A short and sweet update for everyone.  Last Thursday, I received a call from MJ's cardiologist.  He informed me that all of the cardiologists/surgeons at LeBonheur met the day before and decided that they were going to try to do a heart catheterization on Monday to see if they could open up the conduit and get good enough results with that to lower the pressures in the right ventricle.  I was shocked as we were told this was not an option a few months ago...hence the open heart surgery scheduled for Tuesday.  Of course we decided to go for it. 

On Monday, MJ had another heart cath.  During this cath, they were able to open up her conduit to its original size with a gortex covered stent.  They also found that she had a pseudo-aneurysm in her right ventricle.  They were able to repair that with something that I can't remember the name of right now.  The pressures dropped to an acceptable level in the right ventricle so surgery was cancelled! Praise the Lord.  Now, she will continue to have heart caths to open up the narrowed areas farther out in her arteries, more towards her lungs.  They haven't been able to reach them yet because of the small conduit, but now that problem is fixed so we can begin therapy on the distal arteries, which hopefully will drop her pressures even more.  Now, it could be 6 months to a few years before her next surgery.  YAY! 

We spent Monday night in the CVICU just so that she could be watched and she did great.  She finally went to bed around 11pm and slept til 7.  Pretty good considering narcotics usually make her wired.  Shes done great since being home!!  I still can't believe that we are at home and not at the hospital.  I keep thinking I am dreaming and about to wake up.  Oh how I dreaded surgery this close to the holidays and the delay it would cause in her development.  She has come so far!  She likes to stand up now, which is a huge blessing considering this is the girl that a few months ago would not put any weight on her feet.  Now, we are trying to get the rest of her teeth in....she now has 12 teeth....in 4 months time.  She hasn't been gaining very much weight lately because she gets really sick each time she cuts a tooth.  She isn't losing though and isn't too far off of the 50th percentile. 

I pretty much blocked the month of October off because of MJs surgery, but now that we can live normally I can't wait for the holidays.  We are going to hopefully be able to make out trip to Knoxville in a few weeks so that we can go to the pumpkin patch with one of my best friends and her baby and then we are definately taking MJ to the Memphis Zoo Boo.  I am still looking for her Halloween costume as well.  I know what I want her to be, I'm just looking for the one I like :) 

Well, that is all for now.  I still have family in town until the weekend so I better get to bed so I can spend time with them!!  Thanks for the prayers...they are working and it is amazing to see God's hand on Macy Jane's life.

Much Love,

Bethany

Wow, it  has been a very long time since I have updated.  I'm not even sure where to begin! 

Macy Jane is doing very well.  Each day she getting stronger, learning new things, and doing new things.  She has been crawling like a big girl for a while now (instead of the army crawl!) and most recently she has been getting in to the kneeling position and pulling her self up on the furniture!!  She has been involved in physical, speech, and occupational therapy for about a month and a half now.  As I type this, she is crawling over to the end table and grabbing books off of it and "eating" them   She loves books and being read to.  She has also started to eat more things by mouth.  She's still fed primarily by the g-tube, but one day we will get there. 

The biggest news is that Macy Jane has to have another surgery.  Soon.  Like October 7th soon.  It isn't because of a life threatening emergency situation.  It's something that we knew would happen, just didn't know that it would happen this soon!  She is going to have her conduit changed out via open heart surgery.  We had the consultation with the surgeon last week and he said that if everything goes well with no complications, she should be in the hospital for a week.  Please remember us in your prayers.  It does not get any easier as she gets older.  If anything, I am dreading this surgery more than the past two because we know what to expect this time around on top of the fact that MJ is older and definately a lot more strong.  *sigh*

Everything else is going ok.  I redecorated my living room and guest bath this past weekend.  Kirkland's was having a massive sale and I got some things that I've had my eye on for a few weeks.  When we bought our house, I bought 4 pictures for the living room just to put something on the walls until I found something I loved.  Well, it's been almost 3 years and I finally finished it. 

