Huh? Where'd that come from...

So I spoke with McDr for a bit today about how Alana's been doing throughout the weekend and she also let me know of the *new* things/procedures that Alana needs to have done so here goes.

First with the procedures and those include on Wed having a barium upper GI study done. This outta be fun :/ They are at least going to try and flavor the barium to chocolate to try and encourage her to drink it. From there they will do the x-rays and we again, wait for results. On Wed as well I am to schedule Alana's appointment with the GI doctor and she will be having another EGD (Info) done as well as a colonoscopy both with biopsies. They are making sure she's not having reflux (for the 100th time) or having dramatic changes in her whole GI system due to the increase in overall GI problems she's been experencing. I am not 100% clear on what they hope to accomplish in those regards and will find out more when her appointment happens, sometime in August...yes having 1 traveling pedatric GI doc sucks almost all the time.

The other thing that came up was the dreaded NG/G tube issue. Well aparently the NG tube is no longer an issue as the GI doc feels that she doesn't need it. My bood started to boil when McDr mentioned that but then was put on ice as she told me he'd like to go straight to a G tube. After going over her issues he felt it best to just go straight to the G tube 'cause this isn't something that's just going to go away in her case and if it helps her gain and grow then just skip the month trial and get it done. This was both a relief and scary thought. I've been keeping a calorie log for her and she's consuming between 800-1000 calories a day and for a 5, almost 6 year old, that is not enough for even a couch potato kid. McDr and I will touch base again soon and talk about if/when we have to get to that point, is it now as in next month or is it now as in August. The other thing that he mentioned that took me completely by suprise was the thought that she may have to have what's called a Fundo (info). This I am 100% against. She's had no documented reflux and when she first got sick we tried every reflux med and had testing done b/c they did think her cough was caused by reflux and then that her pneumonias were from reflux asperation as well.

As for Alana overall she's doing crappy. She's been sleeping until 9-10 a.m. and still waking up tired and sore. She's wanting her back or her feet rubbed constantly and just very, very iritable and fussy. One minute she can be smiling and goofing off then the next it's like world war 3. She ran a good fever all weekend and then suddenly dropped down to 94 again. I am glad that the fever broke but just not glad that it went down to 94. She was shivering and cold to the touch under 2 blankets when it was 78 degrees outside! She's very pale and those damn cirlces under her eyes might as well be blackeyes from her getting into the ring with a heavy weight boxer! The patches that she gets on her tounge are back as well and that usually means that she's stressed and getting dehydrated. Neither is a good sign. McDr said if she's not doing at least a tiny bit better or drinking better by Wed to bring her in for an admit to get IV fluids and a workup. At this point I am offering her any soda she wants if she would just drink more than 4 ounces of it.

On to a great thing..today in the mail she got a package from one of her buddy's Deb and was she ever happy! It was a giraffe shirt and socks and she's refusing to take them off--ever. Nice to see a great big smile on her face!! Thanks Deb!

And we march on...

Well things have been typical crazy around here. Aside from everyone adjusting to being home after a two week hiatus, there's always those things that come up out of the blue and shake you silly. It's nothing with Alana (besides the usual),it's something with someone else close as close can get and it is what it is.

Alana is staying typical untypical Alana, she's been running a fever for the last 2 days, between 100-101.8, she's not eating or drinking enough which it's at these times, and these times only, that I feel less resistant to the tube feeding issue. That is not a step am 100% sure of yet, it's just sitting there in the background of my mind. Other then the fever she's still battling her GI system. We had added the Phillips to the MiraLax and it worked great for 1 day then the next she had a major problem with it. We stopped both med's for a day and she was back to square 1, in pain and unable to move anything. :\ Right now I am trying a lower dose of the Phillips and keeping her MiraLax the same.

On Monday she starts back at PT and she does not want to go. I think once we get there and she gets to see Gail and Jess (her PTs) that she will get over that. Her inserts to help with her pronation (Picture) should be in and ready for her to try. Hopefully this will help with the foot pain she has.

