Valkyrie's Hope

1 fish 2 fish

2011-05-08T19:37:00.005-04:00

There are a lot of anniversaries, of sorts, going on right now.

April 30 was the second anniversary of val's gtube placement and her (botched) muscle biopsy. Also 5 days after she had a GI follow up where we learned she has lost over 2 pounds since february, and we have to start giving strict elecare feeds again.

June 12th will be 3 years since she had her first tube feed (ng). Also when we first started to seriously dive head first into this sea of doctors, tests, and diagnosis searching. When we first learned of the hypothyroidism and when we first heard the term "metabolic disorder".

And finally the good one, may 28th will mark 4 years since my precious little girl came into this world. She is a blessing, and amazes me every single day. I can't imagine life without her. Even though there have been so many struggles the last 4 years i wouldn't change her one bit. I wish we didn't have to live this life of doctors, attatchments, medications, and symptoms. I really wish i could give her more energy to be a "typical" kid, and be able to eat and drink easier. I wish i could somehow teach her to control her tempuratures and blood sugar, and teach her to breath better and sleep better. But the struggles make us the people we are.

So today, mother's day, i am spending the day celebrating the beautiful, wonderful, extraordinary child who made me a mother almost 4 years ago. Through the ups and the downs, the screams and the laughter, the hugs and the tantrums, she is my daughter, i am her mother. I love my val!

Once again

2011-04-10T17:49:00.002-04:00

I've been neglecting this blog. Things have been, well, not so great lately. They could be worse, a few ER trips and a lot of "emergency" doctor appointments, but no hospital stays. With everything going on i just don't have the energy or will power to blog. Maybe in the next few months, after her new round of appointments, things will settle down. Maybe, just maybe, the doctors can/will actualy help. Right now, all my time and energy is sunk into keeping her as stable and healthy as i possibly can.

Does it ever stop?

2011-02-09T11:25:00.003-05:00

Growing up i was sure "Life" was just a game, and of course a cereal. Now i know it is also a wonderful, terrifying, frusterating roller coaster. Things just never stop around here. I've been putting off updating this for so long because every time i get a minute to myself something comes up.

Overall Val has been doing pretty well. Her speech is exploding, although she has been having more problems with her articulation and understandability. She has been stuttering a lot, but were hoping she will grow out of it. Her gross motor is back at a stand still, but she hasn't lost any ground yet so we're happy with that for the time being. Her fine motor is still amazing, however she is having more problems with her small muscle strength. She's having a hard time holding crayons for too long or pushing buttons because she just can't get the strength behind it.

Health wise, her breathing and tummy have been pretty off, but her endocrine labs are still doing good, she's holding steady for all the things going on with her brain and muscles, and her autonomic problems are also holding steady.

She was put on a very strict respratory managment plan (strict as compared to what we were doing). She is on flovent 2xday and we are to give her 2-6 puffs of her albuterol at the first sign of ANY respritory problem. We are trying this new plan for 3 months, if it helps its most likely asthma, if it doesn't or it only helps minimally then asthma is not our biggest concern. Her new pulmo is hoping we can figure out once and for all if this is asthma or something else. She is worried it may turn out to be lung damage in addition to respritory muscle weakness.

Her little tummy is also being put through the wringer lately. In the last 6 months, or so, she has been having a lot more food problems, and reflux problems. Her GI is increasing her prevacid to 22.5 mg of prevacid twice a day, if that doesnt work we will go up to 30 mg. As for the food, we are now strictly off of milk, soy, ALL corn (including corn syrup, excpet the corn syrup solids in her elecare of course), eggs, pork, chicken, and carrots. She will also be going to an allergist soon to get patch testing done, if things show up we have more "proof", but we are not relying on it 100% because we've had no luck with allergy testing in the past but she deffinantly still reacts. After that we will be seeing a nutritionist.

Next up is neurology tomarrow, then developmental pediatrician and opthomology in march. Of course allergist and nutritionist somewhere in there but those are TBD. Many long days up in DC but hopefully we will have april off. :)

Crazy Crazy

2010-12-01T15:23:00.003-05:00

Things have been nuts around here. Trevor was home for a bit, then they decided to send him back to virginia. He got home the weekend before thanksgiving. We have an IEP meeting for val on the 8th to see what the public school system can do for her. We got all the EFMP (a military program for all special needs military dependants) paperwork finished and turned in for val. Got the decision back on that and she is offically classified as catagory 5 (the highest catagory, it restricts us to 5 places we can be stationed, DC, Norfolk, Jacksonville, San Diego, and some place in washington state i beleive). During the processes we were told it would have no effect on us now, not until we were up to move again. Today trevor was told we will be moving again because of the catagory 5, but no one knows where or when right now. A friend started back to work recently, and i am watching her 2 kids. Another 3 year old and a 1 1/2 year old. So a few days a week this house is a zoo.

Crazy crazy around here.

Today, however, is the first of december. Which is the first day of the end of the year. Twenty four more days until christmas, twenty one days until my birthday. I love december, always have. I love snow, i love christmas, i love the spirit of the holidays. Hopfully i will be able to update more often soon. I know i say that all the time, but every time i really mean to, things just go crazy all the time.

Busy busy

2010-10-14T17:05:00.003-04:00

Things have been very busy here. Trevor went to Norfolk VA for 2 months to do some training, so it's been just val and myself lately. It was very rough, val is finally old enough that i can't make it out to be no big deal anymore. While she doesn't completely grasp the concept of time yet, she has enough of a command of it to know her daddy wasn't coming back for a while. So it has been quite busy trying to distract her and keep her mind off of missing him. He is back now, and we are slowly settling back into a routine, i think.

Due to the stress of this and a few other things val has been quite off lately. She has been very tired and cranky, but she hasn't been able to sleep well. So she has been laying around a lot not doing much of anything. She is having some tummy problems but nothing to difficult to control. She has been falling a lot and having some other movement problems that would really worry me if this was the first time they had happened.

She has started something that is starting to worry me though. She has recently started stuttering. She often asks me why she cant talk right and it really upsets her.

She does have an appointment with the new geneticist on monday (it was suppose to be last month, but with trevor out of town we had to reschedule it).

Hopefully now that trevor is back i can get back into the rhythm again.

On the Road Again

2010-08-23T13:25:00.002-04:00

He is off again. Trevor left yesterday for 2 months in Norfolk VA. He is apparently training on a new aircraft his squadron is getting soon.

This means we have to cancel the genetics appointment and hope we can reschedual it for another time soon after he gets back. There is just no way i can make it up to DC by myself, and either way, i HATE doing appointments alone.

This also means we have to put all of her other appointments on hold. Not a good thing when she needs to get in with at least 3, maybe 4, other doctors. Unfortuanatly all of the pediatric specialists here are up in DC and as i said before, there is no way i can get up there.

At least this gives me a chance to actualy clean the house. All i have to worry about is the 3 year old and the kitty, i dont have to deal with the stubborn, grouchy, slobby, 25 year old as well.

Val really misses her daddy already though, she is old enough to understand hes not here, but shes still too young to understand why. Its a horrible age to have him gone so much. Also can i just say how creepy the house is when im all alone here at night with just val and the cat. You can hear everything.

I guess its just the way of life for the military wife.

FPIES?

2010-08-18T20:49:00.003-04:00

That's what Val's new GI is thinking she may have. Due to her horrible GI reaction to so many foods (so far we know for sure milk, soy, and corn. Most likely also eggs, and maybe other things because her tummy just wont stop) he beleives there IS something more going on. He thinks, based on symptoms, that it is most likely something in the lower part of her GI tract. From what i can gather FPIES is the most likely lower GI issue kids deal with.

Medical FYI- FPIES stands for food protein induced entercolitis syndrome. Its inflamation in the small intestine and colon due to an immune reaction caused by food proteins.

Thus far i am extreamly pleased with Walter Reed Army Medical Center, and this doctor in particular. Dr. M actually took the time to listen to her history, symptoms, and my concerns. He even agrees that something more is DEFFINANTLY going on. Its always nice to have a doc in your corner in this.

He does NOT think she is over weight, in fact he thinks her weight is PERFECT and gives us a much needed "buffer" to take things slowly and not stress her body with tons of stuff right now. He also deffinantly does not think we should even THINK about pulling her tube. Take THAT old GI!

So we have prescriptions in to get home health care set back up, WOOHOO! Getting simply thick again! Also we are finally going to try the AMT mini one balloon button, instead of the mic-key button we use right now.

So great GI appointment for once. It was so great our car decided we would hang around for another 2 hours, cause it refused to turn on. It was all fine though, we eventually got it on and got home, got home health set up to come out tomarrow.

Now time to go to bed, i hope.

Wordless Wednesday - Little Photographer

2010-08-11T13:56:00.002-04:00

Wordless Wednsday - Cowgirl

2010-08-04T21:52:00.002-04:00

Hello, Kitty

2010-08-02T23:18:00.004-04:00

Val has been begging us for a pet for the last few months. Dog, cat, horse, giraffe, she didn't care. We finally broke down and our neighbor gave us a cat. He's about 4 months old, and really cute. A little mean, but he's getting better all the time. If he would just stop getting steped on, kicked, and tripped over, im sure he would be even better. He has a bad habit of being right under everyones feet, and when its dark its kind of hard to see him.

He is very sweet at night though, he tries to curl up with val the second she falls asleep, but unfortunantly we have to stop him because she is very sensitive and will wake up when she feels him next to her.

We've named him tony, after tony the tiger, just because. Val adores him and is such a good "owner". She helps me feed him, if i forget to get him something when she eats she will bring me his dish, its really adorable to watch her be so big and kind.

It's Been Awhile

2010-07-31T19:26:00.003-04:00

It's been quite awhile since i last undated the blog. Things have been up and down since. I've been feeling quite "bleh" lately, which is why i haven't updated. I'm making some changes to the blog, so please bare with me as i sort out what i want it to look like.

And i will try to start updating more. I think we may be coming out of our "funk" finally.

2 Years Ago

2010-06-12T10:01:00.002-04:00

Two years ago today val became a tube feeder. I remember it like it was yesterday, yet it seems like so long ago. We had just gotten in to see a new GI doc. She had dropped a significant amount of weight and everyone was getting concerned. The gi wanted to do some blood work to try to figure things out before doing anything dramatic.

Later that night we were swimming at the local YMCA, we had just gotten out of the pool and showered off and back to the locker room when my phone started ringing, at about 8 pm. It was the neww GI doc, he had just gotten her lab work back and was even more concerned. He asked us to get val to the hospital for more lab work as soon as we could the next morning. He wanted to rule out lab error before over reacting.

The next morning we took her to the hospital, got her blood drawn. The GI called back again around 4 that afternoon. We had 2 options, either head to the ER immediatly to get admitted or come in tomarrow to his office and discuss things. He strongly urged us to take option #1 because he was worried her health and well being would be in jeprody if we waited at all.

So off we headed to the ER. They started an IV and managed to get an NG tube in her. We got there about 430 and she was finally admitted to the 7th floor around 1am. This was the same time we learned about her hypothyroidism. She had also had a swallow study while we were there, which came back fine.

Thus started our journey on the road of tubes and attatchments. Thus started our journey into really KNOWING for sure there was something going on inside her body that was not supose to be happening. Thus began our journey with metabolic and mitochondrial disorders.

In some ways we are so close to being off the feeding tube. Val has gone from hating to eat, feeling forced to eat, and refusing to eat, to loving food and having a very laid back attitude. Meal times are no longer painful or stressful, we know we no longer HAVE to get a certain amount in her mouth and down her throat at every meal.

However, in many ways we are further away from being off the tube too. She now aspirates almost every liquid. She gaggs of many foods because she just cant swallow them right. She has a hard time finishing anything that requires more then a little chewing or mushing because she just doesnt have the energy.

As a matter of fact, her doctor thinks she has another aspiration pnemonia from her not swallowing things right.

It seems as though it will never end. She needs the tube right now, thats for sure, but it doesnt make days like today any less stressfull and demoralizing.

Icky Sicky!

