am. She still sleeps a good amount during the day but she is awake for longer periods of times and likes to interact with us and play. She rarely cries and really only fusses when she is tired or hungry. (When she cries it sounds more like she is speaking in slavic than crying). She has great facial expressions and has a great scowl along with many versions of smiles. She is having anywhere from 3-10 seizures a day on average, but they don't seem to affect her overall alertness for the most part. Watching her seize is the hardest thing I do on a daily basis. Her head control is sometimes great, and sometimes poor. We work on it every day. We have started doing more tummy time to help her neck strength (she likes to protest during tummy time, but she eventually gives up and enjoys it or falls asleep). Rolling I think is probably a ways away for miss Emmaus. One step at a time.
We love you baby girl! We are so blessed to have you here with us. I can't imagine our lives without you. It has been a rough month but I would do it over again just to get to spend each day with you enjoying the coo's and smiles. You truly are a wonderful baby- you make us want to fill our home with babies. You are the best thing that has ever happened to us! I love you so much.
Mommy

That's all for now,
Love, La

Saturday, September 24, 2011

weekend


Dan and I went on a date last night. It was so much fun. Some friends from church offered to watch Em and we gladly took them up on the offer. We ate dinner at Port Fonda- mexican street food. They have the most delish food! Seriously YUMMY! They have a trailer they park in different parts of the city. If you live in KC they are a must try! I think they are only open on Fri and Sat evenings. check them out HERE. We then decided to brave the Plaza art fair which was CRAZY, but very fun people watching! And used a Cheesecake factory gift card that was 3 years old and went and got drinks and adult beverages. It was fun to just get to spend time together.
Let me say this though- although it was nice to get to have a couple drinks it was very sad to have to pump and dump. It was just sad to waste something my body had worked so hard to make. Oh well, It was worth it.
Today is cleaning day. However, I ran out of cleaner so I made some! My friend Emily had pinned some great cleaners on pintrest and so I found her board and just happened to have all the stuff to make it on hand. GREEN, CHEAP, and WAY HEALTHIER! Here is the recipe. I LOVED the job it did today!

The Manor's All Purpose Cleaner:
1/2 cup Warm Water
1/2 cup Vinegar
2 Tbsp Lemon Juice
15 drops Tea Tree Oil
The Tea Tree oil makes this cleaner a germicide, fungicide and anti bacterial

The rest of the day we have napped, grocery shopped, done the bills, the babes got a bath (we aren't wonderful at bathing the kid regularly- we are working on doing better at this.) - during bath time she pooped on dan. BAHAHAHA! And then this afternoon I am going to go help a friend clean- they have their home study this week and need their home to SHINE! And tonight we get to have dinner with some friends of mine from KSU! fun- weekend!
Here are some pics from the day

Morning snuggle time (Yes I am aware the back of her head is flat. The kid hates tummy time and I wasn't doing a good job of enforcing it. We have done a lot more tummy time this week)


Happy girl on her play mat! She just smiles and smiles at the toys. Today she was even swatting at them!

Chubby girl before bath time! (She loves bath time!)
Love, La

Wednesday, September 21, 2011

Things we learn along the way



So yesterday Johnson County Infants and Todddlers came out to see us. They are a service that has Occupational, Physical, and Speech therapy for children that are delayed or have a disease that may cause them to be delayed- TSC in our case. So our case manager and an OT came out to check out our girl. Pretty much they saw everything I have been seeing. Her head/neck strength isn't quite where it should be- she is kinda a floppy baby. She uses her right side way less than her left side. (When she was seizing really violently it made her right side flail a lot so it could be from this, or a tuber that is effecting her strength) She isn't really lifting her head up if she is on her tummy- she was doing this at 8 weeks, but not now. She also isn't rolling when placed on her side, which I guess she should be. And they got onto me a bit because the back of her head is kinda flatish-so I need to do more tummy time with her- whoopise! The kid hates it, so I haven't been good about encouraging her to do it. They were encouraged that she is smiling and cooing and making eye contact. They said she is tracking horizontally which is to be expected before vertically so that is good. It was hard to have a specialist confirm even what I already knew. And I know that it is going to be hard to see my friends kiddos pass her in milestones or for her to not hit milestones they have already hit in the same time period. I just want her to have a wonderful healthy normal life so badly. But I guess that is mostly in the perspective we take and what we make normal. Still stings.

