Friday, October 29, 2010

F'ing Insurance

Our pediatrician and CF doctors recommended that Drew get a special vaccine called Synagis which protects against RSV. RSV is respiratory syncytial virus and its a particularly nasty virus in kids with chronic lung problems. Older, healthy kids who might catch this bug would probably just end up with an ugly cold, but in high risk kids, particularly babies, in can have serious and even deadly effects. Its apparently very hard to get this vaccine unless you have a qualifying condition. Here are some of the American Association of Pediatrics recommendations for who should get this vaccine:

1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.

Our doctors sent in all of the paperwork to our insurance company so that he could get this shot once a month from November - April (the "season" for RSV) and I just got a call that he was declined. DECLINED!! The woman from Anthem that called said that the doctor had reviewed the case and Cystic Fibrosis is not a qualifying illness and it is not necessary for him to receive this vaccine. Seriously? A real life doctor, someone with an actual medical degree declined this? If they won't consider Drew high-risk, who will they? I know why they declined him. Its $1000 a shot and he needs 6 shots. We pay a damn fortune toward insurance every month toward our premium and even more toward hospital bills and prescriptions, and they won't pay for him to get this critical vaccine because he doesn't qualify?! BS. I'm appealing it. I asked her how the process work. I've made the phone calls. All in the past 20 minutes since they called me to say they were declining us. And at the end of the call she asked if I had any other questions. I said no. She said well I hope you have a nice Halloween! Fuck you.

Thursday, October 28, 2010

Bacon & Eggs

We just got back (okay, 2 days ago) from a fabulous trip back to Pennsylvania. The drive could not have gone better. It took us about 10 hours each way, and on both ends we only had to stop twice! There was very little crying & complaining, and lots of sleeping! The visit, on the other hand... The kids were just a little out of their element. Nap times were a little off and there was usually someone awake in the middle of the night for one reason or another, but otherwise we really did have a great trip.

A lot of my family got to meet the twins for the first time. Its always interesting to see people who haven't seen/met Drew yet have to say about him. There are always a lot of questions about him and his care and we are more than happy to answer them. From the start, we felt that knowledge was power and thats why this blog was created in the first place. No one can ever believe how big he is. I guess they expect this frail little boy, but he's far from that! We heard "If I didn't know his story, I would have no clue anything was even wrong with him!" more than once. Thats the blessing and the curse I guess. I love that he looks so great, just like the other kids. Chubby little boy, full of smiles and laughter. Everyone will treat him just like the other kids. On the flip side, I don't know that anyone will ever really understand what we go through every day to keep him looking that way.

Hes doing great right now. He sounds a little junky again but I guess thats just the deal when he gets a cold, at least until he outgrows the malacia. He's pretty much done with the vomiting. It still happens from time to time, and it seems to have something to do with him being really full. The GI doc wants us to continue using the Elecare formula for a couple more weeks and if he still seems to have slow gastric emptying they will put him on some medicine to help with that until his stomach heals completely from whatever he had (they said it can take up to 8 weeks!). We're hoping to get him fitted for a vest next time we're at the doctor. This is another airway clearance device that would take the place of our chest percussion. It still happens 2-3 times a day but it would make our lives a little easier (at least I think!). I'll write more about that when the time comes.

We have Ella's Harvest Festival at school on Friday. She's going to be Tinkerbell and the twins are going to be bacon & eggs. Hopefully we will have a relaxing weekend. I'm so tired from this past couple of weeks that I could use a weekend full of nothingness.

Thursday, October 21, 2010

Philly or Bust

We made it! I consider 10 hours in the car and only 2 stops a huge success. There was very little crying and whining either! We made the trip yesterday from Cincinnati to Philadelphia for my cousin's wedding this weekend. The packing was actually more stressful than the trip. When we got here at 10:30pm though no one wanted to go back to sleep. Finally by about 1:30am the house was quiet...until about just before 6am when Ella needed to find Squirt (the cat). The twins are on a bit of a crazy schedule today but everyone is in bed now (8:15pm) and hopefully tomorrow will be back into the swing.

Sorry my posts have been kind of lame lately. I'll get back into it. I'm just enjoying crazy life with everyone at home, and now this next 6 days our first real trip with the twins. Hopefully the rest of our visit goes as smoothly as the past two days, and I'll be sure to post some more when we get back!