2010-06-08T10:06:00.002-04:00

Sorry for the lack of updates. We have been sick sick sick here the last week. We woke up on vals 3rd birthday ready for a great day, only to realize a few mnutes later val had a 102 fever and my throat was so swollen i could barely talk. By that afternoon my fever got almost to 106 and trevor made me go to the emergency room.

Both val and i have been batteling the effects of tonsilitis since. Luckely val seems to be doing ok with it. Shes having some problems and i think i may need to take her back to the doctor to get a chest xray but over all shes handeling it well.

Mine on the other hand isnt going so well. What started out as tonsilitis quickly turned into pnemonia and an ear infection. However, after 2 antibiotics, a course of oral steroids, and a bunch of cough syrup with codine, i am finally on the mend i think.

We are planing on having vals birthday celebration next saturday, if everyone can stay well enough. So i will post pone her birthday post until after that.

Simply Amazing!

2010-05-21T18:27:00.003-04:00

Simply thick is simply amazing! Val has been on thickened liquids for a little over a year now. There are very few commercial thickeners out there to use, and the majoriy of those few are powder. The powders are made from corn starch, they are goopy and clumpy, and they keep thickening as it sits. This, plus more, makes these thickeners just, well, a pain. Then theres thickening gel, its made from xanthum gum. Its clear, easy to use, and it stays at a constant consistancy. Val has used both, but for the majority of the last year shes been using the gel.

There are a few gel thickeners out there, well at least 2 that i know of, simply thick and hydra aid. We use simply thick, only because i didnt know about hydra aid until about a month ago.

Weve been having problems with our insurance so we ended up buying some thickener out of pocket. We bought a pack of 6 64-ounce bottles (with a pump) and 50 1-ounce packets for on the go.

When we got them, wednesday, 2 of the bottles werent properly sealed. We called up the company yesterday. I can not say how amazing their customer service is!

They took our information, and told us they had to send it to a different department. The other department called us back within just a couple hours. They told us they would send 2 new bottles, and wanted us to send the 2 other back. They sent me an email with a shipping label, to mail it back. Then today we got our new bottles.

It was amazing. I have never dealt with customer service this wonderful.

Simply thick is amazing! I already would have reccomended it to anyone who asked but now there is no doubt in my mind simply thick is positivly the best commercial thickener out there.

Wordless Wednesday (off to work)

2010-05-12T12:32:00.001-04:00

Robbing the Cradel!

2010-05-06T23:25:00.003-04:00

Val had a very interesting talk with her daddy today. She has gotten into this phase where she no longer asks for things, she tells us to do/get what she wants and thats that. Well as you can imagine, thats not gonna fly around here. So we have many talks through out the day about asking, using please and thank you, being nice, and how you dont always get what you want but you get a lot more if your nice about it.

Well, val told her daddy to get her a nuk. As you can imagine that prompted daddy to have a little talk with her. He asks her if shes supose to tell people what to do. She says, very casually, yes. At this point trevor is already trying not to laugh, because she is just to darn cute. Then he tells her shes supose to ask because daddy is older then her. He proceeds to ask her how old she is. To which she replys, very proudly, 3. This is actualy a big deal and i was in a little bit of shock, that is the first time she was asked that question and didnt just start randomly counting. Anyway, he continues, he asks her how old daddy is. To which she proudly replies 4!

At this point, daddy couldnt contain his laughter anymore and gave her to mommy to finish the talk while he stepped outside to laugh.

Apparently, im married to a 4 year old. I wasnt even aware that was legal! This kid is deffinantly a comedian.

Teen Pregnancy

2010-05-05T21:30:00.003-04:00

Today is "The National Day to Prevent Teen Pregnancy". This is actualy a subject that is a lot closer to me then most would realize, who would have guessed id be passionate about something so "normal" lol.

Most people i talk to, online or in person, are missing one big part of our lives. Something that only those i consider very close to actualy know. Its not because im ashamed or embarrased by it, but simply because its not something people need to know. I was/am a teen parent.

I found out i was pregnant at 17, and had Val when i was 18. However, we are not now, or will we ever be, a statistic. Vals daddy and i got married shortly after i turned 18 (literally 20 days after), we do not live off the government (unless of course you count being in the military as living off the government), i graduated from high school (although i have not gone to college yet, i am hopenig to try going when val starts school), and Val is doing wonderfully, dispite her medical challenges.

I love val more then anything else in this world. When i was pregnant, i knew it would be hard raising a child when i was 18. Heck, it was hard just being pregnant. Going to the doctors every month and seeing all the older pregnant people, all happy and ready, talking about spending their days shopping for baby stuff, getting the nursery ready, taking naps, just having fun being pregnant. While i was sitting there stressing out about mid-terms, trying despritly to get my homework done so i could actualy sleep, figuring out how i can rearange the money to get a crib and some clothes. I knew taking care of a baby wasnt easy. I knew all about the sleepless nights, feeding, formula, diapers that make you want to gag, screaming, not having any time to yourself. I just never imagined it could be harder then that.

I am 21 right now, i should be in college, having the time of my life. Staying up late getting drunk with friends, studying my butt off, working a crummy job to pay the bills, but having fun anyway. Instead, im staying up late because val still doesnt sleep through the night, changing diapers, beign a stay at home mum because theres no way i could get a job with all the time id need off to care for val, mixing formula, giveing tube feeds, medicine, therapy, doctors appointments, tests, etc, etc, etc.

I do love val, and i really like where my life is right now, i wish i could go to college and get a job, but right now its just not happening and im ok with that. That doesnt mean its not hard though.

I wish teenagers could see the full gambit of possiblities based on their actions. Yeah, having sex isnt that big of a deal i guess, but it could be, if you get an STD or you get pregnant. You could have a healthy baby and a happy life, or your childs father could leave and your stuck beign a single parent, or you could have a not so healthy baby, or being a single parent with a not so healthy baby.

I wish sex eduacation in schools taught more then just abstinance. When i was in school we had sex ed in 5th grade, 8th grade, then 9th grade. Fifth grade was basic, talking about the parts, talking about menstral cycles, talking about pregnancy and stds a little. Eighth grade sex ed went a little more in depth. Talking about all the different STDs, the risks of pregnancy, how conception and pregnancy take place, they even brought in 3 teen mothers, one who had an abortion, one who gave her babies up for adoption (she had twins), and one who was a teen parent, but everything centered around absinance. Ninth grade went even more in depth on STDs and recovered pregnancy. This time they went into things like fetal alchol syndrome, down syndrome, shaken baby syndrome, etc. But still everything was geared tword, DONT HAVE SEX!

I personally belive they need to explain things much better. Personally, i wasnt even sure i could get pregnant. Another little known fact is, i had a very large, pre-canserous cyst in my lower abdomen, i had it removed when i was 12. It was wrapped around one of my overies and pushing against my bladder and other organs. It was very large, around 5 lbs i belive. With all the damage it did on the inside, the doctors told me i MAY not be able to get pregnant easily when i was older.

Its not just the schools that are at fault, not by a long shot. Its most deffinantly parents too. Parents need to talk to their kids about sex just as they would about smoking and drinking. Kids need to know what the consequences are, they need to know what you expect, and mostly they need to trust their parents not to over react if they screw up. My mum never really talked to me about sex, pregnancy, or any of that. She never told me what she expected from me, she never told me what to do. I was terrified, embarrased, and a little ashamed to even bring it up to her. She didnt know i was even "sexually active" until at least 6 months after i started having sex.

We need to talk to our kids. We need them to know what we expect, what is right. We need them to know they can come to us with ANYTHING. Most importantly, we cant just expect the school system to take care of everything WE are supose to teach our kids.

That is how we will drop the teen pregnancy rate. We have to get involved. Teen pregnancy is NOT 100% preventable, but it is, for the most part preventable. Kids make mistakes, its just what they do, and they need to know its ok.

Wordless Wednesday

2010-05-05T18:17:00.004-04:00

I couldn't decide. lol

Hot Hot Hot

2010-05-03T10:23:00.002-04:00

Its may 3rd and its already HOT HOT HOT here! Its been in the 80's and the last few days its almost gotten to the 90's. It seems a little cooler today though, thank goodness.

Of course now that its hot, our A/C is having issues. Its set to 65, which is really cold for us, and its just barely keeping the downstairs comfortable. The upstairs is a different story. Its sweltering up there. The vents are open but no air is comming out at all anywhere up there.

Heat is a real problem for us. Val cant really control her body temperature well. When she overheats its not pleasent. She seems to go in stages of heat, first is being really whiny and almost clammy, then comes the cranky and hot to the touch, then she starts retching and screaming, then eventually she passes out, probably equally from exaustion and heat.

The best things we have found to help are to keep her naked, give her one of her little ice packs (she has three little ice packs, hello kitty, spiderman, and thomas the train), pump her formula through her tube straight out of the refrigerator, keep a fan on her at all times especially when sleeping, and keep her as calm as possible.

Thank goodness for military housings matanence. Hopefully we can get the matanence people to come out and take a look at it soon.

Going Down

2010-04-27T19:01:00.002-04:00

Val is sick again. For the last few weeks shes been "off". Very tired, not wanting to eat, not playing, etc, etc, etc. I havent been sure if she was getting sick or if it was just her body being a little too stressed. Now im sure its because shes getting sick.

The last three days shes been in screaming agony over her head and her legs hurting her. All day today all shes been doing is laying around. Shes not wanting to eat anything but those gerber "puff" things, shes not wanting to drink anything. Shes getting quite dehydrated, so far shes only had one wet diaper since last night. Ive had her on a tube feed all day and even thats not helping, its just making her tummy hurt.

Im starting to get worried we will have to take her to the ER soon. Unfortunantly she still doesnt have a doctor here, tricare (our insurance company) isnt being very helpful. They wont let us do anything until we go to their office and talk to them, which isnt possible right now because we dont have a vehicle at the moment.

Mystery Diagnosis

2010-04-20T10:48:00.004-04:00

I get the question about vals official diagnosis a lot. People asking whats wrong with her, or what does she have. The short answer is, we still dont know.

Its been nearly 3 years of sarching, and we have ideas, but we dont have any proof so no one can say for sure. The top of the list of possible diagnosis is still MITO, mitochondrial disease/disorder. However, thanks to the clueless neuro who ordered her muscle biopsy last year, we cant prove it. There is a special test that can bedoneon the muscle called electron transport chain testing, this actually tests how the mitochondria in the sample of muscle functions. Well thanks to Dr. Clueless it wasnever ordered, even though i was told it would be.

We did get the pathology report back on the sample. The pathology report is where they look at it under a microscope.That showed some unusual things, but nothing diagnostic. Also there was a lot of "freezing artifact" on the sample that made it very difficult it get the answers they needed.

So as for offically diagnosing, here is where that stands. The geneticist we saw in virginia was sure she was fine when we first went in to see her. By the timewe moved however, she was more then redy to diagnose her with MITO because all her labs were comming back looking like that wasthe answer. However, we had already moved when they had come to this conclusion so nothng came of it.

Then we saw a geneticist in wisconsin. This one was sure there was something going on and they would get to the bottom of it. However thelast time we saw her she had decided she couldnt figure it out so it must be nothing. She said val must have just been a "sick baby" and she should be getting better now. Although, she called just before we moved to maryland and told us we should look into something called hereditary fructose intolerance (which ive looked up and am pretty sure she does NOT have, it just doesnt fit well). She also said although she doesnt belive val has MITO she strongly reccomends we see someone more experianced in MITO if val continues to have the issues she does.

So now were here in maryland and im at a crossroads. I dont know whether to keep persueing a diagnosis or just live our lives and wait to see what happens. Over the last 3 years we have had so many different diagnosis, but none of them fit her as well as MITO would, but since her lab work doesnt constantly scream MITO and she looks pretty good over all on the outside i dont think many doctors would agree with me. Over the last year and a half, the time ive spent researching MITO ive gotten very used to the idea that it is what she may have, thats not to say i wouldnt be devistated if that was confermed, i have no idea how i would take it because right now its just a possibility. Im just not sure how many times i can hear people say "i just dont know" or "she SHOULDN'T be having these problems".

