This past week

My Tuesday started at 5:30am going to a meeting with the Concerts of Prayer Board at 7am at Steak and Shake. It was a good meeting.  These early meetings are seeming earlier and earlier and the time change doesn't help this week!  Samuel came and picked me up after taking Lowell to work.  He ordered some breakfast and then we headed to his OGT testing today in math.  There were men working upstairs right above them while they were testing... plus they were keeping me awake while I was trying to sleep in the lobby... :o)  Just a slight distraction for him.  Today was Samuel's 2nd day of OGT's.  Going fairly well.  I guess part of homeschooling him is not always giving him time limits on tests, so there's maybe some extra pressure with that.  We'll see. Three more days of Writing, Science and Social Studies.  Is Ohio alone in this endeavor to torture, I mean, evaluate if the students are ready to graduate?  I think this came about a few years ago with the No Child Left Behind program.  Not sure, but the instructor said they attempt to make them slightly harder every year.  Don't particularly understand that strategy, but who am I but a complaining parent right now.  :o)  I do think it's great that you can't get your diploma without knowing the basic subjects.  I know there are high school students that can't read or write well, so I shouldn't complain.  From the writing skills I see on facebook, I think there's a huge gap in basic grammar and spelling.  I know there's shortcuts and all, but I truly think some people think that's how words are really spelled... OK, I will get off my little soap box of a rabbit trail... moving on. :o)

On a completely different note, I had quite the amazing moment last night at our grocery store, Giant Eagle.  We were walking through the produce and I heard someone say, "Are you Linda?"  I looked at someone I didn't know and said yes.  She said she recognized me from a friend's page on facebook and my blog they'd shared.  She wanted me to know they were praying for us and was encouraged with how God's working in Cayla's little life!  Isn't that just sweet?!  I told her about my appointment yesterday and  talked to her a little while.  I went to find Lowell and Samuel and couldn't keep a smile off my face.  I feel so blessed by the family of God.  We are a family even if we don't know each other personally.  I found so much comfort in that short encounter last night.  God is amazing how He orchestrates our lives.  :o)  And, Ellen Kolman, it was a friend of yours that read the blog you reposted on facebook.  Oh my, I can't remember her name now... I can blame that on the pregnancy, right?  I'm sorry.  It's on the tip of my tongue... Loretta maybe...

Well, we also broke down last Saturday and registered at Babys R Us just because it's a nation-wide chain accessible to anyone.  They are expensive and you could really spend a small fortune in that store.  Once you get going, it's hard to stop.  I don't really care about the particular products we clicked on, it's more just to let people that have been asking, what we need.  Just for the record, Cayla loves flowers.  Trust me on this one, I know this little girl...She loves anything with flowers.  ;o)  It's some bigger and smaller stuff.  But it looks like diapers will be our biggest need.  Anyways, we did this for those that are asking.  I have to say it was a ton of fun going through every aisle seeing what all is new out there.  Seventeen years was a long time ago.  Much has changed.  Cute stuff, but I don't care about name brand anything.  Lowell, Samuel and I went with his mom, sister, nephew and niece.  They played a discreet game of tag in the store while we looked at everything.  I'm so glad they were all there because I don't know what's what or what I need and so many times they all just stepped in and decided for me.  Yay!  It was fun.  My sister-in-law, Cathie, even bought us a baby bouncy seat with music and vibration, very cool and a really cute little outfit and blanket!  Didn't have to Cathie, but that was really sweet!  It was just fun doing that together.  Then we stopped at the Hometown Buffet, and I thought since I'm already paying for it, I'm going to load up on meats and protein. I had my salad with cheese, egg, spinach, broccoli, mushrooms and more and then got my money's worth on meat. I had steak, chicken, tilapia and roast beef. No carb other than I did end up having a little chocolate soft ice cream too. My blood sugar 2 hours later was 111. :o) Nice, I'll take it.

Well, I said in an earlier post that God had provided so many basic necessities for us.  Well, it's not ended.  I said I had most of the bigger items except a stroller.  Well, Erin, little Elise's mom, told me she had a stroller that is like a frame on the bottom that holds a baby car seat.  How perfect is that?  She said we could use it for as long as we need it. :o)  Love that! Thanks Erin.  Also, I have to say that God has blessed us from an unlikely source.  A co-worker of my mother-in-law offered 6 big bags of her girls clothes for us to have.  I really don't even know her.  Like I said, what a blessing from an unexpected source.  Don't know what I'll do with more clothes, but we'll use what we can and pass them on afterwards.  I don't imagine God giving us more children at this stage in our lives, but I didn't imagine Cayla either. :o)

Now, it's Wednesday morning the 14th of March.  I woke up way too early and couldn't go back to sleep in my bed.  Around 5am I gave up trying, came downstairs, sat on the couch and was out in 5 minutes.  That's the way to get some sleep. But then I couldn't wake myself up. Oh well, it felt good.  Samuel drove Lowell to work and then went to his Writing OGT this morning which gave me some time home by myself.  I was already weepy this morning since I found the letter for jury duty still sitting in a pile of papers on the buffet.  I filled it out, but never put it in the mail.  I started panicking this morning when I saw it and wondered how much trouble I'm going to be in since it didn't get mailed in time. I do believe that started the tears... and Lowell was busy getting ready and making sure Samuel was ready and all.  All I wanted was someone to tell me everything was going to be ok, but no one even noticed me which set me off into more tears.  Then Lowell noticed I was crying, but wasn't sure why, since I couldn't tell him and didn't know what to do with me.  He had to leave for work and hated leaving me crying.  I actually haven't been crying much recently, so I threw him off.  Later this morning, our pastor's wife stopped by to check on me.  I had to ask her if Lowell called her and she said he had and was worried about me.  That was very sweet, and it was good to talk to her even though I've talked to her a lot this week.  :o)  Once everyone was gone, I forced myself to start a load of laundry and do one load of dishes.  Oh, to have a dishwasher... I do miss having one, but am thankful I have dishes to eat on... doesn't that sound noble of me? ;o) 

Anyways, my blood sugar was down to 67 two hours after breakfast, I'm still tired and losing my motivation quickly.  A nap is looming in front of me... I know it's a gorgeous day outside, but it's still a little chilly with the breeze, and I'm freezing inside the house.  Which reminds me, isn't this sweet, little bundle of joy inside me supposed to be making me warm or even hot?  I know it was summer time with Samuel and I could never cool down, but I cannot stay warm even with this cute little bun in the oven this whole, warm winter.  I can't figure that one out.