Life has been super busy for us.  My brother came to live with us at the beginning of August.  The doctors thought that he had lymphoma, but after a biopsy was performed it was determined that he does not have cancer after all!  He went back to Missouri this morning.  If it had been cancer, he was going to stay with us so that we could take care of him.  I'm so thankful to God that he is cancer free   MJ has therapy on Tuesday and Thursday and a lady comes to our house on Fridays for an hour to do some play therapy with MJ in the home environment and help us as parents with resources in the community etc.  On top of that we both work full time and I am trying to work extra days to make up for the time that I take off with MJ's surgery.  However, staying busy helps me de-stress. 

Well, I guess that is all for now.  I hope that ya'll are well. 

Much Love,

Bethany

We finally got the phone call from Macy Jane's cardiologist last Saturday night!  MJ's conduit that was narrowed in April and restretched has once again become narrowed.  She also has a few places in the distal parts of her pulmonary arteries that are narrowed again.  The great news is that her heart's pumping capabilities is still excellent!  We knew that the conduit would probably be narrowed again, it's just the nature of the beast with these things.  However, towards the end of the conversation, Dr. Joshi informed me that Lebonheur recruited a world famous top-notch heart surgeon to join the staff in September.  He told  me that and told me that he highly recommends us having her next heart surgery right here in Memphis.  The conduit change out, eventhough it is through open heart surgery, is a pretty common surgery...unlike her first operations, the Unifocalization.  I told him that we have trusted his judgement calls from day one and if he could tell me that if it were his child he would let the new doctor operate on, then we would feel comfortable. 

We have not made our minds  up 100%, I would of course want to meet the new surgeon, and hopefully be able to talk with him.  However, the flip side is this.  We would have all of our support systems in Memphis and around the area, Steve wouldn't have to miss any work, I could work if I had to, we wouldn't have to deal with the strange culture of California, and basically it just boils down to this.  Besides the fact that it is easier on us as MJ's parents, the most important thing is that I KNOW beyond a shadow of doubt that MJ would receive excellent care post-op at LeBonheur. 

Most of you, if you read my blogs or talked with me in California, know that we had a terrible time with the way that MJ was cared for after her open heart surgeries in California.  We had a handful of nurses that we grew attached to and one doctor besides Dr. Hanley that we liked and trusted.  That isn't so great considering how many doctors and nurses took care of MJ.  However, with the exception of a few nurses at LeBonheur, we have always liked and trusted the staff there.  I know that when MJ comes out of the OR, Dr. Cabrera will take care of her like she were his own.  I also know that the CVICU nurses and 7-west nurses are excellent.  I have more peace about them taking care of my child than people across the country that are there for their $$ (some not all!)

I have been so busy since I talked with Dr. Joshi that I haven't researched this new doctor.  The other option, which is still being  discussed, is whether or not her conduit can be stented open during a heart cath.  Dr. Joshi is discussing that with the heart cath docs next week.  If so and it works, MJ might not have to have surgery for a year, hopefully.  We are praying for that, but know that surgery is also very much an option.  Either way, if it is a heart cath, that will be done in August or September, and surgery would be after september if we go that route. 

Well, MJ is getting cranky so I am going to put her down.  I will update on some more stuff later as time is available.  Me, my mom, and MJ drove to Florida yesterday to help my sister and brother in law move into their first house.  I will do anything to get back to Florida.....even if it involves moving  

Please keep us and MJ's doctors in your prayers as we have dicisions to make.  As always, we appreciate that.  OH!  MJ has been sitting up on her own for months now, but hasn't been able to go from laying down to sitting up by herself.  However, over the past few days she has been sitting herself up!  YAY!!!! Huge answer to prayer.  She is also taking bites of food now....not huge amounts, but at least it is something!!!!  She is crawling everywhere and in toeverything.  She also starts therapy in2 weeks and we hope she will be walking by Christmas.  I have my fingers crossed that that is a realistic goal   Things have been going so well for her lately, I only pray that they continue that way!!

Much Love,

Bethany

It was brought to my attention today that my status updates on here seem to be directed at certain people on my friend's list.  I would just like to clear that up.  My status updates are not about people on here, unless I specifically state your name.  If I have something not so nice  to say about one of my friends on here, I wouldn't be stupid enough to post something so that that person could see it.  (I will just tell Steve about it, )  If I post an update about something and you think that I am referring to you, odds are I am not.  Contrary to what some may think, I don't look at every one of my friends page daily, weekly, or even monthly.  It is pure coincidence if I say something that you feel is attacking you. 

