Share each other's burdens, and in this way obey the law of Christ. Galatians 6:2

      It doesn't seem fair.

I've been following 3 month old baby Chaia's story. Today they did a PET scan, and it showed her heart is more damaged than they originally figured.

I want to ask "Why God?" But her parents have such a heavenly perspective. They count it as joy to go through these trials.

 I remember God's grace carrying us through during those early months of Riley's diagnosis.

But we weren't looking at such a serious, dire prognosis. 

My mama's heart is in pieces for this family. I cry throughout the day and fall to my knees begging God to work a miracle here. 

It's all too close for comfort. Watching their video's describing their days at the Cleveland Clinic filled with up's and down's, bring rushing back all the emotions that flooded me during our stay.

 The scariest days of my life.

Less than 10 months ago,

but they seem like years ago.

So much has happened since then!

God has been very good to us.

 But He's a good God, and no matter His plans for us, he will always be good and loving. 

Ben ( Chaia's dad) said something in one of his video clips about believing in the character of God.

 It has stuck with me.

I just pray that God will choose to let her live a full life and receive glory through the medical miracle she can be.

If there is one thing that I HATE in this world, it is children suffering.

I see God using Chaia's story to draw me closer to Him though. He is a rock. The only One you can count on in a world gone mad.

              God brought this verse to mind tonight

concerning Chaia...

"Now unto him that is able to do EXCEEDING ABUNDANTLY above all that we ask or think, according to the power that worketh in us,".. 

[Ephesians 3:20]

Count your blessings. I'll be counting mine...

                                           Goodnight

You can click on this one to stay up-to-date on Chaia!!!

http://mustardrevolution.blogspot.com/2011_10_01_archive.html

For God hath not given us the spirit of fear, but of power, and of love and of a sound mind.

Well, you know what they say.."no news is good news." But i have missed blogging. I think i'm going to wean myself off Facebook and spend more quality time writing and recording my life between here and my journal. What do you think?

It's 2am but my mind is full and my heart is heavy. I was introduced via blog to another little family with a very sick 3 month old daughter, Chaia. She has a very, very rare genetic disease with only 108 (?) known cases ever! She is staying at the Cleveland Clinic, 1 floor below the one they had us on in January and then in March. She is adorable! The disease has affected different areas of her body but the biggest concern is her heart. They will be doing a PET scan tomorrow (Thursday) at 12:30pm to determine if she'll need a heart transplant or if the cells will rejuvenate themselves and make her heart stronger. It is pretty serious..thus heartwrenching. But I can testify of their amazingly strong faith. I love how when God is putting you through trials of fire His grace is overwhelming. I don't know how else we could get through it. Anyways, PLEASE, PLEASE pray for this angelic sweetie tomorrow particularly at 12:30pm. We don't even want to entertain the thought of what could happen, and we know without a doubt that God is more than capable of healing and restoring. Pray with me please. You can follow the dad's blog at mustardrevolution.blogspot.com

   I'm not sure what it is. Perhaps it's hitting the one year mark; reminiscing about that time of year when 9 months of waiting and loving this fluttering, kicking, hiccuping snuggle-bug actually came to an end and she was born. The first time I laid my eyes on her and the moment I finally got to hold her. Nursing her, our eyes locked on each other. Without a doubt, thee best day of my whole life. Or maybe it's because we're getting closer to the winter months, that time of year where I had the worst day of my life. The day the dr's informed us of Riley's diagnosis with TSC. The overwhelming fear of the unknown and something harming my baby. Me feeling completely helpless to protect her. Here's the bottom line. I'm scared. I feel like it's been too calm for too long. I know that's a waste of time, worrying; fearing something that I don't have to deal with yet, but i can't help it. That's what i hate about TSC. There is no cure. There is no remission. Tumors could be forming as I write.