Noelani & Shaylin are back in soccer full swing and it's taking sometime to adjust to these late night (8 and 8:30 pm) games x2 a wk. We have to divide to get them to their games and then the following game we rotate. Getting Shaylin to bed at 9:30-10 o'clock at night is rough. She needs her sleep and she awakes, no matter what, at 6 am every morning!



If Alana has a fever again tomorrow it's back to McDr for a checkup and check in. If she gets over 102 for more then 24 hours it's admit time and with the fevers coming closer and closer the last few weeks it's something that is weighing on me greatly.

I think this holds true:

“Be faithful in small things because it is in them that your strength lies.”

Back again...

(The picture is on the way home from my parents house, I'd like to say that it's some backcountry road but it's not, it's Alaska all the way around all the time) Alright we are back again. We ended up staying at my parents house longer then anticipated and it was nice. Alana got to hang out with grandma and grandpa and we got to spend some one on one time with Noelani and Shaylin. I would have updated sooner but my moms connection did not like blogger or Caring bridge.

Things have been the same with Alana though, she's running hot right now (over 101) and has been for 2 days now but her leg looks good with no signs of infection. She's been sleeping a lot more then usual (and that's saying a lot because she sleeps so much) and still is tired.

So anyway, some of the things that I didn't touch on about Seattle were in regards to another idea that Dr. Haun had about a possible diagnosis for her. It's called familial dysautonomia and you check for it via labs which they did when they placed her IV line. No word on when those will come back but here's a quick background on it:

Familial dysautonomia is a genetic disorder that affects the development and survival of certain nerve cells. The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature. It also affects the sensory nervous system, which controls activities related to the senses, such as taste and the perception of pain, heat, and cold. Familial dysautonomia is also called hereditary sensory and autonomic neuropathy, type III.

Problems related to this disorder first appear during infancy. Early signs and symptoms include poor muscle tone (hypotonia), feeding difficulties, poor growth, lack of tears, frequent lung infections, and difficulty maintaining body temperature. Older infants and young children with familial dysautonomia may hold their breath for prolonged periods of time, which may cause a bluish appearance of the skin or lips (cyanosis) or fainting. This breath-holding behavior usually stops by age 6. Developmental milestones, such as walking and speech, are usually delayed, although some affected individuals show no signs of developmental delay.

Additional signs and symptoms in school-age children include bed wetting, episodes of vomiting, reduced sensitivity to temperature changes and pain, poor balance, abnormal curvature of the spine (scoliosis), poor bone quality and increased risk of bone fractures, and kidney and heart problems. Affected individuals also have poor regulation of blood pressure. They may experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting. They can also have episodes of high blood pressure when nervous or excited, or during vomiting incidents. About one-third of children with familial dysautonomia have learning disabilities, such as a short attention span, that require special education classes. By adulthood, affected individuals often have increasing difficulties with balance and walking unaided. Other problems that may appear in adolescence or early adulthood include lung damage due to repeated infections, impaired kidney function, and worsening vision due to the shrinking size (atrophy) of optic nerves, which carry information from the eyes to the brain.

So that's a quickie version of FD and I am not sure where I sit with it. There are things of course that make sense and account for a lot of symptoms that she has and has had but then of course, there's things that don't fit. Go figure, the story of Alana right. There's so many things that seem promising when it comes to diganoses for her but then nothing pans out. I do know that if mitochondrial and now FD do not account for anything with her that we are going to apply for the NIH rare disease program (http://rarediseases.info.nih.gov/Resources.aspx?PageID=31) and see if we can get accepted and maybe some ideas on other possible avenues to follow.

I really struggle with when to stop. When do I stop taking her to other states, other doctors, other everythings to try and get a diagnosis for her. I know that even with some of these diagnoses that there is no treatment, only a name, but if we had a name then maybe someday there'd would be a treatment. It's bad enough knowing that she's battling something so intense that it's slowly robbing her of enjoying a healthy life but to add to it that it's either so rare or just completly unheard of that we can't even make those first steps towards treatment. Right now we are resigned to treating things as they come up, not heading anything off that's on the horizon. I know that I shouldn't take those things to heart like I do, but yet, I do. I feel like I should be trying harder to stop whatever this is and yes, I do know that some things are out of my control (gasp! that news was just broken to me recently lol), but with your children and their health you do what that to be something you want to be in control of.