Well, it's time to go do another load of laundry and dishes, nap and take my shower.  Sounds good to me!

"I love the Lord, because he hath heard my voice and my supplications.

Because he hath inclined his ear unto me,

therefore will I call upon him as long as I live."

Psalm 116:1-2

Last day at Cleveland Clinic until delivery!

Another long day, but so thankful for the great care from all the doctors, nurses and staff  at CC!  Thankful my mother-in-law has been there to take me and sit through almost all of my long appointments.  Dr. Lorber said this would be my last couple of appointments today for any pre-delivery info needed.  Yay!  I now only have my OB appointments every 2 weeks with Dr. Rajabi at Hillcrest.  I do have to go in Monday, April 23rd for blood work the day before I deliver Cayla, but was told I could do that in Willoughby, about 20 minutes or so closer to home than CC.  That is good news for me.  Only 6 weeks left!  Amazing really.  Lowell thinks it will drag slowly, and I can't see getting everything done in such a short time with it flying by so quickly.  We'll see.  I'm dozing off here as I'm typing, so this might start sounding weird... :o)

Well, Dr. Lorber had me as his captive today from 11:30-1:15 on that echo cardiogram table.  As the appointment progressed, he mentioned something about the changes they've noticed in her heart over the last couple of weeks studying her last echo.  I had to say that God may not have changed anything since last time, but has been working all along in showing us what's there, so that her prognosis keeps changing for the better.  He kind of maybe nodded, but didn't say anything and definitely didn't encourage any conversation about God.  I didn't feel like pushing it with him was really that wise, but God knows and can work on his heart. So we'll keep praying for him.  So, being on the table that long, I kept dozing off, waking myself up with quiet snores. Hey, I was on my back, I can't help it.  Cayla was laying spine up again, and he finally had to give me some grape juice to wake her up and have me do toe touches, walk, wiggle and try to work her into a different position.  I remembered when being in labor with Samuel and his heart rate dropped, they flipped me over onto all fours even though I'd already had an epidural from the waist down.  That was fun, let me tell you.  So, I thought I'd get up on the bed  thing and try it with a little shake to get her moving and it actually worked.  When Dr. Lorber came in 5 minutes later, he was pleased with her new position.  He saw something else he had not seen before on today's test.  This is what he wrote on the paper he gave us, "Truncus arteriosus communis with an RV dominant AVC defect."  This is how he talks at times too.  :o)  You just have to smile at him and hope the other doctor will explain.  What he tried to explain to us was that she has a valve that leaks.  Now, that wasn't hard to say, was it?  :o)  I've got to stop giving him a hard time.  He's a really nice doctor, he just can't think outside of medical terms at times.  The translation came from the other doctor. I'm not exactly sure where this valve is, maybe the one at the base of the aortic arch?  Don't know and I guess it really doesn't matter.  What matters is that this will definitely need to be fixed, but at the latest possible surgery.  He thinks it can wait until the 2nd surgery at 3-6 months.  He thinks the leak is mild to moderate, leaning more to mild.  Not major surgery, but something that can be done during another surgery.  So, that didn't seem to be bad news since it's apparently easily corrected. He'd been taking pictures for well over an hour, and I'm thinking he should be done anytime now.  Then there's a knock at the door and it's another doctor.  She comes in and starts looking over his shoulder and pointing and talking about things on the screen.  He starts getting excited and animated and talking in his "foreign" language with her.  He told her that she should see the pictures he got a little while ago when Cayla was in a better position.  So after looking another while, he decides to flip back to those pictures from earlier and off they go discussing and talking in "code" again.  Then, Dr. Lorber gets up, the other doctor sits down and continues taking pictures.  He comes over to talk to us and explain what all is going on.  He had 2 papers with different heart pictures on them and showed us what's going on with Cayla's heart.  Don't ask me to pass on what he said.  :o)  She still has a defective heart.  She can live with it for an unknown length of time.  The long term prognosis is uncertain since the oldest survivors with Hypo-plastic left heart syndrome are only in their late 20's.  Many of which have had complete heart transplants, and he said that that could very well have to eventually happen to Cayla.  They just don't know how long you can live with half a heart and especially only the right side.  Time will tell, and we'll take it one day at a time.  Dr. Lorber said too, that when Cayla's born, all 12 doctors in his department will review her echo cardiogram taken right after birth, discuss it, and together decide on what needs to be done.  I don't know why, but that kind of amazes me that they would go to all that "trouble" to really be able to give Dr. Stewart the best info before surgery so he can be more prepared.  I just thought that was pretty cool.  :o)  He asked if we had any other questions and then asked if Dr.S...... (can't remember her long name) could stay another 10 minutes or so taking some pictures.  So, 20 minutes later at 1:15, we were finally done.  She talked to us the whole time, re-explaining things to us and answering any questions.  Very nice doctors.

I needed to eat next before I could go see the neonatologist.  So we finally got to her about 2:15 or later.  She was in a conference.  I had no idea what she did and why I needed to see her.  But she pretty much told me that all pediatric heart patients, no matter their age up to 21, were taken to the PICU (Pediatric Intensive Care Unit) and not to the NICU (Neonatal Intensive Care Unit) since that's where all the heart equipment and doctors are located.  And her job was to be extra alert to a newborn's needs on the PICU.  Not that they are not capable on that floor, she's just more specialized about newborns and their particular needs with feeding tubes, meds and all.  She said once Cayla has been done with all their testing and even possible surgery, they step in to religiously keep her on a 3 hour schedule and make sure no one interrupts or wakes her while sleeping so she can heal faster.  She will only be fed breast milk even if I'm struggling, they will use donated milk.  Formula is not an option for her.  So pray I will be able to nurse and pump without too many problems.  I could only nurse Samuel for 2 months.  I don't want to worry and add stress since that hinders the process, but I must admit, it does make me somewhat nervous.  I am just going to have to trust God in this too.  I can say and type that pretty easily, but not letting the pressure to nurse stress me out is going to be harder to do than say.  One day at a time, Linda....... I have 6 weeks to work on this. :o)

So, Nurse Mary Lou then took me back to meet her boss and partner at work, Donna.  Such a down to earth, sweet, sensitive lady, who laughed with me, cried with me in that short time, knew everything that was going on with me, encouraged me, and left me with a big hug!  Everyone I've met has read up on me and knows everything about what's going on before I get there.  I love that.  You just feel like these people really do care about you and your baby.  Makes me want to cry again now.  I feel blessed.

