We celebrated Isaac's 3rd birthday on Sunday October 5th. He picked the Ninja Turtle theme :) Just like the 2 years past, the weather was in the 70's. Not bad for October in the Pacific Northwest. :) A few pictures below..
Thursday, October 9, 2014
Last Friday, the 3rd, we decided to go ahead with the Flex Sig and additional testing under sedation. With the continuing episodes of mucus in the stool and stomach pains, we thought it would be a good idea to just go ahead with it. So they got us on the schedule for Monday October 6th. Check in time 10am, procedure time 11am. I really felt like I had been punched in the gut. Usually I feel like I have time to prepare, we had an additional barium enema and exam under general anesthesia with our surgeon and we had at least 2 weeks to plan for those. This was scheduled for 3 days away. His 3rd birthday party was Sunday. I was already stressing about preparing for that.
We arrived at the hospital in the day surgery area. Had to get all checked in. When they brought us back to the pre-op (not necessarily called that but I don't know what else to call it lol) room they went over all the standard info - medical history, allergies, etc. They also explained to us how they have critical care nurses and a critical care dr in the room during the procedure. I was expecting things to be less formal. This seemed like surgery all over again. It was kind of anxiety provoking but I felt reassured that they were doing all the steps necessary to keep my son safe. We got to meet the pediatric critical care dr. We really liked him a lot. We also got to see Isaac's GI dr who reassured us everything would be ok. I was a complete mess. It's really scary having your child go through anything. Surgery, exams under anesthesia, sedated procedures. It just really got me emotional and upset. Luckily, our GI dr is super amazing and reassured me, and I obviously trust him without a doubt. He is an amazing dr. I was really struggling emotionally with this. I wasn't scared to find out the results, I was scared to let him be sedated. Plus, they do that through an IV and my son has always been hard to get IV's in. Lots of hours, screaming crying, miserable times trying to get the IV's in. So I was really nervous about this IV deal. But they do a lot of prep work and have a lot of tricks for kids who are hard sticks. I was truly amazed at their technique.
First, they put lidocaine on 4 different areas of his hands/arms. 4 places prepped so they could get an IV in. Then they put little hot packs on them. The IV went in right away and he didn't even notice. Didn't even make a peep. How amazing. A child life specialists was entertaining him on the iPad which really really helped. I can't even believe how fast and efficient this team was. It made everything so much easier on Isaac and us.
The actual procedure only lasted about 15 minutes. Originally he was just supposed to have a flex sig which just looks at his sigmoid colon but since his dr was not seeing anything concerning he decided to do a whole colonoscopy. He said to the naked eye he did not see anything concerning or anything that could tell us why these episodes were happening. There was no inflammation there. He did take 10 biopsies though while he was in there. He said everything looked great. Which was excellent news.
Isaac never missed a beat. He woke up, asked for the goldfish crackers he was promised and the juice. :) He was charming his nurse and he even got a present from the staff since his birthday was just a few days away. I cannot believe how brave my son is. He never acted scared. Not once. NOT ONCE. He is only 3. He amazes me every single day.
We got word on Tuesday night that all his biopsies were NEGATIVE. His dr thinks that the texture of his stool (which he saw on the colonoscopy) - gritty and thick - is the culprit behind the mucus and occasional blood. We are working on getting his stool and colon more hydrated, keeping the moisture in, and see if that helps with these episodes. Which makes sense. So as of now, that is our plan for care. We will see his GI back in less than 2 months. WHAT A RELIEF!
Here is my BRAVE guy :)
This last picture shows where he took the biopsies and the area that is circled is where his surgeon removed the diseased bowel and reconnected down
Friday, October 3, 2014
Well the past 6 weeks or so have been pretty confusing. What we thought was some type of viral or bacterial GI infection seems to be some type of episodes. The reason I say that is, I can pin point other times this has happened this year which never mounted to being a full blown virus. No fever, no vomiting, no watery diarrhea. It has been soft mushy stool, intense stomach pains, and just this past few weeks mucus and blood.
We decided after seeing our surgeon that is NOT Hirschsprung's related. But it is GI related. So she suggested we meet with our GI dr right away. Which we did, on Wednesday. We had a pretty lengthy appointment. We discussed everything that has been going on and he felt we needed to take a look further into things. Which means having a Flex Sig and an upper GI study so he can see his small intestine and also his sigmoid colon. He will be looking at where this inflammation is coming from. The mucus and blood usually mean some type of inflammatory issue. He said it could be a wide range of things.. From a food intolerance, an autoimmune disease, IBS, or maybe even no cause behind it. There is a wide, wide range of things he said. He will take biopsies during the procedure. He is looking for specific things that will help with a diagnosis.
At first we had no time frame for these procedures because he wanted him to be in an "episode" so he could see what was actively going on. It's like how are you going to see the inflammation when it's resolved 2 weeks later? So we really didn't have a time frame for the testing. It could be next week, next month, or next year. But then today the symptoms started again and we believe he is in an episode.
His testing got fast tracked to this Monday. The 6th. Sunday is his 3rd birthday party and Wednesday the 8th is his actual 3rd birthday. I never ever figured we would be celebrating his birthday and dealing with these issues at the same time. But we are ready for some answers. I just pray it is nothing more than some type of food intolerance or even IBS would be ok. I just can't take another punch in the stomach with another diagnosis.
I have been having a lot of anxiety today thinking about Monday. I just don't even have the words for it. I am utterly speechless. Numb. Sad. Confused. Angry. And frustrated. I just keep praying that things will be ok and we breeze through this.