All we can do now is wait on those results from the new testing and also we are still waiting on the results from the Muckle-Wells gene test. That's like a little skeleton waiting in the closet that one. It's making me nervous just waiting for it but clearly Dr. Haun thought it wasn't a great or even good possibility given the fact that he wanted the muscle biopsy and FD testing.

I ended up cancelling her eye appointment so we could hang at grandma's house longer so we will take care of that next month. It will keep and to be honest, she was done with appointments for a bit. We did go to her appointment with McDr and Dr. Demain and McDr again talked about the NG tube issue and what we are going to do with her increased GI motility issues. She had us add Phillips to the MiraLax to get things "moving" along and hopefully give her some relief from the pain of being backed up. She did also mention that she recived an email from Dr. Haun and was impressed by it. She said it was short but just letting her know that he would contact her as soon as the results came in and go over them. She is also going to contact the GI doc that rotates through here every couple of months (Alana has seen him in the past...) and talk with him about the increase in overall symptoms, of course in particular the GI issues, and also the NG/G tube talk. That was pretty much that appointment and we will check back in next week to see if she's gotten any ideas and make another appointment to see what the plan is in regards to the NG tube that I don't want to talk about...

Dr. Demain said that if the motility issues were being caused by her new allergies to wheat and soy they'd be better by now. She's been off those foods for more then enough time to see some resolution of symptoms in her GI system. He also noted that he didn't her any bowel sounds on examination and that wasn't good either. Think of it like a heart beat, just cause you don't hear it with the naked ear so to speak it's always making noise.

I know this was a long updated, kudos if you have stayed this far! Here's something I like to think about at times like this, it's from "Through the looking glass" (aka Alice in wonderland):

Alice laughed, "There's no use trying," she said, "one can't believe impossible things."

"I daresay you haven't had much practice," said the Queen. "When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."

Home sweet home...

Just a quick update! We are home and boy does it feel good. Tomorrow we've got an appointment and then I am going to go fetch the girls from Grandmas so it's going to be a looong day all the way around.

Tomorrow night I will do an update once we are home about the appointments and a couple of things I didn't touch on while we were there. In the meantime THANK YOU, THANK YOU, & THANK YOU for all the prayers, love, and light for Alana this past week and every other week.

"A team" try outs...

So tonight is our last night here in Seattle and I am happy to be heading home. I really miss Noelani and Shaylin and want to get back to our regular pace, crazy.

All last night she was alarming in the mid 80's with her saturation and heart rate (low) but once we got her O2 turned up we all slept soundly and comfortably. It was nice to not wake up until 8 am! When she did wake up though she had another fever and said that her leg felt stiff. Gave her some Tylenol and that seemed to help after awhile. I've given up trying to figure out what her highs and lows are from or even when they are coming. Well, at least for today I've stopped trying to figure it out. =)

She's having some major GI problems today & tonight and I don't know if it's being increased by the stress on her body right now or what but she's been very uncomfortable all day today.

Even though we are going on home the fun never ends 'round here. On Wed. she meets with the immunologist and allergist again to go over this appointment, the fact that her new diet hasn't helped her GI system, her growth, etc. On Thursday she meets with her ped. to go over this appointment (round 2) and talk about her growth and the calorie log we are going to start doing in order to try and figure out what is going on with her growth, or lack of it. Friday she has an appointment with the eye doc to make sure she's not having any inflammation in her eyes and just a good eye check. Lots and lots going on of course.

Well as we get ready to leave Seattle behind again I can say that it's been a good trip. We met a wonderful new doctor to try out for the "A team", we saw Linda and Jacob (yea!), even though her surgery had problems it was nothing we couldn't manage, and the best part, we get to go home with the promises of help in the future in regards to trying to find a diagnosis. I know we've been there, done that (about getting a diagnosis from a new doc) but if I lose faith that someday someone will come through with that, then I think I will have failed Alana on so many levels.