I just have to constantly remind myself that God is in control, and nothing I or the doctors, or the nurses can do will change that.  It was a good day.  I do hope that this is the last trip until delivery, we'll see.  Lowell just brought me a paper that was overnighted to me by UPS.  It's another CC appointment schedule... It has today's appointments on it... Dr. Rajabi's next Thursday... then says I have 4 appointments on Monday, April 2nd at 10:10 with Healthquest, 10:45 with Dr. Velez for pre-op impact, 12:45 for an admittance interview, and 1:00 for a formal anesthesia consult... I don't know what any of these things are.  I'm going to have to email this to Mary Lou since she's the one making all my appointments and told me I was done today, and see what light she can shed on this... Just when I thought I was safe.  At least it has my "procedure" listed as well for April 24th. :o)  Can't wait for that one!  I'm tired again just reading this...  Well, there's more to talk about, but maybe in another post later tonight or tomorrow. 

"I have set the Lord always before me:

because he is at my right hand, I shall not be moved.

Therefore my heart is glad, and my glory rejoiceth:

my flesh also shall rest in hope."

Psalm 16:8-9

Dr. Stewart the surgeon

What a day!!! We went to Cleveland Clinic this morning, well we left around 10:45.  We got there easily enough and had lunch at their cafeteria.  While we were eating, I got a call from Dr. Lorber.  He said that he was able to hear from the doctor in New York with his 2nd opinion on what was going on with Cayla's heart. He said that it was good news, Cayla's heart seemed to have a strong aorta which means less or no reconstructive surgery during the first operation.  Yay! I told him I was meeting with Dr. Stewart at 2pm and he said that's great and he would go run through all his findings with him before we saw him.  I started feeling better about all this, but I was talking to Dr. Lorber and not completely sure what all he was saying.  But it was great he called! 

At 1pm we saw the genetic counselor.  She explained some things I never knew about genetics, but I don't really think my family history meant too much to her. It was maybe good for her research, but don't know if it will help Cayla.  At one point she asked Lowell if both his parents were still living and he told her no...  I had just introduced her to my mother-in-law which threw her off into a quick state of confusion before he and his mom started laughing.  She thought he was going to be in trouble with his mom, but she laughed and said she thinks he's mad at her if he's not picking on her.  It was cute, in a Lowell sort of way.  :o)  Anyways, we did the whole family tree thing with her.  It's amazing what you find out when you start asking relatives about your family's medical history.

Well, we were out by 2pm and off to see Dr. Stewart the pediatric surgeon.  This man is amazing... We walked in there and he had a picture of a regular heart drawn on a white board and then a picture of Cayla's heart next to it.  He said she has a very unusual heart.  She has a right atrium and right ventricle, but not much going on on the left side.  Well, we knew that, but he said it's odd that her right heart is pretty much like one big heart.  The valve between the right sides covers almost the whole distance of the heart.  And the best news is that her aorta is there, completely functional and will be able to work without needing any reconstructive surgery that first week of life!  They weren't sure at first about the aorta or not because it normally has an arch that comes out and hooks to the left, and Dr. Lorber couldn't see that aortic arch.  Well, it's because her aortic arch comes out the other side of her heart and arches to the right instead.  It kind of threw them off, but it's all still there and seems to be completely functional.  He said that's the big majority of the first surgery, but she still has some other possibilities. The main artery to the lungs could either be too small, too large or just right.  Sounds like Goldilocks... 1.) If it's too small, he'll have to put a stint in to add more blood flow to that artery.  He felt like this was the least likely of the 3 options.  2.) If it's too big, he'll have to "tape" it or put a band around it to tighten it up to slow the blood flow.  He felt like this was the most likely possibility.  3.) If it's just the right size, he'll do nothing.  No surgery that 1st week. :o)  He said the first 2 options are very simple surgery with little risk.  The news just kept getting better!  :o)  Yay!  The 1st surgery is the biggest risk to get through!  What great news.  He did continually add that we won't know for sure until she's born and has an ecocardiogram all by herself as to how things are completely.  This is what he's seeing so far.  I understand that, but am still rejoicing at the possibility of no surgery that 1st week!   She will still need the 2nd and 3rd surgeries that are a more permanent fix to separating the oxygenated and non-oxygenated blood in her heart.  But those are not as severe as that 1st surgery can be.  I really hope I'm explaining this right.  It was a little overwhelming today.  He was so thorough, had just talked over it all with Dr. Lorber, and was so easy to understand.   Anyways, he got paged and had to leave on call somewhere, but was so encouraging.  

I guess I've been keeping up walls to prepare myself for the worst. I've not really allowed myself to envision Cayla making it through the 1st surgery and not ever really getting a chance to be a momma to her.  To love on her, hold her, rock her, nurse her, take care of her and watch her grow up.  I guess I felt that to think that she would come through ok and then lose her, would be hard to deal with if I wasn't prepared. So that's where I let my mind go. On the way home tonight, I felt like some of those walls came down and for the first time feel like this is real.  I really am going to have a baby girl that I really can love, hold, rock, nurse and take care of and even beyond her first year, Lord-willing! It's quite an amazing feeling.  I feel like I really might get to see her grow up after all, and now I'm even more excited than ever to have her and hold her!  It's an exhilarating thought!  Just makes me want to laugh, cry, jump up and down (better not) and rejoice at God's goodness!  I didn't really get a chance to talk much to Dr. Lorber on his quick phone call, but can't wait for Monday's appointment with him to make sure he knows that God's hand is at work and has been along the way! :o)  God did answer prayer and it looks like God did do a miracle in her heart.  It was there all along, we just couldn't see it. :o) 

Nurse Mary Lou, the most wonderful person despite what I felt after her 1st phone call, was so helpful today!  After taking us to our 1st two appointments, she then took us on a tour.  We saw where Cayla would be in the PICU after surgery, if she even needs it... :o).  We met the nurse practitioner who was wonderfully sweet and so reassuring!  Such great people working here. She explained alot about what will happen right after Cayla is born.  We will get to say Hi to her and then not be able to see her for a while.  Knowing that ahead of time is good.  I want them to do whatever is necessary for her survival.  She'll be examined, have her ecocardiogram, poked and prodded and have tests run to determine what really is going on. We were taken to the Ronald McDonald Family Room on 3rd floor.  They have internet hook ups on desks, recliners, snacks, showers, free laundry rooms and all, right there.  So nice.  She took us to 2nd floor to the brand new Special Delivery Unit.  Showed us the Operating Room, the Recovery room for me and introduced me to the nurses there.  She then gave us a folder of information to peruse at our own time.  She gave us delivery valet parking passes.  Very nice.  And she was just overall so helpful and willing to answer any and all questions we threw at her!  What a special lady!