   Riley IS doing pretty well actually. She never did get those feeding tubes. The next visit, she made the leap into the 15 lbs and Galen and I felt as long as she's gaining, we're not doing an invasive surgery. She hasn't been weighed at a dr's office for awhile. But last time she was 16 lbs. Most girls are 20 lbs by 1 year. Not our Riley. I weighed her on the scale with me today and it looked like 16.5lbs. I'm avoiding her pediatrician because he is gung-ho feeding tubes. She is skinny. There's no doubt about that. But i don't think she looks unhealthy. Her new nickname is "skinny-minnie" :). People are still shocked to hear how old she is when looking at her. :(

  Now here's some super-duper news! Riley is STILL seizure-free. 6 months, baby!! We are tapering Keppra. But after that is done she will only be on one med, Topamax. I wish it didn't affect her appetite so much... :-/ I honestly think, no, know how good we've had it these past months and I'm afraid I've gotten so accustomed to this norm. Sick kid? What? Where? The other day, i just thought back to what her seizures looked like. The pain, the discomfort, the confusion which quickly led to a loss of the few skills she had at the time such as smiling, cooing, and waving her arms. My baby has come soooo far! She is 12 months old and wearing 12 months clothes [major growth spurt UP]. I still have to use a safety pin to keep her pants up. she is walking along the furniture...al-most walk-ing! She smiles her face off...seriously! The sweetest, most affectious giggles. {Peek-a-boo is the bomb!} She still has not said anything. She makes noises enough but not what they'd expect at her age. There's some concern in this area because of where one of the tubors is located. It may be affecting her speech. She has until 18 months before they'll introduce speech therapy. Her physical therapist is a darling-dear! Riley loves her. She now comes every other week because Riley is not really considered behind anymore. She's not advanced by any means but nothing concerning.

    Well that's about it folks! Galen's still working like the hard-working man he is and I am loving fall and the slower pace that comes with it! We will be remodeling a couple rooms upstairs and rearranging our house a little before winter. My interior decorating side is cyked about that! Oh, and I will post pics of Riley's 1st birthday party...hopefully tomorrow. Ok, must retire now. Remember to pray for Chaia please! Love you!

(Rachel, I owe you big time girl! Have not forgotten about you!)

The day we decided to get Riley a MIC-KEY Button

I'm not okay. I'm not okay. I can't smile this away. I can't be strong when every muscle in me feels weak. Don't get me wrong, I will be. I'm a mom. I have to be. But in this moment, all by myself with the laptop, closed off in our room, I will be weak and that's okay.
  This morning we drove our hour and a half drive to Cleveland to see a pediatric gastroenterology specialist to evaluate Riley. After months of pushing this visit off and doing my absolute best to plump up my baby on my own, we succumbed to the inevitable. Our name was finally called, and as we undressed her for her weight check that evil hope resurfaced. She felt heavier, right? Her face looked rounder, right? "No, you fool!" The scale mocked me. Riley weighs 14.8 lbs. She lost 5oz in two weeks. Nothing new there.
  The GI specialist came in a little while later and she didn't waste any time in discussing feeding tubes. The MIC-KEY button is our best option for Riley. She started crawling a couple weeks ago and since then, there's been no stopping her. She's into everything! Having the tubes stick out of her nose would just be asking for trouble. She had some more blood work today just to make sure there wouldn't be any other issues affecting her weight gain. We have a couple follow up visits before the surgery. We are putting it off until the end of August. Maybe the beginning of September. It's not a big emergency and we have a lot planned for August. It would be best if we were home and settled before she gets the button. You never know what might happen with something new like this.
 I should say that both Galen and I went in there pretty determined to hear them out, but not to budge and give in to the feeding tubes. But after the specialist showed us Riley's growth chart and how now not only was her weight being affected, but also her height and head circumference, we felt their alarm too. Galen and I asked one question right after the other, and although it will be a challenge and heart wrenching, we want what's best for our Riley. The Dr also stressed how important it is for children with neuro issues to have the best nutrition in the first two years of life. Riley hasn't been getting that. On average she eats 15 to 20 oz in a 24 hr period and that's just not enough for a growing, now crawling (almost walking!) baby.
 We will be seeing Riley's cardiologist this month on the 28th to have a follow up on the three tumors on her heart. While there, we will also be asking his clearance for this procedure considering she will be put under anesthesia. Riley will be getting her weight checked that same day.
 I'd like to leave you with a few happy reports. Let's see. Well, I'm not sure this is a good thing but it's sweet for me. Riley has turned into this big mama's girl! Now that she crawls, she follows me everywhere! When I took a bath tonight, she sat outside the door! She is still doing great at her physical therapy each week. Cathy (PT) is so impressed. Riley is standing near the couch and it looks like walking is her main goal right now! I will admit, she has accumulated far too many bumps and bruises for my liking with all this "trial and error" moving! But how else is she to learn and she wasn't meant to be in a plastic bubble! She's on the verge of talking, but nothing I can really call a word yet!
  I forgot to mention that after the GI specialist, we were seen by a dietitian to help us until she gets her tube. She gave us some great ideas to fatten her up including ice cream, pudding, cheese wiz on her puffs or frosting, extra butter in her veggies, extra sugar in her fruits, fruit pie filling, and avocados! She also increased her formula concentration a tad.
 Alright, major headache from crying, so I need to drink some water and get some sleep. I don't want to sound needy, but I could really use some more love and support through all this. Those closest to me know how badly I didn't want this. But I know I did my best and now we have to accept the best help they can give her to prevent other, more major issues. I can't help but feel that sometimes people like to hear the gory details, but once they get them, they're off sharing them instead of being there till the next post. Again, I'm strong because I need to be and I know for the most part I look like I've got it together but there are plenty of days where I'm overwhelmed all alone. Many of you are far away and I know you care. Your love and prayers ARE priceless. Again, I'm not trying to sound needy, I just know it's going to get harder from here on out and I would rather bare my heart than wallow in depression all alone. As always, much love from Galen, Riley and I!