THAT'S all I am saying about that!

Today has been pretty lazy daisy.  Both MJ and I slept off and on in the guest room together (I love having her as a snuggle bunny every once in a while!!) and then we spent the afternoon on the couch watching tv and sleeping.  Steve took over for me while I ran to wal-greens for some meds and grabbed us some dinner.  However, I think that Steve is catching what I have.  I sound like I swallowed a bullfrog (croaking when I talk) and now he is starting to sound like that.  I hope I am better by Friday so I can go to work! 

Macy Jane is hanging in there.  I am not sure what teeth she is cutting now, but she is in the middle of her throw-up marathon, which means there are some teeth somewhere in that mouth making their way to the surface.  I think that I would almost rather her have diarrhea than this throwing up stuff. She is drooling like a bulldog and it is so thick.....which is what I think is making her sick to her tummy.  However, she is sleeping really well next to me right now so maybe today was the last day.  It was day 3 of it and it usually doesn't last more than 4.  She is normally all over the place and doesn't want to be held a lot but today she didn't want to be put down.    Good for me though because I get to hold her like she's a newborn...haha.

I called Dr. Joshi's office today for the MRI results.  I didn't hear back from them, but hopefully no news is good news and he will call tomorrow telling me that she looks great and doesn't need any surgery or tests for 6 months.  OH HOW NICE THAT WOULD BE!  I am praying hard for those words. 

Well, I need to get my butt in the bed in case MJ wakes up super early wanting to start the day.  I hope that everyone is doing ok and enjoying their summer!!!!

Much Love,

Bethany

I think today I finally realized that Macy Jane is not a baby anymore, she is now a toddler.    The past 13 months has flown by, even though the first 6 months seemed SO long when actually going through them.  Today, we put her carseat in the forward facing position, which officially means that she is a big girl now.  She's been over twenty pounds since her birthday in May, but I wanted to make sure with her pediatrician that it was ok to change it. 

Speaking of which, today was her checkup.  It was during her checkup that I realized that she isn't a baby.  Every doctor's visit up until now she hasn't minded if doctor's take the stethescope out and listen, or shine that big light in her ears, or stick that wooden thing down her throat.  However, today she screamed bloody murder at all of the above. YAY.  Not only did we scream, but we threw everything around us in the floor.  On purpose.  A temper tantrum?!  From my sweet little MJ?  Absolutely.  Even her cry is different.  It is so "big girlish" sounding.    She is also just lots of fun these days.  It seems like she is a sponge soaking up every noise, light, object, etc.  She trully doesn't miss much! 

She has now graduated to GoodStart 2!  Yippee for her.  Even bigger news, she ate 3 or 4 bites of mashed potatoes the other night!!!!!  Like she actually kept them on her tongue and swallowed them.  NOTHING was on her chin or her shirt.  GO MJ!   We have been working very hard with her daily trying to get her to eat.  I think she is more receptive now to things with tastes and textures being in her mouth than ever before.  You parents out there that can just pop a bottle in to your babies mouths or a spoon of food don't know how fortunate you are  I would give my right arm if MJ would like to eat orally.  I know that she will eventually get there and I will be there every step of the way cheering her on. 

Her hair has become quite the challenge lately.  I need to just cut the back of it to get the frizzy ends off of it.  The front is bizarre as well.  I am trying to grow it all out so that it will be one length but her bangs are always in her eyes.  She's always had enough hair for hairbows, but for the past few months she takes them out and eats them or throws them down.  I tricked her and put the bow on the opposite side but after a few days she got smart to me.    However, I guess I should be grateful that she has a head full of hair and isn't bald!!!  Also, I would like to know what color it is finally going to be.  There is one patch that is really blonde, then the rest of it still has a red tint to it and then on the top it is really red.  At what point is it all going to blend?!  I think she will always have a little red in her hair, at least I hope she does.