Well, I'm sure I'm missing something, and I'll think of it tonight in bed, but this is it for now.  Going to go take it easy.  Can't go to bed yet since it's only 8:30.  My heart is overflowing with joy and praise to a great God!  He knows the beginning and the end!  What more can I ask for!?!?  Pray with us that God would choose for her to not have to have that 1st surgery.  Wouldn't that be awesome?? :o)  I'm so glad I have a God I can put my trust in and just plain and simple... rest in Him.  I am so thankful for all the people praying for us and especially our precious Cayla Joy!  I think I might actually sleep well tonight! :o)  Here's some of my all-time favorite verses in God's Word! 

Ephesians 3:16-21
That he would grant you, according to the riches of his glory,

to be strengthened with might by his Spirit in the inner man;

That Christ may dwell in your hearts by faith;
that ye, being rooted and grounded in love,

May be able to comprehend with all saints
what is the breadth, and length, and depth, and height;

and to know the love of Christ, which passeth knowledge,
that ye might be filled with all the fulness of God.
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,

Unto him be glory in the church by Christ Jesus throughout all ages, world without end.
Amen.

Samuel

Samuel is my precious 16 1/2 year old.  When we moved to Ohio, he had just started 7th grade.  We were homeschooling him since we weren't settled anywhere and didn't know where God was taking us.  When God moved us to Ohio in Sept. of 2007, we bought the Sonshine Corner Christian Bookstore.  We continued homeschooling since he'd already started the year with that.  It turned out well, with him being able to help at the store and be a part of all we were doing with our family business.  He learned a lot, and God allowed us to be part of a local homeschool group there in Jefferson.  He had friends down the street, and some that would come over after school and such.  Overall it worked well, maybe not perfect, but it's right where God wanted us to be.  The first year went so well, we just kept homeschooling at the store the next couple of years.  Well, we had to close the store on July 30, 2011. 

So, last fall, starting 11th grade, it was just me and Samuel at home, now that Lowell had got a new job in October.  I saw him take his work so much more seriously and really strive to do better and keep up good grades.  It was a good fall.  He had his driver's licence and could drive himself to see friends back in Jefferson or wherever as long as he picked his dad up from work at 5pm. I have to admit, I kind of worried about him stuck with me at home as his teacher.  He has online teachers which has been wonderful since high school was a long time ago for me.  But I still felt like he needed more in his life.  I compared him to me growing up... as I was called the social butterfly of the family.  But he is so different than I am.  I had many, many friends and  was always trying to do things with them at any chance.  Girls and boys are so different.  Samuel is not craving all that drama and craziness I had and we think children need.  They don't.  God had to open my eyes that even though he's an only child and homeschooling, it's a great way to grow up (despite me).  There are worse childhoods... He has had so many opportunities that going to school wouldn't offer.  And yes, school offers a lot of opportunities that I can't with homeschooling, but I'm good with the trade off.  There is only one Christian High School in the county.  It's an ACE school in Conneaut, the northeastern most corner of the county, a good distance from us.  With one car, finances, logistics and all, it just hasn't been feesible to send him there.  God knows.  Would like to be able to send him to a Christian school, but it's been great having him here and being a part of all that's going on our lives! :o) 

People would ask if we were going to have more children, and of course we were!  I never wanted to  have an only child.  I loved growing up with my brothers and sister picking on their poor, little, innocent sister... ;o)  No, don't bother asking them if it's true, it's not.  I was the bratty little sister at times, but who's talking about that...  I just always wanted at least 6 children and told God that I'd take more if that was His will.  Well, after all these years, we just had one.  We've never not tried nor have we done anything with fertility drugs.  Just never felt comfortable with that.  I've had doctors tell me that they were surprised I was able to have Samuel.  I'm just glad God gave us Samuel when He did.  Now at 16 that he's going to have a sister is quite a shock to him.  He is so, so excited.  It has been hard to accept the possibility that God could still take her home to heaven, but God is giving us all the peace to accept His will, whatever it may be.  He's had his moments, but is learning to trust God in a whole new way.  He's been able to go to most of my appointments, meet the doctors, see Cayla on the ultrasounds, and be part of this whole process.  That's pretty neat since he can do that with homeschooling.  He was the only one there with me when we first heard the news about Cayla having heart problems and we had our good cry when we got home that day.  I love him for his sensitive heart.  God is working in His life through these hard times to smooth off some of those rough edges.  I know many people throw their hands up with having teenagers, but I love having a teenager!  I love talking with him, (still workin on him expressing himself and talking more... maybe if I didn't talk so much he'd have more of a chance...)  :o) but that's been one of my goals this semester.   He's wanting to get a job this summer and through next year, Lord willing.  I don't know how it will work with one car and all, but we'll see.

It's been a bit of a process to accept where God has us now without the store and not in cozy little Jefferson anymore.  I prayed and cried to the Lord to show us what we need to be doing and all I kept getting was what felt like silence.  I realize now that there is nothing extra we need to be doing. It's not maybe how I envisioned him growing up, but it's what God had in mind for him.  This second semester has been so wonderful.  I'm finally realizing what a treasure I've been given in homeschooling him.  I know his weaknesses and have jumped right on working on those in his life.  We are reading and studying through the Bible from Genesis to Revelation together for about 45 minutes every morning.  We get up at 6:30 and he does his workout. If we need the car that day, he takes Lowell to work and picks him up.  He's becoming the man God wants him to be.  We still have some areas we're working on, but this time with just him and me has been wonderful and such a special time for specific training and building such a great relationship between us.  He has seen God work first-hand, and has been able to be there to help me through this pregnancy and all.  I love him more than ever and am very proud of who he's becoming in Christ.  God is good! 

He's been my chauffeur to doctor's appointments, grocery shopping, or just running errands for me himself.  He's been a big help with babysitting little Elise on Mondays and Tuesdays .  Actually I have 2 pictures from the other day of the 2 of them.  I guess I'll insert them here.