Freedom!

So we are officially discharged! We are back at the hotel now and Larry made her a tent between the beds and she's laying under them chillin. We had another wonderful nurse today and that is something I can say holds true here just like every other hospital, 99% are just amazing and caring and all that, while 1% are total hags and rude. We didn't get a rude one, unfortunately for the new family next to us they did though. Can't win them all right? It was nice to not have to worry about the nursing staff though, it's one of those things that can make a visit or make it terrible.

So she's still terribly tired, more so then I'd like, but she's finally asking to color and wants to read a book. It's confusing how much something that's suppose to be a outpatient thing can be so hard for her. I think a lot of it still revolves around 2 key points;

1. Like a cold for her lasting 3 months, any invasive attack on her body, i.e. cold, flu, biopsy, triggers her already hyperactive immune system into massive overdrive therefor accounting for the completely unstable temperature shifts, the "erratic" heart rhythm, remaining lethargic for days after.
2. All of the above with the added complication of general anesthesia staying in her system longer then expected.

I think soon we will have to figure this out in order for her to have anymore procedures or just be sedated in general. I have a lot more thoughts and things to think about, including that we are testing for something that is hard to think about but for now we are back at the hotel, she's resting, I've spoken with Noelani and Shaylin and let them know we are coming home on Tuesday and that I cannot wait to see them. Shaylin was so cute, she told me she made me something and it's a big suprise and I will love it so much. Not more then I love you guys cupcake ;-)

Well I am ready...are they?

So it seems that today we will go ahead and leave. Now I don't have the walking papers in my hand at the moment but we are already working on packing up and all that.

Last night still sucked and I am glad we stayed. By 8 p.m. vitals she had a slight fever of 100, considering that she wasn't above 96 since the surgery it was a good jump. From there she feel asleep and started to have heart rate fluxes that lasted 6 hours into the night, early morning. What would happen is she'd drop to the 50's & 60's, the alarms would go off enough to startle her system and she'd jump to 120's. Start to drift off again, heart rate would go down, repeat. By midnight vitals she was back down to 95 degrees and shivering under 3 blankets so it was just a very long and frustrating night all the way around.

She's still very sleepy and not wanting to get up and moving and she's only voided once today and it's 10:30 a.m. here. I will just keep pushing her to get up and drink and hopefully when we are out in the sunshine and in our own element she will perk up some. I am not even caring about her not eating right now as long as I can keep her drinking.

Just a bit ago they came in and pulled off the tegaderm over her incision and she was one p*ssed off camper! She's still favoring it but not complaining about it at all. If you go to touch it she just shy's away but still doesn't complain or even say anything. Wish she would say that it hurt or let us know how it feels. Sometimes it's hard having such a brave and strong little kid, they don't express fears and pains as you'd like them to.

Well I am going to try and keep packing and hope that it will hint to the nurses!

PS: Here's her "1 inch incision"

Okay..so that didn't work...

Okay so yep, we are staying again tonight. When we asked the resident they told us, "well why don't we see how she's diong after her nap..." then it was "well why don't we see how she's doing after dinner..." because after her 2+ hour nap she was still tired, didn't want to get up to play or color and said her stomach was starting to hurt. By now it's about dinner time so then comes the after dinner part. Well after dinner her stomach hurt even more and she only ate a small amount of fish. blah.

So what we asked them to do was to lock her IV so she's having to fully drink on her own and not count on the IV to keep her hydrated, get us a cart and an O2 tank to make her get up and out and then walk part of the way back. So all those things happened and now she's even more pooped then she was before but I'd rather her be pooped and complaining here then at a hotel 30 minutes away (thanks Linda for that reminder ;-) and have our only means of getting back here be 911.

There it is in a nutshell, we are here for another night, she's got to drink and start working all on her own in order to get out of here. Hence the reason that "day surgery" does not apply to Alana at all.

