a little can mean a lot

Hi everyone. WOW have things been crazy around here with Halayna. We want to thank all of you for your prayers and support through this journey.

we are in the midst of a fund raiser , there are a few needs we have

Now that Halayna is on IV infusion our fridg is taken over with IV bags. We would like to get a dorm sized frig for this purpose. A place to put all her IV bags and still leave room for our food in the kitchen

Halayna has a g tube and a port. her port is accessed all the time which mean there is a needle it every day of the week. With the g tube she is only allowed to swim in a pool or salt water. Well i have neither one here. Now with the port now swimming when accessed at all, UNLESS...we get a dray suit. A dry suit keeps the water out and allows her to go swimming and be a normal kid taking part in normal kid activities.

We need a monitor we prefer a video baby monitor but we are perfectly happy with a normal room to room baby monitor. Halaynas room is at one end of the house ours is at the other. if her IV pump alarm goes off we wont hear it. We also cant hear her in the night either so if she were to call for us we would not know.

We still need to raise money for service dog training as well. A dog to aid and assist Halayna and also be eyes when we are not right there.

Then there is the normal issues, eventually we need a new car to help make transporting her wheel chair a bit easier and we ll we have a lot of miles on our current car and before it gets to tired and starts nickel and diming us we feel we really need to start exploring some options as well.

I have a link to a fund rasier site and will also place a chip in button on here her blog. If you could please help even if it is a dollar. Any amount is great. And also spread the links to others, Share the blog the fund raising site.

Many have never heard of mitochondrial disease and I would love to teach them about. To bring awarness and understanding to a disease that is now killing more kids then childhood cancers.

here is the online link option as well http://fnd.us/c/6JTG9

long over due update

opps

well it has been a long time from the last up date. things are moving quickly and every day is busy. I lost time to keep everything every where up to date so here we go hold on as i try to remember it all as beat as i can

As my last post stated the antibiotics did not work. She ended up spiking a very high fever which could not be brought down. She was in and out of it. Her tube was leaking out a lot soaking her shirts. feeds were hard to get in a nd it was time to head to the ER. IV were started and a direct admit to peds was next. Her feeds were stopped as when we re tired it leaked again and caused pain and discomfort. Her GI and ped were there the next day for full evaluation. Her tummy and intestines shut down. No bowl sounds no digestion no nothing. Her tube was also changed and she became NPO (nothing per mouth) and IV fluids only. She was given a broad band antibiotic and reglan to try to get the intestines and tummy moving. There was talk of doing TPN feeds but were quickly ruled out for now. We continued for days this way. Until the reglan had to be pulled off as she developed worsining absence seizures and some twitching. After 5 days and slight bowl sounds feeds were re introduced at a slow slow rate. At first no success and ill feelings swept over her. Feeds were backed off and re tried later. She finally took a rate of 50 and was discharged with us trying to increase her rate and a nurse at home twice a week to help monitor her. On the way home from the discharge she began vomiting but the doctor allowed us to stay home as long as the vomiting did not continue and we had to see him in his office on Monday morning. we were released on a Saturday after more then a week inpatient. She is still only at a rate of 60 a month in a half later. She ended up losing over 6 pounds this round of sickness. Gaining some back but has now stopped gaining but maintaining a constant 49 to 50 pound. this was the beginning of our February.

2 weeks later a fever strikes 104.4 we take her to the ER after hours of trying to bring it down. The do a bolus hydration at way to fast of a rate for her to handle and sent her home at 3 am. Fast forward a few hours and lots of calls to DR and nurse here trying to help us bring a fever down. No luck and back to the ER we go. After 30 plus hours of 104.4 fever with the lowest temp with fever reducer reading 103.8. She became tachycardia, her heart rate was 130 to 170 at times and dehydrated as well. She was admitted with pneumonia and stayed over 4 days on this in patient with a later positive flu result on top of the pneumonia breathing treatments were given every 6 hours and continued at home. At this time of the hospital stay the talk of a port came up.