I do have a prayer request for him this coming week.  The state of Ohio is requiring students to pass OGT's to graduate.  These Ohio Graduation Tests are next week, Monday - Friday from 9:30-11:30am with a different subject each day (Reading, Writing, Math, Science, and Social Studies).  I will not even be able to take him on Monday, his first day since I have to meet with Dr. Lorber in Cleveland.  He has been having a hard time focusing on school with all that's going on in our lives.  I just pray that he will be able to concentrate and do his best.  He has more chances to take them if he needs it, and we've told him to just do his best and we can retake whatever need be next time.  I'm not worried if he passes them all the first time, I just want God to give him peace, let him focus, and do his best at this time.  We appreciate any and all prayers for him next week. Thanks! Ooo, it's after 11pm, I guess I better get to bed... our God is in control! :o)

Today with Dr. Rajabi

Well, went to see Dr. Rajabi today.  He said the MRI didn't show anything.  This is good. We don't want to find any other issues, but neither could he see her feet in it to look at the club foot.  He did say her brain looked great. Overall, I don't think it was as helpful as he hoped.  He was in a happy mood, maybe since it was time to go home.  Cayla weighs 4lbs. 4oz. now which he said is very good.  Both of us checked out in great shape.  :o)

He asked me if I had any questions... Well,  I said that my husband has Good Friday off and the Monday after Easter as well.  I'd be 37 weeks along with my delivery at 39 weeks, only 2 weeks later. So I asked him how far away if at all we could go that weekend, and he laughed!  He said we can't go anywhere out of town that weekend... that's all we need, is for you to end up in Timbucktoo and go into labor... He said it all with a big smile on his face.  I knew the answer, just wanted to ask anyways. :o)  He said we'd probably need some time away before the baby and to go somewhere now.  It just doesn't work that way when you've only worked somewhere 5 months.  I would guess we could hang out in Cleveland... they do have a new aquarium now... No, I know, we just need to have family come up here for Easter... Jim, Marla, are you listening? You're the closest.  Dad, Pat?  Any takers?  I'll even let you cook Easter dinner for everyone... I'm generous that way. ;o)  Dad, I do still have your sweater and Pat's crock pot... 

Anyways, tomorrow will be a long day.  We all go to meet the genetics counselor tomorrow at 1pm, then Dr. Stewart the surgeon at 2pm and then a grand tour of CC and Ronald Mcdonald House with Nurse Mary Lou at 3pm.  I'm sure I'll be writing about it in another entry.  Until then... :o)

Cayla's MRI

Linda Joy and Cayla Joy

The picture is for those who've been asking. This was last Saturday night, Feb. 25th at about 31 weeks.  Not too bad of Cayla, but I need to try again when I'm a little fresher looking in the morning.  :o)

Cayla had her MRI last Thursday, March 1st.  We got to have it in the pediatric MRI room which actually was helpful for me.  Nurse Mary Lou met us and stayed the whole time.  She does her job well, and is very helpful.  I laid down in front of  "the tube".  The lady then wedged a pillow in my back to keep me off my back at a 45* angle while trying to keep me from flipping off the other side of this contraption. She then put some big panel thing over Cayla and strapped us in for the ride.  As she raised us up to the level of the tube, she was explaining that she didn't want my arms down in the tube at the angle I was at, so they ended up wrapped around my neck and chest.  Needless to say that after 40-45 minutes they were both pretty numb and sore. She put head phones on me but poor Cayla didn't have any...  Then we were slid into "the tube".  Not a whole lot of room in there, especially at the angle I was at and being pregnant.  I asked her later if this was the child size one, :o) but she said, no, they're all about this size. The machine started with it's lovely, loud, vibrating, warm buzzing.  I found it hard to relax and realized every time it started, I was breathing heavily.  I knew that could mess up their picture taking, so, remember I'm in the pediatric room, which was nice because they had little fishies on the ceiling and on the side wall they had "Finding Nemo" playing on a large, flat-screen TV.  I realized the audio of the movie was faintly playing in my headphones, so I tried to lean my head back, watch the movie out the end of "the tube" and focus on it instead of "the tube".  It actually helped, and I did fine with my breathing after that.  Glad I wasn't in the big people's MRI, it wouldn't have been as much fun, I'm sure.  ;o)  I was actually getting really sleepy, but the machine just wouldn't let me doze off with all it's noise. She said they got a lot of good pictures, and Dr. Rajabi would go over them with me probably next Wed. at my appt.  So, we wait and see.  I can't imagine who comes up with things like taking pictures with a magnet.  Amazing really. 

Overall it was pretty painless once my arms got feeling back in them.  Once again, so thankful for insurance.  We found out that we have a $2,500 cap max at 80/20 payments and then insurance will pick up 100%.  This is so wonderful because there are so many specialist we're having to see and tests done that are already adding up to a huge amount.  We haven't even got to the C-section surgery, then the big whoppers of Cayla's surgeries and all the follow-up time spent at CC.  We are hoping both of her 1st two surgeries will fall within the year 2012 under the same deductible.  Her first one will be around 3-5 days after birth and then the 2nd one is supposed to be sometime between 3-6 months.  My delivery date is Tuesday, April 24th, so it appears they should both be within this year.  That would be great.  :o) 

Well, it's time to get to that laundry pile, do some dishes and make stuffed peppers for dinner.  If I get ambitious, I might take the time to make up a batch of my mother-in-law's veggie soup with some London Broil steak that was on sale this week.  Lowell and Samuel can have most of the stuffed peppers this week since rice just shoots my blood sugar level way up. I bought 12 green peppers at $.50 a piece, but she rang them up wrong and there was no supervisor around to fix it, so after a while she just insisted we take all 12 peppers for $1.00!  Lowell was the one who pointed out her mistake to her.  We tried, but I guess God wanted us to have some inexpensive stuffed peppers.  :o)  He's good like that! 

Speaking of financial blessings... we also received a check from a friend this week for quite a bit to buy us a new mattress or whatever we needed.  SO amazing!  The family of God is so wonderful!  In this day and age when money is tight, it really is amazing to see people willing to be used of God in other's lives.  Thanks for your prayers!  God is answering and providing for us through this time in many, many ways!!  :o)

Have a blessed weekend and Lord's day tomorrow!

"But my God shall supply all your need according to his riches in glory by Christ Jesus."

