The summer is here...

The summer ended up being a long one. Alana spent even more time sick and in and out of the doctors’ office as the summer continued. Dr. McArthur tried to make things easy. She ran tests. She asked for consults and then she ran more tests when the first ones didn’t yield what we were looking for. It is now May of 2007 and she has been sick for all most 3 years straight.

The rest of the summer is pretty much the same as the start of the year was. Noelani and Shaylin are trying to be brave and remain little girls. Shaylin seems to have the hardest time with all of this. Noelani seems to cope better and that may be due to the fact that she’s older, more mature and able to talk through her emotions. Alana keeps us from a lot of things. We don’t go camping at all because she can turn at the drop of a hat. She can be smiling, eating, drinking, and coughing all time than WHAM! She is dehydrated, lethargic, and struggling to breathe.

Because we are not getting anywhere when it comes to her coughing we try and focus on the diarrhea. What if we can at least get that under control? Maybe other things might fall into place as well. We meet with the GI doctor again and yes again he tells us that there really isn’t anything that he can think of to do. It was a blessing that her immunologist, the wonderful Dr. Demain wrote another referral stating that she did need the GI doctors’ help.

We meet with Dr. P and he tells us that doing an EGD (esophagogastroduodenoscopy) and colonoscopy might give us answers about the chronic diarrhea. After thinking about it for a few days we decided that while it is another procedure we need to do it if we hope for any answers. Early November we go back to the hospital and have the scopes done. I get to stay with her this time until she is fully under. That was an experience in itself. She was usually sedated when they took her but never fully under. She did great though. It did take her hours to wake up in recovery which seems to be her M.O., but we were overall pleased with how she handled it.

The results came back with some results (say that 5 times fast)! In her duodenum there were eosinophilic cells which are a type of white blood cell that is related to allergic reactions (among other things). Dr. P tells us to go ahead and go back to Dr. Demain and speak with him about the results because they might mean that we are missing some of her allergies (remember from above that she has Eosinophilic Gastroenteritis). It isn’t too long before we have our appointment with Dr. Demain and he has his thinking cap on.

We end up deciding to re-patch test her. I don’t remember and I don’t feel like looking back to see if I explained what that is but here it is again. When you are patch tested for allergies compared to scratch testing (where they place small scratches on your arm or back with the tips of the “needle” dipped in an allergen) they place small metal discs in your back filled with the perceived food threat and a special compound. The discs are left on your back, covered in tape, for 48 hours. No shower and no messing with them. After that time you go back in and the patches are removed. The nurse does a first impression and writes that down. After that you go home and the actual read is done the next day. With it being a “cell based” reaction, not the same as an oral reaction which may it turn cause an anaphylactic reaction, it takes time for the body to react.
She has her whole back filled up with patches including the ones that we all ready know of, beef, chicken, pork. Now I have seen enough of these to know that something wasn’t right with her back the night that they were taken off. In the past she’d never really complained about them once the tape was off. Now she was hysterical and scratching against anything she could find. *sigh*
She comes back positive for beef, chicken, pork, turkey, corn, carrots, rice, oats, and eggs. I started to cry. I just could not help it. I know in the scheme of things it wasn’t terrible. She had gone through so many things and we knew that she was having diarrhea for a reason so this shouldn’t be a huge surprise but it was. I was expecting maybe 1 or 2 new foods but not 6 more. To make things even more stressed out Dr. Demain decides that she also needs to be taken off all diary foods to boot. Sometimes even though things do not come back positive for milk he explains that it’s a tricky one. There is a thing called Heiner syndrome and she does fit it. That was exciting. The cure…NO MILK! It is a relatively unheard of disorder but as you can see here are some of the symptoms.