Here we are March. We went to her GI for a follow up and he agreed she needed a port. On Tuesday her GI called and said her had a pre op appointment for us on Wednesday morning. We went and met the vascular surgeon and surgery was set for 8 days later. She did great cried a bit after recovery but was able to come home the same day. She became sore, tender and a bit stiff but over all well. She had the weekend to recover infusions were set to start monday night at the house. On Sunday everything seemed to catch up and her absence seizures were back in play, her tiredness was obvious. She was not her self at all.

All her supplies for IV infusion came on Monday afternoon and at 7 pm her nurse came to put a needle in her port for access. Halayna cried pretty much out of fear, we did not know how this was yet we had never done it. Her port was still tender from surgery even though we used magic numbing creme before needle entry. But in her true trooper fashion we got the infusion started and i stopped it and flushed it my self this morning . I also ran my own in infusion on my own tonight with success.

Today we headed to upstate to meet back with her neuro and get the EEG results. We did the EEG a few days before surgery . I love love love her neuro he is a mix of confident, funny and o so caring. He did another full exam on her and brought in 2 other doctors to make sure he was seeing things right. She has regressed we knew that we see it we live it. Her gate is now stiffer, her joints more over responsive, her tone more lose, Upon standing she braces and stabilizes herself. There was a lot of time spent in that office and a heart wrenching report. her report states she is declining. it also states that it is progressive . That what mobility we have left needs to be worked with to try to save it. Her report also states that they can not rule out this becoming fatal to her and that the damage may not be reversible let  alone treatable . A bunch of labs were run today and more testing coming up. We will do another MRI and Halayna will be admitted for a few days to be taped to try to catch her absence seizure activity. Her labs were sent to the mayo clinic and will be weeks before we find the results. She will be seen again in nuero in June As he stated you fit her in even if it is on my lunch.

Tomorrow we head to endocrinology for another issue that has started for Halayna and some labs to check levels. I am not going into detail on this issue publicly yet.

we are currently fundraising for info on how to help you can e mail us at momnthekids@gmail.com

convaid wheel chair

Hi everyone I am so behind on her blog things have been so busy.

We are currently fund raising for a convaid wheel chair for Halayna. We can not afford to buy one brand new and know of someone who is willing to part with theres for a slight fee. It is purple which as we all know is Halaynas fav color. It will be shipped to us from Philly just 5 hours away but we have to come up with the money.  So we are trying to raise 300.00. Can you help with this medical need for Halayna? I will post the link of the site for the convaids to give you an idea of the brand new price and style, function and how this will benefit Halayna.
www.convaid.com

As we have done in the past we have created a paypal chip in button for this. All you have to do is click the chip in to donate. Now if you dont want to just give and get nothing back in return, you can stop over and place an order at www.facebook.com/halaynashopecreations I will personally hand make your order and ship it to you. We have a lot of great items to chose from.

long over due updates

these are taken from her caring bridge site. I have been so busy that updating one place is better. Last night was still a rough go and we would appreciate your continued prayers 

FRIDAY, NOVEMBER 4, 2011 7:18 PM, EDT

What a week

Well this has been a whirl wind week, up and down and all around. Busy , emotional and educational. 
Yesterday we switched medical supply companies. Good bye is the old, heavy, malfunctioning pump and hello to the the new quiet self priming joey. Hopeful also a good buy to not getting formula deliveries in time. Now we are on an automatic monthly UPS shippment. Even getting the old company to cancel out was an up hill battle. The new company has been great already, spending over 55 minutes on the phone with our insurance, new pump here in less the 24 hours, and many phone calls from them to let us know where they are at. 
Also in a previous post i shared that mito won again against her endocrine system and insulin would now begin. Wednesday we filled the scripts for her insulin and her needles. Today halyna, g pa Bobby and i attended the class on learning how to inject it. We got to practice on a dummy system and then on Halayna with an empty needle. G pa Bobby poked himself, and halayna poked a dummy. Halayna even learned how to draw the insulin into the needle. So now we are prepared and ready for when it is needed. As a mommy it still makes me sad. To know we never know whats it is going to take next or cause next. Although we all find comfort knowing our God is bigger then the mito monster.
Next up Halaynas going back to OT. Our insurance wouldnt pay for a at home nurse and OT at the same time. So now that the nurse is done we can go back to OT to work on some sensory issues! Hes thrilled this is her faviorite appointment out of all of them. Can't blame her. Theres no poking, no testing just plain fun.
We are also gearing up for her tube change Tuesday. Halayna is very nervous for this. More then the actual g tube placement surgery. Shes nervous cause she was told she wouldnt be put to sleep, just numb in the tummy. She has requested daddy to be at this appointment and he will be. 
So many other non Halayna issues have bombed us this week and it has just been one thing after another after another. So glad its Friday. Heres to praying for an un eventful weekend .

