A bit more revealed

Nothing too major. Got Graydon's referral, now we just need an appointment. Did find out why he was rushed to Childrens hospital...his white count was up and there was something else noted that could have meant his colin was dying due to lack of oxygen. I guess they had ruled it out once they examined him at CH. They may have done another blood test before I got there. So anyway, we are on the right track to getting him normal.

Hes been a very happy guy this week. He's definately feeling better. Hes laughing like he used too and chasing sister.

In other news the quarters is almost done and so far so good. 10 credits down and 80 more too go!

My mom has been very sick. She says she getting better but she doesnt sound better. I guess they did xrays on her yesterday. My grandmother broke her hip 3 weeks ago. Shes also not doing well, it seems she may have given up out of being old and lacking the effort to try to walk again.

An update on G

I mentioned in a previous post about his diet and the problems. Well I don't remember how much I mentioned. He has been constipated most of his life. We first noticed a problem within a few weeks. They told us it was normal with the iron in formula. Told to give him more water. We took him in at about 4 months to discuss the issues. We were told to introduce cereal, oatmeal and fruits to try and give him variety to his diet. This didn't help as he would gag on the food.

Over the last year and a half we have brought him in for the constipation a half dozen times to have a discussion. We always had to see other doctors on call. They would say give him beans, prunes, juice and other things. Sadly the child is picky and likes what he likes. What he doesn't ends up on the floor.

In the last month things have gotten worse. He started getting a bad rash from constant "skid marks". I took him in to a doctor on call to get an opinion. She told me to use vasoline for his bum and to get his diet changed (again with the diet). If that meant holding him down to force a syringe of prune juice down his throat several times a day that is what we should do. We did try this a few times. It was bad enough we had to hold him down to clean his sore bum and the juice only seemed to choke him and make the rash worse. The next week he started random vomiting. He threw up once a day 5 days out of the week for a week. That Saturday I took him to the urgent care clinic where I finally saw someone that agreed there is more to his issue than constipation. She suggested a special pediatric GI specialist and mentioned it could even be Crohns Disease. I called his doctor that monday and she prescribed mirilax by phone. Said to give him a half cap a day and to come in a week and a half later. We did this. He still hadn't gone in 5 days when he kept having cramping that would double him over in pain and scream blood curdling screams.

He woke up screaming this morning early in pain. After not being able to calm him down we decided to take him to the ER for suggestions. This always happy baby has never screamed like this before. Once we got to the ER he had calmed a bit but continued to freak out once an hour. They took blood started an IV and sent him for xrays. We spent 2 and a half hours waiting for the results. The ER doctor came in to tell us he never seen a child as backed up as our little G. He said he wanted to have someone at Childrens take a look and he was making some calls. He said he wasn't sure what to do for him. A few minutes later he came told us that he arranged an ambulance to take him to CHS. We were utterly shocked and scared. Daddy went with him while I picked up bro and sissy to take them with us.

When we got there they hooked him up, took vitals and looked at his xrays and blood tests. They came and had us repeat his life story of hypotonia and suggested this was more than just a kid with constipation. The doctor at CHS said his xray was the most "impressive" (odd word choice) of a constipated child he'd ever seen. He was so backed up that an enima was dangerous. It would likely do more damage than good because his intestines are so stretched out. It will essentually be like giving birth once this stuff comes out. He is underweight as it is. They said the other alernative is a tube by mouth to get it soft from the other end. They want to wait a few days first and have us up the dose of the mirilax. We were told by both ER's that this is way overdue and he should have been on the laxitive from the beginning. They also suggested another underlying issue that hasn't been discovered. Something that is causing everything since birth. This is something Brandon and I have thought all along. Of course we are just parents with no medical degrees so what to we know?? But it is finally good news to have someone agree with us and point us in a direction. He will be referred to a special nuro department at CHS that will help find what the problem is. SO they can help prevent things in the future from becoming so bad before we get help with it. So now we are home and hes taking extra doses and hopefully it will all come out in the end...pun intended. Then we can get his intestines and digestive system working the way its supposed too. For now that is the story. Hopefully we will get some good news soon.

More to come...

The story of Graydon...