• Chronic airway disease
• Iron-deficiency anemia
• Recurring diarrhea
• Failure to thrive
• Cough
• Shortness of breath
• Wheezing
• Recurring respiratory infections
• Retarded growth
• Gastrointestinal disorders
• Pulmonary hemosiderosis
• Partial or complete lung collapse

Hello!! How many of those does she have! It was a mix of bittersweet about all the foods but maybe, just maybe there is another answer out there. The test is just to remove every speck of dairy from her diet. We meticulously remove all dairy from her diet. No one would feed her they were so afraid to mess it up! The goal is no milk or other dairy for 6 months and within 1-2 months she should show signs of improvement if it is Heiner syndrome. Fingers and toes crossed right…

As December rolls around with all its festiveness and warmth and Alana is going down for the count. By mid-December there is no use denying it; she is really sick. By the way, if that isn’t enough right now I end up having to have a surprise total abdominal hysterectomy at the start of the month. What the hell right!! So anyway-my hospital stay wasn’t going as smoothly as hoped and I had to spend a few extra days in there. All the while Larry is juggling the girls and work and yea, as mentioned Alana is getting visibly sicker each and every day. I leave the hospital sore but all right and 8 days later Alana enters the hospital again. I’d like to say it wasn’t something usual that she had a bad virus, that everyone in the house was sick with the flu but alas, nothing could go that right. She has atelectasis again and infiltrates. The fevers are just under 104° and we cannot get them under control (I could have cut and pasted that from above right…).

Dr. R comes in and we start discussing what should be done. He is now suggesting that she have a lung biopsy done. What they would need to do is make 3 incisions on her chest. One on the back where the biopsy specimen would pass through, one on her side where an instrument would go, and finally another on her chest, right below her nipple, where another instrument would go. He tells us this is the best way to get a “definitive” diagnosis for her (to confirm his diagnosis of hypersensitivity pneumonitis) and to actually see her lung under the microscope. We are listening and agree to meet with the surgeon. Dr. J comes in and we start talking. He is a gentle man and you can tell that he’s been around the block for awhile. This can be a good thing and a bad thing. Older doctors have the wisdom, experience, and proven track record to get things done. Both Dr. R and Dr. J fall into this category. The downside is that they are set in their ways and sometimes unwilling or incapable of exploring newer possibilities. Luckily, Dr. J was a wonderful combination of both old school wisdom and realization that the parent is running the show.

Dr. J does a complete exam on Alana and feels that she is too ill to do the biopsy. He tells us that she could end up on a ventilator and there is the possibility that she won’t come off of it. Yes, things were so very, very hard right then. I mean think about it. It was a no brainer that we did not want her in a worse state than she is all ready in but that small possibility that we could finally have a diagnosis! That we could without a doubt see what her lungs looked like and what they were “made” of and what if “it” isn’t there when she is well!?! Do we miss the window in which she is acute and is the best chance to see what is causing it or do we just let it go and hope that in time when she’s better but not better we do it then? Nothing is easy with Alana is it?

We are upset, Dr. McArthur is upset, Dr. R is mad that we are considering not doing the biopsy, and Dr. J was probably wondering what the hell we are all doing. I don’t think that I have cried that much in my life as I did that day. Oh and yes, it is the day before Christmas and we are not going anywhere. We spend Christmas in the hospital praying that Alana will make a turn for the better.

Breaking stride...

So I haven't been posting much these last few months as Alana has been having more and more episodes. They have finally come to a head and she's in the hospital again. She's down 2.5 pounds, seriously dehydrated, and her inflammation markers have tripled since Monday. As the days go on I'll update what we learn or don't learn. I am contacting the doctors that she's seen in Cincinnati (yep, did not get to tell you that part yet) to see what they want done as far as labs and/or any bright ideas they may have.

Will post more about the previous weeks tomorrow.

Random post

Here is Alanas wordle. It's a collection of words from this blog arranged randomly. Pretty nifty.

Seattle Childrens

Alright, so taking deep breaths and hoping against all hope that they have an answer for us off we go to Seattle. Larry takes Noelani and Shaylin to Ketchikan to meet my parents then he continues onto Seattle to meet me and Alana. We took an earlier flight so she wouldn’t be as tired the morning of her appointment and in hopes that she’d be able to settle a bit as well.