WEDNESDAY, NOVEMBER 9, 2011 5:41 PM, EST

Two day update

Yesterday Halayna had her peg tube removed and a Mickey put in.
What an experience. They came in gave her 4 shots of numbing meds in her tummy. Which she screamed and tried to grab the needles. The doctor said in a stern voice dont touch those. So i grabbed one hand and the nurse grabbed the other. Halayna squeezed our hand so hard.
Then the blood came. a lot of blood. Then i hear the doctor say are you ready your going to feel this. O dear was all i could think. And then he pulled. All i heard was the loudest pop ever as the peg tube came out. Now theres even more blood and he just kept gauze pads at the hole in her tummy. He then messured the hole to get the right size and placed the Mickey. It was still bleeding a lot! He packed gauze around the mickey and taped it to her tummy. In 3 months it gets changed again. But it should be less tramatic as its a Mickey to a Mickey. And i get trained on how to do it cause after the next change i get to do them from home. Yippy!
so to today. Off day. Lots of freezing posturing of tje hands, her dystonia kicking in. Alot of hive just barly controlled by bynadryl. Theres a lot of pain around the tube. We've been roatating motrin and codine all day along with bynadrol. Shes walking huntched over. Shes been saying her back hurts and i am pretty sure the tube change has a little to do with it. Shes very very tired. Look just well pale and drained. Shes staying home with daddy tonight while i take Haylie and Hunter to thier church functions tonight.
Halaynas been through a lot and these past few days have been very very hard on her. But her smile stays on her face and she stays strong. She a tropper . I want to be just like her when i grow up. What an example she is, a life lesson in a 7 year old.

MONDAY, NOVEMBER 14, 2011 5:05 PM, CST

a lesson in mito

Well it has been a tail spin week. On Wednesday Halayna was off, she wasnt herself. It was like she wasnt here. She was quiet, withdrawn, staring off, Her hands kept having frozen  posture. The hives were every where. Her body was so hot to the touch but no fever. She laid low, with mommys watchful eye over her. I was worried, wondering, watching and tracking everything.. I decided to maintain her at home and if no better we would call the doctor in the morning. 

Thursday. no better. More withdrawn, mental confusion, constant posture freezing in the hands. Look as if she was constantly going in and out of absence seizures, blank glares in her eyes. Time to call the doctor, he sent her straight to the ER.

When we got there the triage nurse asked Halayna where she was, she didnt answer at first and then when she did she said she was dino shopping. HMMM.. We were taken right back into a room. The nurses came it to apply her numbing creme so they could draw labs. When they were looking at her vains we noticed 2 hives on her hands. We started looking around at other body parts and just watched all these hives appear all over her body. Her arms, her legs, her belly and face. The nurse said, um yeah theres something going on here. They took soooo much blood, syringes and vials. It showed a UTI and a kidney infection. The counts were very high in the lab work although she showed no symptoms of either infection. Keep in mind she has lost the feeling in her bladder, she barley goes to the bathroom because she cant feel when she needs to go. This may explain while she felt no discomfort while trying to go. She also had no fevers, her body was hot to the touch but no fevers. Her O2 stats were still low and the nurse did a happy dance when we once got them to read 95. The ER doctor came in and explained to e that the high counts in her labs and the infections could be causing the hives and mental confusion. The weakened state of her body could be causing dystonia flare (frozen posture of her hands) up and the absence seizures. But he had talked to her peditrician upstairs and they wanted to run a CT and an MRI to be sure there was nothing more. The MRI was relatively normal, they showed her tonsils and adnoids were swollen causing the oxygen issues. She was released with an antibiotic and a follow up with peds.