So here are some things we are/have learned along the way

Dan and I give her meds differently and neither of us like to be told that the other persons way is better (although I feel strongly that my way is better and he feels his way is better)

Just because she is awake at night doesn't mean that we need to be awake- the kid loves to be awake, cooing and just chattering in the pack & play. We of course are up with her if she is upset, but she usually just falls back asleep quickly after her little chatter time.

It isn't worth fighting the thumb battle- she has found her thumb and loves it, despite me trying to trade her for a binki. I'm over it.

It is important to take care of ourselves in all of this. I have started going to jazzercise and it is seriously awesome. I get to spend an hour working out and taking care of my body and it is fun. I just take her to the childcare there. (Which they kinda freak when I tell them she has a seizure disorder, but I just assure them it is okay, that I am right there in the next room over and to come get me if they need me- so far so good)

And a few other thoughts- I get annoyed when there are dishes in the sink, even if I am the one that put them there. I like coffee ready when I get up- it makes my morning on days Dan has made some before he leaves for work. I pretty much fail at laundry- I have now forgotten to start the dryer about 100 times in a row. FAIL.
Speaking of fail...this is what became of tummy time. A nap with some good old thumb sucking! I can hear her snoring- poor baby has a little cold.
Love, La

Monday, September 19, 2011

Good Day



Today was a very good day. Emmaus slept very well last night. And then she was SO happy today! She took good naps, she played when she was awake. She was really alert and interactive. She was a normal baby. And it was just a great day. I got a ton of stuff done too. I had a sewing/craft day and that on top of a super happy, sweet, interactive babe was good for my soul. She had very few seizures today and that was also encouraging. Tomorrow the infants & toddlers case worker and OT come to evaluate Em. I am excited and nervous for their visit. I will be interested to see what they think of her and where she needs to improve. I am so thankful that Johnson County provides this service.
A few other random things
* One our health insurance assigned us a case worker to manage Emmaus' care...guess they thought we were costing them too much moneyl
*She slept from 1:30am until 7am last night. I felt to rested!
*Today I made 8 burpies, 6 onesies, and cut out the parts for two baby blankets- it was a super productive day.
Here are some pictures of the stuff I made and of my sweet girl. She is seriously getting so big! And looks so much like Dan it is crazy!
I love her.More than I ever thought would be possible.
Here are some pics of the onesies- I packaged the burpcloth/onesies as cupcakes. And then put them in a cupcake box. They turned out so well!




Then I just snapped a few quick pics of the little lady. She is just so big!

(She's cute too...did I mention that?!)
That's all for now.
Love, LA

Thursday, September 15, 2011

Tired

Gosh I'm tired. Tired....really Tired. And the hubby is tired. The last 4ish weeks have seemed like months...years maybe. They have been long. Very long. Going back to work has been harder than I thought, good, but hard. Last night was the second night I had been back and it was much harder than the first. Dan called me around 330am and said Em had been up all night. Yesterday afternoon she started doing this thing where she would fall asleep and then have a seizure that would wake her up...and she did that all afternoon. Only sleeping for a little bit. And more often than not wake up due to a seizure. Well She did the same thing all night. Never really sleeping between 9pm and 4am. (That is along time to be awake when you are not even 3 months old!)
So I was at work. Helping other peoples kids- when my own family was having a rough time at home. Yah- that sucked. Dan did a great job with her. I know he was probably frustrated at times (I would have been) but he held her and loved her and just was awake with her. (This really stunk because he was getting sick) Dan has pretty much been asleep since he got home from work. Poor man even has a fever. My mom watched Em so I could get some sleep after working last night so I am relatively rested...yet still exhausted.
The sweet babe is sleeping better today. We upped her vigabatrin dose again- I called today to let them know now not only is she seizing but it is preventing her from getting sleep. So they decided to increase the dose. We are trying to be optimistic that it will help. And in all honestly she has only had a few seizures today. Much less than the last few days. So that is encouraging.