Waiting...

So it's 2 pm Seattle time and we are still inpatient. I *think* Dr. Haun said we could go if she was doing alright but then the senior res. came in and said they wanted to watch her some more and see how she does sleeping again. I think there's still a chance of blowing this Popsicle stand tonight but at the moment her SATs are dropping for no visible reason. They are not terribly low by any standard but they are a good 2-5% lower then they have been. So hmmm.

Her cheeks are a bit flushed right now but the swelling doesn't seem to be getting any worse so again, that's all great news. I think unless she does something totally kooky I am going to ask for her to be discharged by the resident when she wakes up.

On another note...our childrens hospital ROCKS! Now don't get me wrong, Seattle this time around has been wonderful and we've had fantastic luck with some amazing nurses & Dr. Haun. but--shared rooms SUCK! First we had a little boy who had no idea that he needed to stay on his side of the curtain and was so bloody loud telling his mother " Im gonna hit you!" over and over again. Luckily they only were here for the first day of our stay and went home. Great we were thinking, there was 5 other rooms on this floor that only had 1 kid in them so there was no reason to think that we'd get the short stick if someone else came up. Well luckily we didn't instead we got a roomie from another room who had complianed about her current roomie! They are not bad at all though, it's a mother and her 10 day oldish baby but she likes it dark and i like a lot of natural light :( I'll stop complaining though, much better then mean boy!

Well, I'll let you know when I know!

Hotel

So we re getting out of the hospital sometime today as long as she keeps staying Alana simple. Her temperature still has not come up above 96 but in turn she does not have a fever either. We will go to the hotel for tonight and if things go smooth fly home tomorrow night. I think she will be able to make it if we make it an early evening flight instead of the red eye.

They should be coming in soon to remove the bandages and remove her IV so we shall see. Dr. Haun came in again this morning and talked with us and let us know that he hopes to be in touch within the next 2 months or sooner if something comes in. If after 2 months we don't hear from him we can give him a call. I will post more later on!

Surgery

We are out of surgery and she’s in her room now (4018 bed 1 @ Seattle Children). The surgery went good and they used some new precautions so hopefully those will keep her on the path to going “home”, i.e. hotel, tomorrow afternoon.

Surgery was at 11 am, she was done around noon, and then she was finally brought upstairs around 1:30 once she was stable. She’s still pretty out of it and now that local on her thigh is wearing off so she’s getting uncomfortable. She was able to drink some apple juice so we are just making sure she can keep that down and she might be able to eat some dinner tonight J Tomorrow morning when surgery does rounds they will come in and remove the bandage so we will be able to see what it actually looks like under there. The surgeon said it was a good sized piece of her left, upper side muscle. He did reiterate that there’s a 9 out of 10 chance that even if she does have mitochondrial disorder that this will not pick it up because it’s such a rare and hard thing to find. We will cross that bridge when we get to it.

As of right now they are watching her closely and they’ve already had to reset her parameters on the machines as she keeps setting them off with a resting heart rate of 110 and a temperature of 95.2 degrees. Hopefully this is all we will see and she will do A-Okay and go from there.

Later tonight or tomorrow I will do another update but just wanted to do a quickie!

*UPDATE*

So that was how things were going earlier and things have stayed the same and changed all at the same time. Nothing to worrisome but she fell asleep and her heart went pretty low and then of course the rest soon followed, her face swelled up and she had perioral pallor while the rest of her face was beet red and hot and her temperature was 94.1. The nurse was paying attention at the desk and came in to see what was going on and got to see the swelling and redness so she made note of it to show Dr. Haun tomorrow. Now speaking of Dr. Haun I have to tell you, I really, really like him. I always get so nervous meeting new doctors with Alana 'cause there's no telling how it's going to go and particularly when we travel out of town there's no going back, know what I mean? I wasn't expecting to see him again while we were here but he came in tonight to see her and talk with her and he's so sweet and kind. I am really impressed. Even if he cannot figure her out for us I really feel like he's a special guy.