So there it is, thats where were at right now. Sorry i am so rambaly lol.

Neglect

2010-04-17T22:10:00.002-04:00

I think ive been officially charged with blog neglect. I haven't updated this thing in over a month. A lot has been going on and i just honestly havn't really had a whole lot of time. Plus my computer had an OH so wonderful virus on it that ive been meaning to take care. So it's runnng incredably slow and im getting all the pop ups that drive me nuts.

We are in maryland now. The move went decent. Val is having a small issue adjusting to having daddy home and not having oma around, but shes getting use to it slowly. I am slowly getting everything organized and settled. We are getting a washer and dryer tomarrow and i'll finally get all the dirty cloths out of the hallway. Now were just trying to get a vehicle. I am also looking into trying to get my licence soon, yes im 21 and still dont have it. Every time i think about trying for it something comes up, moving, having a baby, having a sick kid, etc. but i think im really going to do it now.

Val is doing ok. With the warmer weather, weve been staying inside a lot. With out a vehicle we havnt been going to stores or anything, so thats really helping val avoid the last leg of the col/flu season. Now we just have to hold out through the summer, when vals tummy tends to have problems, once we make it to fall were usualy good, until winter of course.

Shes been having a hard time with her chewing and swallowing again. Her fatigue has been horrible, so has her pain. Shes been having a lot of new complaints, most of them are reletivly minor but when you add them all together its enough to get me a lttle worried.

Unfortunantly today she had a really bad day. She couldnt seem to fall asleep for her nap. So all day she wa choking and gagging on everything, im fairly certain she had a few nasty aspirations. Now shes coughing and weak, hacky, dry, pathetic little cough. I really just hope it doesnt turn into a pnemonia again. Now shes having a hard time sleeping tonight, she keeps screaming out in sheer pain. Its heart breaking.

On a positive note, she is really starting to blossem in other ways. Shes using more words, she is trying very hard to express herself and tell me how she feels, she is even starting to sing more. Shes always loved music and singing but shes always been really shy about it for some reason, if you look at her while shes singing she will clam right up. Now she is starting to sing a little more openly, and i may be bias, but its the most beautiful thing ive ever heard.

Shes really starting to understand rules and consequences. Shes starting to understand that she can be alone for short periods of time and its ok (like or me to go to the bathroom by myself, FINALLY). She seems to be understanding that i can still hear her even if i cant see her and if something happens i will still come help her. Its really great to see her making some of these connections.

I am hoping to wipe this virus out by the end of the weekend, so hopfully i will start posting more again soon.

This is going to sound stupid but can anyone explain how the "wordless wendsday" thing works? Im thinking if i have someting like that to do weekly, i may be more likely to blog the rest of the week.

In Like a Lamb.

2010-03-01T22:13:00.004-05:00

March is said to come "in like a lion, out like a lamb". Meaning, it starts with the harsh cold weather of winter and by the end of march you are left with the pleasent mild weather of spring. With today, the first day of march, we ae aready seeing an amazing warm up. We are actuay supose to make it into the 40s this week. We may even get rain. All, or at least most, of the snow lingering on the ground is supose t be melting this week. It is really turnin out to be a wonderful begning to march.

Life seems to be going about the same way. Val is still in a rut, but she seems to be stabalizing once again. I am hopeing that she will regain the lost ground, and not find a new "baseline". Either way though, as long as she is no longer spiraling downward all is good.

Trevor will be in Maryland on wendsday. He was he needs to fill out some paperwork when he gets there, because it just wouldnt be the military without stacks of papers, but we should have place in about 2 weeks. Now we just have to wait until he can get some time off, more paperwork of course, and can come out here to help move everything. We hare hopeing by the end of this month to be in maryland all together again.

I can not wait to do vals room. She has found a new love for all things tinkerbell so that will be the theme of her new room. I have a tinkerbell wall border thing for her, 2 new tinkerbell chairs one of which i am confident will be suportive enough for her, tinkerbell sheet set she got or christmas, and a tinkerbell table that has a dry/erase board built into it. I think she will love it.

Also moving brings the prospect of possible answers fo val. It is an emense amount of work to get in with new doctors and get them er old records, switch her home care supplies, move her prescriptions, not to mention getting a new house in order and making it work *for* val instead of against her all while having 2 year old at my side 24/7. But there is apparently a real prospect of answers there. I have heard there is a decent mitochondrial specialist there. Maybe sh can give us some insight on whats going on, if we can get in to see her.

Also i will have trevor there to help me with the doctors. Some doctors just dont seem to listen to reason if your the only one speaking it. So trevor will be there to be my second voice. The one who can tell the doctors that, yes, *insert random weird symptom here* does infact happen even if it makes no sence as towhy it would.

So heres to march! May it be better then february!

Imagine

2010-02-22T19:58:00.004-05:00

Imagine your child strugged every day. Struggled to do even the most basic of things such as eating or breathing.

Imagine your child is happy and healthy. Then at a otherwise routine doctor visit you get dealt devistating news that there is something very wrong.

Imagine your chid has a disease that is so rare most doctors dont even know how to diagnose it.

Imagine your child has a disease that has no cure or treatment.

Imagine your child has a disease that has virtually no one researching it to try to find a cure.

Imagine your child was given a prognosis of "we dont know".

Imagine, just imagine your child had a rare disease. What do you think you would do? So much uncertainty and fear. This is a realityforso many families. Even rare diseases need to be researched. Even rare diseases need cures.

When the reality of a rare disease comes to your door, its not so rare anymore. You wont want to accept "we dont know", no one does.

Rare disease day is on sunday, please visit rarediseaseday.org to learn how you can help those struck by rare diseases.

The Heart of The Matter

2010-02-11T00:19:00.003-05:00

Febuary is nation heart diease awarness month. Watching the news, reading the paper, surfing the web, even just having conversations with random people on the street, there seems to be a resounding misconception. People seem to focus mainly on heart attacks and high colesterol when discussing heart disease. As if it is only an older persons disease.

This is simply NOT true. In fact 9 in every 1000 babies born have some form of congenital (meaning present at birth) heart disease or defect. When you think of this number it seems small right? Nine out of one THOUSAND. Thats like 0.9%, but think about it. Really think, there are, on average, about 216,000 babies born every day in the world, of that about 10,657 are born in the united states. That's approxamantly 1944 babies worldwide that are born with heart disease every day. These precious little babies will have to face many challenges throughout their lives.

Babies with heart defects and diseases often struggle to do even basic things, such as eat, and sometimes even breath. The stress their heart condition puts on their tiny bodies takes so much energy that they have nothing left. Many face feeding tubes, medications, hospitalisations, and surgeries. Unfortunanty many of them dont even make it. Almost twice as many children die, each year, from congenital heart disease, then all forms of childhood cancer combined. Of those nearly 4000 are under the age of one.

I have been touched by congenital heart disease. I know a few parents of children with heart problems. However two certain boys stick out in my mind the most.

Jedd, also known as deuce, he is 3 years old and absolutly amazing. I met his mommy on an internet support forum almost 2 years ago. He loves to run around and play. In almost every way you would think he is perfectly typical. Ask him to lift up his shirt for just a second and what you see may shock you. He was born with a rather large hole in his heart, at this moment the position of the hole escapes me but i believe it was either an ASD or a VSD. Either way, that combined with the pain from his gastroesophegeal reflux (acid reflux), he was unable to drink enough formula when he was a baby, he had to hve a nasogastric tube placed. He eventually ended up undergoing surgery to close the hole in his heart and another surgery to place a gasterostomy tube, plus other surgeries to fix a seperate birth defect he had. He is now thriving and his g-tube finally got to be removed last year. He had to keep it much longer then expected because he never got to learn ow to eat like most babies do, so he had to be taught.

The other little boy is named Jacob. He is 4 years old and has a form of cardiomyopathy. He takes many medications every day, relies on a feeding tube to help him gain weight and keep it on, and has very little energy left over to do all the fun thing most people take for granted. I met his mother through the same online support forum.

Neither of these kids are giving up and neither are their families. What everyone wants to see the most is a cure. No child should ever have to go through any of these terrible diseases. No child should have to die waiting for a cure. We need research to figure out why these things happen and to help the children who they affect.

Heart disease can affect anyone, of any gender, of any race, at any age. It is an unbias killer and it needs to be stopped!

My Baby Dragon

2010-01-30T00:36:00.002-05:00

Lately, any time after her nap you can find val curled up on my recliner. Today was no exception. The only difference today was she became a "baby dragon" while she was laying down. It was too adorable i have to tell the world.

Laying down, curled on my recliner, watching The Disney Channel, eating her oma's slushy with a spoon, she bolts up. Sits on the chair for a it, thinking. Stands and starts wiggleing her booty.

I give her a look, "what's wrong val?" i ask, thinking she is either poopy, again, or her booty hurts from the way she was laying.
"Val name dragon" she replys, in a tone as if i should have already known that.
"Really, you're a dragon? Thats very cool. Do you like being a dragon?"
"Val name dragon. Dragon tail wiggle."
"You're a dragon, and your wiggleing your tail? Thats very cool val."
"Val baby dragon. Baby dragon tail. Val love dragon."

Then she layed back down and kept mumbling about baby dragon tails. I have no clue where she comes up with this stuff.

Hope you enjoyed your dose of val cuteness for the day. :)

Revelations

2010-01-26T01:28:00.000-05:00

Im starting to realize val is not, currently, as stable as id like to believe.

For a good long bit there she was doing WONDERFUL. For a few months actualy. While we were having some minor issues, with her swallowing and her brething especially, things were good. She was sleeping semi decently, her GI issues werent quite that bad, very little pain, infact i was only giving her tylenol/motrin a few times a week if that, making great strides developmentally. Just so much was looking up for so long.

I'm a little slow on the draw though, because i'm starting to notice more and more that things are not ok anymore. Looking back, they havnt been ok for just about a month now.

She's having a lot more apnea issues, even during the day some times it seems she forgets to breath. She's tired all the time. Her balance is terrible. She can barely play around the house. SHe cant even make it through a small thrift store or grocery store anymore. Her GI issues are comming back full force. I fear her "motility" may be going from really fast to reltivly slow. Worst of all, to me at least, her pain is getting bad again, it's waking her up and causing her to fall down in pain.

No real perpose to this post, just me kicking myself for not noticing sooner that things are going downhill again. I don't know what to do with this kid. We just need someone to listen and help her, to help us all honestly, it kills me to see her struggle so much.

Crush Injury

2010-01-22T00:43:00.006-05:00

Who would have thought we would be in the ER for something as normal as a smashed finger tip. Last night we went to kmart just to kill a couple minutes, went to the bathroom and val decided to play with the stall door. She was trying to hide from me, cause she thinks its OH so funny to watch mommy run around annoyed, and she ended up smashing her finger in the stall door. Slapped a bandaid on it and went about the rest of our evening. It wasnt bleeding much with the bandaid on so i figured she was fine and we could go home.

Well i took the bandaid off, around 9pm, just to be sure i did indeed stop bleeding. I was wrong. The second i took the bandaid off it started gushing again. So out the door we went to the ER just to be sure she didnt need stitches. Oh how i hate the ER. Val HAS to wear a mask there because she cat help but socialize with EVERYONE, especially the sick little boy who was waiting for a chest xray. (Yeah we were waiting in the waiting room instead of a regular room because the doc at the small ER near us was tied up with a bunch of ambulance cases.)

Val was so good and her incredably sweet self. She was perfectly fine as long as no one took her bandaid off. The doc finally got around to seeing us at about 10:30. He had to take it off to look at it and it was still gushing blood. Two steri strips and we went home. Doc said the steri strips should last 1-2 weeks, well they already came off this morning. So much for that idea, her fingers are just too tiny.

The best part of the evening was we had the most amazing nurse. She was very kind and she really cared. She even knew a little about metabolic and mitochondrial disorders. It was really interesting.