Saturday, October 16, 2010

Thanks for understanding

Things on the homefront have settled down some. We came home from the hospital on Tuesday evening, concluding our 1 week stay in A6N. I'm glad we were able to come home. I'm glad the puking stopped. I kind of had hoped for a better answer as to why it was happening lest it happen again, but I'm relieved that they couldn't find anything serious. We're finally back to full feeds, thats 8oz of 20cal formula about 4 times a day. There hasn't been any projectile vomiting yet. We have some appointments next week with the CF Clinic and the GI Specialist who we saw in the hospital. Hopefully we get the all clear and can start feeding Drew fruits and veggies again. The poor kid lunged mouth open at my granola bar yesterday - he's hungry. Whatever the problem was, it seems to be over, but we don't want to rush back into anything, taking our return to normalcy one step at a time.

My cousin is getting married next weekend and we're hoping to make it back to PA for that. Prior to the whole vomiting extravaganza, I had some anxiety about the actual trip - are we going to all survive 10 hours in the car?? Now, I'm more anxious about the logistics of keeping Drew healthy for the 5-7 days that we will be 500+ miles away from his doctors. The list of meds and equipment I have to bring is ever growing.

The last time we were in PA was Thanksgiving of '09, so almost a whole year. There are a ton of friends that we want to see and a lot of other people who are anxious to meet the twins. I'm so nervous about this. Our friends here have gotten use to the drill - wash/sanitize your hands upon entering our house, and kindly don't touch the babies. Its hard. I'm guilty of doing it to others! When you see a baby, its hard not to reach out and touch it, whether you know the kid or not. With Ella, I didn't really mind it to much when people would reach out to grab her hand or touch her cheek, but things are different now. The more people handling the babies, the greater the chances are that they will pick up a cold or something and then our lives are turned upside down with endless trips to the doctors and the fear of a hospital stay. I really do try to keep things as normal as possible. I don't want people to be afraid of us, I just want people to be respectful of us and our concerns. We want the twins to meet you as much as you want to meet them, but please understand if we ask you not to touch them. Again, think what you want of me, but its my life and I need to do what I think is best.

Hopefully we get the all clear on Tuesday and can make some plans to see some of our friends who we haven't seen in ages. We haven't even told many people we're planning to come back east because we don't have anything set in stone, but once we get the all clear we'll definitely try to find some time to see all of our friends and family who we haven't seen in what seems like forever. And if we can't make it this time, we will definitely plan another trip soon!

Tuesday, October 12, 2010

Bustin' Out

I think we're heading home! Drew had a motility study done yesterday where they measure the speed at which formula leaves his stomach. It was perfectly normal, just as was every other single test they've done for him over the past week that we've been in here. Yesterday he started to tolerate his feeds a little better. He was able to keep down 2oz of his special Elecare formula along with 6 oz of Pedialyte for 5 or 6 feeds without any vomiting. We went up to 3oz of Elecare this morning and nothing came shooting back out at us. At about noon he had 4 oz of Elecare. No puke. So I spoke with the GI doc at just about 1:00 and he said that whatever he had seems to have gone away and that we should stick with the Elecare for two weeks and then see him again to discuss the transition back to his regular diet. And with that, we're outta here. No real answer.

Post Infectious Gastroenteropathy was our "diagnosis". That means "disease of the stomach & intestines". Caused by what you might ask? Great question. Who knows. The GI doc said that he assumes it was Gastroparesis, a condition that affects the ability of the stomach to empty its contents, but there is no blockage (obstruction). It may have just been a bug like you or I get that for whatever reason he had a harder time tolerating and caused some inflammation in his stomach which caused the gastroparesis. Who knows. The doc described it like a bruise. You get punched in the arm. The incident is over, but the soreness and evidence of the punch is still there. The bug may be gone, but the soreness of the stomach and vomiting may still exist for a little while. All we know for sure is that the 10 days of vomit seem to have come to an end and with any luck won't be returning.

Thanks again for all your thoughts, prayers and suggestions on what could be going on. Hopefully we don't have to play that game to much in the future :)

Sunday, October 10, 2010

Open To Suggestions

So the switch in formula seems to have made no change. He seems to be able to tolerate 2 oz of the new formula, but anything more than that, in formula form, comes shooting right back out at us. However, we can give him 2 oz of formula followed immediately by 5 ounces of pedialyte and it all stays down. Hmmm. I thought that maybe we just needed to build up to tolerating the new formula. After all, the GI doctor said that it could take a few days before its tolerated and then a few weeks on the stuff before the belly is healed. Its just hard when everything that goes in comes back out. It would seem that maybe the rare "inflammation of the belly" bug isn't the culprit here.