Steve and I went to Wal-Mart after MJ's appointment for our grocery run.  It was actually pretty enjoyable!  I think it is the first time that we all three had ever been to wal-mart.  However, by the time we made it to the grocery side I made an interesting discovery.  I asked Steve if he thought that we would be the type of parents that let our child get a toy every time she went to the store with us.  He looked at me and laughed because in our buggy was a giant ball that Steve wants to teach her to roll to him, a smaller ball that she can actually pick up and throw, and a few other little toys.  God help us!  She doesn't even ask for them yet and we buy them.  Oh-well......we have fun doing that sort of stuff for her and with her.  Something I thought was funny.  We went down the aisle with deoderants on it and I had her stroller a little close to the shelf.  I wasn't paying attention and before I knew it I heard some grunting and the stinker was halfway out of the stroller picking up a can of aersol deoderant.  Silly girl.  One of these days she is going to pick up something and I am not going to notice it until the security people at the door ask me about it.    It was the child......honest! 

Well, me and mom and MJ (and maybe my brother) will be headed back to Florida next week for about a week.  My sister bought the house and they close on Friday!!!  We are going down to help them move and get things settled in.  That should be a lot of fun.  I wanted Steve to go but there are 3 shifts that he can work extra so he chose to stay here.    The money will be nice I guess.....to send to bills.  Bleh!

Well, it is almost midnight and I don't feel well.  I have a sore throat and just feel lowsy.  I think MJ has something as well because not only is she teething but she also has a snotty nose and her eyes are watery looking.  Please say a prayer that we will be better tomorrow!!!  No more doctors and hospitals please!!!

Much Love,

Bethany

We are finally back at home....safe and sound.  My Miracle Baby is sleeping soundly in her bed......so peaceful   It has been a long day of sitting and waiting, but things went okay.  Macy Jane has at least 30 puncture marks in her arms, legs, and neck.  From what you may ask?  IV starts!  30 freaking times!!!!  I was so shocked when I saw her poor pin cushion of a body.  I think 30 times is a bit rediculous, especially since she hasn't been stuck for an IV since her heart cath in April, where they got the IV on the first attempt?!  And before that, she was stuck for labs one time since December.  It was so many needle sticks that Dr. Joshi gave her a dose of IV antibiotics just to cover her.  Thankfully, her reflux has gotten so much better that they were able to put her to sleep with the gas before they stuck her.  She has no idea what happened to her.  Also, they used Diprivan to sedate her instead of narcotics...thank you thank you thank you!  She won't be high all night long now!  When she has narcotics she doesn't sleep for what seems like days.  Anyways.....

Dr. Joshi made a special trip to see us after the MRI was over.  He gave us a preliminary result based off of a few pictures that he saw.  However, he had over 3,000 different pictures to look at between now and Monday before we get the official word.  So basically I am saying that what we were told today may change on Monday or more stuff will be added.  Whew.  Her heart function appears to be good, as in it is able to pump the blood efficiently to her body/organs.  He also said that her conduit appeared to be okay, not narrowed, from the one angle that he saw it, but he would have to check the proximal images.  Her right ventricle is still dilated, but he said that is 100% expected and normal for her diagnosis because she does not have a pulmonary valve yet.  So, that part is all pretty good news.  We were kind of shocked because he mentioned that this MRI may show us that she needs another heart cath, open heart, or nothing at all.  We thought this MRI was to tell us how soon we were going to California and didn't think there were any other options.  How wonderful it would be to hear news that she wouldnt have to undergo any more procedures for a while?!  We are all praying earnestly for that.  She has come so far developmentally and is actually eating a little bit by mouth and if she has surgery it will be steps backwards.  However, we are not getting our hopes up.  Whatever happens is God's will, no matter what. 

Once again, I was reminded today of what an awesome little girl that I am so blessed with. (We are blessed with )  God has blessed us more than our share and I can't wait to see how He is going to use MJ.  It is quite obvious to me that God had a specific plan for her life because we have almost lost her many times and technically she shouldn't be here based on her diagnosis.  I am so undeserving but I am thankful that I am able to see our beautiful daughter everyday.  She lights up my world and if I am ever feeling blue she is always able to cheer me up by smiling that beautiful smile or waving at me.  Gosh....I love her!    What a tough little girl she really is.  To have been through so much and to be so happy.....still.  I am trully amazed.

