Monday, August 31, 2009

He Listens

After a morning that seemed like an eternity, it finally came time to find out our son's fate. I was on the verge of being sick all morning. The stress and fear was overwhelming. However, the moment our nurse took us back to do the scanning all over again, she told me to leave it at all at the door, she said we were in the right place and that there was so much that can be done for heart babies and it was time to relax now. After about 15 minutes of scanning, I literally almost fell asleep. The lack of sleep, the adrenaline, the nausea left my body as I laid and let them do what they needed to do. I knew I was where I needed to be and as I crashed from 4 days of paralyzing fear, a calm came over me and I felt that we might make it through this.
So, here's what we know:

Paxton has been diagnosed hypoplastic left heart syndrome.

Hypoplastic left heart is a rare type of congenital heart disease. It is more common in males than in females.
The problem develops before birth when there is not enough growth of the left ventricle and other structures (aortic and mitral valves that guard the exit and entrance of the ventricle and the aorta, the blood vessel that carries oxygenated blood from the left ventricle to the entire body).
In patients with this condition, the left side of the heart is unable to send enough blood to the body. As a result, the right side of the heart must maintain the circulation for both the lungs and the body. This extra workload eventually causes the heart to fail.
The only possibility of survival is a connection between the right and the left side of the heart its blood vessels, through which blood may pass. This is called a shunt. Babies are normally born with two of these connections (the foramen ovale and the ductus arteriosus), which normally close on their own a few days after birth.
If ductus arteriosus is allowed to close in a baby with hypoplastic left heart syndrome, however, the patient will quickly die because no blood will be pumped to the body.

Just after birth the doctors will administer medications to keep the ductus open and allow us some time before Paxton will receive his first surgery at 1 week old.

I will induced in St. Pete at around 38 weeks, they want him nice and plump for surgery. I am not required to have a c-section, can nurse him and hold him for a short time before he is transferred to the cardiac intensive care unit at All Children's Hospital. During that first week before surgery I will be visiting him constantly to get him in the routine of nursing in the hopes that after surgery he will remember and continue to eat. Some heart babies have trouble eating after surgery so this time will allow us to teach him as well as allow us to bond.
Then post-op, if all goes well, Paxton will be in the cardiac intensive care unit for 3 weeks give or take. After that, he can come home. This will require me to be in St. Pete with my boy for at least a month. I am so sad that I won't be home with my other two boys, but the baby will need me and I have to remind myself that they won't remember this time while I am away. I will see them on the weekends and while it will be hard, I must be there for Paxton during such a crucial time.

At six months, he will have to endure another surgery and again at 2 years! It takes 3 surgeries to complete the "rearranging" of his heart. There will be shunts placed and taken out. Valves reshaped, veins and vessels reconnected. The only other option per our fetal cardiac surgeon is a total heart transplant and he does not recommend that route.

It's a lot to take in. It's hard to imagine our baby going through so much in such a short time, but the alternative is unthinkable. Options, a plan of action and hope were laid on the table for our boy today. My husband and I feel like a weight has been lifted. I feel like I can breathe for the first time in 4 days. My stomach no longer has the knots in it that barely allowed me to eat and I just might sleep a good sleep. We had dinner together tonight on the way home and found it very weird that we were relieved that our baby was having 3 surgeries, but when you are given the worst case scenario as all to go on for 4 days, you suddenly realize you will do whatever you have to do for your child, even surgery, three of them... It's a whirlwind, a blur, I feel like I am in a movie.
This is not what we planned and I am insanely sad about it, but as Dave told me, it's a test and together we will make it through this.
Paxton is a fighter! We can see this already and I hope that he continues to fight in the days and months ahead. We have roughly 5 weeks to allow him to grow as big as he can get. I have 5 weeks to spend with my Austin and Mason and soak up all the love that I can. I have 5 weeks before I am tested yet again as I hand over my baby into the hands of people I don't even know in the hopes that they will save his life. It's overwhelming and scary. I am scared of so many things right now, but the baby that is kicking me as I write this has a chance of making it home to his brothers and for that chance, I am forever grateful.
It's going to be a long road for all of us, especially our little man, so we ask that you please, please keep praying for him, because God does listen.

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Thursday, August 27, 2009

It's A Boy!