I'm going to lay the whole situation out once again, from day 1 when this started happening. If anyone has any thoughts, regardless of whether or not your a doctor, please let us know. We're willing to consider anything.

On Friday October 1, Drew started throwing up his bottles of formula. I think there were two instances on Friday. Things continues on Saturday and on Sunday. It wasn't specific to right after he ate. He could eat and 3 hours later throw it all up (and I seriously mean all. like heaving, shooting puke, flying across the floor) or it could happen nearly immediately. Wet and dirty diapers remained normal. By Sunday, and having kept just about nothing in, we were able to pinpoint the puking to a sitting position. He could jump up and down in a jumparoo and not get sick, but as soon as you bent him into the sitting position - carseat, high chair, just sitting on the floor - projective vomit.

We saw the pediatrician on Monday who ordered an Upper GI study where they give him something to eat that shows up on an xray. This showed a perfectly normal esophagus, stomach and start of the small intestine. His bowel was slightly distended but not concerning to the tech. Tuesday we were in here for an unrelated bronchoscopy (which came back clear!) and then on Wednesday with him still puking they decided he needed to be admitted for observation so that he didn't get dehydrated. He hadn't kept anything down since Friday.

Outside of the puking, he looks and is acting perfectly normal. Playing, smiling, wet & dirty diapers are normal, no fever, absolutely no other symptoms. If you bent him, he puked. On Thursday morning, the doctors looked at some xrays they took on Wednesday night and thought that he might have DIOS which is a partially obstructed bowel, common in CF. All the tests they did came back negative. They tested him for Rotovirus, CDIFF allergens in his blood, and a dozen other things, all negative. Well, CDIFF was tested 3 times and 2 came back positive, but since he is completely symptom-less (its a colon problem with terrible diarrhea) they think that hes either 1)just a carrier or 2)they got false positives with is apparently reasonably common in children until 1yr).

By Friday, the puking was no longer specific to position, meaning he would puke even if you didn't bend him. It was also almost immediately after he ate. There was no more eating and playing for 2 hours before puking, it was right away. We took him off the formula (yes, we tried switching from our normal Good Start to Similac Soy, no change) and gave him just pedialyte, which he is able to keep down in small quantities. We met with a GI doc on Friday afternoon and hes the one who suggested that it might be this weird inflammation of the stomach thing that could cause a temporary intolerance of the formula, so they switched him to Elecare, a predigested formula that should be easier on his system. He said that it could take a day or two for him to tolerate that so on Monday we could see where we're at and take it from there.

On Saturday, we tried a 4oz bottle of the Elecare which was promptly returned all over us and the floor. After that, there were two feedings of pedialyte which he kept down. Later in the afternoon, I gave him 2 oz of Elecare followed by 5oz of Pedialyte and he didn't barf! Before bed, another 2 oz of Elecare followed by 5oz of Pedialyte, still no vomit. This morning, Sunday, we tried 4oz of Elecare again and it all came back up. Three hours later, we went back to 2 oz of Elecare and that too wasn't tolerated. The only thing that goes down and stays down is Pedialyte, except for the small doses of Elecare yesterday.

The only other things going in at this point are his enzymes on about half a teaspoon of applesauce. We even tried giving him the enzymes (Creon) without the applesauce which yesterday he was able to tolerate those two feeds, but this morning was not. Everyone doubts that a half a teaspoon of applesauce would cause this big of a problem, and this morning without applesauce he still threw up - myth, busted.

He was on antibiotics for 1 month prior to this vomiting for staph that they found during a post surgery (aorta pexi) bronchoscopy. No one seems to think that would have anything to do with the vomiting, but I'm just putting it out there. It was Keflex, and he stopped it the morning before the puking started. The CDIFF thing popped into our heads because it was post an antibiotic treatment, but there has been absolutely no diarrhea.

I don't know who all reads this but if anyone has any thoughts or suggestions we are open to hearing them. Tomorrow they will do a motility study to see how quickly his stomach empties and then will start thinking about other tests that can help us figure this out. In the meantime, thanks for your continued thoughts and prayers. We'll keep you posted!