Well, MJ was intubated twice (put a breathing tube down her throat) because the first tube was too small.  Because of that they gave her steriods to help with the swelling in her airway.  Thankfully she seems to be fine.  We will of course watch her closely tonight, but she played all afternoon like nothing happened.  If you think of her, please say a prayer that she will sleep well tonight.  Thats what she needs the most!

I am going to be busy for the next few days.  I work tomorrow and Saturday, have church on Sunday (we are trying to find a new one.....always stressful for me!), work Monday, MJ has her pediatrician appointment on Tuesday.  Finally on Wednesday I think I will take a break and enjoy life   That is unless something else comes up!

Well, I am going to get things ready for work tomorrow.  I hope everyone is doing well and thanks to those of you who prayed for us.  Keep it up!

Much Love,

Bethany Jane

Things are going ok in the Wiles household.  It has trully been a really busy summer so far and it doesn't look like it is slowing down anytime soon!!  We went to Florida for 11 days and stayed on Pensacola Beach in an awesome beach house with my entire family.  It was gorgeous every day except for one.  MJ seemed to like the water, alot.  At first we sat her in the sand and let the tide come up on her....she wasn't too sure what to think about that   We bought a kiddie froggie pool and put some water in it for her under the giant umbrella so that she wouldn't get too hot and burned.  She loved it! 

While we were there, my sister and brother-in-law found a house to buy!  The market in Florida sucks right now because of the hurricanes etc.  so I am glad that they could find a house!  They are hoping to close next Friday, if they do, me and my mom and MJ will head back down there to help them move and get settled in.....and maybe go to the beach again   That is if I can switch my days at work around.   

MJ's health seems to be doing ok.  She is getting in to everything and showing me her personality more and more each day.  She has to go to LeBonheur in the morning for a cardiac MRI.  The MRI itself is not a big deal, but they have to give her general anesthesia and put her on the ventilator to control her breathing and hold her breath for her in certain parts of the test.  The results of this test will show us how much time we have until we need to go to California again.  I have noticed that she breaths a little harder at times, but then again she is crawling around a lot more as well and using more energy.  She is still fed by G-tube (lots of people have been asking me about that lately?!) but in the past week or so, she has actually let me put some baby food in her mouth without her immediately trying to throw it up.  She also swallowed some gerber graduate puffs!!  She coughed, but at least she didnt puke them up!!!  She STILL isn't in any therapy.  I have been calling TEIS every single day and leaving her coordinator messages.  They have until Tuesday to call me back or else I am leaving it up to her pediatrician to get her in therapy.  I am so aggravated because it has been 6 freaking months since I called them to refer MJ.  That is entirely too long!  I hate the state of Tennessee when it comes to having a sick child.  The just SUCK. 

If MJ's health remains good, Steve and I are going on a cruise in January with some friends from work.  We had planned on taking a cruise each year to celebrate our anniversary and of course last year didn't happen, but hopefully Jan 09 we will be gone!  I don't know how I will handle being away from MJ for 7 days, but we need a vacation together....away from all of the stresses of life. 

Hopefully I will be able to upload some pictures of our vacation and the 4th on here.  Today I am busy cleaning the house top to bottom.  BTW.....just have to mention this and see if it is crazy to anyone else but me.  Apparently yesterday I left my wallet at Target.  I checked out and paid so I must have either left it at the register or it fell out of MJ's diaer bag in the buggy.  Well, I didn't even realize it until they called today letting me know that they found it.  So, I told the girl that Steve was in town today running errands and that I would like for him to pick it up and she proceeded to tell me that she couldn't give it to him.  Only me.  I told her that I had to have my wallet tomorrow because it has MJ's insurance cards in it and that I couldn't get to Target today because Steve has the car seat and was like 5 minutes from target.  She continued to say that she couldn't give it to anyone else.  I offered to tell her everything that was in the wallet, my SS number (since that card was in there), I even told her my driver's license number?!?!  AND They called my house number.......obviously I am who I say I am if I can rattle all of that information off in twenty seconds.  I was so frustrated with that stupid woman.  Finally she talked it over with another manager and decided that Steve could pick it up if he could show ID that he was who he said he was and prove that we live at the same address.  For crying out loud!  This incident and their return policy are pretty close to making me not want to shop there.....but I love their stuff!  Grrrr.