The other day I kinda had a thought of whether people are still reading this? Still praying? I know I have been feeling kinda defeated. Kinda losing hope. I feel like this blog has kinda taken a doom and gloom turn. Hopefully it doesn't stay long. I much prefer to have strong hope and faith and write posts on the topic that I am confident that God will heal our daughter. However it would be dishonest to type a blog like that tonight. I think it has something to do with the tiredness. I get overwhelmed when I think that I feel this way after 11weeks. ummm how am I suppose to get through the next 11 years?! I can hear my friend Jess saying right now- "Jesus will give you grace to handle each step as you take it...but not a minute before you need it" She started giving me that advice way before I even knew Emmaus had TSC. (or I even knew about Emmaus) It has kinda become my mantra. (I don't even know if that word is spelled right-I'm that tired!) It is good advice and so true. So Tonight I am literally taking things hour by hour. Cause I kinda get overwhelmed knowing/thinking she may be up again all night- cause I'm tired...did I mention that?
Tonight I am thankful for the sweet daughter we have, the financial provision we have been given AND I am tired of dealing with TSC. (and just tired in general)
Go here http://wavybel.blogspot.com/2011/09/sweet-and-sour.html and read about AND instead of but- I needed this blog post. It is SO TRUE to how I feel about this whole deal.

Alright- its getting late
I am going to go feed the baby and probably fall asleep on the couch holding her...I should put her in her bed, but I would rather snuggle and enjoy that tonight.
Love, La

Anger and perspective

Well I did it. I came back to work. Last Friday was my first night and it went well, much better than this mama thought it would. I am so blessed to have a job that I love. I do wish I could get away with only working 1 shift a week. When I am at work I have no doubt that my once professionally minded self has left, and my priorities now lie else where. But I am thankful that I have a job and that it is one that I like.



I have kinda been angry this week. So many wonderful things have happened and we have been provided for in so many ways in the last 11 weeks. But I think I finally got mad. It started when I came back to work Friday night and I started thinking about how fast my maternity leave went...and then I started thinking about how much it sucked that we had to deal with so much in 11 weeks. And how i should have gotten to spend my maternity leave snuggling my sweet child with my biggest worry being getting her to sleep through the night. My biggest stress should have been getting her 2 month shots- not counting endless seizures for the last two weeks. (P.S. we still haven't gotten her shots. I have been told that seizure activity tends to be out of control on the days you get them so I have been to chicken to do it- and yes I understand if she gets measles she will have more seizures from that than getting the shots- but i am just not prepared yet for that day- I know I need bite the bullet and get them done)


Then sunday i got some perspective. My sister in law was telling me about a family they know who lost there baby at 35 weeks gestation. How they didn't get to welcome their sweet babe into the world. I think of other people I know who have known such great loss and although it doesn't make me thankful for what we are going through. It does give me perspective. It makes me thankful for our sweet daughter who despite everything she is facing smiles and coos and takes it all in stride. She's a fighter that one. And there is evident joy inside that child. And for those things I am thankful. I still freaking hate TSC though.


So I give you this. The "many faces" of Emmaus. She is a funny kid. Mira even got in on the action.





Shes pretty much the cutest. Just sayin.



love, La

Saturday, September 10, 2011

everything I need

Today I'm not really understanding why this is the road we are walking. Why this is the burden we have been given to bare.
Little one is having lots of seizures today. We increase the vigabatrin dose tonight. Hoping it stops the seizure activity again.

Jesus have mercy on this sweet little face.


When every step is so hard to take and all of my hope is fading away. When life is a mountain that I cannot climb. You carry me. Jesus carry me.
You are strength in my weakness, you are the refuge I seek. You are everything in my time of need. You are everything I need.
Love, La

Thursday, September 8, 2011

More Provision

When I was Pregnant and found out Emmaus had heart tumors and probable TS I remember feeling very much that God has always been faithful to me and that he would be faithful in this too. In the last couple months God has been faithful in so many ways. Do you all remember this blog in which I mention in the beginning that I was very frustrated with the financial crunch that having a sick baby brings?