Friday, October 8, 2010


We finally got to see the GI docs today and they gave us a possible answer. There are a laundry list of things that can cause someone to vomit but since they have essentially ruled out anything structural they are going with it being something functional. Their top thought right now is a serious bug (I can't remember the clinical word for it) but it causes inflammation in the stomach. This inflammation can cause a temporary intolerance of regular food or formula. When Drew is having Pedialyte he is not throwing it up. When we give him formula it comes shooting back out at us. The whole sitting up thing can just cause some extra pressure on an already inflamed stomach and just be the trigger to the vomit. ANYWAY, the GI specialist wants to try a different formula. Coincidentally, the formula they want to switch him to is something we've already been on. Its a predigested formula called Elecare that should basically give his stomach a break until the inflammation goes away, a week or two they estimate, 4-5 at the most. At that point we should be able to switch him back to his regular formula and go on doing our thing.

The doctor seemed reasonably confident that this was the most likely cause of the vomiting. He gave us some other possibilities and options for tests that we would do if the formula thing doesn't work. They are keeping him for the weekend because they expect it to take 24-48 hours on the new formula for the vomiting to stop. If by Sunday he can tolerate the predigested formula and isn't vomiting or dehydrated then we will get to come home on Monday. If not, the tests will continue until we get to the bottom of this.

This, like all of the other strange problems that Drew has had, is not a CF problem. CF kids do tend to suffer from all sorts of GI complications in addition to lung problems which is why they admitted us to the CF floor and did all of the normal tests to rule out any of the typical CF digestive issues. But this isn't related to the CF whatsoever. This isn't the first doctor who has referred to Drew as unlucky. Hopefully the little guy will get over this and have a healthy stretch for, oh, the next 30 years (though I don't want to limit it to 30! :)


Sorry for the delay in update. After 4 days, I finally found a few minutes where I'm not dealing with anything.

Drew was admitted back into the hospital Wednesday afternoon because he'd been vomiting since Friday. They were concerned that he may become dehydrated. After lots of tests Wednesday and Thursday they found nothing. He's perfectly hydrated, no signs of a virus or infection of any kind. They did an Upper GI study where they have him drink something called barium which is like a dye that shows up on xray and then they take pictures every so often for a few hours to follow it through his entire digestive system. It showed that everything was perfectly normal. An ultrasound showed no twisted or distended bowel. Everything has come back 100% perfectly normal, yet he continues to projectile vomit. We had his surgeon who did his bowel surgeries take a look at the tests and agrees that there are no issues with anything. The mystery remains why he throws up everytime he eats anything (yes, even soy formula was tried). We are supposed to meet with a GI specialist sometime today. They think that each day that this continues it is less likely that its just a bug. They worry about him losing weight or getting dehydrated so we're feeding him a lot and constantly monitoring his weight and output. He's perfectly happy, which makes things even stranger. He shows zero signs of being sick at all. He's smiling, sleeping fine, acting hungry, playing with toys. Its so bizarre! After we talk with the GI docs we should know what, if any, other tests they want to do, or if they think this can be managed outpatient. It doesn't look like we'll be going home today, or maybe not even this weekend, but who knows. Hopefully someone can put their finger on what the problem is, or it just goes away. I don't need an explantion. It would be nice, but it would be nice if it just stopped too. That's all I've got right now. I'll update when I can but have had very very little free time so bear with me.

Tuesday, October 5, 2010

Do Not Bend

Its been a LONG couple of days here on the home front. Drew was scheduled for another bronchoscopy for this morning to take another look at his airways to make sure that the antibiotics had killed off the staph that they had found in his lower airways during his last surgery. We always get a letter in the mail about a week before any procedure (this is number 8) giving you the lowdown on when to stop eating, who to call if x,y,or z comes up beforehand, and what you need to bring with you the day of the surgery. The big red flag on every letter is regarding what happens if the child gets sick before surgery. Which brings us to this past weekend...

Drew started throwing up Friday evening. Its pretty much every time he eats, but its not always right after he eats. And when I say throwing up, I mean projectile vomiting. Like shooting out of his mouth with force covering anything and everything in sight. But heres the weird thing - it only happens when hes sitting. The boy can lay on his belly after sucking down an 8oz bottle and hes fine. He can jump up and down in the jumparoo for half an hour and nothing comes out. You sit him up and he blows. Every time, never fail.