I posted a couple times about our little G and his medical issues. I know there are many other children out there with far worse things wrong with them. We are lucky to have a mostly healthy tot.

Anyhow hes always had minor issues. When he was first born he didn't want to suck. We ended up staying an extra day in the hospital to make sure he had learned to suck the bottle. He did catch on but it wasn't usual. Especially since my daughter was born with hickeys on her arms she gave herself in the womb. This was just the beginning of his problems. At 2 months old I noticed his head was flat. I brought it up at his 2 mos appointment and it was agreed to follow up...it didn't get better and he was put in a helmet for plagiocephaly at 6 mos old. He started physical therapy at 4 months. He had issues at 6 mos gagging on baby food and swallowing solids. An upper GI showed no issue. They attributed it to his low muscle tone or hypotonia and delayed milestones. He was also a late crawler not crawling till he was a year old. He didn't pull himself up till 16 mos and didn't walk till 18 mos after being fitted for orthotics for his ankles that he currently wears. His ankle bone moves to the back of his foot and these are supposed to correct it in time. He is now getting around pretty well walking and almost running. He still doesn't say a lot of words and depsite a previous post is now going to have to start speech therapy. Otherwise hes a perfect, mellow little guy who has rarely been fussy his whole life. He may have phsyical delays but mentally hes as sharp and normal as anyone. He can also play the drums like a pro! I mean real drums too.

It took some time to realize that his issues have to all be related. Now we are on a quest to find out the cause. This will be noted in another update.

Wow...tons of time has past

Since I last blogged. Lots has happened. I an currently running on little sleep.

My boss passed away the day after my birthday this year. It was crushing to me because I have worked for him for over 5 years and I am so sad about it. I haven't really let myself mourn. I just keep busy. I worry what I will do when it will do when it is my own parent. Things have changed a lot with the company and I know change can be good but I am worried that they haven't communicated with the people that have been there for so long to understand things. A little mushroom syndrome.

I did get a cut in hours which isn't so bad in the end because I am taking classes. I hate to say I feel that the company wont survive in its current state. I hope it does, its all we've known. I am little sad that the others are now gone.

There is a lot more but I need to sign off. Seems I never have much time for blogging or otherwise.

Helping the needy in our own backyard (AK)!

My BFF that I have known for more than 20 years needs some help, not just her but her entire village is struggling. They are without supplies, food and with no store close by to buy provisions. It is all explained below in her words. I am posting a letter she is sending out to ask for help for needy families in her village. Hope this explains the situation that is going on. Feel free to ask me any questions or email her directly. Anything would be of help to them. Thank you a lot for taking the time to read this!

_____________________________________________________

Hi everyone,

It’s not just Emmonak that is struggling it’s the entire Yukon Delta. I live in Nunam Iqua, a village that is 25 miles south of Emmonak. Not only are we faced with the same issues as Emmonak but also our crisis is harder because we no longer have a store here. Our trading post collapsed several months ago, so we have no place here to get groceries.

So not only are we struggling between choosing heating fuel or food but also we have to spend even MORE MONEY to buy gas to travel upriver to Emmonak or Alakanuk to even get food. Which is very expensive when you have pay $7.20 a gallon for gas. It takes at least 6 gallons of gas just to travel by snowmachine to Emmonak or Alakanuk to even get groceries. So that takes that much more money away from what we have to spend on heating fuel and food.

We try to reduce our heating fuel costs by using our wood stove but then are we really saving money? because we still have to spend money on gas to go and get wood for our wood stove.

Everyone, especially Governor Palin, needs to realize that it’s not just Emmonak residents that are suffering! We need help in all of the YK Delta villages!

OK, I complied a list of everyone here in Nunam Iqua. I spoke to all but one household here and Have a list of what is needed. I got permission for my Youth Center to receive/distribute any donations that come in. So they can be mailed to:

Ann Strongheart
Nunam Iqua Program for Youth
c/o City of Nunam Iqua
101 Mudd Street
P.O. Box 26
Nunam Iqua, AK 99666

OR if you would like to send boxes directly to needy families I have a list of families including their family size and needs and their PO Box #’s you can email me at nunamiquayouth@yahoo.com if you would like a copy.