Oh and val got a bunch of new tinkerbell outfits at kmart! Of course i couldnt find any in her size so i got 5T, thats all i could see. Next winter, or the winter after, or the next, she will LOVE them! Best of all they were dirt cheap and ADORABLE!

Well thats all for tonight, i need to get some sleep.

Balancing Act

2010-01-17T21:25:00.003-05:00

Im not sure if ive mentioned this yet, but we are moving again. We moved to wisconsin in june when trevorwas in iraq because icouldnt take virgnia anymore. When we moved we were hopeing trevor woud be able to get orders in illinois (which in retrospect was crazy because it would be almost impossible for him t get orders there with what he does, especiallysince hes not an officer).

Well he got orders to maryland instead,so in march, or around there never know for sure when we will get housing, we will be moving to maryland. I NEED this move to go smoother then ost moves weve had. Most moves, even when i was little, consisted of throwing everything in trash bags and piling it in a u-haul. Then just dealing with the disaster later.

Thistime in doing the logical, normal thing. Im actualy puting everything in boxes that are labeled as to which room they will go in. Since this is a little more time consuming then our typical "method" and i still have everything in our storage unit to go throughim starting quite early.

Thus ensues the delecate balancing act between what we really may need in the next 2 months andwhat can be packed away. So far i have around 20 boxes packed, labeled and siting up against the walls of my bedroom. Now were getting to things like medical supplies. Do we relly need to keep out all of her syringes? How many cans of formula do we really need? How few extentions, for her feeding tube, can i realistically get away with keeping out?

Oh, the craziness.

MRI-update

2010-01-14T22:52:00.003-05:00

Short update today.

We got the results from vals MRI back on monday. Overall it wasnt bad, everything they were looking at (that could cause the slowing they saw on he EEG) was normal. No tumors or leasions or whatever. However they saw that she has almost no pituitary gland. What this means we dot know yet, i have to get her in to see her endocrinologist as soon as i can. It could be her secondary hypothyroid is really panhypopituitarism or it could be nothing. I realy dont have a whole lot of information right now.

Minority

2010-01-04T23:20:00.004-05:00

Val has occupational therapy every other week. This week was an OT week. OT sessions consist of bouncing on vals "peanut ball", playing with play doh, listening to music, occasionally spinning, and brushing. All of this is to try to help her process "sensory input" better. She processes things like sound, motion, touch, etc differently. Some things she is over sensitive with, like sound for example, the sound of a toilet flushing can send her into a screaming fit because it is just way to loud to her and it hurts. Other things she she is under sensitive to. She also does things to build the tiny muscles in her hands because she has very low tone there, andd she does some self help things like getting dressed/undressed etc, but those are second to the sensory things.

One of the first things most therapists try to help with sensory processing is a technique called "brushing". Using a rigid, yet flexable plastic brush you rub up and down on the legs arms and back 10-20 times each, with firm pressure, only lifting the brush up to change position from one limb to the next. Vals therapist told us we would see results from this within 2 months, but most see results within days. She said there is typically only a 5% chance we wouldnt see results.

Well, val decided to do something the therapist had never heard happen before. She got cranky from the brushing, it made her not want to sleep and it made her extreamly whiney for up to a half hour after.

On top of that, she is also apparently in the 5% that it doesnt help. We never saw any decent results from it so we (the therapist and i) decided today to stop. Why oh why must we always be in the minority group with these things? For once can she just do something "normal"?

That is all for now ;)

Out with the old!

2010-01-01T22:08:00.003-05:00

A new year holds many promises. Promising to be better then the year before. Heres to hopeing 2010 makes the promises happen. So heres the things we are looking forward to in 2010

2009-trevor was only home for about 9 weeks total (2 in jan, 2 in march, 2 in may, and 3 in dec)
2010-trevor should only be gone for about 10 weeks. We should be together again in march

2009-val has dealt with quite a few arrogent doctors
2010-we are hoping to find new doctors when we move who will actually want to help her

2009-val had her ng tube from the begining to april 30th then the peg until sept/oct
2010-val has her mickey button which has been amazing for her!

2009-val has had a lot of trouble with pain, diarreah, fatigue, and breathing problems
2010-i am more determined then ever to figure out these problems, whether i have help or not

We are moving to maryland, to a new house, and we can actually be a family again.
We have figured out many insurance issues and i think things will run much smoother this year.

I will leave you with that because i must get a sleeping child off my arm before my arm falls off.

Bye Bye 2009!

2009-12-31T22:46:00.004-05:00

Christmas is gone, and a new year is upon us. The last time i blogged was thanksgiving, honestly things have been a little stressful and crazy and i just havnt had the time or energy to do much of anything. So sit back relax and grab a nice New Years beverage, this is going to be a long one!

Val's EEG, well it got pushed back. Instead of having it on the 30th or 31st or whatever, it ended up being on the 3rd before her GI appointment, not a big problem, just a longer time for the glue to cement her hair together. It went reletivly well. This was vals 3rd EEG, and the 5th time shes had the electrodes stuck to her head because they put them on for sleep studies too. She layed there very calmly and actualy helped the tech hold the wires, she is such a big girl it amazes me sometimes. The tech listened to me and did NOT wrap her up though, so im sure that helped some, she HATES being wrapped. She also actualy went to sleep, which is truly a feat because while she is almost always exausted she becomes very overstimulated at the docs and she wont settle down. So a decent start to the day.

Val's GI appointment, these appointments are the ones i dread for days. This one was no different. The GI here is so condecending. He does not beleive val has any problems because she appears normal. As i said before she gets overstimulated at the docs. He doesnt beleive she needs her feeding tube because she CAN and WILL eat. He doesnt beleive she should be on her elecare because she tested negetive for a milk allergy. He just overall thinks he knows everything. I actualy left the appointment in tears, i felt like he threatened me. Thats not even half of it but i really would rather not talk about it.

(Just to reiterate, she can and will eat, but she needs her gtube because she becomes so exausted just from the simple act of chewing that she can barely finish a meal. Meals usualy end with me putting food in her mouth and actualy helping her to chew. Also she is considered an aspiration risk. Most kids who aspirate, meaning when they swallow food/liquid goes into their lungs, tend to grow out of it as they get older. Well it appears val is growing INTO it. She had minor issues as a baby but then was fine. Passed a swallow study at a year old, only to fail one for thin liquids at a year and a half. Now it appears its getting worse again, even her speech therapist is quite worried about it. Thats why we need the gtube)

Val's genetics appointment, overall it went reletivly decently. I wouldnt say good, but it wasnt bad. They agreed with me to keep the gtube, at the very least, until her hypoglycemia is figured out because that is considered a life threatening condition. However they still defended the GI by saying things like "even a child with a diagnosis that typically reguires a feeding tube, our end goal is still to take the tube out" which could be true in some cases, but in others is completly rediculous. Not to mention, my goal IS to get her off the tube eventually, but AFTER we figure everything else out. I will NOT put my baby girl through that surgery again if i can avoid it.
They also encouraged us to find a new geneticist in or closer to maryland (more on that later), where as the GI practically told me we shouldnt go, as if he has a choice. We all decided we wont be seeing genetics here again unless something happens and we need to. That is also bad news though, because while a few months ago they were certain they could help us, now they dont know what to do. She has nothing left to do tests on (ill explain in a second) and they dont know where to go from here.

Earlier this year val had a peice of skin taken from her rib area and a peice of muscle taken from her leg. The skin is supose to be able to be "regrown" as much as they need and typically with the muscle they keep at least a small peice incase they need any further testing down the road. Well her skin sample died, it will not grow anymore, and her muscle is all used up apparently. On top of that, neither of the samples revieled much of anything. I dont know exactly what was up with the skin sample but i was told it was ok. The muscle, im pretty sure someone screwed up on. I got the lab results that the old nurologist gave the geneticist (im sure ive ranted about this before, it was such a hastle). All we have is the basic testing, it says it was sent off for specialized testing, but we dont have any of those results. Also on the basic testing there was too much damage to the muscle caused by freezing to adaquatly tell many things. (if anyone is curious about that i can show you the lab report)

Vals EEG results, it showed slowing again. Background slowing in the left postierior hemisphere. What that means i dont know, all i know is in january, on her last EEG in virginia, it too showed slowing, it was in/around her left temperal lobe. So thanks to our wonderful pediatrician we are getting an MRI on the 6th. She does not want to see val fall through the cracks and something serious be overlooked. She is wonderful.

Val has also had a new medicine added to her collection. She now is the "proud" owner of a nebulizer. She has saline to help loosen up junk in her lungs and albuterol to help open her airway when shes sick or having trouble. Shes also had more then her fair share of illnesses so far this winter, again. So far, though, weve been able to avoid being admitted to the hospital.

My birthday was on Dec 22. I turned 21! We actualy had a little fun, we had tacos for dinner and then cake and ice cream. Val even got her own cake, the one from the store had milk in it. We didnt really do much else, nothing special but its wasnt horrible.

CHRISTMAS! Val had a blast, she got a ton of stuff. She actualy understood opening presents this year. She really loved tearing the pretty paper apart. A run down of some of the stuff she got, a bunch of handy manny toys, a tinkerbell doll, a plush tinkerbell with a blanket, a tinkerbell bed set, a little tinkerbell backpack, a few hannah montanna outfits, a princess lunchbox, a few movies, a hannah montana mp3 player (from her daddy), a vsmile motion from her uncle dennis, some tub toys from her oma, a bunch of new books, some little einsteins dolls, and a bunch of games for her new vmotion. (side note. i buy stuff from may (her birthday) to december for christmas, and most of it comes from the clearance aisle at walmart, but i make darn sure she has a good christmas and birthday every year. And yes she is a little spoiled, but in a good way, she actualy plays with all her toys and she is actualy really good at sharing). Also i got trevor a J&H designs boston red sox jacket, i got it for less the $50 from a thrift store and it looks brand new, i love it and so does he.

Last but certainly not least, DADDY!! Trevor came home on the 10th. Unfortunatly though he had to leave today. Its really rough and val really doesnt understand why daddy keeps leaving. But in a few short months we should be together again in maryland. His next duty station will be maryland and we are planning to move with him. (I told you i would get to why we would look for doctors in maryland didnt i?)

So more to come as 2009 turns into 2010. But for now im sure this is long enough, ive been typing for nearly an hour so im pretty sure if you took my advice and got a nice new years beverage before reading you are either a little tipsy, or you need to use the bathroom by now so ill leave the best/worst of 2009 stuff for later. :)

Hope everyones 2010 brings great things and wonderful opertunities.

Thankfully Thanksgiving

2009-11-26T20:45:00.003-05:00

It's that time of year again. The "holiday season" has offically started and every american has gained another 5 pounds in one day. Every thanksgiving i try extra hard to think of things i am thankful for. This year theres quite a bit to be thankful for.

-trevor is comming home in about 2 weeks
-we all have good food to eat
-each of us has a warm bed to sleep in, even if mine has been a little lonely for the past year
-we have aquired a lot of thigs val has needed throughout the year without too much stress
-val has only had 2 real hospital admissions this year, with one of them being to get her gtube
-we have a great pediatrician for val here, im going to be sad to leave her when we move
-vals making some impressive strides in her speech
-we finally got rid of the NG tube earlier this year
-i am almost completly done with holiday shopping and wrapping, only a few more things to wrap

There is so much more too. But the biggest thing today, that i just found out today by the way, TREVOR IS OFFICALLY OUT OF IRAQ!!! He is on his way home, the process of getting back to the states can take quite awhile but he is really comming back!

Thats all for tonight.

Happy Thanksgiving!

Down we go.

2009-11-17T10:59:00.003-05:00

After a nice long streak of (mostly) good days we are back in the toilet. Val has had a cough for nearly the last month. Its been rather mild, but its been making her aspirations worse which in turn makes the coughing even worse, its a vicious cycle.