So here we are getting ready to go to bed and I don't know how much I am gong to sleep. She's restless but not in a lot of pain at this point (as long as we don't touch her leg). Tomorrow morning they will remove the bandage and we can get a better look at it. The surgeon did explain to us that it's not a pretty cut and it's all about where it's at and how it heals. It may "grow" with her for awhile because it's being stretched vertically along her leg. Such is life I suppose.

If she doesn't do this swollen face crap again tonight, continues to drink and eat enough to sustain, and her pain is undercontrol we should be able to go home tomorrow afternoon, and by home I mean the hotel. From there, again assuming that everything goes well, we will go ahead and fly home on Monday morning. I miss Noelani and Shaylin so very much and it makes me sad that they missed out on the giraffe's and the whole zoo trip. I don't know about anyone else but I remember when my brothers & sister would get something broken bone wise and I had never broken anything. I was also so jealous in that odd sense of the word because they were getting treats and extra attention and just being pampered. Now Alana's issues are no where near a broken bone, in fact they are much worse. I cannot imagine how Noelani and Shaylin feel about things some days. Even though she's in pain and in the hospital now, she did get to go to the zoo and go out to eat. Apples to oranges I suppose but when you are little those things are seen in the moment, not the quid pro quo of zoo=surgery.

Giraffes

Okay, this will be a short update but to get the major stuff out of the way, surgery is tomorrow at 10 a.m. Seattle time, 9 a.m. Alaska time. The appointments were long today but productive. We met the surgeon who will be doing the surgery and he did reiterate what Dr. Haun told us; even if there is mito, 9 out of 10 they are unable to be diagnosed due to the unkown-ness of the disease even after a muscle biopsy. The muscle biospy is just the best way to look for it.

We did make it to the zoo today and she lasted through the giraffe with honors and managed to do well throughout the rest of the time. It was a sorta rushed trip and we didn't get to see all the animals but she really didn't care about them anyway. After that we went for her clinic appointments with the surgeon and GA clinic for the green lights for surgery and they were suppose to be 15-20 minutes tops but of course, once her history was asked it turned into about an hour each.





On top of going to the zoo though she got to meet Linda and Jacob! She was soooo happy to meet them, as were Larry and I, and had a blast. She thinks Jacob is the greatest thing since sliced bread and he is a pretty rocking kid. It was so nice to spend time with another family that faces some of the same issues we do and to see them thriving and to see Jacob, who has to use O2, be such a strong, smart, and witty kid. He was telling us about getting dirt in his canula after slidding into bases at baseball. Wow! They may have some limitations but they can still be such supa stars it's incredible!

Tomorrow I won't be updating until she's in her room and settled unless I really get a chance to so it may be mid-evening until that happens.

Forgot to mention this yesterday: Dr. Haun asked and recived our permission to include Alana into a research program that he is doing. He needed 20 kids and he said he had about 7. He is looking at other areas of mito. and gave me the information on it so I will post more tomorrow about it. To me it seemed him asking for her to be included was a sign, not good nor bad, that he thinks this a good possibility for a diagnosis. :/

Seattle V.2

Well after a very long night we made it in one piece, at least physically! We arrived at 7:45 this morning and had just enough time to eat breakfast, take showers, and head over to Childrens for her first meeting at noon. Needless to say it was a very, very long morning/afternoon/evening. She's been so good but man, so tired. She has not wanted to walk at all and ate very little breakfast and lunch to make things worse.

So here's the good news, we met Dr. Haun here and he was so kind, patient, and attentive to our concerns! The appointment lasted 2 hours and he was very i depth in his explanations to us and it went rather smoothly 'cause Alana lasted through vitals and then she was out like a light! He tried to get her to wake up but she wouldn't so he let her be while we went over her history and progression. Here's the sum up of our appointment and what the plan is:

• He did say that she has a multiorgan disease and this is evident by the lung, GI, muscle, neurological changes.
• She is having the muscle biopsy for sure and we will find out the solid facts on the time tomorrow afternoon.
• When those results come in, he estimates 2-3 months, she needs to have a brain MRI to see if something is going wrong that would account for the coordination, emotional delay.
• She needs to have an EEG to look for seizures.
• He said she has things that are mitochondrial in nature but lab work that is immune in nature so there's still no clearly defined etiology for her.
• We need to get in touch with GI as soon as we get home to discuss her GI system, the tube issue, and really look at her caloric intake.
  