Friday, doing good mental clarity showing through, hives were gone. Saturday still holding strong the upset tummy from the meds kicked in. Sunday morning getting ready for church and well darn it all the hives are back. They are every where, even around her tube, which has healed from the tube change all except the granulated tissues. 

Monday today we headed back to the peds office for new cultures and a check. Dystonia kicking in again, hives are every where and a rash has developed. So we were there a while. Here it is this is what was written in his final reports from ER labs, symptoms and so on. "Halayna Jones" (insert diagnoses codes) "is suffering from a UTI, a kidney infection, seizure disorders and another on set of dystonia." me please explain...Well the mitochondrial disease is weakening her system (this I know) She is developing and will more then likely continue to show seizure disorders and dystonia brought on by the mitochondrial and they way it breaks down these kids. The bigger organs need more energy and as they get less and less more problems develop and become more constant then here and there" (ok so I knew this as well but never once wanted to accept that this disease would begin to break my daughter down to this already) So now what? Well we go for more neurological work ups with top neuro peds at childrens hospital in Syracuse. He wants her neuro to be close to us and well in his words says he trusts non of the here in our town. And we pray. I look back to a year ago this time and I see it. I see the regression, I see shes worse. And as a mom that is so hard. But I will remain strong for her I will keep a smile on my face in front of her and many others. She will not see that this hurts me.

This is been a long hard week in many many ways and so much more then Halayna has happened. 

 And I want to leave you with this

Courage is being scared to death - and saddling up anyway!" -John Wayne -

Today we want to tell all of you how very brave, strong, and truly amazing you are! And while you often feel alone, weak, overwhelme d, exhausted, grief-stricken and full of fear...you continue to do what needs to be done out of love for your child...and you do it with a smile because you don't want your child to know that you are suffering. That my friends, is "saddling up anyway". We love you

A dollar towards a cure

As many of you know, our daughter Halayna , suffers
from a rare autoimmune disease called Eosinophilic Esophagitis ("EE"). Kids
with EE are quite literally allergic to food. The proteins in food cause a
build up in the digestive tract and blood of a white blood cell called an
eosinophil.
Eosinophils are meant to attack parasites, but the body of a child with EE
mistakes food for a parasite. As a result, the build up of eosinophils
cause numerous and very serious health problems, including, failure to grow and thrive, uncontrollable vomiting, severe stomach and throat pain, inability to sleep, joint pain, just to name a few. Many kids with EE can only eat 1 or 2 foods and have a feeding tube to survive. CURED is a charity that I am actively involved with that raises money to find a cure for EE. CURED has donated over $2 million to research over the past 6 years. CURED has begun a $1 challenge. We are looking to find 500,000 people to each donate $1 or more since that is something that almost everyone can do in these hard economic times. If you are interested in donating,go to www.halaynashope.blogspot.com and make a donation via pay pal. Furthermore, if you wish to go even a step further, please forward this to your family and friends. The more we get the word out there, the morelikely it will be that we will reach our goal. Thanks for your help!!! Happy Holidays!!

busy busy

heres whats been going on

we went to the endocrinologist today and there is still sugar concerns of the waving back and forth and high again. her first A1C was high, second was low and now again high which is meaning shes going and swinging back and forth again. So we are back at testing sugar 4 times a day at random times. he also wants to do another port sensor. They insert it in her tummy for 4 days and it draws her sugar levels every 5 minus to see again were we are at and we take it from there. He also wants more labs done on her.

We left there and went to her GI office to have her weight and tube checked also to have the granulated tissue burnt off with silver nitrate. Always a heart breaking trip for mommy as I listen to cry through the pain and there is nothing I can do to help her. It was a lot of tissue this time. We go on November 8th we go to have her peg tube removed and replaced with a mickey tube. We hope this brings an end to the granulated tissue and also the bulk of the other tube will be no more.  G tubes have to be changed every 3 months. This is our first change out. We will go from a PEG tube to a Mic-key. The GI believes the granulated tissue will stop re growing once the change is made as well. Thinking she is reacting to the plastic disk on this one.