Please, if you think of it, say a prayer for MJ tomorrow.  I know that she will do just fine.  The only thing that will stop the MRI is her throwing up.  Her reflux has gotten so much better over the past 2 months.  However, whenever she is cutting teeth (which is like every other week) she will throw up for 3-4 days and then be fine for a week and a half with no throw ups.  Well, today she threw up once and usually that means that tomorrow she will start the non-stop throwing up.  I sure hope not because I have been dreading this test and just want to get it over and done!  Say a little prayer  

Well, the dishwasher is done, so I need to get the kitchen finished up!  I hope everyone is doing well. 

Much Love,

Bethany

We left for Pensacola yesterday at 11am and finally arrived at 7pm.  It took a little longer than usual since we stopped longer than we normally would.  The days of getting in the car and stopping once for gas & potty are over now that we have a child   MJ did really really well in the car, if I must say so myself.  She got cranky one time when she was SO tired and didn't want to just give in and fall asleep, little stinker!  Anyways, it feels so good to be down here with my family knowing that we don't have a thing that we HAVE to do for the next 10 days.  YIPPEE! 

Tonight we all loaded up and went to look at a house my bro-in-law found on the net.  (they have been house hunting for about a year now!)  Well, they didn't like what they saw but continued to drive around the town.  They happened to see a realtor putting up a for sale sign in a neighborhood and she actually showed them around the house, since it was vacant.  It is a really nice house and would be perfect for them and is the perfect price!  They are discussing it tonight and may put in an offer tomorrow!  SO EXCITING for them!  Their first house   It is a great starter home with 1800+ square feet and a nice yard.  I really hope that it works out for them, they have been looking for so long.  It is hard to find a house down here because of the cost of house insurance if it isn't built in the past 4 years.  I wish we could transplant our house down here.....we could make a nice chunk of change.  *sigh* 

We will be coming home on July 1st, but if they get the house we may be coming back sometime in July to help them move  

Update on MJ.....she is doing really really well!  Learning new things every day and developing her personality....and her temper!  I love it though.  I have been teary lately when I think about what she has been through.  I thought it was kind of ironic on June 19th.  We drove to Florida on that day.  One year ago, June 19th, 2007 MJ was re-admitted to Lebonheur and that marked the beginning of her hospital stay for 6 months straight.  A year ago we didn't know if we would be going on vacation for a long long time and if we ever got to go, would we have our precious daughter with us?  The 19th was a joyous day for me, but I couldn't help but cry.  God has been so good, and I am so undeserving.  Even since we have been home I have not gone to church like I should, but I will start.  God has been so gracious and awesome in my life, there is a reason in all of this. 

Well, I stayed with MJ while everyone went to eat seafood.  I hate to disturb her sleep schedule and she went to sleep between 7 and 8, not exactly the time to be taking her out to a restaurant.  I want a happy baby tomorrow, not a crabby baby   I can't wait to see her reaction to the beach!  I think she will like it, but I have lots of diversional activities for her, just in case she doesn't! 

I am going to go check on her and give her some mommy sugars.  Those are the best   I hope everyone is doing well!

I just looked back to see when I last blogged, so that I could fill everyone in on what's been going on in our life since the last post.  I was shocked to see that it had been a month and a half!  Since, April 30th to be exact.  That could only mean one thing, life has been going well and we have been busy. 

I started back to work the second week in May!  I am very thankful that my boss is understanding with my schedule and allows me to be flexible with it.  I didn't realize how much I missed working until I actually went back.  Don't get me wrong, I am so thankful that we were financially able to allow me to stay at home MJ's first year, but the timing was perfect for me to return.  I am not usually one to "stay-at-home" and be Suzy Homemaker.  I start to get a little cabin fever after a while.  Plus, returning to work not only means that we can finally buy some I wants instead of I need's, but it also helps me to see that no matter what is going on in my world, there is ALWAYS someone that is worse off than me.  I believe that God called me to be a nurse and when I can't do it, I miss it.  It is also good to get out of the house and have time with friends.  Yes, I know that I was doing some nursing things with MJ, but I don't consider being a mommy and taking care of my baby as being a nurse. 