Well here is what happened today. Earlier today I took a bunch of checks to the bank. I deposited $1300 total that was from extra jobs we have done, gifts people have given to us, etsy sales, ect. But it was 1300 of "extra" income that we could use towards medical bills we have. A little bit after that I was talking to a friend on the phone telling her how the 6k that I expected we would have to spend between now been decreased to about 2500 dollars
*We didn't have to spend the $1000 for our blood work cause it is covered by insurance
*We had $1000 in our HSA (which yes this is our money, but we had it taken out of Dan's check ahead of time, so never really had it, so it hurts less to spend)
*Then the $1300 of extra income we had earned/was given to us over the last few weeks
So that is $2700 that we owe.
Anyway, I was telling this friend how I felt so good about this amount. That God had been faithful. That we weren't having to completely empty our savings to pay for this and that only having to pay $2700 I was able to wrap my mind around the possibility for us to be prepared for January and having to have $5000 saved for Em's medical costs for next year.
I definitely was feeling blessed and thankful for how God had provided for us.
Then tonight Dan got coffee with a friend. The friend handed Dan a check from his parents in the amount of $2500 dollars. UMMMM WHAT?!?!
That right there is God's provision. That is God's faithfulness. That is God's people giving in huge ways to take the stress off our family. To provide for us so that we can focus not on working extra hours or cutting our budget even more but for loving and caring for our baby girl. So our 6k bill just turned into a 200 bill. Yep. I cried. (I'm sure you all are shocked that I cried...right?!)
*This week I haven't made a meal...infact I have 3 meals in the fridge/freezer to make over the weekend
*We went to St. Louis to see Dr Wong for FREE! Our Hotel was covered. And some friends gave us a 100buck gas card and 300dollars in cash for food, ect. (Which some of that went to pay for medical bills too!)
*People have ordered headbands, let Dan cut their lawns, Clean their garages, People have just plain written us checks! A friend gave me her babysitting Job this week that was the easiest gig ever and paid 850 bucks!
This is God's faithfulness.
And one SHAMELESS Dave Ramsey plug. Dan and I don't watch our finances so carefully because we want to be rich and retire by 40. We are careful with them so we can bless others. So that we can stay out of debt and have financial freedom. So we don't have to live paycheck to paycheck. We have had a rough couple years financially. We will probably always meet our medical deductible, but we will plan and save that money so it doesn't sink us. (we did this for our insurance cost related to my pregnancy and it was so freeing to know we had our deductible saved specifically to spend on that!)

Someday we hope to repay all these blessings we have received. To help a family that needs help. Because that is what God calls us to do. We cannot express how blessed we feel. How thankful we are. How strongly we believe and can say God has ALWAYS been faithful to us. And he HAS been faithful through this.
So thank you for helping. Thank you for letting God use you in our story.
Just wanted to share this sweet victory with you tonight
Love, La

Wednesday, September 7, 2011

Marriage

When you get married you stand next to a person you think you know, but truly that is a total stranger. Then you say vows that you think you understand but really have no idea what they mean or what you are saying.

I think it generally is hard on a marriage having a child. It is a period of adjustment, of finding a new normal. Experts say that the first 3 months are the toughest. But what about having a sick child? What does that do to a marriage? If healthy baby brings hardship does unhealthy baby bring devastation? Does the 3 month rule apply to unhealthy baby as well? Yah- probably not huh?

This weekend Dan and I did a lot of talking about Us. So much lately it has been all about Emmaus. Sometimes I find it is 3pm and I haven’t brushed my teeth and that is because when I was starting to brush my teeth __________ happened. (She had a seizure, the doctors office called back, the doctors office called wanting moolah, she started crying, pooped through her outfit, or about a billion other things could have happened.) So if my teeth aren’t even getting brushed how much effort can I be putting into to my marriage? This happens to new parents everywhere but I can also see that having a sick kiddo exponentially magnifies the issue. (Yes I realize it is gross I often don’t get my teeth brushed till later-so help a girl out and if my breath stinks offer me some gum or something)

We went through how we deal with stress. And how that is affecting the other person. Dan gets bossy which is kinda funny because he is the most laid back un-bossy person ever. But when he feels a loss of control telling me (or whoever is in his path) what to do helps him. Well it makes me CRAZY ANGRY. I don’t really do well being bossed around (I was sharing this with my mom and she said that I tend to get bossy too- to which I replied “no I am bossy all the time” ).

I tend to handle my stress and lack of control by organizing everything. Letting everyone know what is going on. Which leads to me being on my phone all the time. Which leads to be not being present (Which makes dan crazy annoyed). I retreat into sharing my life with others instead of sharing my life with my husband first. It is important to let people know what is going on, to be having people praying, to share our lives with those around us…however, it is not more important than a conversation with my husband, or time spent with him.

We talked about how we miss each other. How our focus so much being on our daughter, on not sinking financially, on trying to deal with the cards we have been handed leaves us exhausted and done at the end of the day. We tend to just retreat to an evening sitting on the couch zoning out and not being intentional about our relationship. We don’t really talk, cuddle, or even laugh together. We just zone out.

We have even gotten to get away without the baby a couple times in the last two weeks…yet that isn’t enough. We have to choose to be intentional everyday or else the gap we are trying to close in our nights away will just become too large to handle.