Thursday she woke up and could not stop coughing. By that night she had started wheezing and i finally gave up and realized it wasnt going to get better by itself. I took her to her pediatrician and they took a chest xray. Again it wasnt "normal" but no one is 100% sure what it is in there. This time i saw it, there were grey streaks all over the place except in the bottom right which was solid black, then there was a thick solid grey streak in the lower top of her left lung on the right side. It looked crazy and a little scary to say the least. I have never seen an xray look like that, even when ive had pnemonia as a child (my old pediatrician would always show me the xrays).

Well the good news from that is she doesnt need antibiotics, but she was put on a nebuliser and albuterol incase she starts wheezing again. Shes been getting plain saline through her nebulizer because she just cant get the junk in her lungs to come up when she coughs so it will help loosen everything up. She hasnt needed the albuterol yet though, thankfully.

I think she is finally getting better though. She isnt coughing a whole lot any more. With the robatussin she is getting at night she is sleeping pretty well. She just had horrible diarreah now, worse then usual but its nothing new. She has about 5 poopy diapers a day right now and its just nuts!

Schedual of things yet to come is as follows. EEG on the 30th of Nov., GI on the 3rd of Dec., Genetics on the 7th of Dec., then trevor comes home soon after that.

Oh happy day!

2009-11-07T21:54:00.003-05:00

Today was a great day! Really! To start off, it was beautiful outside. Mid 60s, sunny, with the nicest breeze, just gorgeous.

Ive been trying to slowly buy myself a new wardrobe, because all my cloths are from likr 5 years ago. Well i ordered some stuff off of walmart.com and it came today, almost a week before they said it would. And most of it fit PERFECTLY, one dress was a little tight around the boobs, and the pants were WAY to short, but everything else was amazing! Now im just waiting for some things from kmart.com and a smaller online shop. Im also waiting for a couple things from target.com but somehow it got sent to my old address in virginia, even though i KNOW i typed in my current address, so i have to figure that out. But thats not going to get me down.

We went to subway for lunch, val got a 6 inch spicy italian sub and she ate ALL of the meat and half of the bread, i was so proud of her. She didnt eat much of anything for dinner, but i expected that.

We went to ACE hardware to see if they had any cable i could rig vals stroller up with to get it to recline. The amazing guy that was helping us decided to talk to a co-worker of his and they figured out a way to fix it for me so it has a handle and everything, its PERFECT and way more then i could have ever asked for. And all it cost me was $6.

Val ended up falling asleep at 6 tonight because she was so exausted, but i think she will probably sleep most of the night. She really needs the sleep.

Today was really a great day, tomarrow has some big shoes to fill lol.

Great day gone bad.

2009-10-28T15:22:00.004-04:00

Today started out absolutly great! Yesterday trevor calls and tells me he will be home earlier then we thought. I actualy have an exact date that he should be HERE with us. Its about a week-ish before i thought he was comming! Life was good.

This morning my brother, who is stationed in Japan, called me. I havnt talked to him on the phone is almost 2 years. He just got a VOIP and connected it to his cell phone. I can now call him whenever i want to and he can call us. Even though he woke me up early, life was even better!

Add all that to the fact that val has had a couple great days in a row. Good energy, great appatite, drinking a lot, new words, and just generally even happier. Life was great!

Then i had to go tell people. I spoke too soon for sure.

I got a call from vals new home health company, for her feeding tube supplies, and the guy said i had to have $87 up front before i could get her supplies that he was bringing out today. No one told me about this when we put the order in so i just assumed it would be billed after insurance was billed. I got the money, thankfully i still have money in the bank. Then when he came to drop the stuff off the door closed behind me with val still inside. The door sticks and if it closes all the way its almost impossible to open it from the outside. I called my mum, who was thankfully just one town over at the clinic. She rushed home and opened the back door and then got the front open from the inside. Thankfully val was really good and stayed right by the window.

Then i get inside and realize they screwed up her order, her first order from them, way to make an impression. They forgot her big syringes and gave us luer lock syringes instead of leur slip syringes, there is no way i can use them without an adapter peice (which i actualy have some of but thats not the point, they are supose to send things we can use). Not to mention her button is on backorder. The fixed it, well except the backorder obviously, but its still annoying. If this is any indication of how they handle things we will be switching rather quickly.

Now val is having some problems too. She is so tired and shes acting like she has a headache again. She has a stuffy nose and the cough shes been fighting for a week and a half is back.

Not to mention its almost 3 and trevor hasnt called yet which means he probably wont for today. I know hes probably just busy but i HATE the days when he doesnt call :(

What else can go wrong today? Wait, scratch that, i dont want to know.

I have to SHAVE!

2009-10-25T17:06:00.003-04:00

Since june i have only shaved my legs 2 or 3 times. Theres really no point to it without trevor home. Trevor is comming back in december. I actually have to shave my legs in about 7 weeks so they are all nice and smooth before he gets home. Right now all i have been told is he will most likely be home before my birthday (thank you opsec, no one is allowed to know!).

I cant wait for him to get back because val screams every day several times per day that she wants daddy not me or that she wants to call daddy (the only way to call over there is to go through red cross and thats only for emergencies obviously). As a matter of fact she is asking me right now "daddy come?". She really misses him, and so do i.

But i dont wanna shave my legs :( i like the extra leg sweater ive got going lol (totally kidding). I still have been shaving my arms/armpits because i hate feeling the hair/stubble while im sleeping.

I get 7 more weeks of hairiness!!! Then i get the "pleasure" of shaving my legs again (and one other body part i dont care to mention lmao).

(hows that for a seemingly pointless post, all i ever post here is medical updates. there ya go, unmedical crazy rambling) :)

neurologic frusteration

2009-10-22T21:47:00.003-04:00

After talking with dh im a bit more calmed down about the whole situation and i think i can rationally look at the appointment now.

First the part that really frusterates me. Val had a muscle biopsy done on April 30th, basicly they cut open her left thigh and took a peice of her muscle to look at and do tests on. Well i talked to the neurologist a few months ago about the results. He told me he had gotten eveything back and it all looked mostly normal. This was good news and bad news mixed into one. Good news because it ment there was nothing wrong there, like mitochondrial disease which is considered one of the highest possibilities for val right now, muscular dystrophy, or many other terrible diseases. At the same time, however, this was bad news because we were still no closer to an answer, in some ways it felt like we were farther away, and it also ment we did a quite invasive procedure on her for nothing.

After talking to the genetic counselor here, because we needed to get vals medical records back, it looks like he may not have even ran the most important part of the test. The part where they test the different enzymes and take an even closer look, this is pretty much the ONLY way to tell, by muscle, if a child has a mitochondrial disease. If he did send it then he is just generally being a HUGE pain and that frusterates me too. Every time the genetics office has asked for her results they only send the basic part, not the specialized part. They have tried several times and arent getting any help, the counselor is trying one more time then she told me she will call the lab it *should* have been sent to directly to see if it was ran and to see the results if it was ran.

Now onto the other one. The NEW neurologist. She seemed to beleive that i was a complet idiot and she knew everything. She yelled at me for not sending them vals records, although i was told when i made the appointment they would send me medical release forms to get them, i was never sent the forms. I did bring her records with me, which she also complained about because it was "too much" and i didnt have a neurology section clearly marked. Then she was asking me how long her staring spells last and how long her blue spells last. I honestly do not know how long they last, i know the staring spells last no more then 30 seconds, the worst shes ever had was about a minute but those are very few and far between. Then she kept hounding me to answer her telling me there is NO way i could NOT know how long they last. Seriously, i HATE when they make me feel like im doing something wrong by telling the truth, if she wants me to lie i could lie, but that wouldnt help val any now would it.

She then proceded to a physical exam, she saw vals g-tube, which is something i tell every doctor about, just to avoid confusion and get it out of the way, well she asks me when we are planing on taking it out. Im sorry lady but she just got it in april after almost 11 months with an ng tube, she completly relies on it when she gets any little illness to keep her out of the hospital, she relies pretty heavily on it when she is tired, and on a daily basis for hydration. Its not comming out any time soon, no way.

Then she looked me straight in the eyes and told me she doesnt think val is having seizures. Then she made a point to tell me "this is a good thing" like im an idiot and i WANT her to be having seizures. To be totally honest im not completly convinced any of her issues are seizure ralated. Then she said "lets to an eeg just to be sure and then see us back in 2 months" and was very quick to leave. Val has had 2 other eeg's and none of them showed anything diagnosic, what makes her think this would be any different. What her old neurologist told me is, if we dont actualy catch an episode on an eeg we cant ever be 100% sure if they are seizures or not. Well these episodes are very random and there is no way to tell when it will happen.

What frusterates me the most is that she wouldnt even acknowledge any of vals other issues. When i tried to say something about other problems she just blew me off or cut me off. By the end i just kept telling myself, lets see what genetics says in dec. if they can figure something out maybe we wont even have to worry about this anymore.

So that was it.

I hope everyone is well, nighty night!

"annual" early intervention update

2009-10-21T23:17:00.004-04:00

We had a big day yesterday. First Val had her annual early intervention meeting to dicuss where she is and if we need to change anything with her therapies. This was odd for most of us because we have only had 2-3 sessions with the physical therapist and 1 with the occupational therapist. But because we started with early intervention in sept./oct. last year in Virginia they have to do the annual eval now.

We did however get the best news i could have hoped for, Val is officially "age appropriate" with her speech. Shes been in speech therapy for a little over a year now. She is still on the lower end of normal but she is making HUGE strides in her speech. We are going down from 1 therapy session per week to 1 session every other week with the plan to revisit it in a couple months and hopefully drop it down to 1 session per month.

Unfortuantly i learned she is a LOT more behind in her gross motor skills then i originally thought, she is between an 18-20 month level, this means she is just now doing things most kids do when they are 18-20 months old. She is 28 months, so thats an 8-10 month gap, it may not seem that big but it really made my heart sink, i was sure she wasnt more then 3-4 months behind.

As we already know her sensory profile is horrible (although honestly, im not to sure i beleive that to much, the OT seems to think that EVERYTHING val has issues with will be cured with sensory therapy). Her "self help" skills are a little behind to, but thats mostly because she has a lot of difficulty dressing and undressing herself. She can put things on that are adult size but if shes trying to put her own cloths on it just doesnt work. PERSONALLY i beleive its because she has trouble manipulating the large muscles in her arms and legs to get the strength she needs.

Everyone also got a crash corse in "sleepy val 101". Last week we had OT on monday and ST on tuesday, tuesday night val was so wiped she couldnt walk well and ended up falling and nearly breaking her foot. Now they are trying to work it out where each therapist comes on a different week, and the one week per month we have to double up right now they are trying to give her a minimun of a full day rest inbetween, or do it on the same day so she can just sleep the rest of that day, because its just too much for her otherwise.

After all of that, i went in search to find a tea. Nestea red tea, its naturally caffine free (for me caffine triggers headaches, asthma attacks, and hives, its just nasty stuff), and when ice cold tastes like heaven in a bottle, but only 1 store carries it that i have found so far. After that we were off to childrens to see nurology (and genetics to get her record book back from them), but i will have to post about that tomarrow because im still really upset about how the neurology appointment went and im still in shock (well, not really but thats the simplest word i can think to describe it) at what genetics said. So until then, nighty night!

OH come on!