Philippians 4:19

Loose Ends

Well, it's Friday night, March 2nd.  I have not written in my blog for a week now.  I seem to have many loose ends to try to tie up before I have Cayla Joy.  I have not felt free to sit and write with so many things hanging over my head that need to be addressed now.  I just feel like I need to sit and talk all this "stuff" out.  I'm still behind in dishes, cleaning, and laundry, but that will always be there...  There are bigger things that have been weighing me down (besides Cayla).  :o)

I have been in charge of the Ashtabula County Prayer Walk up until now.  I have officially passed that on since I will not be able to do anything a month or so before it happens when all the final details need to be worked out.  Our county has a Concerts of Prayer Board that sets up a Prayer Breakfast the morning after the National Day of Prayer.  We have fairly well-known speakers with great testimonies for the Lord.  Years ago, they had also organized a prayer walk.  Ashtabula county is surrounded by 4 main roads and during the same hour or so on that Saturday morning after the National Day of Prayer, they used to surround the county in prayer.  Churches and groups would take a 2 mile or so stretch of road and walk, pray, sing and worship our Lord as they went.  So, at the same time, our county was literally being completely surrounded by prayer.  I still get goose bumps thinking about it.  It has not happened for many years, but I've found out that if you get excited about something, you get to be in charge of it... So for the last months, I've been working to make this happen again.  It's a bit more of a daunting task than I imagined, but I so want to see this happen.  This area is struggling with the economy and in many other ways.  We need this event to happen.  I feel like I've let the ball drop somewhat over the last couple of months, but 2 other board members have offered to take the reigns and let me back off.  I can't explain the weight that has been lifted, but I still want to help any way I can for now.  Passing this off has been a bit a of a struggle since I have to organize what I've got done so far and where we're at.  I've realized that I'm not an event planner... duh, I'm a micro-organizer (can't stand when my silverware isn't stacked in neat piles...) not a macro-organizer (dirty dishes stacked on the counter though, don't always bother me)... Confessions 101.  Ok, moving on.  I'm still feeling like there's much to do that I need to have my hands in.  I know, I need to back off.  They will be fine without me... I just so want to be a part of this event, but God has other plans for me right now.  I will be praying for them as they pray, and my heart will be with them that day as the event unfolds.  Ok, got that off my chest...

I am also in charge of the music at church.  I know that Dave, our song leader, and others are very busy people working 2 jobs and helping out with so much else.  I feel the need to plan (as much as possible) the music schedule for April-June.  Even if I can have a plan for them that can easily change if the Lord directs, it's still nice to have something already there and planned when life gets busy.  This means lining up special music for each Sunday morning and evening and organizing the songs and hymns to be sung each service including Wed. night prayer meeting. I'm thankful for all the willing people who are stepping up and doing more.  I'm working with Debbie to take my place at the piano, knowing that she's under a lot of stress these next months or so, but still wants to be used by God, not wanting Satan to get the victory in her life. Pray for her if you think about it. Thanks. I'm also lining up offertories for the next 3-4 months too.  I felt like I need to get this going now, so everyone involved will be on board and helping out this next month or so before Cayla gets here to make it a smooth transition.  I'm trying, the Lord knows, to get organized... I love it, but it's so overwhelming for me since I really do like to micro-organize and tend to be a bit of a perfectionist... if something has my "name" on it.  I spend way to much time on unimportant things... but God's used that quality in my life for good, it's just slowing me down right now.  I do thank Dave, Debbie, Erin, and John for stepping up and filling in with the piano and song-leading though. 

I've also finally let go of my Sunday school class, thanks to Dotty.  :o)  That has relieved my stress level on Sunday mornings quite a bit with trying to check my blood sugar levels and getting a snack in between Sunday school and church.  Plus, I get to sit in with Lowell's class with the teens now.  I like that. :o)

To help us financially any way possible right now, I'm feeling the need to put leftover "stuff" from the store online and try to sell it.  A friend told me I'm nesting.  I just want too many things cleared out of my life before Cayla arrives... maybe that is nesting.  Actually, this is so overwhelming for me, that I pretend the stuff in that room doesn't exist... I haven't really even tackled it yet.  Keep feeling guilty about that and somehow need to work on clearing that room out and being completely done with the store and it's remainders that are cluttering up my front porch and small bedroom...  It's that whole, large-scale organization thing again... it keeps haunting me everywhere I turn.  Maybe God's trying to tell me an area of my life I need to work on...... naaaa, couldn't be.  Ok, so I'm in denial, but I'm good with that for now.  :o)

My mother-in-law came over and we washed all the clothes we've been given for Cayla and have them all organized by size in huge bins... that was a fun job of organizing.  Why can't organizing be that fun all the time?  Speaking of things being given to us... I don't know if I've mentioned this in an earlier blog, but we have been given or offered: a crib, a bassinet, an electric swing, a baby bath, a Pac-N-Play, a rocker, a high chair, a car seat, a Bumbo (sp?) seat, a matching set (from 2 different people) of a mobile and a floor mat/jungle gym, clothes by the bag-fulls, and toys.  We are so blessed by family and friends!  Thanks to all who've provided these things!  I think the only "big" item we don't have is a stroller.  I've been told to get the one with the car seat that fits on top... we'll see.  I'm so thankful for God's provision.  Plus, Lowell found 2 trash bags and a couple of boxes of my Grandma Brooks' handiwork in blankets, sweaters, smocked dresses, hats, booties, gloves, and receiving blankets she sewed up too.  This is after I thought I gave it all away to the Birth Care center.  I don't know where all this was, because we literally already gave them trash bags full and boxes of her knitted and crocheted things too for the mothers who decide to keep their babies and not abort.  It was so fun giving it "all" away thinking I'd never need it again.  During Christmas and getting decorations out, Lowell found more boxes and bags that I felt just appeared.  Amazing how God multiplies things when you're not looking.  :o) 

Well, well, well, this is turning out to be quite the post.  It's more for me right now.  I just need to write where I'm at and what's making me tick or not tick.  I feel better writing it out and now feeling like maybe I have accomplished something this week after all.

There's not too much going on with Cayla and the doctors this week.  I did have an MRI yesterday, but that will have to be another post.  Next week is when we have some important doctor visits and such.  Thanks again for the prayers and support!  God is good even when I cried myself to sleep last night thinking about my "trip to Holland" with Cayla (from my former post).  I don't understand God's ways, and I can trust Him 100%, but I'm still made with all these emotions and even more so right now.  I so much just long to hold and kiss and love on this precious little girl that it overwhelms me sometimes.  Trusting God for our precious Cayla Joy and for a good night sleep tonight. :o)

Dr. Lorber, the echocardiogram and Nurse Mary Lou

Well, I'm really tired, but feel like I need to write while things are still fresh on my mind. 

JoAnn Ward, a friend from church, was willing to take me to Cleveland Clinic (CC) today since Lowell and my mother-in-law had to work.  I went for the echo cardiogram with Dr. Lorber.  My appointment was at 9:30am and with traffic and weather we felt we wanted extra time to get there.  Neither were an issue and we arrived at CC at 9am to check in.  The doctor was with another patient, so we waited.  About 9:15, nurse Mary Lou came in and introduced herself.  I was a little harsh with describing her from her initial phone call since she really was helpful.  I look forward to working with her and figuring all this out.  She gave me so much info that was really good news.  So, sorry Mary Lou for my bad first impression on the phone... I pretty much associated her with having to admit that this is serious and we are not going to have a normal baby and will need lots of help, including help from Ronald McDonald House whether I want it or not.