So we head to Seattle Childrens hospital bright and early. I am still chipper at this point because what’s the worst that can happen? They tell us she doesn’t have an immune issue and send us to rheumatology for the answers that we are sure to find. Alana is what, just over 3 now and it’s been a long and frustrating road thus far. Dr. McAurther had tried to gently warn me that if they had clear cut answers about Alana there’d be no need for them to actually see her. They’d be able to relay all the information on the phone. The hopes of this visit would be to gather more information, a fresh set of eyes if you will, and then come home and await the test results. With that in mind we meet with the fellow in immunology first, go over everything from bow to stern. He thinks a bit then tells us he is going to get the doctor and yes, the doctor comes in and wants us to go over it all…again. *sigh*

Now, before I go any further I hate to say it but…DOCTORS CAN BE THE BIGGEST JACKARSES ON THE PLANET!!!! Alright, I feel better now. Going on now.

After we tell him all there is to tell he sits back and thinks about it, takes it all in. Then he starts to tell us all the great news. Let’s start with #1- Alana is a “complicated” case. #2- There will be no easy answer. #3- We just will have to wait for medicine to catch up with her.

So yes, those are his tidbits of wisdom. He tells us that she’s had a rather in depth immune work-up. That what we are doing is all they can think to do at the moment. But, all in all this wasn’t something we didn’t expect. We are waiting anxiously for him to say the magic words (RHEUMATOLOGY) and he does!! What he says is…”We have another doctor who is both an immunologists and a rheumatologist, we will let him have her file and see what he thinks about it. Thanks for coming and as medicine catches up with her then we will be able to help her more. In the meantime what you are doing is great. Continue to manage her needs as they arise and stay in touch with all your doctors. See ya now!” (Remember to breath, don’t cry, remember to breath, don’t cry)

Through my frustration and tears I manage to speak. Why did we come here? Why can’t we see rheumatology? You are not giving us anything more than we came here with! Maybe it was my absolute desperation or maybe it was he just wanted this blubbering mess of a woman out of his office but he throws us what he considered a bone. Here, why don’t we send you to pulmonary and see what they think. First go ahead and get an x-ray so you can have that with you when you see them and they will get you in today before you have to be at the airport. What more can I say or do? He and his fellow are done; they are hand on the door, walking out D-O-N-E, done.

We leave his office, defeated, hurt, and feeling very, very alone. I call Dr. McAurther and she leaves a patient to take my call. I am amazed the woman could even understand a single thing I was saying (or trying to say). I tell her what just transpired and ask her, beg her, what we should do. I have to admit, that is the first and only time I’ve ever heard Dr. McAurther angry. It’s not her style from all we’ve seen of her but oh, she’s angry now. She tells us to go ahead and do the x-ray, go to the pulmonary appointment and she will call us back with a plan.

Alana does the x-ray like a super girl she is and it shows that she’s got an infiltrate in the LLL (left lower lobe) but that’s all. That’s not something totally unusual for her. Sometimes they are there, sometimes they are not. It’s nice to know as it means that we are just getting over another episode or we have one coming on.We take the x-ray up to pulmonary and meet with a Doctor. I can honestly say I don’t remember her name. One thing I do remember is that she made a point of telling us that she is a friend of Dr. R. (yes, if you’ve been paying attention like I know you are, Dr. R is her pulm. here. Go figure) and why are we there in Seattle? She listens carefully to us recant again the story of Alana. She looks at the chest x-ray and then she tells us what we have heartbreakingly come to expect. Alana is a complicated case. Stick with the status quo. We don’t feel that nothing is wrong with her; we just feel that we can’t figure it out right now. Did you enjoy Seattle? What time is your flight?

We leave Seattle Childrens at 9 pm that night. By the next morning Alana is coughing and running fevers again. We settle in for the long nights ahead and try to not fall apart.

You are joking right...

So now we have a diagnosis?? That’s the question we are left with. A time that should have been a strange sense of relief for us, a diagnosis, we were left with the feeling something that I equate to shoving a size 2 dress on a size 10 woman. Sure you can make it fit but should you?