• He is going to help us! He told Alana that he'd help "make her better" and that he "loved to hear her voice" and all of this made her smile, smile, smile!
  

She did end up waking up the last 15 minutes of the appointment and he did the physical portion of it. While she was sleeping she turned beet red on her hands and feet, eyes were terribly blood shot, she was shivering even though it was HOT in there, and she was saying her legs hurt her a lot. All of these things are not unusual in anyway but it was something I think is important for DOCTORS to see with their own eyes.




So it was a long day and tomorrow is going to be just as long. At 9 we are going to the zoo to meet with some friends before her appointment with the surgeon and GA clinic. She wants to go look at the space needle and seeing as we are 2 blocks from it I told her we could go over there tomorrow night after we get back and see how she's doing. She's so whipped that I she's been falling asleep every 10 minutes today and it got so back that she dozed while I was getting ready in the bathroom, fell backwards and hit her head on the tub. She's now got a goose egg to show for it! Agh!



I will do another update after tomorrows appointment 'cause that's when we get our surgery information. Much love everyone.

One more thing...

Had to share this poem about having a child with disabilities...

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The wait begins...

Well our flight is an hour behind, curses for not checking that before my parents left us at the airport at 12:30 a.m. It's now 1:29 in the morning and our flight isn't boarding until 3...1. more. hour.

On another completely sad note; Alana told my dad tonight that she's scared. If you know Alana then you know how doubly heart breaking this is. She is so brave and this is the first time she's ever admitted that she's scared. I had to turn away from where I was sitting so she didn't see me cry. There's nothing that can make her feel better right now except holding on tight and keeping her close. Alana doesn't talk to much about her health aside from saying she looks "like a freaky-goober" some days because of her canula and the asses who stare at her without smiling. Anyway--grandpa just hugged her harder and told her that that was alright. Everybody gets scared but she's the biggest and bravest.

I am whipped and unless I can muster some sleep on the plane, which I suffer from terribly insomnia even in my own bed, I will be up until at least 9 a.m. tomorrow (well technically this..) morning.

I will update when we get back from her first appointment unless something else comes up.

PS: I just wanted to thank everyone for all their thoughts and prayers for Alana. They mean the world to us in so many ways.

Today's the day...

What a busy day yesterday was! I picked up the Sequel (a portable O2 concentrator) for our trip and I am going to have her use it today while we are around town to make sure we are all comfortable with it before we leave tonight. It's bulky and to be honest, I like her ladybug better!

She was so bloody cute yesterday when her friends James and Dylon came over. She hasn't seen them in a awhile and they brought her over a wonderful stuffed giraffe and the whole family prayed over it before they gave it to her so it was meaningful on so many levels. They played upstairs then went outside on the swing set and she was giggling and hugging them. She had taken off her O2 right as they got here...she thinks it makes her look funny, and for the 10-15 minutes that they were playing she was short of breath but refusing to settle down (I wasn't trying very hard to make her I admit) and as soon as they were gone and she put it on she was breathing a bit better but PT ended up being rough.

So today is finally here. I've got a few last minute things to take care of and hope to have a really good day with all of the girls. We leave late tonight so I will update again after her first appointment tomorrow afternoon.

“Each time we face our fear, we gain strength, courage, and confidence in the doing.”

Seattle--again...

After all the ups and downs there is still things that have to be done and that includes the next big test she has to have. Every 6 months to a year Alana has to have an ECHO and EKG done to look at her heart. This is for a couple of reasons but the most important one is to look for pulmonary hypertension. When children, or anyone for that matter, is on O2 it is something that you need to keep an eye on and she in no different. I really like her heart doctor. He’s told me on more than one occasion I am Alana’s advocate, that if we are not making headway with someone to move on or make more noise until we do make some headway.