As depression sets in and my desire to do anything productive fades away, I am left sitting here at the computer desk battling feelings of numbness and waves of emotion. At Riley's 9 month check up today, one of my worst fears I tried so hard to fight stared me in the face. As I laid my baby on the weight scale, the nurse asked what my guess was. I responded that I was hoping for 16 pounds but would be happy with 15 anything. She announced 14.13 and my heart dropped. I knew her pediatrician would not be pleased with this and I beat myself up for not trying harder to get her to eat more. As I put a fresh diaper on my underweight baby in our small exam room, I wondered what our next step would be.

A FEW DAYS LATER...

The appointment I was speaking of above was on Monday. This is Friday. So I am not in a state of shock anymore. In fact, today when the nurse called to inform me of the appointment they scheduled for us with the GI folks in Cleveland, I canceled it on the spot. After a lot of  consideration, we decided it was not an urgent need. Riley is thin, yes. But so far it has not impaired her development or her growth. She is a very tall little girl and her head circumference is growing like normal. Galen and I are going to be very pro-active with feeding Riley and expect to see a difference. Sometimes, it's hard when you have such an easy-going baby because she hardly fusses. Plus, her primary seizure med, Topamax, decreases hunger. So that's not doing us any favors in the weight gain area! We feel there are clear explanations to why she's not gaining weight. (Medications, genetics,etc.) Galen and I both see where we can step it up a notch and help her. The pediatrician is trying to head off problems before they happen, and I appreciate that, but they're not here yet. Riley is still seizure free {YAY!!!} and is crawling. The PT says she really is not behind developmentally. She's just not advanced. Anyways, there are more details but it is late (?) or super early depending how you look at 12:25am. Bottom line, I'm tired and need to get some zzz's.  I'll try to blog more! :(  I won't feel so overwhelmed and you will be filled in more. Even if some details are trite. Good night!



Riley and Mommy at Daddy's first truck pull!



Riley in her new sleeping position!



Two Perfectly Normals

Quick post because I love you guys and want to keep you informed..and I have dishes waiting for me in the kitchen! We went to the Cleveland Clinic Main Campus today (1.5 hour drive) for Riley's appointment with her Opthamologist (eye dr), Dr. Paul Rychwalski. We were instructed to have this follow up vision check up since Riley no longer takes Sabril (Vigabatrin) to see if her eye sight was affected. We were very happy to hear that her vision is perfect, like her first check up before starting the drug. Which ofcourse was a relief and what we had hoped especially because of her short time on it (less than 3 months.) So glad that's behind us and not something else we have to worry about at this time.
  Also, wanted to share with you the results of my genetic testing. I called today since it had been a couple weeks past their expected deadline to have the results and be able to tell me. I was so glad to hear that I am NOT a carrier of TSC! My blood work showed I was in "the normal range" whatever that means!. We're leaning to not getting Galen tested because of the rarity it would be for him and his sister to not show any signs of the disease. 33% of TSC patients get it from a parent while 66% is new genetic mutation. So it would appear that somehow while her genetic makeup was forming, the TSC 2 gene was mutated. After considering this, we've decided to have more children in the future and make more cute babies like Riley! Adoption is always an option though! Alright, well we'll see how her weight check goes tomorrow. Not too excited about it. I started her on fresh goats milk today. I want us to exhaust our options before feeding tubes! You'll here from me soon! Again, prayer's appreciated!