Here is a list of things that are desperately needed, since we have no store here in Nunam Iqua we are really struggling to get food and groceries here.

Here’s the list:

Diapers Sizes 1, 3, & 6
Similac Advanced Formula Powder
Canned Evaporated Milk
Dry Powdered Milk
Powdered Eggs
Crackers ( Sailor Boy Pilot Bread unsalted tops are the most used here)
Rice (minute rice)
Noodles
Peanut Butter
Honey
Jam
Juice
TOILET PAPPER (everyone is running out)
Flour
Sugar
Coffee
Cereal
Crisco
Coffee Creamer
Pancake Mix
Tea
Canned Vegetables
Dried Fruit
Instant Soups
Ramen Noodles
Cup a noodles

Just basic pantry staples. Even salt, pepper, etc.

OOH I just realized I forgot to put baby cereal and baby food on the list.

I would give you all some more information on the YK Delta.

It now costs $650 to fly from Emmonak to Anchorage round trip. For us to get to Emmonak from Nunam Iqua is an additional $150 so that’s $800 from Nunam to Anchorage and back.

Here in Nunam Iqua there are many families, myself included, who live in what could be described as shacks. Our house is 20′ x 30′ and is constructed out of plywood. It was built back in the 60’s and is very drafty and leaky LOL we use my 18 month old’s leftover diapers that are too small to catch the leaks when it’s raining or warms up. But we don’t have a choice, this is the only housing available, we rent it. It’s a choice between here or living with family and we would much rather have our own place, even tho it needs serious help.

Here in Nunam Iqua, we have no running water or sewer. They are currently building our water/sewer project and we hope to have running water/sewer this year or next. We are a honey bucket community, meaning we have 5 gallon buckets in our bathrooms with toilet seats on them.

Additionally, we have no roads here, no cars. We travel by snowmachine and 4-wheeler during the winter and by boat in the summer. We had a store here but it collapsed due to the rising energy costs.

We are currently paying $7.20 for a gallon of gas and $7.35 for a gallon of stove oil. The majority of homes here use stove oil for heat. Some of us have wood stoves to help keep the costs down.

We do have regular postal service here, depending on the ability of planes to make it in. The only way for supplies to arrive here is by plane or during the summer by barge. The majority of us live a subsistence lifestyle. Our major meat sources come from Fishing and Hunting. We also pick berries and wild greens during the summer/fall. We have nets under the ice on the river but the fish seem to be very slow coming this winter.

Oh yeah, Nunam Iqua is a village of about 200 people, located on the southern mouth of the Yukon. We got a brand new school this past summer so now our kids don’t have to brave the elements to make it to their classrooms and the gym to eat.

We currently have a City Office, a Tribal Office, the School, the Clinic, Laundrymat, Powerplant, Youth Center and Post Office available in Nunam.

I know this is going to sound funny but I am very grateful that it got cold again today. We had 36 degrees last night and were worried that it might start to affect the ice on the river and make it unsafe to travel but now we are back down to 9 degrees so no more worrying about the river.

The pike should start running soon so we will be able to take a 60 mile day trip by snowmachine to go catch pike and dry them assuming we can afford gas.

Ummm I don’t know what else to tell y’all but I thought I would give you an idea of what it’s like here in Nunam Iqua. We did have a very early freeze up this year and the last barge didn’t make it in. We are having temperatures ranging from
-25 degrees below zero to 30 above. Normally, we are consistently below zero this time of year.

Hope that gives y’all some information and answers some questions you might have about the YK Delta.

Thank you in advance for any help you can provide. We greatly appreciate it. Our weather is getting weird here, it got really hot here last night up to 36 degrees, if it keeps up we will be unable to travel upriver by snowmachine to get food, b/c the river will be unsafe to travel on.

Again if you have any questions or what more information please feel free to contact me at nunamiquayouth@yahoo.com

I know there have been references to scams so please feel free to look us up online. Nunam Iqua Program for Youth. I was featured on NAC, Native America Calling last year addressing underage drinking in the Bush. And we are listed with the State of AK as one of their grantees. So you can verify the mailing address and email address I provided.

Sincerely grateful,

Ann

Little drummer boy

He decorated himself.