Here comes round 2...

So where’d we leave off? Alana just did her first hospital stay and had her first surgery. We are at almost at 2 years of life for her. She’s such a trooper though. Through all this she’s still smiling, playing, and bringing joy to our family. She’s keeping not only Larry and I busy but her sister’s as well. They think she’s the doll-child and always want to hold her and play with her. Noelani and Shaylin are sometimes left out in this equations that is Alana. They are so good and understanding that it’s easy to forget that they are gong through this too. That they are seeing what she’s having done. Seeing the missed trips to the park because Alana isn’t well enough or the dinner out because she’s coughing so badly. The girls have so much compassion and strength in them that they make Larry and I look weak.

After Alana has healed from her surgery we hope and pray that this is going to be the thing that makes it alright. Having the tubes in will help with the ear infections and having her adenoids out will help with the coughing and swelling she’s having around her nose. It’s been almost 2 years now and it’s about time that she had a break from feeling cruddy you’d think. We did dream, and we did hope, and we did pray. The ear infections were cut in half! She was still having them and she still does but they are nothing like how they were. It was so nice to not have her on antibiotics for ear infections finally. And yes, on that note, her cough did not go away. We were still so very happy that at least one thing seemed to be moved outta the picture that maybe with time her cough would go away. It just needed more time to adjust to the new structure of her face right? So yea, the cough goes on and we go on and the world keeps moving around. She’s still in the doctors a ridiculous amount of time and we are still debating the use of antibiotics to try and clear what is a sinus infection? Cold? Flu ? Bad luck?

By July of 2006 she’s been sick again for months. Coughing, fevers, dehydration. Her CRP level keeps going up and they are not sure what to do about her. She’s now about 30 months old and has spent so much time sick. It isn’t long and she’s admitted yet again. Same diagnosis. Pneumonia. I remember being so upset that I could barley talk one night. Larry and I are fighting because things are not going well. Who do you take the most out of when things are not going well? Yea, your spouse or other significant person in your life. I was so very angry with the doctor at this point that I couldn’t see straight. This would be the last time this pediatrician was involved in Alana’s care. We were told that okay, now we can see that maybe this might not be normal even for a sicker kid who might just be unlucky and “catch” everything. We now say no, we want to see Dr. Demain now. This is it there is something wrong here and it’s not at all normal.

Dr. Demain comes in and sits beside her bed and tells us that now we are moving into a new area. It’s not just little tests anymore and the things they are looking at are dig deal immune problems. Okay we tell him. Better to know and deal with it than to not know what to expect at all. He then gets the ball rolling by giving her an adult dose of the Pneumococcal vaccination in her thigh. He tells us that the reasoning for this is that if her body does what it’s supposed to do then we will see redness and inflammation around the injection site. That means that her body is reacting to the shot/dose and there’s a sign that her body is indeed fighting foreign things.

So what has proven to be a consistent in Alanas life happened. It came back as a normal reaction. She did have a boat load of labs done at the same time and those came back normal for the most part with only a few things slightly eyebrow raising but nothing worrisome. T&B cell panel all within normal range, neutrophil oxidative burst: normal, 23 serotype S. Pneumoniae IgG: detectable but low, etc. etc.

This time they feel it would be beneficial for her to see the Infectious Disease doctor as well. He was a very nice man and I’ll give it to him that he tried. He ran a few tests and asked us a lot of questions about her and her past. He was very kind and told us that he would be grasping at straws to fit her into anything that he’d be able to help with. So again, we do our time and she improves. We try to remember that it’s not over this time and we are not taking any more of this “She’s just sicker than other kids” crap. We are now on the search for a new pediatrician on top of all the other things that we are trying to sort through.

Time goes on and she’s having good days and bad days. We are still seeing Dr. P. the ENT, and he’s trying to help us with her and come up with things that may help. She’s still not sleeping through the night and she snores on top of that. Given the size that her adenoids were we start talking about maybe taking her tonsils out. There is a relation to the size of one’s adenoids and their tonsils it seems so hey, maybe this route will at least work to help with the sleeping issue. If she could sleep through the night then maybe she will feel better and be able to stay a bit healthier in the long run.