2009-10-08T22:24:00.003-04:00

it took 3 tries to get val blood work done this morning. the blood work the geneticist wanted, we couldnt do it monday because she wanted val to be off her elecare for at least a week, elecare has something called MCT oil that can throw off the blood work. 3 tries isnt unusual, and for val its actualy reletivly good, but i just hate it.

then we went to burger king, val always gets apple fries after blood draws, hey its better then promising her candy, its actualy healthy and hey, calories are calories right? well they screwed up and gave us just a burger instead of her meal. went up and told them i payed for a meal and i want a meal, so they give me a bag with a toy and fries, UGH! so after i convince val that fries are just as yummy as apple fries and finally get her to eat most of them we go because i was beyond annoyed.

stopped at walmart and SMACKED my head with vals stroller while trying to get it open. then on our way out of walmart, while trying to load up the car, i get stung by a freaking BEE...in the armpit none-the-less. UGH, what kind of self loathing bee stings someone in the armpit? thankfully i was wearing a sweater and i pulled my arm away rather quickly so it could have been much worse. by the way, it made a HUGE welt on my inner, upper arm, probably a good 2 inches long and at least 3/4 inch wide.

then onto the post office where i spent almost $60 sending out trevors new laptop which he just can NOT wait 10 more weeks for (yep, he should be back in about 10 more weeks). it was $30-something to send and another $27 for insurance. then about half way threw there i start feeling light headed and like im gonna be sick, my guess a mixture of very little sleep, very little hydration, stress, and the sting since i dont really FEEL sick.

then we come home, about this time i realize i forgot to talk to vals geneticist while we were at childrens to get vals records back, and i pinch my finger beinging in the groceries! then val refuses to take off her shoes and stomped (accidently) on my BARE toe with her very hard shoes. then if all thats not enough, i burn my arm with a very hot fork at dinner (not badly, its just a little red).

now im laying down feeling a little feverish thinking im gonna be sick again (i really do not think i actualy have an illness, i can usualy tell. this is something else).

anyone else wanna take my bad luck for a while? please?

GENETICS!

2009-10-05T20:33:00.003-04:00

val had her genetics appointment (well technically biomedical genetics). over all it went surprisingly well. they really seem like they want to help her. both the geneticist and the genetic counselor have young-ish kids so i think that makes things a little easier.

the appointment took forever. when i got the paperwork in the mail it said they had "allotted 2 hours for the appointment" well her appointment started at 12, we didnt get out of there until 4, so much for 2 hours lol.

they started off taking a history, a LONG history, we went over many body systems and did a family tree of sorts. we went over so much my head still hurts a little. the poor genetic counselor couldnt stay focused on the subject because she was just loving val. she kept saying how cute and sweet she was, not to mention how adorably distracting.

i am SO thankful they KNOW that kids can look adorable and all and still have so much going on. she understood when i told her she looks so good because i bust my but day in/day out to keep her looking this good. she even understood how she gets eaily overstimulated in a doctors office, she has such a problem with her energy yet at a doctor office she is typically bouncing off the walls.

then they left, and val got to sleep for an hour while everyone talked.

finally the genetic counselor came back in with the geneticist. she too seemed very kind and caring. she went over more things and asked more questions. then she told me she is going to do everything she can to figure val out. she wants to put fatty acid oxidation disorders back into the mix, she is keeping mito in there, and she is doing a bunch of labs (blood and urine). we go back thursday to get that done because they want her off her elecare as long as possible, at least a week, so the labs dont get screwed up because of that. (elecare is stuffed full of MCT oil which can make certain labs look different.)

we are going back on dec. 7th. they really are hopeing to figure this out as soon as possible so when she gets sick we can head off all the complications that come with it. they want us to be hypervigalent to try, if at all possible, not to let her get sick right now.

so all together they did FAR exceed my expectations. the ONLY thing i didnt like was that she wants me to stop the tylenol and motrin. shes been on these almost daily for over a year now, she is concerned about liver and whatever damage. i understand the concern but this is the only way to make the pain at all more tolerable for val, theres no other choice right now because everyones afraid to give her anything due to her central apnea issues.

i think that about sums everything up, please forgive any typos and/or poor grammar, im running on even less sleep then normal lol

Allergist kicks GI butt!

2009-10-01T20:36:00.003-04:00

val had her allergy appointment today. while they made me into a lier they also were a lot better then i was expecting. its sometimes great to have low expectations, then you are pleasently surprised a lot more often then you are disappointed.

what i expected: go in, look at her, get a history, tell me most kids out grow those problems lets try giving her some milk/soy and see what happens. - this would have been bad because i would have to care for a pukey screamy little girl all night and very possibly for the next few days, i am VERY happy they did not suggest that.

what happened: went in, took a history, told me it DEFFINANTLY sounds like she has a milk allergy, quick physical exam, skin prick test for milk (and milk products), soy, corn, and normal enviromental allergens. when they came in to look at the results of that they were a little shocked because she didnt have much of a reaction to the histamine (the one thing that EVERYONE is supose to react to). since the test is a comparitive test (meaning they compare the things they are testing to the reaction from the histamine to see what is and is not a reaction) they could read it accuratly (although almost all of the other pricks had deffinant welts). so we did a RAST test (a blood test to check for specific antibodies). they told me to keep giving her the claritin/benedryl and keep her away from the foods we are keeping her away from. he also said it is very possible its an intolerance (unfortunantly there is no way to check for intolerances) but with how she reacts he would like to check allergies first.

the doc was really great to, she (yeah we saw 2 docs one was more of a student, the female, and the other was the resident, the male) seemed rather shocked at how dismissive the gi was. she was very glad we alraedy had appointments with genetics and neurology. she was VERY shocked when i told her about the energy issues and the tone/strength issues.

val got 8 more hannah stickers today too.

all in all they were really nice and really good and im glad we went. up next is genetics on monday, then neurology on the 20th.

quick (maybe) update while vals napping

2009-09-30T14:06:00.003-04:00

well i guess now is as good of a time as any to do a medical type update.

val saw endocrinology, gastroenterology, pulmonology, surgery, and the pain and pallitive care clinic so far.

endocrinology* went very well. the doc didnt really have any new insite on anything but told me to try to keep a closer eye on her blood sugars because we may need to look at her adrenal gland to see if she is making/using cortazal correctly. since starting her on her thyroid suppliment her blood sugars have gotten even crazier then before. apparently if you take synthetic thyroid hormones while your adreanal gland isnt working it can create a disaster. the only thing in her favor on that is shes been on it for over a year and she hasnt had too much of a problem with things. her other idea was a possible dysautonomia factor. she deffinantly has traits of autonomic dysfunction** but no ones ever picked it up before.

pulmonology* went reletivly well too, they are going to try to get her reports from her previos sleep studies** and see what the other doctors have to say, then we will go from there. they did say that we will most likely NOT be going the c-pap/bi-pap** route because with a kid her age no one expects her to leave it on or be able to adjust it if need be etc.

her surgery appointment was tramatizing, but good at the same time. they switched her long tube to a tiny little button**. however they just yanked it out with no pain meds or anything. she screamed for a couple minutes, was bleeding pretty badly, and shes still a little tender but her granulation tissue is much easier to control with this tube. the only thing i dont like is i cant just pull the outside bolester up to give it a good thourough clean.

the pain clinic went decently. im not sure they believed 100% just how bad vals pain gets but at least they didnt say shes faking or im over-reacting or anything. they dont want to start any meds for fear it will make her apnea** worse but they did increase her tylenol and motrin from 5 ml each to 7.5 ml each.

the gastroenterology* appointment was a huge bust though. the doc would not listen to me about anything. he said she can not have anything more for her reflux because the prevacid dose she is on should be more then enough. he said she isnt allergic/imtollerant to milk or soy because kids grow out of those things and she can handle trace amounts with very minimal issues so there is no way she cant have it (yeah right!). apparently he thinks shes overweight, she is 2 1/2 years old, 36 1/2 inches tall, and 31 pounds. and the kicker of it all is that he doesnt think she needs her tube, he even mentioned taking it out. his (almost, its been a few weeks) exact words were "if you made her food more palatable she wouldnt need the tube." she is not some random picky eater and she isnt even orally aversive, she has no food/oral aversions what-so-ever. this kid LOVES to eat she would eat if she could and she does eat when she can. her problem is she aspirates** on thin liquids which is progressing to the point that her speech therapist is practically begging me to get one of the docs to do a swallow study**, and her energy level is in the toilet, on a good day. she gets tired so fast and she knows it, she is 2, she has come to realize she doesnt have enought energy to play AND eat so typically she choses playing, what pre-schooler wouldnt? i have come to terms with the fact she may have her tube for quite a while if not her whole life. its helped her so much that i dont care anymore, i dont want to see her struggle like that again.

((you can skip this section if you already know the medical mumbo-jumbo up there))
*endocrinology is the study of the endocrine system, that has deals with your thyroid, adrenal gland, pituitary, hypothalimus, etc. they deal with things like growth problems, diabetes, hypo/hyperthyroidism, etc.
*pulmonology is the study of the respiritory system, they take care of everything with your lungs and breathing
*gastroenterology deals with your gastro-intestinal tract. everything from your esophegus to your colon. they care for things like GERD, IBS, constipation, crones/coalitis, etc
**autonomic nervous system- this is the part of your brain that controls all the automatic things in your body, it controls your breating, heart rate, blood pressure, temperature, etc
**sleep study- this is a test where a person gets connected to wires on the head, face, stomach/chest, and legs then they go to sleep and everything recoreds, this tests for apnea, restless leg syndrom, and a bunch of other sleep disorders
**apnea- val actually has 2 types of apnea, she has central apnea where she completly stops breathing for a period of time because her brain does not tell her to breath and obstructive hypopnea where she continues to try breathing but something blocks it so she breaths very very shallowly.
**g-button- a special kind of feeding tube that goes in a surgically placed opening into her stomach, its called a skin-level device because there is no tube extening out of her stomach, it is just a little bar that comes about 1/4 to 1/2 inch off her stomach with a little plug to close it.
**c-pap/bi-pap- this is a device that forces air into the nose to hold the airway open while sleeping, c=pap has a continuous flow of air while bi-pap alternates pushing and pulling the air to help you breath both in and out.
**aspiration- this is where something that is ment to go in the esophegus and stomach ends up in the lungs instead. this can lead to complications such as pnemonia, chronic llung disease, scarring of the lungs, and other serious problems
**swallow study-this is the test used to diagnose aspiration, barium (a radio active liquid) is made to differnt consistancies then drank/eaten and watched on a monitor as it goes into the esophegus and stomach
((here ends my medical mumbo-jumbo section))

up next val has an allergy/asthma/immunology appointment tomarrow to hopfully conferm that, yes she should stay on her elecare for now and not to push milk/soy until she can communicate better as her last allergist told us. then on monday is her genetics appointment, then on the 20th is her neurology appointment. i hope these next appointments go smoothly and we can get some good help/info.

crazy little blue girl

2009-09-26T22:46:00.003-04:00

wow, 3 posts in 3 days, im so proud of myself.

well today was fairly decent. val was extra tired today for some reason but im hopeing its just because she hasnt been sleeping well at night (well worse then normal i should say because she never sleeps well). she woke up at 7:30 when i finally gave up sleeping and got out of bed. she had managed to scoot herself into my bed three times last night, one before i went to bed, one around 2 then i rolled her back to her bed, and one at about 4 when i finally gave up rolled over and let her have half the bed. so the second the bed moved and squeeked from me getting up she was up. UGH

everything else was rather typical, nap at 10:30-1:15 but when she woke up she was sstill tired, she only woke because the computer made a really loud beep that would have probably awoken everyone in the house had anyone else been alseep.

we went to walmart before dinner to get a luggage set. it was actualy interesting, i got a 5 peice protege luggege set for $39, it was supose to be $49 but someone put them in the wrong spot and the lable underneath said $39 so thats all we had to pay, woohoo!

the bigger woohoo is val walked all the way from the car to the registers (she walked from the car into the door past the greeter to the register area, not all the way through the store until we got to the registers) it took quite a bit of prompting and prying her off my leg because she wanted "uppa" but she did it. this isnt the first time shes done it, but for her to walk that far is always an accomplishment in my mind because its a struggle for her.

well we proceeded to the toy area after the luggage (its time to start looking at christmas presents) and when we were just about ready to go val decided to turn blue. even oma (my mum) noticed it that time, and she almost never notices things like that. why is it she always does these things at the most inconveniant times when i cant get her on the pulse ox or i cant recored it UGH!

but then she surprised me by eating a WHOLE hot dog 2 small bites of a turkey brat 2 bites of bread and a taste of oma's sauerkraut!

well, that was the day. dont know why i decided to blog about something so mundane but whatever, at least im doing something semi-productive lol.

well, as long as im here and talking about the crazy blue girl. val had her first visit with the new pulmonologist on the 18th. all in all, it went well. they arent doing anything right now, but they are going to get her sleep study reports and look them over and follow up with her in march (unless something comes up between then and now). as i said they didnt do anything but they didnt dismiss me either. they actually listened to what i had to say and i think they may be helpful once we get things figured out.