In light of recent news, we decided to find out the sex of our baby.

I would like to introduce you all to our son, Paxton David West.

He has already proven to be quite a fighter, very much like his brothers (picking his nose on ultrasound = ) and a protege of his brother Mason. Even via ultrasound, there is no denying that he looks just like Mae Mae.

He currently weighs 4 lbs 4 ounces inside my belly. As you can see from the picture, he has chubby cheeks and big, puffy kissable lips. He's extremely active, has hiccups all of the time and is loved beyond any sort of measure.

I have always said, I can see myself with a house full of rambunctious boys and I pray that God has the same plan for us. I can continue to say, "my boys!" I can keep my email address (lovemywestboys). Dave can name his boat my 3 sons, which has been his dream since our first son was born.

Another boy! What a blessing, no matter what the outcome. So now that we have a sex, a name and a face to go with the our prayers, I ask you to continue to pray for our boy.

I am headed to St. Pete on Monday where I will undergo a scrutiny of tests to determine delivery and prognosis for Paxton. May God hold us in the palm of his hands as we learn his fate.

Our beautiful baby boy is such a miracle and I dream of the day I might be able to bring him home and lay snuggled with him in our bed.

IT'S A BOY! I can't stop smiling!

How I love you Paxton David. Ma Ma will do whatever she has to do to get you home to your brothers, God willing. We love you sweet, sweet boy.

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Pounding On Gods Door

Yesterday was a long, long day. I went in for my appointment at 1:30 and did not leave until 5:00 pm. They scanned me for 3 hours.

It's not good.....

Our baby is very sick......
I am not sure that I have wrapped my brain around all of that has been thrown at me in the last 24 hours so I will start with the facts.

The baby has significant congenital heart disease.

As she scanned me, she stopped, looked at me and said, "I want you to know you will leave here with information but there is a problem." The room closed in around me and I was less than seconds from passing out. I could not breathe. Tears immediatly flowed. She told me that there were things she needed to get to better determine how to help the baby and so I looked at my husband and asked him to help. Never have I loved him more as tears filled his eyes trying to be strong for me. It was happening all over again.
As of what we know now, the baby's heart is bad. The right side is much larger than the left side. The left side has not developed as it should, is scarred pretty badly from having to work so hard to keep going and is getting very little blood flow. The baby continues to grow because s/he is in my belly and has me to help, but the moment we cut his or her umbilical cord (a day I have suddenly come to dread, I wish I could help forever) the baby's heart is NOT in fact healthy enough to take over. The moment we cut the cord, we have approximatly 8 minutes before our baby cannot breathe. That being said, I am headed to St. Pete either Friday or Monday morning to see a world renowned cardiac fetal surgeon. He will reevaluate us there. Re do all of the testing and pinpoint exactly why the baby has heart disease, whether it be a valve problem an aortic problem or whatever. The heart is complicated and messy so he has a lot of work to do. He will then determine when we should deliver and I will be delivered in St. Pete where they are prepared to do whatever intervention is neccessary as soon as the baby comes out. Surgery is more than likely (hopefully it is an option) depending on what it is exactly. We may put in a heart catheter to buy us some time. Honestly, until I see the surgeon I know very little about the baby's prognosis (outcome) I am desperate to get there to find out if we have a shot in you know what of saving our child. I am angry. I am sad. I hurt for my kids who will not understand the changes and why Mommy is gone. I hurt for my husband who is dealing with this the best he knows how, since the rug was ripped out from under him. I hurt for my baby who will likely go through many, many procedures, who will be whisked away from me the moment I meet him or her. There will be no sweet cuddling and nursing as every Mother imagines just post partum. I am sad for me, sad that I can't seem to get this right anymore. I wonder if we pushed our luck wanting a big family and yet others have so many kids. Some have none. This is out of my control. I sit here in the early hours grateful that sleep did in fact come to me last night, knowing that we have a long, long month ahead of us until our baby is born and who knows how long after that. I will have two babies here at home and one in the cardiac intensive care unit in St. Pete undergoing who knows what for however long, if all goes well. Funny, if all goes well, means the baby is in intensive care, that doesn't make sense, but I can't say what is really intended to go there. I am trying to stay positive, although fear has gripped every ounce of my being. I am reminding myself that I can do nothing but be where I am told to be and to let them do what they need to do. I am learning more than I ever thought I would, how to hand over the reigns, with myself, my boys, my baby. I am having to ask for help and I do NOT like having to ask for help. I am going to have to lean on those around me more than I ever have before, I have no choice. I need help. Help to keep my family going while I am delivering and while I stay vigil at my baby's bedside in St. Pete, all the while my heart aching to be here with my boys. How, how, how is this happening. We made it to 32 weeks with what appeared to be a beautiful, big healthy baby. I let myself finally get excited. I prepared. I am sitting in his or her nursery in the dark as I write this wondering if I will ever fill it with my baby's presence... This is so hard and yet it's not up to me. I wax and wane through self pity and knowing that God has a plan. I am pounding on his door right now begging for my child. I pray and pray and pray some more. It's all I know to do as the waiting game has begun...I am wondering the lesson in this year we have been handed. I wondering where we will be next year at this time. I am wondering how to prepare myself for what's to come. I beg of anyone who reads this, please take a moment and send a prayer out for our baby. We did find out the sex. As I write this I know the gender of our baby. It was a decision we did not want to make. We wanted a normal delivery with the most precious surprise waiting at the end, but unfortunatly life had other plans for us. I decided that I wanted to know. The baby is going to be whisked away from me moments after I see him or her. I do not know the outcome of this delivery and because of that I wanted to know so that I could have that one last connection with the baby, knowing who he or she is these last weeks in my belly. I want a name with the face, the kicks, the hiccups. When I talk to him or her, I want a name. When I pray I want a name and we have one. That will be another post, very soon, where I will celebrate the gift that is inside me for today. I don't want to share that news as I write what I have written above. So stay tuned because we have a long road ahead of us. Writing is an outlet for me and I know as the days inch closer to meeting our baby and as the anxiety builds I will be writing more and more. If you would like to hop on for the ride, we would love to have you. We are the Wild Wild Wests and by golly that names suites us more and more, all I ask is that you pound on God's door with me for our baby and for others who are walking this dark, scary unknown path.