October of 2006 she has just turned 3 years old! She’s a bright little bugger & is so used to seeing different doctors that at this point she’s calling them her “friends”. There were so many little things in the in-between that I’ve failed to mention. At 9 months of age she stopped growing. Just stopped growing and we were not sure why. She's not added failure to thrive to her list of "things" going on with her. Her bowel problems had remained consistent so there wasn’t any flair up in that area. She was just being how she’d been in the past. This went on until she was 18 months old (right before she went into the hospital). During that time we saw an Endocrinologist to see if there was anything in that realm that would account for what was going on with her. She, the Endo., ran tests for a few things like Turners syndrome & other genetic disorders, bone scan to check just that, her bone growth, and then a few other random things. Through all this Alana is just hanging tough. She’s sick for months at a time then better for a few weeks or even a month. I think she went 3 months without a cough or fever one time!! Through all this I think there was two different trains of though not only with the doctors but with our family.
They included:

1. She will outgrow this. You hear about kids all the time who have strange things going on with them and then one day *poof* they are better. No reason for them to be sick is ever found but keep the faith and in time she will show you that it’s going to go away.

2. That this isn’t a fluke thing. That this is the way that she is and wishing and hoping it away isn’t going to make it go away. Sitting back and just waiting for her to get sick again and then dealing with it isn’t an option.

3. And my personal favorite that we still hear off and on to this day "Well, she doesn't look sick to me."

As you can guess there were a lot of emotions running around by now. Every one of them was spoken with love and caring with no harm intended. It’s hard though when you are the one running to and fro for appointments. You are the one who’s always hearing that not only can they not fix it but they can’t even tell you what the bloody hell “it” is. No matter how strong your spirit and resolve are those things get hard and you can feel so lonely. Not lonely like alone in the wilderness but alone like you are screaming and people are just walking by, they can see you but it’s as if you are mute. That what you are saying isn’t important enough for them to take notice until it’s too late.

Taking a break from the past...

So it's still tonight but I want to take the time to just talk. Reading Alanas story and the way that things were going and have been going may make you think that I've given up hope. That there was nothing good about her infancy/toddler-hood. This is not the case. Alana has been such a bright spot in our lives as well as the lives of so many. She's an extension of her sisters. The strength that they show. The love that they share. The hope that they bring.

We are so very, very blessed to have such amazing children. Nothing could ever happen that would make me want to change them. I know that reading through these early years seems depressing. That our lives were filled with nothing but doctors visits and hospital stays. And don't get me wrong, it was but there was also happiness. There was love and smiles and dreams coming true.

Nothing can ever take away the fact that we are so happy to have such amazing children. Things can get so bad but you know what's always there? Larry and I. We can make it and we do. We have such an amazing family. Not just the girls but our extended family. My parents, my siblings, our friends.

Please remember this, I know that I sound cynical and maybe even a little hopeless in my retelling of our journey but do know this and know it without a doubt. I love my children. I love my husband. I love my life and the things that I've been honored to receive.

Somewhere along the way...

Dr. Demain felt that Alana was having sinus issues. Yes, she was a baby and sinus cavities are not formed and yes it’s unlikely that a sinus infection started in her when she was 3 months old but she had signs that lead him to think that. She had developed saddle bags across the bridge of her nose. She had dark circles under her eyes. Labs were done and she was having elevated white counts and CRP levels (C-reactive protein is a measure of inflammation on the body). His theory was that the cough was being caused by drainage dripping down the back of her throat and causing irritation. If we could clear the infection then she should be fine. This was going to be done by starting her on antibiotics above the normal amoxicillin (which we learn she’s allergic to) or z-packs. She had a series of x-rays done to see if the bitty sinuses she did have were compacted. I need to back up though; one of the things that I’ve failed to mention is that by 6 months of age Alana has had so many ear infections that I’ve truly lost count. That tied into Dr. Demains thoughts as well. If she was so blocked up then the ear infections could be a direct relation to her whole head issue. So onward and upward again. He starts her on stronger antibiotics, a 6 week course of Clindamycin. After that we will redo her sinus x-ray and hope that the coughing will stop.

Okay, alright, no worries…the coughing hasn’t stopped. I think she’s even managed to get another ear infection on top of all this. She’s continuing to have multiple things going on here. She’s falling further and further off the growth charts and she’s having rashes on her truck and legs. Her feet have started to peel so bad that she cannot walk; the skin is cracked and bloody. Her teeth have started to come in and they don’t look right. They are tan looking and pitted. We take her to the dentist and they ask if I used a lot of antibiotics while pregnant (no) or if she was a preemie (no, remember the “overcooked” comment). Again, now what the duck chuck is going on. We were seeing either Dr. Demain or her primary pediatrician every week. From her primary we were getting “Kids are sick all the time” or “We see children like this all the time in the office and they outgrow it” finally what became one of my favorites, “If you hear hoofs in the distance you think horse’s not zebra’s”.