Before we had realized that it was positional, we thought that maybe he just had a bug which has been going through our house for the past week or so. Except no one really had terrible vomiting. But it was our best guess. After a 4th soaking of everything with puke on Sunday evening we finally called the docs. We called his pediatrician as well as his CF docs because they deal with both breathing and GI issues. They both asked the same many questions - does he have a fever (no), is his belly distended (no), is he having wet and dirty diapers like normal (yes), is he irritable (no), is he sleeping normal (yes) and they both concluded that it was likely just a virus. We told them about our vomit inducing sitting position theory and neither could think of any reason that that position would cause him to barf. Neither thought we needed to go to the ER, but the pediatrician wanted to see us in the morning. I kindly told her we had plans but could come that afternoon. As a disclaimer, if I really thought that he was dangerously or seriously ill, I would have cancelled my much anticipated trip to the pumpkin patch. However, outside of the giant pukes every couple of hours, you would not know anything was wrong with this smiling, laughing little boy.

Monday afternoon, after that fun trip to the pumpkin patch, I took Drew to the doc. She didn't have a clue what could be wrong with him . She suggested that I feed him a bottle with her there, so I did. We waiting there for 30 min after he finished and he smiled, laughed and coo'ed. We got out to the car, I sat him in his car seat, and he threw up his 8 ounces all over himself. The doc said that she wanted me to take him to the hospital to have some xrays and an upper GI study done. At about 4:30 we headed out to the hospital. The x-rays all looked fine. The upper GI study (they have him drink something that shows up on x-ray so that they can follow it through his esophagus, stomach, intestines, etc. to make sure there are no blockages or abnormalities) looked perfectly normal. They added an ultrasound to check out every other area of his abdomen that wasn't covered by the other two tests and it showed nothing. All perfectly normal. He did barf while we were there so they got to see the sheer quantity of what was coming out of him, but they just can't figure out why or what to do about it. So at 9:00 they sent us home to pack for our return trip to the hospital for the bronch in the morning.

We had to be there at 6am, which meant waking up in the 4:00 hour. We talked to anesthesia when we got there and they weren't so sure about putting him under since he'd been vomiting so much. If he would vomit while asleep he would aspirate it into his lungs and that would be really bad. But the doctor really felt that it was critical to get another sample from him lungs in this timeframe to determine whether or not we'd need IV antibiotics or if the oral ones he'd been on for the past month had killed the staph. We told them that over the past 4 days the only times he'd thrown up had been while sitting so they decided that the risk of him actually throwing up while asleep was pretty low.

It only took about 15 minutes and then the doc told us that he was thrilled with how he looked. All of the secretions he'd seen before were done and there was no inflammation. No mucus means no bacteria means no more antibiotics. He said that there was just dramatic improvement in the shape of his airways since he had the surgery to move the artery off of his trachea and everything seemed to be working better. His airways are still funny looking, but who cares what they look like if they work okay. This is the very first time we've got to meet in the little post-op conference rooms with the doc and gotten ALL GOOD NEWS. There's always something thats not good. Today was ALL GOOD!!!

Once they woke him up and took him to recovery I was able to nurse him. He was starving. Poor thing is so hungry because he pukes up everything that goes in, and the last time anything had gone in was 8pm the night before! So he ate, and we stayed there for maybe 45 minutes before they sent us home. We got him to the car, put him in his car seat, started toward the exit, and he starts with the barfing. Covers himself with puke from head to toe. I had to stop and change him. I called the doc again when I got him and they are worried about him getting , as am I. They said that since this only happens when hes bent, as in sitting, and as silly as it sounds that we should get some pedialyte into him and just don't bend him. They know and we know that this can't be the long term answer, but until they figure out what the heck is going on we just need to prevent him from getting dehydrated or losing weight so if we can keep food in by simply keeping him straight, then we need to just keep him straight. He kept a couple of bottles down today...until this evening when we changed him and apparently had him bent just ever so slightly to much, and up it all came. He ate again before bed and is sound asleep now and has been for a couple of hours with nothing coming back up.

Who knows what this means. This poor kid. The nurse today said that given his history it would be no real surprise if there were some sort of anatomical abnormality causing this. But thats strange because it just started out of the blue and no one can find anything with any sort of test or imaging device. I guess we'll be talking with some GI specialists over the next couple of days to see what we can figure out, and until then my man will just be hanging out, not bent.