she also recently saw endocrinology, gastroenterology, the pain clinic, and surgery (to get her tube changed). she is scedualed to see allery/asthma/immunology on the 1st (as per her GI because apparently he doesnt think she can be allergic/intollerant to milk/soy), genetics on the 5th (amazing because apparently they are booked out to next year already, we could have gotten the 29th but i couldnt work that), and neurology on the 20th. i will update with those later because this is already quite long.

long day

2009-09-25T21:57:00.003-04:00

are you SURE theres only 24 hours in a day? today just seems like it wouldnt end. typically this would be a wonderful thing because i NEVER seems to have enough time to do what i need to, but today just plain sucked!

first val woke up in a VERY foul mood, she wasnt feeling well and i could not figure out why. she layed on my bed for about an hour and a half watching playhouse disney, just completly in a trance. then we ate breakfast. she had about 1/8th of a peice of bread (the only thing she seems to ask for lately) and chewed on a peice of my steak (i had steak and eggs with left over steak from 2 nights ago) for about half a minute then was done and all ready to go to bed.

we layed down but she could not seem to get comfortable. she finally fell into a nice sleep around 11 but woke back up by 12:15 crying in pain again. then as if i needed something else to add to the stress of the day my phone fell under my recliner and the screen cracked. now i have to pay $50 to replace it and its being replaced with an older model and not even the same colour (i have a nice purple phone and im getting a plain grey phone bleh). we drove out to the nearest verison store (about 10 minutes away) just to be told they cant do anything because they havnt switched over yet.

we were originally alltel costomers, but in virginia alltel merged with verison in june. well they dont merge up here until the middle of october so weve been in limbo with that. so we had to drive an hour away to go to a store thats already converted only to be told to call a number and they will send me a new phone because they dont do it in the store anymore. UGH!

all this time val still has a horrible attitude and shes in quite a bit of pain even though shes on tylenol and motrin. and just to top things off i have had to deal with our obnoxious upstairs neighbor twice today. ive known this woman since i was little and shes just as obnoxious now as she was then. she thinks she knows everything, she thinks she knows whats best for everyone, and its become quite apparent she thinks she has a medical degree. she does not beleive there is ANYTHING wrong with val because she has seen her play in the house (a very VERY controlled environment where she has 7 places to sit/lay in the living room not to mention her bed or chairs in the bedroom).

UGH thank goodness its 9 and its bedtime. vals been asleep since 7:30 although shes still having significant pain issues, i doubt im getting much sleep tonight.

early intervention update

2009-09-24T22:38:00.003-04:00

ok ok, i know i havnt updated in forever. but then again i know almost no one reads this and ive been busy, so unfortunantly its not on the top of my to do list. a LOT has been going on so i think i will update in several parts to make it easier. i just hope i can remember to keep updating again.

early intervention here has been WONDERFUL for val. shes still doing her speech therapy once per week and is doing AMAZING! she is making huge progress and i couldnt be happier, we are actualy discussing dropping her down to every other week or once a month even! she is now imitating sounds and words, she has probably about 25-30 words she uses spontaniously, she is finally putting words together, and best of all she can now say "i la u mommy" which in val-speak is i love you mommy. i wasnt sure i would ever hear that from her (i know a little pessamistic since shes still little but it seemed like every time we got close to her saying it she would regress again and just get further away). i honestly think she is almost caught up to the lower end of normal for her age!

she is also now getting physical therapy. she is only getting it once per month because we all agreed its best not to push her too hard. the therapist wanted to come out 1-2 times per week originally but after i explained how easily she gets exausted (and after she saw it first hand from just walking around with her for a couple minutes) she agreed. she still cant run and she still cant keep up with most kids her age but she is now jumping a little and actualy getting her feet about a half inch off the floor. this is thanks to a little ballet bar i got her for $5. an amazing investment i would have paid $50 for if i had to.

she is also starting occupational therapy next month. apparently her little quirks have a deffinant possibility of having a sensory componant to them and the therapist thinks she will be able to help. if the lady can work the miricals she claims she can i will be overjoyed, but if she can even help get val to be able to help dress/undress herself without so much difficulty i will be happy.

we also have a "special education teacher" coming out on tuesday to do an eval and just see where val is at in all the areas she is not getting therapy for. no idea how that one will turn out.

well thats pretty much it for early intervention. so i will leave you with this peice of information, every time i write/spell the word difficulty i instantly play the movie "matilda" in my head where they are in the classroom and ms. trunchbul asks the little girl is she can spell difficulty and the little rhyme, mrs d, mrs i, mrs ffi, mrs c, mrs u, mrs lty........."why are all these women married!" ha yeah, hows that for crazy!

Early intervention

2009-07-22T12:07:00.003-04:00

Val had her appointment with her new early intervention coordinator last week. All in all it went rather well. It took 2 hours and by the end val was exausted. Once we get a presciption from the old pediatrician for services Val will start with speech therapy once per week for 45 minutes per session. Then we will try to get her a physical therapy evaluation. The coordinator seemed very kind and like she really wanted to help any way she could. She didnt like that vals gross motor development hasnt advanced at all in over 6 months. she still cant jump, her "run" is still just a quick waddle, she is still very unsteady on her feet, her balance is pretty poor, she still cant navagate stairs well, she has periods of time where she can barely hold her head up, she still gets tired much quicker and much more dramatically then she should, theres a lot going on. Then after that is all squared away the coordinator wants to see about getting an occupational therapy evaluation for her. Apparently a lot of vals little quirks, that i never really thought much of, are not normal. The fact that she spins a lot, that she bangs herself against stuff, she doesnt seem to feel external pain, she walks on her toes a lot, etc etc, is not normal. The coordinator thinks it may point to a sensory processing disorder where she is under responcive to external stimuli, thus she is doing all these things to get the level of stimulation all kids need, that most get from normal every day stuff. She also gave me a lot of information on other services we may be able to get for val.

Other then that things are going very well. We are having a few mild problems with her tube and she isnt doing so great health wise, but nothing uncontrollable. I think she may have yet another aspiration pnemonia but im going to wait to see how it plays itself out just incase its a cold. We have decided to change her health insurance from Tricare Prime (which has no deductable or co-pay) to Tricare Standard (which has a $100 deductable and 15% co-pays, but we can see any doctor we want) so we can take her to a doctor closer to home. Hopefully we can do that soon.

The county fair is here right now. We went last night and val got to see cows, horses, pigs, sheep, chickens, and bunnies. She loved it. We will be taking her back on friday to see more.

move update

2009-07-13T13:11:00.004-04:00

well well well, been darn near a month since i last updated. things have been crazy and crazy typically equals busy. where to start where to start...

well first off the move went wonderfully. we left monday (june 15th) at about 7pm, after getting to the bank and fed ex (we didnt have enough room in the car) and then having dinner. we stopped that night at about 1030 after a lot of screaming from the backseat because a certain little girl wanted to lay down and refused to fall asleep in her car seat. tuesday was interesting. we stopped a few places and let val have fun. slept that night in indiana. then made it to wisconsin on wendsday at around noon. got everything done only to find out my very "brilliant" brother decided to shove EVERYTHING in my room. and i mean everything, moving, matresses, bed frames, dressers, the majority of it was not mine. then we had to go out to get a whole bunch of stuff from walmart. lamps, pillows (we didnt have enough room in the car for our old ones), a shelf unit to store vals medical stuff, etc, etc.

weve been here for just about 4 weeks now and things are finally starting to come together. i still have a lot of organizing to do, but my room is starting to look like a room instead of a storage closet now. we still need living room furnature but even that is starting to look more cosy. i will deffinantly post pictures of the new place (at least my/vals room) once its completly organized.

all of vals stuff is getting set up too. we have an appointment with early intervention on wendsday to get that squared away. i filled out the paperwork to see if she qualifies for ssi on friday. i have the paperwork to switch her doctors but im trying to wait to see if she can get on medicaid first, otherwise we have to go out to milwaukee (about a half hour drive) every time she has to go to the doctor. weve already gotten aquainted with the local emergency room, val went and got pnemonia and since she doesnt have a pedi yet i had to take her there, thank goodness it was in the middle of the day in a small town so they werent busy (we were in the waiting room for all of about 2 minutes).

i also called the geneticist and neurologist to see if anything had come back on her last round of testing. the nurologist has yet to call me back but the geneticist has. the doctor who less then a year ago was adament that val did not/could not have a mitochondrial disorder now beleives very much that she does in fact have a mitochindrial disorder. i dont know exactly what it was that did it but something in her blood work must have screamed MITO at the doc because they are going to do as much as they possibly can with the skin sample they took. now im just waiting on the neurologist to tell me what her muscle said and either confirm or deny what the geneticist said. i can not tell you how terrified i am about this.

thats all i can think to say right now. ill be back with more later. things are starting to settle down and settle in so i should be able to update more regualrly again.

Like Father, Like Daughter

2009-06-14T07:16:00.003-04:00

Well isnt this a crazy turn of events. The chromosomal dupication that val has is apparently from her father! All this time i was assuming it was from me, that this was happening to her because of me.

I picked up vals records yesterday from the post office. I have no idea why the navy saw fit to spend $10.60 to send a set of medical records that i could have easily picked up from the office had they called me, but whatever. I hate how i only learn things AFTER i get the records. Her doctors never tell me this stuff. It drives me crazy, but again, whatever.

Well i learned a lot of new stuff, like they have her labled as "congenital hypothyroid" (which is not true), and she has the diagnosis of "hypotonicity" (which i had known but i didnt know she actualy had the diagnosis). But the kicker of it all so far, is her report from genetics. Aparently vals daddy has the exact same duplication as she does. Also, apparently the geneticist beleives now, that we most likely ARE looking at a mitochondrial disorder. This is very bad news, but at the same time very good news. Mito is NOT in a million years the diagnosis i was wanting, but its a diagnosis. While is doesnt have a cure, or even a deffinant treatment, its still managable. As long as we know what it is and what to do for it, we can help her. We can get her the doctors and medications and everything she needs. This is a huge deal, if you ask me, coming from a doctor who last october was SURE it was NOT mito.

This is all slightly terrifying, but very optomistic at the same time.

one year

2009-06-12T21:09:00.003-04:00

One year ago today val had her first ng tube placed. Through out the day i have found myself drifting back to that day, sometimes i think it can't be a year already it's gone too fast. Other times i think really, it's only been a year, how the heck can time move so slowly?

So a year ago, around 4 or 5 i think, vals gi doctor calls up my cell. He tell me the tests he had us repeat were the same as what they were the day before and he thought it was in vals best intrest to get her admitted to the hospital asap. He told us to go strait to the er, he would call over there and be sure we get seen right away so they can at least start an IV. I will never forget that day. Its the day our lives changed.

In some ways the change was the best change i could have ever asked for. Now val is doing wonderfully. Her oral intake has improved probably 10 fold. Now that i ddont have to force her to eat anymore she actualy is willing and eager to eat. Her energy level, while still sitting comfortably in the toilet, is better then it was before. Shes all around a much happier child.

However with any discision like that you have the flipside. We went in with the doctors adament she wouldnt go home with the tube, it was just to get her over her bump. Well here we sit a year later with not an ng tube but a HOLE in my baby girls stomach for her G tube. She will never be the same again. That was the start of the "special needs" road for us. Since then she has added 7 new medications, stopped one, and trialed at least 3. She has added at least 7 new specialists and had countless more tests. Shes added, i dont even want to think of how many, new diagnosis. I dont even want to think about it.

This is a very sad day for me. At the same time though, its a very happy day, because when i think of how far weve come in one short year, its amazing.

Thanks for letting me whine :)

Moving!