Our life at this point is chaos. The older girls muddle through her hospital stays and endless visits to the doctors. We are searching harder now for an answer and finally it is very clear to everyone that what’s going on with Alana isn’t going to go away. It’s not getting better and this last stay was a wake-up call for all of us.
Time goes on yet again. It’s funny how that happens. When you least expect things to happen they do and when you expect them to happen they don’t. We spend month’s on pins and needles waiting for her next big flair up. Don’t get me wrong. She’s sick every time we turn around. Something to remember with Alana is this, when she’s “OK” it’s just that. She is always coughing. She is always having either fevers or diarrhea. The thing that makes it an OK day vs. a bad day is how she handles them. She can have a 100 degree fever and be laid out on the couch and needing to be watched at every breath or she can be 102 degrees and be up and playing and eating just fine. It really is a day to day on how she’s feeling. We can have weeks with no issues other than her normal self (slight fevers, 10-12 BM’s, slight coughing) or we can have weeks of bad days (high fevers every day, 12-15 BM’s, non-stop coughing). All is relative to us at this point.

As I said though things are not going unnoticed now and her symptoms are demanding that the doctors pay attention to her. Something that is in the works is sending her to see doctors in Seattle. The childrens hospital here is amazing. It truly is and for our location on this big world and being isolated from a lot of things it really makes a huge difference for the children that live here. That being said, there are some services that they cannot provide. There are some thoughts floating around now that Alana has a rheumatological condition that is causing all of her problems. This is a great idea and seeing as we’ve done such extensive immune work-ups and random things with no real results. This is one area that she does fit, and that we’ve not looked at to a great degree.
The process of getting her there isn’t a piece of cake though. I mean actually getting her there is as easy as getting on a plane. Getting her seen there is another issue unto itself. I can say one word and make it all very clear to you why that was an issue…insurance. Do you have any idea how flipping hard it is to get clearance to go on a “fishing expedition”? We don’t have a diagnosis, we don’t have a clearly defined pattern of illness (in their thoughts) and why can’t we just use the doctors here?

Now this is another area that Dr. McAurther shines like the supa star she is. She gets to work writing letters to the powers that be that Alana does need to see rheumatology that no, she cannot wait for them to do their every 6 month rotation up here and that she needs to go now while she’s well enough to travel. Long and short or it, Dr. McAurther rocks and she gets us going. We are so excited as the approval comes down because that also means they will pay for our tickets, well Alanas and mine, hotel, and food for the both of us. This is a huge, huge, relief for us. Now all we have to do is wait for Seattle to call and tell us when our appointment is going to be. Yea!

That call finally comes (it wasn’t really all that long, a week or so) and it’s from Immunology. Huh?? We don’t need to see Immunology seeing as we have a wonderful one (Dr. Demain) here who’s been in touch with the doctors in Seattle already about Alana. For that matter he’s contacted colleagues across the country regarding her and what tests should he add to her already impressive resume. Why are you making me appointments to see them when we are suppose to see rheumatology, they are suppose to be the ones that help us with her not sending her somewhere where they are going to redo the things we’ve already done!!

After some phone calls to and from the doctors in Seattle and here turns out that rheumatology doesn’t want to see Alana. They feel that she does have an immune issue and that if we see their fellows and doctors and they say that she doesn’t that have an immune issue then we can see them. ARE YOU KIDDING ME!!

Backtracking a bit...

Going back to that last hospital stay I mentioned that we met Dr. R. He had plans to diagnose her while we were there and had plenty of ideas simplest being that she had aspirated food when she was an infant and it was stuck in her lungs causing the inflammation and always negative lab results. Then he asked if she had been checked for CF and yes, Alana in fact had already been tested 2x via sweat test and then finally genetically as was I. Neither of us are carriers for CF so that effectively removed that from the equation. Anyway-we talked for hours about her past history and we mentioned that we had recently* brought 2 birds. Parakeets named Tweet Tweet and Opal. Wow. That opened his eyes to what was wrong with Alana. She had what is called Hypersensitivity Pneumonitis and it was from the birds. It’s an interstitial lung disease and it’s mostly seen in an on the job based scene i.e. coal miners lung, bird fanciers lung, & most commonly mold in walls. It is a hard disease to diagnosis and even harder to prove in some cases. There are things that are almost always seen with it and then there is a fine tooth comb that needs to be run over every aspect of one’s life. You have to have environmental studies done to make sure that you are not taking an already super sick person back into an environment that will cause them almost immediate distress. There are three overlapping versions of HP (Hypersensitivity Pneumonitis) Chronic, Sub-Acute, & Acute. If Alana indeed has HP she would have the chronic, which is the worst, because of how long her symptoms have been going on at this point. Chronic is low level exposures over days or weeks with acute flairs in between. Finding out what the antigen is a fundamental step in stopping the progression of the disease. Here is a medical definition of HP:

Hypersensitivity pneumonitis (HP) is a group of rare inflammatory interstitial lung diseases that result from repeated inhalation of certain fungal, bacterial, animal protein, or reactive chemical particles, called antigens. The body's immune reaction to these particles causes inflammation of the very small airways in the lungs, called alveoli. If exposure to the antigen is continuous, parts of the lungs may become scarred or fibrous.