I am so thankful to have a man by my side that is crazy about me. (That I am crazy about too) Who loves myself and his daughter more than anything. A man who will work hard for us. That will fight to keep our marriage strong. A man that meant it when he said “till death do us part”. A man that is willing to do the hard work and talking that it takes to find a new normal for our lives and our marriage. Cause this is tough stuff we are going through.

Our Vows

I love you. I choose you above all others today and for all the days to come. I promise to love you and to show you everyday. I promise to encourage you as you reach for your goal and to help you if you stumble along the way. I promise to be faithful and to walk by your side through good and tough times. I promise to cherish our relationship and protect it from harm. Money and Ill health will not break our vows and only death will part us. I promise to pray for us and to walk confidently with you on the path God has chosen for us.

We wrote these vows together. And while we just modified traditional vows basically, we truly had no idea the promises we were making. We had no clue how much ill health and money would play a part in our relationship. From 3 months into our marriage we started encountering both of those things. I can’t help but smile at the last line. I am glad we had it in there.

I promise to pray for us and to walk CONFIDENTLY WITH YOU on the path God has chosen for us. – Amen to that.

Just some thoughts-

Love, La

cookies

Confession...I just ate three cookies. But they were oatmeal chocolate chip so do those even count as cookies?!? Surely I get some nutrition from the oatmeal, Right? What's that you say? Still made with butter??? OKAY FINE. I ate three cookies.
Right now I am watching my sweet girl have herself a mighty good time in her bouncy seat. She is cooing and laughing and trying to hit at the elephant dangling in front of her. She loves this chair- it vibrates and has music and has objects to swat at...a 2month old's heaven right?! She is so dang cute! Speaking of that cuteness we have been seizure free since Saturday night! She had one spasm that I saw but right before it was time for her meds. Only downside (which isn't really a downside) is that the vigabatrin has made her very alert and she tends to be very alert during the hours when most people sleep. So the last two nights she has been up quite a bit. Happy...but awake. Thus I have been awake as well.
Better awake happy than awake seizing.
I go back to work Friday. If you work with me and read this bring some goodies to work. It will make me feel better about coming back. (Okay probably not, but who doesn't LOVE to eat yummy food on a friday night shift?!?)
Love,
La

Sunday, September 4, 2011

EYEBALLS!


Psalm 68: 19,20
"Praise the Lord; Praise God our savior! For each day he carries us in his arms. Our God is a God who saves! The Sovereign Lord rescues us from death."
This is what our bed looked like last night. Yep we slept. All night! Emmaus woke up at 3am crying...not because she had a seizure...but because the child was HUNGRY! She cried when I changed her diaper because she was alert-not lethargic due to recovering from a seizure. The girl was hungry and so she cried. And that noise was music to my ears. I love that my biggest concern for her last night was that her fingers were so cold ! (She likes to sleep with her hands out of her swaddle now and man were those fingers cold!)
EYEBALLS!!! When Em was a few weeks old and started becoming more awake and alert I would say "EYEBALLS" when she would be really awake and alert. In a brand new baby you just rarely seem them! Well she has been so tired in the last few days we have rarely seen those baby blues . I am so thankful to see those beautiful eyes.
And that little smirk.

We know she isn't "cured" we know that there is no guarantee she will remain seizure free in the next days, weeks, months or years. We understand we have a long road ahead of us...But we also want to celebrate the victories we are having. And a night full of sleep, free of seizures, cries of hunger and frustration that she is having her diaper changed are all welcome things in our home. And huge victories that we will celebrate.
Thank you Jesus for your faithfulness- Thank you Jesus for your love.
Love,
La

Saturday, September 3, 2011

Provision and other updates

I joined jazzercise with a friend and I freaking love it. It is actually fun! Most of the leaders "chat" the whole time which lets me listen to whatever they are rambling on about and between that and trying not to look like a damn fool (I am super uncoordinated when it comes to aerobics/dance moves) - it keeps my mind off my own life for a WHOLE HOUR! And that is plenty enough reason to go, but it also burns around 600 calories in that hour!