2009-06-05T13:52:00.003-04:00

We are moving to Wisconsin in 10 days!!! I can't beleive this! Everything is falling into place so nicely. It's actually starting to make me a bit nervous. Most of our stuff is already up there in a storage unit waiting for us. We already have an appartment (my mum, my little brother, val, and i are all sharing a 2 bedroom for now, but once trevor and i can get a loan we am getting our own house). We have livingroom furnature, since we had to leave ours behind here because there wasnt enough room in the truck and they arent the best anyway. We have a refrigerator, the appartment doesnt come with one but the landlord's girlfriend was getting a new one so we were offered the old one. My little brother is going to go back to highschool (he decided to drop out last year) and is getting that arranged. Val's early intervention stuff is being transfered up there. We are having a yard sale on thursday and saterday, to sell the last few things and maybe make a little money so we can have fun on the way up there.

The ONLY thing thats left to sort through is vals insurance stuff and i have to wait until the 8th to do that, and vals g-tube stuff, her appointment for that is on the 9th. Her doctors do not yet know we are moving, and i dont think some of them will be too happy about it (thats why i've waited to tell them, to save me the drama and frusteration) but i really dont care, im doing this for val more then i am for me, although i am so happy to be going. We will know on tuesday if val will be stuck with the long tube until we get up there or if she will have a button placed before we go. She has her preschool eligability meeting on wednsday (they told me its better to get this done before we move so thats what im doing) to find out what her strengths and weaknesses are and learn if she would be eligable for preschool here. She has her 2 year check up on monday where i will figure out what to do to switch the insurance and where the closest in network doctor would be.

With everything else falling into place so nicely i am getting so worried that something is going to go screwy with these last few steps that need to be taken. ACH i need to calm down and BREATH!

pictures

2009-06-03T21:55:00.004-04:00

OK so im in a really crummy mood today. I dont feel well, Vals still not doing to well, all around life is sucky right now!

So to prevent me from ranting and whining and throwing up all over my laptop im going to post a whole bunch of pictures!

and these are from kiddie kandids.

hope you enjoyed them, now im off to bed to see if i can try to shake this nausea!

After Effects

2009-05-31T20:46:00.004-04:00

Well things arent looking good again. I dont know what it is with this kid but she seems to like toying with me. We had a really nice few weeks. Now she seems to be in a downward spiral again. She is eating practically nothing, her liquid intake is dropping, and her energy level is in the toilet. Shes been so tired that instead of going to bed (nap) at 10, shes been asking to go upstairs (to sleep) at 830 or 9. so i have to try to get her to eat whatever little bit i can then take her upstairs. Then shes been sleeping until 12 or 1. After she wakes up i get to shove as much food in her as i can and shes asking to go upstairs be 2 again. Then she will sleep (or rest, which for her means she falls asleep for a few minutes then wakes up then falls asleep then wakes up etc etc etc) until about 4 or 5. Dinner time, and then shes wanting to go to sleep again! Shes been averaging 30 minutes to an hour of active/energetic time per DAY.

I can not wait until we can get back some of these tests shes had done and see if we can find a way to help her. I hate to see her like this and i have no clue what to do at this point but let her sleep and tube the calories she cant take in.

Shes also gotten even more clingy then usual lately. I think part of it is because shes so tired and part of it is because shes having problems with her muscle tone but she wants me to carry her everywhere. I cant even go answeer the door without carrying her with me when she use to go to the door by hersself and try to open it for me.

I think im about done as my mind keeps wandering trying to go to sleep. However, i want to add if this is a mitochondrial disorder i really hope we can find a doctor who will take it seriously and we can find a cure for it soon, for all the kids living with this terrible disease. If its not i just hope we can figure oiut what it is and that it at least has a treatment if not a cure. If we cant put a name to this i think i may lose whats left of my mind, i just hope someone is willing to help us, at the new hospital when we move, no matter what it is. I cant let my precious baby girl live like this any longer.

Val's officially a PRESCHOOLER

2009-05-29T21:24:00.004-04:00

HAPPY 2nd BIRTHDAY to my sweet sweet girl. Yesterday Valkyrie turned 2! I cant beleive its gone so fast, yet at some times it seems to drag on and on. In one year she wont qualify for early intervention anymore and in 3 short years she will be in kindergarten. Yesterday we got vals pictures taken at olan mills (she got a free portrait package for her birthday) and i ended up spending $80 on pictures! but that was so i could get the picture cd (which without buying a $100 package would have run $150) thankfully though we had a 20% off thing for her birthday as well so it was only $80. This way i dont have to worry about getting them to her daddy in iraq, i can just upload them and email them to him.

She also went to walmart and got to pick out an extra special birthday present! she ended up picking a neopets elephant, she saw it and instantly started screaming EL (its so adorable the way she says it cause she cant quite get her tounge to move the right way). So she got that for $6 and some flowers (she been obsessed with flowers lately) for $5. what can i say i have a cheap kid. i even gave her a $50 spending limit (not that she knows what that means anyway). Now most would probably criticize me for that, saying that is too much to give a 2 year old (and beleive me plenty of people at walmart did) but when you think of all she has gone through this last year, getting the ng tube, dealing with that for 10.5 months, getting the gtube, getting a half dozen new meds, 4 seperate hospital admissions, the pain she deals with on a daily basis. i think she deserves $50 and so much more.

We sent all of her other presents (2 water/tubie babies, a little tiny doll, an i-fish, and a few other things) up to wisconsin because we are having her birthday party up there.

so while we didnt do anything big, we still had a really great day!

i will post pictures soon, i have to upload them, and i still have to wait for the professional ones (we pick them up june 15th, the same day we leave for wisconsin)

HOLY COW!!

2009-05-25T10:45:00.003-04:00

I just realized...its memorial day, 2 years ago on memorial day at 6:40 in the morning my baby girl came into my life and nothing has ever been the same! I love my baby girl with all my heart, she is everything to me. I will have a real birthday thing on her birthday (thursday) but holy cow!!

Craigslist

2009-05-25T10:39:00.003-04:00

Can i just say how much i LOVE craigslist!!! Seriously, ive made close to $150 in the last week or so just selling vals old things that we cant take when we move. Not to mention the money ive gotten for my mum by selling a couple of her things she asked me to and the money im getting from people when they come to pick up more things (i have at least 4 things being picked up between today and tomarrow)!! I love craigslist, this is going to be great because now i have a little extra cash to do something with val for her birthday instead of having all our money go for the move! Dont know what we are doing yet, but its going to be something fun!

Tube Frusteration

2009-05-23T10:11:00.003-04:00

Im getting really frusterated with this. Val has OBVIOUS medical issues that are hindering her ability to eat. This is a kid who LOVES to eat but the act of eating makes her so tired that she goes through phases where she doesnt want to eat. She falls asleep while eating and if she dosnt she is laying down asking to go upstairs to sleep right after she is done. After dinner at 6 i typically have keep her moving and engaged or she will fall asleep. Not to mention the fact that she aspirates everything! Her swallow study may have only showed it on thin liguids but i KNOW its more then that and so does her pulmonologist, he actually wants to make her strictly NPO (no food or drink by mouth) but id really rather avoid that as long as we safely can. She has NO behavioural problems in reguards to her lack of eating. No oral aversion, in fact this kid still, at 2 years old. sticks everything in her mouth.

It took her losing 4 pounds in the matter of ONE month without a gasto-bug to get anyone to realize she was having trouble. So they placed her ng tube. We kept that thing for 10 1/2 freaking months! During that time she gained back the 4 pounds plus 2 extra (she was on a really high cal diet to gain that back quick) then when she went back to a normal caloric intake she gained 1 more pounds in about 4 months, now she is mostly taking everything orally (with a little help from the tube) but shes not gaining anything, shes about 28 pounds right now and 36 inches tall. I know that may seem like a lot, especially for a 2 year old but you have to think that she is the height of a typical 3 year old (shes a really tall girl). Every time we go to the gi she either hasnt gained anything or shes gained 1-2 oz thats it. Yet there we sat with an ng tube. Her doctor was convinced it was all behavioural since he couldnt find a gastro-intestinal problem. He had us go to 2 different feeding therapists neither helped any. He had us go to a feeding rehab clinic where they try to get kids to eat orally. That did nothing but frusterate us all. They wanted her to try inpatiant feeding therapy in a hospital full of sick kids. That was the only way the GI would consider the g-tube. Even after he had admitted to me that we should not have let the ng tube stay in that long. I had to go "behind his back" and talk to the pediatrician to get a surgery consult, then we went to the surgeon "behind his back" and did more testing and got a g-tube for val. All of this when they could have gotten off their peditul 9 or 10 months ago and admitted they had no idea what was going on and she did indeed need the tube longer term and gotten her the g-tube.

Now the thing thats frusterating me is i keep seeing all these people who have kids with NO medical problems, other then maybe reflux or something. They are talking about getting tubes for their kids like its the next big thing. These are kids that would probably do very well in intensive inpatiant feeding programs. Kids that all they have to do is show them that eating can be fun and they would be just fine. Why did val have to suffer so long with the ng tube and so long trying to eat when she was too tired when all these other kids doctors just throw a tube in them and call it a day? Now dont get me wrong, im kind of glad we waited as long as we did because it makes me feel better that we at least tried as hard as we could to not have to have the g-tube. But it really makes me wonder if these other doctors are doing these kids a diservice, or worse if their parents are pushing for the tubes when there are other much better options? I wouldnt want to put val through the pain of either kind of tube if there was any way to have avoided it, so why are some of these other parents to willing to put their kid through that?

Another things that bugs me about this is when these parents ask for others opinions on the subject they get offened if someone doesnt agree with them 100%. If someone suggests maybe trying to get them into more intensive therapy or in with a different doctor who will try harder to look for the underlying problem they get upset. These parents actualy whine that people are being mean or making them feel like bad parents just because they are thinking of other things that could be done before resorting to a feeding tube. It makes me think that they are being overdefencive because they KNOW its the wrong choice, because they KNOW there are other things they could try first.

Im just so annoyed by this. Really there has been a lot of this going on lately. People making things out to be much worse then they are. People insisting they need something for their kid that is so beyond what their kid requires, not in a good way. People complaining about normal parts of child development, that their kid hasnt mastered a skill that they really arent supose to have mastered by that age. Complaining about everything! It gets so frusterating!

Ok im going to end this now, i could go on all day about this because its so annoying to me, but i wont. I think this is officially too long already lol.

Normal is Relative

2009-05-21T11:04:00.001-04:00

My name is Alicia. My daughter Valkyrie has very special, complex, medical needs. She has a chromasomal duplication on her 8th chromasome that as far as any of her doctors can tell is completly unique, she is the only one in the world with this specific duplication (the bloodwork to see if my husband or i have it is still being done). She also has a possible mitochondrial disorder or some other undiagnosed neurological/neuro-muscular disorder. This causes a lot of problems in her tiny body. She has terrible gastro-esophageal reflux disease, ketotic hypoglycemia, rare secondary hypothyroidism, hypotonia, failure to thrive, exessive fatuige, chronic diarreah, chronic intractable pain, hypermetropia, speech delay, developmental delays, poor balance, possible seizures, mild central apnea, moderate obstructive hypopnea, asperation on thin liquids but getting worse, multiple regressions, sevear allergies to foods enviomental triggers medicines adhesives lotions etc, and much much more. She is currently doing rather well on 9 different medications and dependant on a gastrostomy tube. However that can ghange at a moments notice as we have seen all to often.

This is my new normal (hence the title "normal is reletive"). There is nothing we can do to stop her body from going haywire, there is no magic cure. There is no chance at changing her dna and if she does end up having mitochondrial disease there is nothing we can do to stop that either. I fear one day all this (or one of the many complications from all this) will take my baby girl from me, but i cant think that way. When faced with something like this you must hold your head up high and make the most of every minute of every day. I fear for when she gets so tired she can not hold her body up, yet i must let her be a child and as normal as possible. I can not treat her any differently then any typical child. She is my baby and she is perfect to me!

I have a website soley for her and updates on her. This however will be for me. This will be to give me a place to vent, to let off steam when im overwelmed by it all. This will also be for updates i do not feel should be posted on her caringbridge page. This will be my catch all.

Thank you for reading and i hope to see you again!