Can you see why we would be so scared at the mention that she may have this? Is it something in our house? Is it something in the air that’s seasonal? Is it everywhere? Before we leave the hospital we set up with an environmental company to have our house tested for mold. Mold would be the most common reason a home would make someone sick and she’s lived in this house her whole life. The day she’s set to return home the house is tested and she’s started on steroids. The steroids are to make her lung stronger and if indeed it is a mold issue in the house than they can help protect her while we await the test results. It is going to take 2-3 weeks to get the results from the environmental company so in the mean time we just try and keep her well and return to normal routines.

Finally after what seems like forever the results come back and they are negative. The whole house was tested down to the crawl space and there aren’t enough molds to even slightly raise an eyebrow. During this time as well I have started on another search to learn about HP. The more I read and the more Dr. McAurther and I talk about it the more it doesn’t seem like Alana. Granted there are things about it that do, the fevers, the weight loss, and a few others but the main hang-up for me are two things,

1. She was so young when the coughing and fevers started, under/around 3 months of age, for HP that’s taking a rare thing and making it even rarer.

2. She’s able to have short period’s in-between that she’s OK. We have done 2 antigen panels by now (antigen panels are where they actually take her blood and test IT for HP triggers. They subject it to known and in her case, some newly discovered antigens, and get (-) or (+) results that way) and she’s tested (-) for everything including mold.

The more I learn the more I doubt that she has this. It’s neither the first time nor the last that she fits something but it isn’t her (Hyper IgD, Muckle Wells syndrome, Familial Mediterranean Fever, etc.) so we’ve learned how to be hopeful but skeptical at the same time. Nothing is ever black and white with Alana much to our dismay. On goes the testing and seeing Dr. R a few times. We have a stressed relationship with him at this point because what we were hoping was going to turn into her knight in shining armor with a DX has turned into someone who doesn’t appear to be listening to us and going with what doesn’t seem to fit her. It’s so frustrating. It’s so disappointing. It’s so usual.

We see Dr. R for what would turn out to be our last office appointment with him and he just tells us that she’s more than likely got HP to something that we don’t know about yet. That there are so many things that she could be responding too and medicine doesn’t know everything. Clearly that answer doesn’t work for us. Larry and I are not going to accept that she’s just got something because it’s a convenient DX. We start our search again and hope that she will make it there healthy.

13 days and nights...

So I think last time I ended up getting distracted. I was talking about her tonsils and Dr. P. Then I got sidetracked with all the other doctors and such. Let’s get back to that. So Dr. P thinks that she will do better (well I think he more or less hopes at this point) if we remove her tonsils that she will sleep better which in turn might help her eat better which in turn might help her get better.

Something that is important to mention at this point is that we have a new pediatrician! Dr. Erin McAurther and she is in the top 10 of the most amazing women in the world. She’s compassionate, brilliant, and just an amazing person to know. She’s taken Alana (and us) under her wings and is working to find out what is wrong with our baby. She’s great with the girls and she never ever makes us feel like we are asking dumb questions or to many questions for that matter.

It’s been a long road and we are desperate to find something that is going to be that magic *poof* that we’ve heard so much about. We agree to do the surgery and also given her history she is going to spend the night in the hospital to monitor her overnight. It’s funny that now days they have things down so ‘pat’ that even 10 years ago that type of surgery would have been a 2 day stay. Now it’s an outpatient deal and they don’t even kiss you on the way out the door. OK-so off track again. She has her tonsils removed in November of 2003. Dr. P is great and we have no doubts that he will take care of her and do his best to make this easy.