All the while we are trying different antibiotics and different approaches. We’ve moved onto drugs like Ceftin, Biaxin, Sulfatrim, Predinsolone, Prevacid, Nasonex, and Albuterol. In a time period from January 2005-January 2006 she was on 17 different or repeat courses. Now tell me, where in the bloody hell was I?? Why didn’t I take more notice that my baby, my 16 monthish daughter, was on more drugs than most geriatric patients?? Yes I understand that again, nothing I can do, can’t go back, shouldn’t beat myself up over things that I didn’t know. The fact still remains that I trusted the doctors and they didn’t come through like they should have. My bad.

Now after 6 months of straight antibiotics things actually get worse. Alana was running a fever for a few days, nothing that unusual, but this time she was different. May of 2005 now and she seemed to be having a hard time breathing. We took her back to the primary and for the first time there is something very clear going on. She has gotten her first pneumonia. We were admitted straight from the primary’s office and she was given more antibiotics, more steroids, and albuterol. She tested negative for RSV, and other bacterial infections. She did however test positive that she had already HAD Epstein-Barr virus. Not that she had it then, but that she’d already had it and gotten rid of it. Now at the time the doctors chalked it up to a mistake with the lab. There was no way that an 18 month old had already contracted and gotten over EBV. Another thing that they take note of with Alana is that she’s again got an elevated CRP level. Normal range is below 12 (normally) and her’s is 30.

We do our time in the hospital and now both Larry and I are asking more questions. More detailed ones. How in the world could she have gotten pneumonia when she’s been on antibiotics for 6 months? How and why is this going on? We leave the hospital and are home for 2 days. She’s running a really high fever again and we rush her back to the doctors. She’s now got “otitis media with perforation”. I don’t know who cried more that day, me or her.

We spend the next months battling infections. Her skin, her ears, her body. We try more drugs. More time. More everything that we are told. The infection in her lungs doesn’t really go away now. She’s always coughing and she’s breathing faster with each little ear infection. She’s constantly miserable and we can seem to do nothing that will help her.

By January of 2006 we go and see an ENT on our own. He looks at her history, she’s at 30 or so ear infections and there’s been some mention that maybe her adenoids are large and causing blockage. That if they are removed, then possibly her sinus cavities can drain and stop the backing up of her face. The ENT we see is great. He feels that PE tubes would have benefited her awhile ago. He also believes that he can look at her adenoids while he’s in doing her ears and if they seem enlarged then he will remove them. We agree and in the middle of January she undergoes her first surgery.

I cried. I admit it. I was a wreck when they took her. She didn’t care. She was in la-la land with the help of some versed. I think when you are waiting for them to come and let you know that everything is A-OK time stands still. It’s so strange. That surgery was the first procedure that she truly had and it was the one I cried the most at. It had been such a long road and when they even hinted that she might be better after this. No more cough, no more ear infections. No more antibiotics. There was hope that this would end.

She pulled through like a champ. They adenoids did need to come out and they were large. Dr. P put the tubes in place and came out and told us how wonderful she had done. We waited to see her. And we waited. We saw kids who went in after her come out and go home and yet we waited. Finally after an hour or more they came and got us. It seemed that Alana didn’t want to wake up. She was quite fine in la-la land and was not to be disturbed. Well this wasn’t good enough for a nurse there. She got the bright idea to wake her up. Mentioning something like, “Oh sometimes they just need a little help waking up…”. Famous last words! Needless to say after Alana screaming her little head off for 45 minutes they decided that she was well enough to go home. Yea thanks lady. We had to listen to that screaming for another 4 hours. Again, looking back this showed us something with Alana that would come in handy in the future. If only I hadn’t been such a slow learner on that one though.

Home again

And we return home…
We stayed a few days in Glenn-Allen for Christmas break then decided to head home a bit early. Alana was still having issues coughing but again, kids get colds. She had already proven herself to be different then her sisters and you hear that all the time. No matter how many children you have they may come from the same stock but they are each unique. We arrive home and make her a doctor’s appointment for the coughing and leave it at that. I take her in and yep, the pediatrician tells me that she’s got a cold. Probably caught it from her sisters. Take her home and steam her in the shower, make sure her head stays elevated and that will help her from getting the congestion that is sure to follow.