One thing she said was that CC will provide me gluten-free, low carb meals for free if I pump and try to nurse while staying there!  I thought there was no way I'd be able to nurse with everything going on, but she said they really want Cayla to nurse as much as possible since it will help her so much more.  I thought that was great that they actually pushed nursing since it seems so many times formula is just handier and seems to be the norm anymore.  So...  yay for nursing AND free meals!  God is providing! 

She also said that Ronald McDonald House (RMH) has a family room on the floor below the PICU where Samuel can come and stay at the hospital with a laptop and do his classes there with me, see Cayla and be part of things if he wants.    He would also be able to sleep at RMH too.  That was good news since that is the end of the semester with exams and all. Not that he'd need to be there all the time, but could come and stay a couple of days and go home for a couple of days.  Very nice. Thanks to RMH.

She also set up some more appointments for me... Cayla's MRI is next Thursday, March 1st.  Then we see the genetics counselor at 1pm on March 8th, Dr. Stewart, the pediatric heart surgeon, at 2pm to hear what he thinks about Cayla's condition and what he plans on doing, and then a grand tour of where we'll be in CC.  She's going to introduce us to the nurses that will train us on how to care for Cayla when we bring her home.  We'll go to the RMH and so on.  It's an adventure really.

It wasn't until 10:20 that we were called back. Dr Lorber's "fellow" as they call the doctors that are studying under the specialists, Dr. Rao, spent a good hour trying to get the best pictures of Cayla's heart. She was curled up with her back up not allowing them a chance to see exactly what they wanted.  She did move a little and they were able to get a few more pictures.  Eventually Dr. Lorber came in and did some looking too.  He kept saying things to Dr. Rao like, "I don't know what that is," or "I've never seen anything like that before."  I wanted to interrupt and ask if that was a good or bad thing, but didn't want to distract them. After all their talk and pictures, he started trying to explain things to us.  Good luck with that.  :o) He kept throwing in big medical words and phrases that we couldn't understand.  He did draw a picture and explain that Cayla's lower left chamber of her heart was too small to be functional at all.  The lower chambers do the pumping.  He went through what has to be done to the right side of the heart for it to do all the pumping.  I really shouldn't even try to explain what he said, so I won't.  I did finally ask him what her prognosis and survival chances were in his opinion at this point.  He said that Dr. Stewart is one of the best pediatric heart surgeons in the nation which is a great thing.  Yay!  He said that the whole cardiology branch at CC is the top in the nation.  As a whole, they have a higher survival percentage than anyone else.  Dr. Stewart is a big part of that success.  Dr. Lorber said that surgery is definitely an option for her and feels that Dr. Stewart can do the surgery needed to get her through the first crucial week. He said her chances for that surgery are around 80%. Then he said the chance of surviving the next 2 surgeries is about 95%.  He will still need to know more though.  He called that afternoon to tell me that he will send the pictures of her heart to a colleague of his in New York to get his opinion on some things he had never seen.  Then he wants me to come back in 2 weeks again and see it all again.  (So blessed to have insurance...)

Here's what I want everyone to pray about.  Dr. Lorber is one of the 12 cardiologists here.  Out of the blue, he made special note to tell me that when I come back in 2 weeks, nothing will have changed, nothing miraculous will have happened to make her heart any different than it is now.  I don't know if he saw my "Jesus" necklace or heard us talking about church and such, but I almost felt that he was purposefully saying that miracles do not exist and don't expect one.  He reiterated this a couple of times to make a point.  I do not know what God's will is with Cayla, but wouldn't it be awesome to have God "change" something in her heart before the next meeting?  If it's not what God has planned for her, that's fine, but I can still pray and ask others to pray for Dr. Lorber and Cayla's heart.  I just ask to pray for God's will and that it be His will to not even have to heal that lower, left chamber, but just to show some obvious improvement that would make him sit back and be forced to know there is a God.  I do want to repeat myself that it's God will above all.  He may not choose this right now, but all I could think about as he was repeatedly denying the fact that there is a miracle-working God, was that this man needs to see the hand of God work in an undeniably miraculous way! So, will you pray with me?  I see him again on Monday, March 12th at 10:30am.  :o)  It's in God's hands either way!

So, it's now Saturday night the 25th and I've just typed the last paragraph.  I know there's more that was said and done... Let me think.  He said they would do her surgery a couple of days after birth to run tests on her and let her catch her breath which will also give me some time to heal and be more ready to be there when she comes out of surgery.  She'll have to stay around 2-4 weeks at the hospital, could be more depending on her reaction to surgery.  They'll send her home and we'll have to monitor a 100 things while there.  She will be brought back between 3-6 months for her 2nd surgery.  We do hope that her second operation falls before the end of 2012 so insurance will still cover 100% of it then before it all starts over for 2013.

There's more, I'm sure, to tell, but once again, I'm exhausted and will post more later.  God is so good with how He takes care of His children!  We are blessed.  Thank you Lord!  I have a feeling that these next 2 months will actually go faster than a normal pregnancy.  Oh and my planned delivery date is April 24th, on Mrs. Emery's birthday!  :o)  I also must, must say a huge thank you to my mother-in-law for her willingness to drive us to Cleveland for most of these trips.  Our one car is barely hanging on, but money to fix it or buy a newer one is too scarce right now.  We're not sure how Lowell will make all the trips to CC when she's born either, but so many people have stepped and offered to take us, especially Lowell's mom that right now we can't worry about it.  Thanks to her and JoAnn and other's willingness to be a blessing to us!  Goodnight!

The name Cayla Joy

I'm going back and forth around the house trying to avoid the kitchen.  I finally baked a loaf of gluten-free bread from scratch and I can't eat it until I take my blood sugar in a half and hour... The smell of fresh baked bread is killing me...  I can walk through a bakery filled with gluten and not have a problem, but knowing the smell of fresh baked bread is for me this time... almost impossible to resist. :o)  So, to get my mind off the smell, I thought I'd write in my blog.  Hope this makes sense since I'm a little distracted at the moment...