I didn’t mention another thing again that ties into this. When she was in the hospital last time one of the thoughts was she may have an infection in her tonsils or somewhere behind them. An abscess somewhere that wasn’t visible to just a tongue depressor. So they did a head CT and what they are looking for isn’t there but they do ask us this…”Are you sure she’s had her adenoids out? Not just tubes put in? You see her adenoids are huge…” We are most certain she’s had her adenoids out and then they explain to us in some cases they can grow back after they’ve been removed. It’s not common but hey, what about Alana is at this point.

So that ties into her latest surgery as Dr. P is going to look again to see if they have indeed grown back. If they have he is going to remove them again so that’s another possible surgery that she’s going to have to ‘feel’ again.

Again Alana proves to be amazing and makes it through the surgery no problem. Dr. P talks with us and no, her adenoids have not grown back. He isn’t quite sure what they saw on the CT and he’ll take a look at it but it wasn’t her adenoids. She is taken upstairs and oh can you hear her from down the hall!! Again we used versed as a sedative before surgery but this time we did it through an IV so maybe that will make her wake up better is what we are told. Yea again that’s not happening.

So she spends the night at the hospital and we go home the next morning and she’s doing fine. She’s isn’t eating anything yet but she is sucking on popsicle's and trying to drink small amounts. At this point that’s all we can ask for.

Life yet again goes on. Alana is sick a lot more than her sisters or anybody in the house for that matter. We still search for a reason and find all sorts of things that sound like her yet are not her. She still isn’t sleeping through the night which was one of my biggest hopes with the tonsillectomy. Sleep. She’s still waking 2-3 times a night sometimes more. Her snoring has improved but she is still coughing and there are days that I have to fight myself to stay awake because of the lack of sleep she’s having.

It’s only a matter of time and she’s getting very sick…again. Bags under her eyes, coughing fits, fevers, losing weight, and yes, all the same things she’s now been doing for years. This is the same path that she has gone down before and here we go again. For months she is perpetually sick. There’s no break and by February 2007 she’s admitted again for “Pneumonia”. This was one of her worst episodes. She was so very feverish that she couldn’t sit up. This is where we first heard that she was having “ocular swelling” because she would be in such pain from light and noise’s a black room and hands over her ears was all we could do to keep her from crying.

During this stay is where we finally, yes finally, after all this time meet the local pediatric pulmonologist. Now where we are there is only one. Yes, only 1, uno, ONE, and oh did I mention, #1. So I am not going to waste a whole lot of time explaining our relationship with Dr. R. There is no point in it because it can be boiled down to just a few words. He’s always right and we are always wrong. There you go that’s all you need to know to understand how this relationship plays out.

Alana in now getting sicker everyday we are in the hospital. It’s been a week and she’s not improving at all. In fact she’s having more fevers and her O2 issues are getting worse. Dr. R tells us that if she gets sick again he will consider doing a bronchoscopy on her to see the food that he’s sure she’s aspirated. It would explain the coughing, the fevers, everything according to him. By that night she’s gotten so sick that he decides that it can’t wait and they prep her for the surgery.

That was by far the worst night in our lives at that point. She was so frail and so sick. What seems like hours past by and we see the doctor talking with one of her nurses. We brace ourselves and he comes in and tells us that he didn’t find anything specific like an inhaled piece of food but that her lungs are “sticky and swollen” with “gunk” in them. Then he tells us that her left upper lobe has collapsed. He says that that’s what more than likely happened when we saw a very prominent increase in her breathing rate and her start to really struggle to breath. If there wasn’t a wall holding me up for the first time in my life I felt what it was like to feel faint. The room spun and I almost collapsed. It was terrifying and so very emotional that it makes me upset thinking about it.

We wait for the tests to come back and she just stays where she’s at. By the start of the 2nd week in the hospital she’s having such a hard time even sitting up because she’s so weak from not eating and being so feverish. Trying to get her up and moving and using her lungs is proving to be a battle that leaves her exhausted from crying, me exhausted from making her get up then holding her while she cried and us both exhausted from the emotional stand point. There are more tests done and we are waiting on her to start and get better. We spend 13 days in the hospital this time. It’s not good and we are quite honestly, pissed off.

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)