It’s nice when I can report great news here and so after having her ECHO and EKG the doctor told me the results right there, her heart looks great! Whooo HOOO! There’s no evidence of PH and everything else looks good. She’s still has her murmur and we are told to keep a close eye on the episodes of tachy and bradycardia that she’s having and if things get any worse or we notice fainting spells or other to bring her back right away. Otherwise we are good for 6-12 months. It’s so nice to have an appointment go smoothly and to leave with no thoughts of bad news to share. This was just last month so guess what?! We are here now, the present; crazy huh?

I’ve now been kicked back in my chair for awhile trying to think of where to start…she’s still having bad days, a lot of them in fact. To summarize this month in regards to her and her illness it’s been slow going. She’s been having fevers closer together and had a good set this weekend. As well as that she’s been really struggling with PT to the point that she was over 2 ltrs of O2 and still struggling to breath. I sit at poolside and watch her try with all her might to swim with help from a float or other and she cannot do it. Her feet and her hands no longer work in coordination with her mind. It makes me cry at night.

She went into McDr (yes, we are now calling her McDr, Dr. McArthur, according to Alana) today to see if she has developed pneumonia again because she’s coughing way more then she was even 5 days ago, she’s running fevers, she’s pale, and she’s needing O2 at higher flow rates. The good news is, that just from looking at the x-ray and not having the radiologist report yet, it looks OK. There are still infiltrates in her left lobe but they are always shifting and there. Tomorrow we should have the full report and will make the decision to start antibiotics.

We did talk about her increased lack of coordination, the fact that it’s been months now since the cough started again and then the biggie that she’s not gaining weight again. And in again I mean in the past 2 years. She still has not gained back the weight that she lost in October and December and in the words of the dietitian, her growth is “stagnant” all the way around. We’ve heard mention, from some of her other doctors that a NG or G-tube might be in her future but I’ve been resistant to think about it. I don’t know how long that can keep happening though. I was looking through photos of her way back in Craig when she was 3 and she has on this jacket that my mom made, well this weekend she was wearing that same jacket and it was still a bit big on her. *sigh* McDr said today that we might have to talk about this soon, like in a few weeks. If we do an NG tube and she gains weight then she will have to have a permanent g-tube placed to help her in the long run. Not something I want to think about right now.

McDr also mentions “progressive” again. I did it, I couldn’t help it; I started to cry. Please someone explain to me why I can’t seem to hear that word and not get upset?! I get it though, her increased loss of coordination, her increased O2, her increase in autonomic issues, her increased motility issues, the fatigue, the fevers being closer together, they all scream progression. Don’t cry just breath, right?

Another thing that I haven’t mentioned is that next week we leave for Seattle Childrens again. If you recall the last update I mentioned this and it’s now that time. Her appointments start on the 10th and we have no idea how long they will last. We are meeting with this guru on mitochondrial and other metabolic diseases and she will be having another surgery, this time a thigh muscle biopsy. No word on what day that is going to happen as we are meeting with the surgeon and the GA clinic on Thursday to see what they think about her going through another surgery. It will be while we are down there (don’t get me started on Seattle Childrens again!) is all we’ve been told.

So as usual we have a lot going on around here. Its summer break and the other 2 chicky-poos are home and I love having them around to myself during the days and taking them places with me. They are all giggling upstairs right now and its music to my ears! They are supposed to be folding their laundry but I think I will let it slide that they are not and in its place they are playing with each other.

Now that we are in the now, the present, the moment I will be doing the updates as they happen. The laptop is coming with me to Seattle so that will make things easy to keep current, also, here’s another link that I will be using while we are having “issues” or in-patient stays:

http://www.caringbridge.org/visit/alanastephens

On that page you can sign up for automatic updates whenever I post something. I will still always be on here, but it’s nice to have automatic updates when we are going through something big with her.