"God grant me the serenity to accept the things I cannot change"

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Tuesday, August 25, 2009

Where Do Broken Hearts Go...

As sure as the sun rises and sets, I am confident that God is giving me a run for my money this year. I wasn't sure if I wanted to share or write about this, but this blog was in fact started during one of the most difficult times in our lives and today's story is no different. We are yet again, leaving our baby in God's hands. To start, today was the boys first day of school. Mason did fabulously, but Austin had a hard time leaving his Ma Ma, as usual. I won't say I didn't cry either, I just did it once we left. The harder the fight he puts up the more I know he needs this time away from me, but that doesn't make it easy. Once I dropped them off, I had another check up on the baby. What I thought was going to be another routine check up was anything but. I had an ultrasound to check my cervical length because I tend to deliver early and my doctor wanted to be sure my cervix was where it should be. It was, but the baby's heart was not. It seems there is a fairly decent size "something within the heart." She also had trouble seeing all four chambers. I knew as she continued to probe over my baby's steadily beating heart that something was off. I asked and she showed me what she was looking at and it was obvious. I, then headed to the waiting room, for what seemed like an eternity but was maybe 10 minutes max and tried to keep it together. My mind was/is a whirlwind of all that it could be. My breath felt/feels like it has been sucked out of me. Finally I was brought back and we went over the findings as I wrote above. So, tomorrow I am going to a fetal/maternal specialist to get a clearer understanding of what is in my baby's heart and what it could mean for delivery. I may have to go to St. Pete depending on what they find because St. Pete specializes in strictly fetal cardiac care. Worst case scenario, the baby needs intervention right after birth and we plan on a St. Pete delivery. At this time, the baby's weight is fantastic so in the words of my doctor, his or her heart is doing all that it should right now. His concern is the moment we cut the umbilical cord, is the heart healthy enough to take over. This will be determined tomorrow. I am on bended knees right now praying for my baby. I am reminded yet again how deeply love for my children runs through my veins, even ones I have yet to meet. I am also reminded that there are no guarantees in life, that God has a plan and I can jump on board with it or I can fight it every step of the way, but his plan will prevail. Obviously we are prepared to do whatever it takes for our baby, but the not knowing is killing me and I do mean killing me. This ache in my big, round tummy will not cease and I want to reach my arms in and smother this baby with all the love that I have. Before my ultrasound began today, I was sharing with the tech my experience in dropping Austin off at school and I said that being a Mother is so hard. We are never, ever the same. Our hearts are forever in these little people that we make and as this one grows in my belly and kicks me daily, my heart has been given away once more. As, my strength is tested yet again, I will forge ahead knowing the outcome is not up to me. Life continues to knock me off my feet, but I will get up folks. I may be a sobbing mess, but I will get up! Please pray for us as we head into the unknown. Pray for strength, where strength is low. Pray for our baby that looks just like his or her brother to be ok, to make it into our arms whole and healthy. Pray for me, as I watch the clock tick ever so slowly to tomorrow at 1:30, for patience and peace.