So after meeting some people from the TSC alliance of greater KC (other families that are affected by TSC) pretty much everyone said CMH neurology is not the way to go with this disease. -I actually more heard- "get out of there as soon as you can" "get your kid to a TSC clinic to see one of their doc's ASAP" "CMH neurology steered us in the wrong direction for a long time" ect. Now- this being said I would also like to say that I work a good amount with CMH neurology and I have seen a lot of people that are very happy with their services. However- I think specifically related to TSC it is better to go to a TSC clinic. So I started calling trying to get into Dr. Wong in St. Louis on Tuesday. (I also had a couple gals from the alliance making phone calls/throwing our names out there on our behalf) on Wednesday I got through to his nurse Chris and she gave us an appointment for Friday morning at 9am. (She described herself as a bit of a bleeding heart). So Thursday I spent most of the day cleaning/packing and getting the mutt where she needed to go. And then around 7pm we headed out.
God totally provided for us on this trip-
1. My dad rented us a hotel room so we had a place to stay without shelling out 100+ bucks
2. Some friends brought us a goody bag of snacks and *some* moolah and a gas card for the trip (*when I say SOME I mean a lot-it was VERY VERY generous)
3. We had dinner provided for us before we left-which I cannot tell you how nice that was! I knew I would not have time to make something before we hit the road and it was awesome to have a hot meal that wasn't fast food before we left.
4. We got pulled over because we had a headlight out in the middle of Missouri somewhere and the office just asked us to get it fixed instead of giving us a ticket. (Dan may have thrown in that we were headed to see a Dr. in St. Louis and I was crammed in the back holding a binki in Em's mouth so I think he felt sorry for us)

We saw Dr. Wong. He didn't tell us he could cure our daughter...He didn't tell us the MRI looked great and that her brain tubers wouldn't affect her...but we still left feeling hopeful. He is going to keep her on the Zonegram but also add Vigabatrin for the infantile spasms she is having (these started on tuesday last week). Infantile spasms LOOK less drastic than seizures but are way more neurologically devastating. His nurse even got it delivered to our house TODAY! (remember it is a holiday weekend! That is good care right there!) The Vigabatrin has a 90% success rate in stopping the spasms...and it may or may not help with the seizures. We was able to tell us more about her MRI and that there is one pretty large tuber causing the seizures at this point. We was also able to tell us where it was and that the part of the brain it is in is very responsible for language. So we will have to be very proactive about developing her language. Dr. Wong was great. He sat with us for over a half an hour (even though he Squeezed us into his already packed schedule) he answered about a million questions. And he was very honest.
We also got to talk to another TS mom who had her 16year old daughter with her. They were very encouraging to see and speak with. ( I could talk for about an hour about this visit...but in interest of not making this a book I won't)

We (dan and I) have both started noting some delays in Emmaus. I know it has been less than 2 weeks since all of this started but babies just develop SO QUICKLY! I would say before the seizures started so 8weeks and 3 days- she was perfectly on target. In the 1 week 4 days since then we have seen her basically stop in her development and maybe even regress some. She is making less eye contact, her neck and trunk support is less strong (this is probably some due to meds as well) she is still cooing and smiling an awful lot though! Which brings us a lot of joy in this difficult season. The problem is she is just seizing SO MUCH! So she is seizing, and recovering, and there is no time for developing. We are really hoping the vigabatrin will help this. We need to get her seizures under control. The zonegram tapers up so we increase her dose to the final dosage tomorrow night.

We are doing okay. We are tired physically and emotionally. We are finding Joy in the little smiles and coo's and trying to enjoy the simple things in our life. All of this has definitely slowed us down, it has made us realize what is important and what we can do without cluttering up our lives. We have definitely felt covered by the spirit and continue to see God's goodness to us. I go back to work this week. I feel very mixed about that. I am kinda excited to be in a world where I get to help others again. For 12 hours I get to pour into other people and make their lives a little better. I have always love this about my job- but in a time where the tables have turned and at home I have to be so focused on my family and don't get to spend much time looking beyond them- it will be a nice outlet to get to "help" other people. But I am sad that I will miss hours with my precious girl. I am nervous that her seizures are not under control yet and that I won't be here to hold her hand through them. Dan will do great. He is a wonderful father- but I am also worried about him and the lack of sleep he will get. She seriously seizes a lot at night and I know he will be up with her holding her hand through them and then have to work all day. I know those seem like silly worries, but honestly they are there.

Please continue to pray for healing in her body. We trust that God has a very specific plan for us and for out sweet little one.

And thank you to all of you who have blessed our family in the last week. Financially, by bringing food, by offering to watch Em so I can take a nap, by calling doctors, or just reminding us that we are not walking this road alone.
We are so thankful.
Love, La