Friday we go to our first appointment to begin fitting her for her orthotic inserts for her shoes to help with the toeing in. This is a long process and this is the first step. On a good note Halaynas reading skills have increased. After 2 years of trying to teach her to read something clicked and she is finally starting to get it. It was wonderful to see her read an entire page all by herself. Also yesterday in the bath she rinsed her own hair and did not cry when the water got in her eyes. This is a huge step for her and we hope and pray it continues. 

Halayna has been off for a week now. Last Saturday she was taken to pcp becaise her foot, leg and face swelled up. When she got there the hives had apeared. They are there almost everyday even with the foods shes allergic to being taken out. except the days she takes nothing by mouth at all and strictly feeds by her g tube. Anyways they said it was an allergic reaction to who knows what and to watch for breathing issues. If she began having issues with breathing or tounge swelling to go to the hospital right away. Thank God that didnt happen. Shes been very tired and more of a couch potato with aches and pains and slight cold symptoms. no we are at  the no sleeping at all. She was up for over 30 ours straight and could not find sleep. Shes had a few absence seizures as well. A lot of light headedness. But normal sugar readings at the time of light headedness. after a few minites of play she complains of exhaustion this week. And a lot of mental confusion. Even her at home nurse noticed how small her pupils were and that her eyes looked glassy. Now the muscle spasms are back. When i was cleaning her tube my hand was moving up and down and the left side of the tummy was very hard. It took me a while but i realized it was muscle spams which have now moved into her back. And here we are again at her not sleeping. Halayna has quit our churches christmas production telling the director our friend she just cant she dosent feel well enough this year. we have increased her g tube feeds as shes barley eating by mouth now about 200 calorie in take a day. At her last follow up she had  1/2 weight gain in a month of feeds. This week has been tiring and worrisome and we have many friends facing serious health challenges as well. Please say a pray for us and them. Many moms are in hospitals with thier mito kids, they are tired and worried as well. We all meed a break from the effects of mito, we need a cure!


these were taken from her caring bridge site to give everyone here a quick update.


Halaynas hope creations on facebook and etsy has been getting orders and we are thrilled. Be sure to stop by there and check us out.


The holidays are around the coroner. We dont really celebrate Halloween but we do go to our church for the night to have fun, games and dinner with our friends. This year Halayna can not have any of the candy the church gives out due to her EE disease. All that is really safe is lolli pops, yellow, blue and green :( Heres to praying she has to much fun to notice shes missing out on the sugar treats.

Trick or Treat

Did you know there are hundreds of children across the United States who can't enjoy a Halloween treat due to eosinophilic disease? (Including Halayna as she suffers from this)

The best treat for our child would be a cure.

This Halloween, would you donate a single dollar - the cost of a candy bar - to help fund the research needed to help us find a cure

Eosinophilic Gastrointestinal Disorders (EGIDs) are a set of digestive system disorders caused by having too many eosinophils, a type of immune cell. When triggered by the body’s immune system, eosinophils release toxins. These toxins cause inflammation, which normally helps rid the body of infection. However, chronic inflammation from having too many eosinophils results in tissue damage.

Eosinophilic diseases are categorized according to where the elevated levels of eosinophils are found:

Eosinophilic esophagitis (esophagus) Eosinophilic gastritis (stomach) Eosinophilic enteritis (small intestine) Eosinophilic colitis (large intestine) Hypereosinophilic syndrome (blood/other organs)

Symptoms may include pain, reflux, food impaction/choking, difficulty swallowing, hives/skin rashes, loss of appetite, nausea, vomiting, stools containing blood/mucus, abdominal cramping, diarrhea, bowel/ stomach wall thickening (from scar tissue build-up), obstructions, motility issues, polyps, anemia, and malabsorption.

Dietary restrictions are a main component of disease management. Special amino acid-based formulas may be required either as the sole source of nutrition or to supplement limited diets. Often, patients need to be fed through special feeding tubes. So if you can donate 1 dollar towards Halaynas candy(that she can't have) click the donation link above so we can help fund research for another disease that has no cure.