God grant me the serenity to accept the things I cannot change...

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Sunday, August 23, 2009

Where Does The Time Go

Yesterday was a day that sort of crept up on me. Sometimes after loss, you don't realize how a reminder can sneak up on you out of nowhere. My dad holds an annual road race every year as a fundraiser for his running team and yesterday was the that day. As I was showering Friday night thinking about the race I realized that it has been a year already since I found out I was pregnant with Tadem. It was last year at my Dad's race that I announced to the family that I was pregnant with him. I had a shirt made that said, "third times a charm" and while it took my ever so sharp Sister and Mother to "get it" they eventually did. I had no idea at that time, the year that lay ahead of me. I stand on the other side of that year pretty darn proud of myself. The reminder really stung, but I see how far I have come. I was rock bottom for awhile there, but I now know the purpose and lesson in my loss and for that I am ever so grateful. I look down at my very large belly right now and smile, for I am reminded that life is ever changing and that there are no guarantees. I may have feet that ache so bad right now I just assume chop them off nor am I sleeping worth a darn and I have gained the most weight I have ever gained during pregnancy which has me feeling like crap about myself, but what I don't feel is anything but joy over this blessing. I am taking every ache, pain and pound as a gift. I am pregnant, very pregnant and that is amazing. I did not think I would ever make it to 8 months again but here I am, counting down the days until I meet my baby. Dreaming of whether it is a girl or boy. Knowing that in the blink of an eye I will be looking back on this very post in hindsight wondering where did the time go...
This picture of my boys brings me to tears. Look at them!

I sometimes wonder what they would do without each other...

Masons little feet hanging on with all he has trying to be a big boy like his brother. I think I can...I think I can... and he so did!

Of course I had to post these pictures too!


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Friday, August 21, 2009

Sea World

We decided since the boys are so into all things marine animals, to take a trip to Sea World this Summer. We got home last weekend and I am just getting around to blogging about it. It took me this long to recover and this long for my "cankles" to go down, ha! We did however, have a blast.
For starters, a friend told us about this amazing resort to stay at. We took her advice, as I often do, and booked a place. We are not talking your typical hotel room. No, we got a three bedroom villa that was decorated ahem...nicer than my own house.

The price was unbelievable, thanks to the economy, I am assuming and this set up allowed the boys to have their own room, my sister and brother theirs and we had an amazing master suite. Just so you get an idea of how nice it was, I did not feel the need to wear my shoes 2-4-7 as I do in a hotel room. I did not wipe anything down and even used the kitchen. For those of you who know me, I am a germ freak. I wipe everything down wherever we go, always wear shoes, don't let the sleep on the bedding and most certainly would never sit on the floor and play. This place, however, was cleaner than my house and the boys loved it!

Not only was the room/mini house nice, but they had a waterpark for the kids to boot! I mean seriously, it doesn't get any better than that. The boys, especially Mason, could not get enough of the waterslide and I loved the lazy river. I can see us spending a lot of time there even without Sea World.

When we spent time at Sea World, the boys were completely enamoured with all of the animals. The loved the dolphins best and Austin still reminds me to this day that he "had fun with the dolphins" It so sweet that he remembers for however long that may be that we had fun together.

I am so glad that my sister and brother got to join us. The boys completely adore their Uncle Adam and Auntie "Sha Sha" so whenever they are with us the boys are so happy!

Above all, we got to spend time as a family together. The love they showed us melted me to pieces. It made the lack of sleep, the cankles and the effort beyond worth it. Anything for my babies...anything!