I just wanted to write down the pretty simple story of how we came up with the name Cayla Joy. It shouldn't take more than 20 minutes. :o)  We had somewhat decided on a boy's name, and no, I'm not saying what it was. When it came to a girl's name, we were kind of stumped.  We tried to do family names, but didn't really get too far with that.  Lowell kept saying it was a boy anyways, so what did it matter (hee, hee... I think he still owes his brother Cress for a $5 bet that it was a boy... funny). Anyways, the day we had the long, long ultrasound of 90 pictures or so, we found out it was a girl.  The ultrasound tech said that it was definitely a girl and not just for lack of boy parts, but she found girl parts... Lowell and Samuel just hung their heads and tried to get pity from the rest of us in the room (all women), which didn't work. So on the way home, when we stopped for a few groceries, I took off getting what I needed and then couldn't find Lowell and Samuel.  Eventually I found them in the bakery picking out doughnuts to "console themselves on the loss of their boy".  Whatever... I knew he was slightly disappointed, but that he'd be happy either way.  So, later that night when I went to bed, there's Lowell lying there with his internet in one hand and paper and pen in the other.  He was going through lists of girl names from Celtic, Irish, German, Russian, Hebrew, you name it and writing down any favorites that jumped out at him.  His disappointment of it not being a boy apparently didn't last too long... I started going through the list and thought, maybe, no, maybe, what was he thinking, no, maybe, I know people with that name and so on.  Well then I saw "Cayla" and thought, Cayla Joy.  I think I kind of like that. I told Lowell I liked Cayla and asked him which list it came from.  He said he actually liked that one too and that it came from the Hebrew list meaning "Crown of Laurel".  I had a friend add on my facebook comment that... "the foliage of the laurel is an emblem of victory or distinction".  A wreath of laurel was put around the winner's neck.  I kind of liked that and feel it fits this little girl perfectly.  The middle name of Joy just came since it's my middle name and seemed to fit well too. :o) So, we thought we should mull it over a day or two to see if that's really the name we wanted. Well, the rest is history.  

Thus, the long-winded version of how we picked "Cayla Joy".  I did have to stop a few minutes ago and take my blood sugar and get 2 very thin slices of my bread.  Oh joy!  It was delicious.  Didn't want to add anything on it that might ruin it, plus it would have put me over my 30 g. of carbs limit for the evening snack... The sacrifices, Cayla... You just wait until you're here and the doctor takes me off insulin... Actually it's been really good for me, and I do hope that I can carry what I'm learning with this low carb diet with me after the pregnancy.  Time will tell. :o) I am back to my starting weight of this pregnancy after losing, gaining, losing and now slowly gaining a little back again despite the diet.  Although with the food I'm eating, it's got to be Cayla's weight gain and not mine. So, I'm ready to go read my book and relax a little before bed.  Man, I'm already thinking about breakfast and what to have with my slice of bread... Maybe some "dippy" eggs............

A call from Nurse Mary Lou

It's about 4:45am this "lovely" Saturday morning... and I can't sleep with what I think is the beginning of a cold.  I can't breathe laying down, so here I am at the computer in the wee hours of the morning now sneezing and blowing my nose.  I see a nap or two in my future... I couldn't write about this phone call last night, since it was still bothering me in some ways, but I guess I'll just write whatever comes out this morning...

I've been feeling good after hearing that Cayla doesn't have chromosome problems.  I guess I still needed a reality check though to help me realize that she's still got many hurdles to cross.  I answered my phone yesterday around 4:45 and had a very nice lady tell me that she's my... I don't remember exactly what she called herself... my counselor nurse, maybe?  She works at the Cleveland Clinic Main Campus (CC) and will be my "go to" person over the next months.  She will give me tours of CC and introduce me to all the surgeons, doctors, social workers, genetic counselors, and people from the Ronald McDonald House (RMH).  I have to say, when she started talking about the RMH, I was overwhelmed at that thought.  It never really hit me before, but I remember over the years, seeing pictures of families there with their sick, recovering children and thinking, how hard that must be.  I couldn't imagine what those poor families were having to go through. When she started saying how they would help me, let me sleep there for $20 a night while Cayla's at CC, provide transportation across campus back to the hospital, and all the other things they do... it hit me.  We're going to be one of those families.  I'm not sure why, but that thought was a huge reality check in itself.  I missed part of what she was saying to me because I had to stop and let this sink in.

She went on to say that CC has just finished a brand new pediatric surgery center or something like that.  She also said that Cayla Joy will be most likely delivered there with her heart condition.  Maybe it was a new SDU, special delivery unit, I'm not sure.  I didn't start taking notes until about halfway through the conversation.  She was glad to see I have an appointment there next Friday with Dr. Lorber who will do an eco-cardiogram on Cayla's heart.  I guess it's a 3-D ultrasound thing that allows them to see the heart and the computer will rotate it, or make it so they can see the heart whether Cayla cooperates or not.  Don't quote me on any medical stuff... Anyways, I still see Dr. Rajabi next Wednesday the 22nd at Hillcrest.

Then nurse Mary Lou continued her reality check as she kept pointing out that Cayla's problems could be genetic in nature, meaning that her kidneys and other organs could be affected and they just can't tell right now.  She kept telling me worst-case-senarios and making sure that I knew that Cayla's chances are still very uncertain.  I had to keep teling her that Dr. Rajabi has done a great job of keeping our feet on the ground and telling us about her future chances and struggles.  I kind of wanted her to stop talking...  She's a very nice lady, I don't doubt that for a minute, but I think she needed to remember she's talking to a pregnant, hormonal woman who is dealing with all this news from the last 2 weeks with as much grace as possible.  I know she will be a great help during these next few months, and I am thankful for her abilities, I'm just telling how I felt after yesterday's talk with her. I still can't believe it was only 2 weeks ago that we found out about all this.  What a long time ago...

She did keep asking me how I was feeling and was trying to figure out how I was handling all this.  I am thrilled to say that at least 3 times during the conversation, I got to talk about my Rock I'm leaning on, Jesus Christ.  I don't know if she wanted to hear about it, but I didn't want to hear all the worst case scenarios either, so we were even. :o)  Towards the end of the call, she said, "It sounds like you've got a great faith and support system." I said, "Yes, because I've got a great God that made Cayla and is more involved with her care right now than anyone else!"  She has no idea what kind of support system I've got right now... so many wonderful people praying for us!  Situations like this just give you a boost towards God becoming more real than ever before.

I guess the Lord felt I needed to remember that just because it's not a chromosome problem, which is huge, it could be many other serious things.  I don't want to get comfortable and say that God is going to heal her, or make everything ok, because I don't know that. He could, and we are praying for His healing hand very diligently. But ultimately we just keep praying for God's will to be done and that He receives all the glory for this precious little life He's created!