Looking back you can see through copies of the pediatricians phone logs how many times I call about this cold. This never ending cold. Hell, even looking back on it myself I think I was insane. We are just annoyed at this point. Aside from coughing all the time she’s nursing fairly well. In fact, she’s trying to nurse all the time. If there’s ever been a true point in my life that I felt like a cow it was then! She nursed every 2-3 hours and seemed almost never satisfied. She put on weight well and was in the 80% for a child her age. She did have reflux but Noelani and Shaylin did as well. She was having loose stools but nothing that was very worrisome at this point.

Time goes on and we’ve almost become complacent about her coughing. She’s now developing bags under her eyes. She’s not gaining weight all that well anymore and we have resorted to trying antibiotics. At 6 months old we start trying solid foods. We notice almost right away she’s having major bouts of diarrhea and becoming worse in general. She’s crying a lot and not sleeping well. She’s coughing even more than before and we are getting more and more concerned. The phone calls and visits to the pediatrician are ramped up. We finally get a referral to one of the kindest, most compassionate, brilliant doctors we have come in contact with, Dr. Jeffrey Demain.

Okay, so there are some things that we already know about allergies. Shaylin had a turbulent few first years as well. She was having diarrhea so bad that it was burning, literally burning, the skin off her bottom. Nothing virus related was coming back and she was failure to thrive when she was a year old. She had to have IV’s placed in the doctor’s office just to keep her hydrated. This went on for 2 years. She only ended up in the hospital twice, once for dehydration and the second for Rotavirus. We took her to an allergist who did the standard scratch testing but that didn’t reveal anything other than grapefruit, strawberries, and pork. This surely wasn’t what was causing all her problems. This were not things that were in her diet on any sort of regular basis so why/how could this be causing her so much distress. We continued to have problems. Dr. Demain is the allergist who we have been working with through all this and he’s just come back from The Childrens hospital of Philadelphia. I’ll never forget our follow up appointment with him. He was all smiles and very excited. He told us that in C.H.O.P. that he had learned about a new way to test for a different type of allergy. Not the standard type reactions that you get from scratch testing. You place this little food filled disks on people backs. They stay on for 48 hours. After that they are removed and then initially looked at. Depending on how many little bumps they see or feel it’s recorded as trace up to +3. Then another 24 hours go by and the actual reading is done. Again, following the same scale. Shaylin was one of the first handful of children that he had the chance to put these disks on. What it showed made a difference for Shaylin on such a level that she went from so far below growth to now at 8, petite but healthy. Shaylin has a disorder called Eosinophilic Gastroenteritis. What this means is that she has a type IV reaction to foods. Here is a clip from the American Partnership for Eosinophilic Disorders:

"A growing number of children and adults suffer from a chronic and complex group of disorders described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. EGID is further subdivided into organ-specific diagnosis. For example, Eosinophilic Gastritis means eosinophils infiltrating the stomach. "itis" means inflammation. While visual inflammation is not always present, inflammation may be apparent under the microscope."

Shaylin was +2 to +3 for Beef, Chicken, Pork, and Citrus. All things that were in her diet at this point. Orange juice, little Gerber beef sticks, diced chicken for protein. Once we eliminated those foods she was a completely different child within 8 weeks. Thank you Dr. Demain!

So how does this tie into Alana. Well aside from the coughing we thought Oh’ let’s get her allergy tested and she’ll be okay too. This really is just a super bad cold.

Looking back I personally feel so sad and ashamed that I didn’t do more to recognize that something was wrong. That I listened to the pediatrician that she just had a cold and she’d be better the next day, the next week, the next visit. Maybe will never change things but yes, maybe if I had been more proactive then she wouldn’t have to endure as much as she has now.

The allergy testing showed an Eosinophilic reaction like we’d expected. Beef, chicken, and pork. Dr. Demain was not content with her ongoing illness though. He now starts to point us in the direction that this isn’t just a bad cold, that 3 months of illness in a baby isn’t ever just a bad cold. And so begins the first set of testing and months of strong antibiotics.

And away we go!

So where did we leave off. It’s almost Christmas time. My mom and dad are living in Glenn-Allen making it possible for us to visit them and vice versa. Christmas is a time for family to be together and we have no reason why this one should be any different.