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Thursday, August 13, 2009

Lots Of Changes

Well, we have been a busy family lately. We officially got our "mini." Although, I was feeling really guilty about getting rid of the Navigator that my husband so dearly loves, I know the switch is really what we needed. He says he is going to tint the windows so dark that no one can see him driving it. I am hoping he will get used to it and see how much easier it is after some adjustment time. Cause let me tell you, I freaking LOVE it! It is so convenient and easy for loading and unloading the kids. They, too, love it! They got in and looked around in total awe~it was cute!

I am thinking they love it, how about you? Well, Ma Ma sure does and I am thankful to my honey who finally let me get my mini! I loved the "navi" too, don't get me wrong, but when you have a 3 year old, a 2 year old and a soon to be newborn, the coolness factor goes straight out the window and suddenly the swore I will NEVER get a mini van girl is begging for one. Practical wins in the end!
(PS I don't know why we have nicknames like, navi and mini, for all of our cars. We are just cool like that = )
We have also, ahem....begun to prepare for baby! Can you believe it? I am finally allowing myself to get excited and prepared. I mean I really should, given that I am due in 2 months and have always gone early. Sooo, we took Mason out of his crib and moved it down the hall to the baby's room and put him in his big boy bed. Lets just say there has been very little sleep happening around here lately. The boys play and play and play until they collapse into bed or... on the floor.

Look at Mae Mae in his big boy bed. I just can't believe it. He loves it and is very proud of himself!

My baby is growing up!
So, baby's room is ready. Well, mostly ready. We still need to find out if it's a boy or girl so we can paint and order bedding, but the furniture is in place and we ordered my nursing chair. My boys are loving the new arrangement, other than lack of sleep that sometimes catches up with them at the end of the day. Who, can blame them, it catches up to me too.
And lastly, I just wanna know who wishes they were a West boy...

I know my husband says all the time that he wants to come back as one of our kids. Can't say I blame him! They do have the life, but Ma Ma can't help but spoil her babies!

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Thursday, August 6, 2009

The Miracle Of Life

Today was such an amazing day! We were given such a gift. Our doctors office got a new ultrasound machine and needed patients to practice on. Of course, I jumped at the chance to see our baby since it has been nearly 11 weeks since our last peek. It was truly breathtaking! For starters, I think I completely changed my mind from girl to boy. Going in today, I have been feeling that it's a girl, simply because this is the most active baby to date. I mean the child does not stop, which I consider a blessing this time around since we lost our last baby and I have been a little (ok a lot!) more nervous this pregnancy. So the constant movement has been so reassuring. The baby looks exactly like Mason. I mean s/he has his nose, his chin and his chubby cheeks. Oh' yes and s/he literally picked his or her nose right on camera for all to see. I mean, if that isn't Mason I don't know what is!!!!!

See, that's MASON! Well, for those of you who know Mae Mae, that picture is a duplicate of him! So now, I just don't know if it's a boy or girl anymore. I am freaking dying to find out! Healthy is all I care about, but I have to say the suspense is killing me, and I am pretty sure after today that it's killing my husband too. Oh' and my sister too!
Here, the baby is yawning, you know cause it's hard being a super star and all!

The baby weighs 3 pound 2 ounces and is measuring a week ahead, but that's never a shocker considering its a West baby! Last week, Dave and I went to Babies R Us and got all of the essentials for the baby. I won't lie, I literally broke down in the middle of the store. I could not believe I have made it this far. I am over 7 months pregnant and finally allowing myself to prepare and plan for this baby. It was so exciting and yet emotional at the same time. Losing a baby changes things. You never look at pregnancy the same therefore to make it this far is such a joy. This weekend we will begin to get the baby's room ready. Although I will not paint or buy bedding until we know the sex, we will put Mason in his big boy bed (ahh!) and give this baby his furniture. The ultrasound today just added to the excitement and joy! I now have a beautiful little face to go with the constant kicks and movement. I will close my eyes tonight in gratitude for the peace that has been given to me, for the gift of seeing our baby today and for our health to this point. I will close my eyes and pray that everything continues to go well and that we make it to fruition with a beautiful, healthy baby boy or girl in 2 months. Life is good. God is good and he continues to remind me that he is near.