Discouraged, but not Defeated.

 I hate this disease. I HATE Tuberous Sclerosis Complex. I want to sit here and write a string of curse words to describe my frustrated feelings about this awful, merciless disease. But I won't. It will do no good. So I'll share with you; my amazing, always loving and encouraging friends, the latest on my sweet, little trooper of a daughter, Riley.
  Yesterday (Tues. May 10th) was Riley's weight check-up at her pediatrician's office. First, I need to tell you that Riley has been eating sooo well these last two weeks! Three jars of stage 2 baby food, plus three 4 oz bottles of the richer formula a day. I thought this was good. Galen and I both thought we saw a weight gain in her face. So imagine my SHOCK when I lay her butt-naked on the scale in that small dr's office room, watching the number's fluctuate for a few seconds, only to land on 14 lbs exactly!!! (She lost 1.5 oz's) "What?!"..I'm thinking. I was so tempted to ask the nurse if she was sure the scale wasn't broken or off. But instead I picked Riley up, put back on her pamper and took a seat in disbelief...and fear. The nurse cataloged the pathetic number in their computer and left me in a quandary. What was I doing wrong?! This was the most I had seen her ever eat. I was sure the baby food had more calories than the milk and she really was enjoying it. Hmm. Well, our very attentive pediatrician, finally made an appearance 20 minutes later. As he took a seat, he informed me that he had taken the time to talk to the visiting pediatric neurologist that visited the office that day. Asking him if there was anything related to TSC that could affect Riley's weight gain. He did say that if one of her tumors was close to her hypothalamus (the part of the brain that controls growth and development) it may be a cause for her lack of real growth. So after viewing her number's and seeing that not only had she not gained, or even stayed the same but LOST weight, he proceeded to tell me my limited options. She can come in at night and get a feeding tube put down her nose and into her stomach and get those extra calories throughout the night. Or she can have a surgery where they insert a feeding tube into her stomach. Um, NO WAY JOSE! Not a freakin' chance!!! So yes, I have one week to get her to gain something; anything! Even an ounce would be promising! Or else we will need to try one of these more drastic options.
  So yup, that's about it. Oh, and Dr. Strong (pediatrician) did some research and amazing, crazy math skills and configured that Riley's calorie intake in a day is only coming out at 400 something calories when ideally she needs to be consuming 900 something. So baby food is out of the picture until we get her to the weight needed for surgery. The way he has me prepare her formula is almost double the regular dosing, so it makes it so much more nutritious and fattening. I need to go from 12 oz's a day to 28! Big jump. It doesn't help that she won't take more than 4 oz's at a sitting, and boy have I tried! So we are aiming for six 5oz bottles in a 24 hour period. It is almost 8pm and she has had 13 today. So if she doesn't consume our goal 28oz during the day this mama is setting an alarm for night time feedings. I'm going to do everything I can. Then if it comes down to those nightmare options, I'll know I did all I could do.
  Next Tuesday (May 17th) is our deadline. It's not long at all, so please join me in praying for our peanut! That brain surgery HAS to happen, and July is right around the corner. FYI, Riley weighed more at the end of January when she was first diagnosed with TSC at the Cleveland Clinic. At 14.8 lbs. I won't lie to you, this is getting harder. On both Galen and I. Last night we confessed our arising fear. Losing her. We never would have imagined we'd be facing this issue with her health, and that's what I hate about TSC. You  just never know. I'm trying to have faith and trust God. I know He would never allow us to bear too much. But I fear He's going to push me to my limits. But alas, He is a loving God, and that is one thing that I've never taken into question through all this. I love Him. How could I not when He's given me this darling little miracle who gives me so much joy and astounds all of us with her fast learning capabilities. (Totally impressing her physical therapist, Audra, these last couple weeks!) Again, loved ones, we CAN NOT thank you enough for all the prayers you send up and love you give us. We love you! I'll keep you updated.