Sunday, October 3, 2010

The Opposite of Hateful

I'm posting this knowing that it will cause some discussion and possibly blog controversy. Doing it anyway. A blogger friend a few days ago wrote a post that had something to do with reproducing (as in having babies) when you know that there is a chance they could have CF and a handful of comments were left. For the record, I agree with what she had to say, just not all of the comments. So I thought I'd do my own little post on this subject.

Right after Drew was diagnosed with CF, I immediately felt 100,000 different feelings. You're scared because you don't know what it is. You're sad because your baby is sick. You're guilty, knowing that this genetic disease was passed onto your baby through you, and you wish more than anything that you could take that away. But then you look at your beautiful little being and can't help but be overwhelmed by love. As much as I hate everything about CF and Drew having it, it has changed me in ways I couldn't have ever imagined. It has made me more patient. It has opened my mind. It has taught me not to judge others unless I have walked in their shoes because you never really know the situation that you are passing judgement on.

ANYWAY, I always wanted a big family. I just love everything about being a mom, from the hugs and kisses right down to the snotty noses and potty training messes. Not that there was every a solid plan put in place, but we had discussed it from time to time and thought that the twins probably weren't going to be the last of the babies to pass through this house. Its scary to think that if we do have another baby at some point that they too could be affected by CF. I've thought a lot about it. I get upset from time to time thinking about it because on one hand I think I couldn't possibly do this with another kid. Its hard with one. Not the hours of treatments and doctors appointments, I could find time for more of that if I needed to. I'm talking about emotionally and mentally hard. No one likes seeing their kid sick, and I believe that its 1,000,000 times harder when its completely out of your control, as in no cure. But then I get even more upset thinking about the possibility of not having any more kids. I'm torn and I think about it all the time.

Martin and I have talked about it, and he said that he won't let fear be the reason that we wouldn't have more kids. And as more and more time goes on and I'm more angry at the disease than afraid of it, I agree. If I let fear win, then CF wins, and CF isn't going to win in this house.

But here's what got me. In the post I read, someone commented this: " I don't have CF and I don't think it's fair to knowingly put that on my child." I did not put this on Drew. It sucks that he has CF, and it sucks that its genetic and it is passed from parent to child, knowingly or unknowingly, but I did not put this on him. Another woman said "What burns my biscuits is when people call us names for deciding to go ahead and have children. I've read posts from those who call us uninformed, selfish, negligent and hateful. One nurse even commented that it should be illegal to procreate! What?! " Exactly!! WHAT?! I will tell you that the people who think that we're "putting this on the kids" or who think we are "uninformed, selfish, negligent and hateful" are actually the ones who are uninformed, selfish, negligent and hateful. These are probably the same people who would choose to have an abortion if they would learn that something wasn't right during their pregnancy, and I'm the one being called selfish. That baby, any baby, needs the love of two people more than anything in the world, from the first moment it becomes a being. Parents who are blessed with a child with any sort of disability, no matter how mild or severe, are the strong ones. We are the knowledgeable ones. We are not selfish, in any capacity. We give our everything, everyday, so that our kids can be whatever it is they are here to be. And hateful? How dare you!! How DARE you call me hateful for wanting to have more children. I am the opposite of hateful. I have more love to give that you in the simple fact that I want more of these wonderful beings. I have the most wonderful gift that I can give the world and its called children. I know that there is a 25% chance that any of my children will be affected by CF but that doesn't make them any more or less worthy of existance. I know a LOT about the disease. And I participate in the search for the cure, so that God forbid one of your children ever be affected by something so horrible, there may be more help, more answers, a cure. Maybe my son will go on to find that cure.

I know everyone feels different on this subject and I don't want to hear your comments this time. You can think whatever you want of me. Having Drew has humbled me. It has taught me not to judge because you never know the situation that the person you are judging is in. Being a parent isn't easy, but good parents do the best that they can with what they are given. All I can tell you is that my heart is bigger, my life is fuller with Drew in it

I don't know why God gave us a baby with CF. It doesn't seem fair. But every day when I look at Drew, my heart feels so full of love and my life feels so more right with him in it. I've got more love to give and I'll be damned if fear is going to keep me down.