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Wednesday, August 5, 2009

Austin Finally Catches A Break

Austin is our first born. My gentle, sensitive boy that has no doubt had to jump through many, many hoops. Although, I know there are others going through much, much more out there. In our world Austin has had a lot of issues we have had to work through. It started when he should have been crawling, walking and talking. I noticed then that he was delayed in these areas. I was told by our pediatrician that I was just a nervous first time Mother. When Austin continued to be severely delayed in crawling when he really should have been walking, I continued to push our doctor for a second opinion. In all honesty, it was my greatest fear that Austin had autism. He was not crawling, talking or walking as he should be. He would sit on his rug full of toys and circle his hands and feet continuously. Although he was sociable and very outgoing, the circling and delays had me extremely concerned. Finally, I got my doctor to refer him to a neurologist. With relief that we might be getting somewhere we headed to the neurologist. She did not think that Austin had autism, much to my relief, but did diagnose him with hypotonicity. It is a muscle condition in young children that they do outgrow. Basically in a nutshell, his muscles were weak and overly (hypo) well...floppy, which led to the circling of his limbs. We were refered to speech and physical therapy at under a year of age to try and get him caught up. He did not like it, but it's what we had to do. We continue to have him in speech and his current therapist has helped him ten fold. He now talks and talks and talks. Austin has also had to deal with ear infection after ear infection as a baby. After nearly 10 ear infections before a year of age, we decided to have tubes put in. The anesthesia scared me to death, but in hind sight the surgery was the best thing we could have done for him since he has, only recently, had one ear infection since the tubes were placed.
Then, about a month ago, I noticed a pale patch of skin on Austins forehead about the size of a quarter. I didn't think much of it at first until it started to spread and spread. I originally asked his pediatrician what it might be and she said it could be a fungal infection. So we tried an anti fungal cream on it, to no avail. As we spent our week at the beach we began to get more and more nervous about what was going on because the patch was now significantly lareger and spreading down around his right eye. (In this picture, you can get an idea of the white patch on his forehead. Although harder to see in the photo than in person)

So we went back to our pediatrician and she diagnosed our son with vitiligo. I haven't talked to to many people about it because I was working on acceptance and I didn't want to feel like I had to explain or share with others that it wasn't contagious. I felt the need to justify or explain it and I just didn't want to. Vitiligo is actually the same thing that Michael Jackson had and the "reason" he supposedly had his skin bleached. On a black person it is much, much more obvious than it is on Austin, but we were still extremely upset by the diagnosis. We know how cruel kids can be and there is no way to stop or prevent vitiligo from rearing its ugly head on different areas of Austins body and there are few options available to repigment the skin where it has been lost. In other words, the big white area on his head could possibly A.) spread B.) never go away. Dave had his moment of sadness where I lifted him up and then came mine. I sobbed and sobbed for my son. He is just so beautiful and I felt like he had already had to jump so many hurdles, why oh why did he have to be given this too. I had to remind myself that he is otherwise healthy, happy and beautiful and then I dug my heels in and became determined to figure this out. Our pediatrician refered us to a specialist and today was that day. We LOVED our doctor (who was just as pregnant as I).
In what came as a complete shock to us, she determined that Austin does NOT in fact have vitiligo! I melted into tears instantly. I had really accepted that vitiligo is what he had and so to hear otherwise was such a blessing. He has pityriasis alba ( I know ya'll know what that is, ha!) basically this too is a condition that children get and outgrow. White patches show up on the skin and may or may not spread and it is actually part of his eczema. WHO FREAKING KNEW!!! Which explains why Mason, who also has eczema and allergies, has begun to get more white patches than his brother. It is not permanent. It will go away (maybe not until puberty) but it will go away. There is a cream to help with the repigmentation in the mean time. There is HOPE! I had prayed and sobbed and prayed and sobbed for my boy and HE listened. Even though he already knew the outcome before I even prayed.
I am so happy and relieved for my son. As I said before, I know that there are others going through so much more, but no Mom wants their child to have problems or anything that might cause trauma emotionally down the road. It turns out in this instance, Austin caught his break. It was exactly what I said to Dave the day our pediatrician said it was vitiligo. I said why can't our son just catch a break, and he did! Woo! Hoo!
I mean seriously, look at this boy! Beautiful and perfect! My heart overflows with love for him...

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