If you know Larry at all you know for him being on time is being late. This means that when we were supposed to be on the road by 5 pm we were not on the road until 9 or 10 at night. Now for those of you that don’t know what it’s like to travel in Alaska in the middle of winter here is some background. Unlike the lower 48 where there are major highways lit up in the night with multiple options to exit onto small towns here, headed in that direction, there isn’t even street lights. If you happen upon a house it’s questionable to even approach as the thought is, if they live in the middle of nowhere do they really want to be bothered in the middle of the night? On top of all that you are along a mountain side with a chance of slides. Travelling snow covered roads in the dead of winter in the dark and in Alaska is not for the faint of heart. But I digress- we finally are on the road and away we go.

I remember Alana being fine because why, in my bloody mind, would we travel 3-4 hours with an ill 3 month old. We were half way to Glenn-Allen when both Larry and I were taken aback by this sudden cough coming from the back of the van. It was a very distinct cough and not one we had heard from our other 2 babes. That made us both take notice seeing as it was coming from Alana. We both assumed it was a onetime thing. Nothing to worry about right? A few minutes go by and again, here’s this terrible cough. By now I am looking at her car seat trying to see if she’s got her head in a position that is making it hard for her to swallow or breath. Larry and I are looking at each other wondering the heck is going on. This isn’t something in all our infinite wisdom as parents that we can remember hearing with the other 2 girls. Again, coughing, by this point I am scared and have Larry pull over. We are now on the side of the road, in B.F.E., -20 something degrees with a sick baby.

We do make the choice to go on. We have no real reason to fret. She’s not running a fever. She’s sleeping through this whole thing. She’s sticky sweaty from exerting herself during these spells of coughing and a bit red in the face but there really isn’t a huge red flag going up. I remember making it to my parent’s house and just being so tired. We manage to get everyone to bed and try to sleep through what’s left of the night. Tomorrow we will call the doctor. Tomorrow whatever fluke has taken place will be gone. There really was a time that I did think that everything would be okay. That there really was no reason to be worried about what had happened in those past few hours and that everything would be a-okay.

Okay now, in the beginning...

Well in the beginning we created 3 amazing daughters. Noelani, Shaylin & Alana. All pictures of perfection. Blue eyed American girls. The quintessential dream come true. No space children here. You know the ones. Admit it, you smile and say how beautiful they are yet you wonder what type of alien they are.

I hope that with the creation of this blog I can keep you informed about Alana and how she's doing. How Shaylin & Noelani, the 2 greatest sisters that any little girl could ask for, are doing. And then tossed in somewhere along the way how Larry & I are.

Here's the background that you so need to understand how we got to this point of crude humor and twisted sense of entertainment. I am going to break this up into sections as it will be to much at once.

Alana was born in October 2003. She was a complicated pregnancy due to her inability to show us that she could move all her limbs and not be a stick in the mud. I think that she just liked being the center of attention. That she somehow knew in that little forming mind of hers that if she stayed really still, didn't move so much as a finger, we'd look at her. We'd spend hours gazing at her through a monitor, banging spoons on my stomach just waiting for her to honor us with a glimpse of movement. All and all she ended up being fine. We looked in on her twice a week for 4 & a half months until the day that she was delivered.

She was born at 38 weeks via C-Section. Upon entry the doctor commented on how "overdone" she appeared. Funny thing is is that she wasn't. We had a rather accurate date for her conception so we thought absolutely nothing of it. Looking back this was the start of a lot of things that Alana did that we just chalked up to Alana being different then her sisters.

She was a big girl, weighing in at 8 lbs plus a few ounces. She was red and rashy but nothing that gave us any big indication of what was coming in her little life. We stayed in the hospital for 4 days due to a few minor hiccups that I had going on. We arrived home on Halloween night just in time for the onslaught of trick or treater's. My mom and dad where here (thank god) to help with the girls. Larry & dad took the girls trick or treating and mom and I stayed at home with Alana.

Life was good. We had our 3 amazingly beautiful and smart daughters. Things settled into the routines that are the normal for a family with 3 kids. School, functions, sports, and chaos. Things stayed that way for a few months. Then came Christmas. Alana is just shy of 3 months old now. Here we begin a very long journey.

Why I am trying to do this??

Well I thought that I'd be all witty and write my heart out about the girls and mainly what's been going on with Alana but given the fact that I can't get 2 minutes to think then I shall just try again tomorrow. (In between work, dinner, soccer, & bedtimes)