MJ stays with my mom mostly when I am working, unless Steve is off that day.  It is wonderful that mom can do that for us and MJ loves going over there.  They have a dog, Sammy, and she loves to play with him.  It does her good to go different places and explore the world!  We have started taking her to the zoo.  We went ahead and bought a membership because each admission is so dang expensive!  Several of our friends go all of the time so we try to make play dates out of it.  She seems to enjoy it!! 

Hmmm.....what else.  She had a wonderful birthday!  I don't know exactly but there was probably 40 or so people that showed up.  It was an awesome celebration of her life!!  It feels like she should be 2 or 3 with the amount of stuff that she went through, but alas, she is still my baby  However, my baby is turning in to a big girl!  She now has her top two teeth and is trying to cut several more.  However, we don't have any on the bottom yet!!  She has been sitting up for probably close to two months now on her own and she does the military crawl all over the place.  Occasionally she gets off of her tummy to crawl like a big girl, but she doesn't do it all of the time.  She manages to get in to everything!  Luckily, I don't like things cluttered in my house so I don't have too much baby proofing to do.  She also said her first word a few weeks before her birthday.  It was "MaMa!"    She says it all of the time  and it melts my heart EVERYTIME!  She babbles quite a bit, which is awesome considering she didn't discover her voice until February!!!!  She has mastered waving bye bye and is imitating things that we do. 

As for her health:  she hasn't been "sick" at all, PTL!  However, each time that she cuts a tooth, she has throwing up days.  Usually they last for 3 days and then she will not throw up again until her teeth are acting up again.  The break from throwing up has been nice and when she does throw up, it makes me even more grateful for the days that she doesn't!!  Hopefully she is starting to outgrow this reflux crap.  Grrr!  She is supposed to have a sedated MRI on July 10th to evaluate how her heart and lungs are doing.  They will send that information to California and get a date for her next surgery.  I am hoping it will be late August or September before we have to go to California.  (or longer!!)  Her cardiologist did tell us that she will more than likely need to have this surgery and maybe one or two more surgeries before she is an adult (that doesn't count valve replacement surgeries, if she needs them down the road)  She will continue to need heart caths every 6 months to a year.  We can deal with all of that! 

 We are leaving for Florida on Thursday!  We are staying with my sister the first two days and then we are staying at our beach house from Saturday until the next Saturday, then back to Dee's until the following Tuesday.  Almost 2 weeks away from home, I can't wait   We got MJ some adorable bathing suits and I can't wait to see her in them.  I am curious to see how she will react to the beach.  My sis has a giant umbrella that we are going to put MJ under so that she doesn't fry......thanks to her red hair and fair skin

Well, I guess that is an update for now.  I hope everyone is doing well & I will try to be more prompt with my updates!!  After Florida, that is!

I just got off the phone with an advisor in California and got the long awaited answer on our financial assistance application.  Let me back up and explain what happened to make us apply for that.

The physician bills for September '07 were not paid by our former insurance company when they should have been so we were left with $60,000 in unpaid bills.  Thankfully, MediCal (a program she was on in CA since she was in the hospital 30+ days out there) paid for all but $15,000 +.  We got a bill a few weeks ago asking for payment in full by April 15th.  I laughed and then cried my heart out when I got the bill. 

However, because the average income in CA is quite a bit higher than in TN for a family of 3, we qualified for 100% assistance, by the grace of God!! If I had returned to work any sooner, we would not have qualified!!!  So as of today, we owe California ZERO dollards, praise the Lord!!! 

This couldn't come at a better time.  I went to Baptist yesterday and filled out an application to get my old job back and will hopefully start next week or the week after.  I also found out I will be making more money than when I left, always a good thing   God has been SO good to us, I am just in awe. 

Thanks to those that have been praying for us during all of this.  It has been quite stressful getting these bills in the mail each week and wondering how we would pay for them.  God is in control and even though we are in the upper middle class, according to the stupid government, we didn't have to work the system (aka get a divorce and go on Tenncare) in order to pay our bills.  I am So thankful that we didnt have to do that!  (no offense to those parents with chronically ill children that did have to get a divorce just so they could have health care coverage for the child)  It is sad that it has come to that in America, but it has. 

Anyways, I am off to play with my baby girl who is trying so dang hard to crawl, it is hilarious to watch!!! 

Much Love,

Bethany