Please keep my baby in your prayers. That's all we ask for right now. I will update more this week and post a few pics from his birthday. ♡
Thursday, September 25, 2014
Well this past month has been a struggle to say the least. We thought about 4 weeks ago Isaac was sick from a viral stomach bug or possibly a Hirschsprung's related infection. We did antibiotics for the first time as a preventative to be safe. Which totally messed up his whole system. We've been trying to get him back regular. Working closely with his surgeon, chiropractor, and nutritional practitioner. Fast forward to now.. a few weeks later and we are having issues again.
First it starts with stomach cramping, loose mushy stools (not diarrhea), and this past week has been accompanied by blood and mucus. This is leaving us stumped because nothing has changed in his diet. He has been food allergy tested. We don't do dairy, limit soy and gluten and absolutely no GMO's. We started thinking back to this past year and really believe all these situations are not all viral but some type of other GI episodes.
We saw his surgeon today who also feels the same.. this is not viral but some type of other GI issue. She does feel it is not Hirschsprung's related though. Which is good. She decided to consult with our GI dr (they work in the same clinic) and have him get in touch with us and see Isaac asap. She feels maybe more food allergy testing is needed or maybe our GI will have some other ideas of what it could be.
This week has been stressful, to say the least. More questions, some answers, and a lot to think about. We enrolled Isaac in a toddler parent program at a local private school. He was unable to attend today because of what has been going on. We only go one day a week so it was a bummer we didn't get to do that today.
His 3rd birthday in about 2 weeks away. I can't believe it. I having planning a party last minute because of the issues he has been having. This year the theme is Ninja Turtles :) His current obession. I hope we can be healthy for his party we are so excited to celebrate. ♡ I will update more as I get it..
As always, thanks for following our journey!
Tuesday, September 2, 2014
The past couple weeks have been a bit rough. Isaac had an ER visit about 2 weeks ago because he was having abdominal pain, loud gastric noises, diarrhea, and just plainly uncomfortable. It was determined to be some type of viral stomach bug. Fast forward to today and he is not feeling 100% again. Not exactly sure what is going on. His stool was pretty formed which means he could be constipated. So we are treating accordingly. I really hope nothing is going on. For the first half of the day he laid on the floor and didn't want food or water. We had to give him an irrigation to figure out what was going on. The return was all clear saline so which means his immediate bowel was clear. Then about 20 minutes later he has a well formed large stool. But did give us the conformation he was constipated - higher up into his large intestine. Just by the texture and look of the stool. The irrigation definitely loosened things up, enough for it to come down. He started to perk up and even ate breakfast and drank his smoothie. But now we are back to laying on the ground and just looking kind of sad.
Hirschsprung's is so anxiety provoking and just so frustrating. Being a HD parent is so hard sometimes. I can't even explain it. You watch your child suffer and struggle and there is nothing you can do. I don't mean like well we just didn't do anything for him and let him suffer, we gave him an irrigation and took him to the chiropractor right away, I meant that I can't cure this disease. No one can. So there will probably be a lot more days like this. And it sucks. It sucks. We are constantly having to watch what he eats, making sure he has lots of fruits and veggies, pushing water, making sure his bowel moves regular. And sometimes it's just not enough. And then we end up in situations like this. It puts a lot of stress in our house because everything has to stop because of this disease. I had to watch my husband go to work because we need the money, which stressed both of us out, then I had to take Isaac out when he's not feeling well because I had to pay bills and go to the bank. Things that couldn't wait. Meanwhile, my house is not tidy, I have not planned dinner, and I haven't showered. People don't understand what's so hard about having a kid with a medical condition. Well read above and maybe you will understand. Everything stops when your child is having problems. We spent all morning on and off the phone with his surgeon.. That took up most of our morning. It's just never ending. I am not asking for sympathy, just some compassion. Sorry if I missed your bday or some big event in your life. Sorry if I don't call much or don't answer when you call. Things are just not good for us right now. Trust me, I wish we could share all these special moments with our friends and family, but we have an everyday battle for us. Much like today.. ♡
Thursday, August 28, 2014
I wanted to take a few minutes to talk about COMPLICATIONS from Hirschsprung's Disease. I have heard from a lot of people that the internet hasn't been of much help for education. My point exactly. I read a lot of the sites and the stuff they say is pretty off - as far as complications go. That's why I am asking more families like ours to post about their stories. Hirschsprung's is a VERY tricky disease. Almost ALL kids with it suffer complications. The internet makes it seem like this disease is an easy fix, have a surgery and they are cured. NOT AT ALL. This is a LIFELONG illness. A LIFELONG disease that we battle EVERY SINGLE DAY. This blog entry is for education on complications and to talk about some struggles we have had, and some struggles some of our fellow HD families have had.
First I would like to cover some general education on Hirschsprung’s Disease. There are 2 main types of Hirschsprung’s Disease, known as Short Segment Hirschsprung’s Disease (SSHD for short) and Long Segment Hirschsprung’s Disease (LSHD for short) which are defined by the region of the intestine lacking nerve cells.
In short segment disease, nerve cells are missing from only the last segment of the large intestine. This type is most common, occurring in approximately 80% of people with Hirschsprung’s Diease. For unknown reasons, short segment is 4 times more common in men than in women.
Long segment occurs when nerve cells are missing from most of the large intestine and is the more severe type. Long segment is found in approximately 20% of people with Hirschsprung’s and affects men and women equally.
The rarest forms of Hirschsprung’s are called Total Colonic Hirschsprung’s Disease (or TCHD) or Total Intestinal Aganglionosis (TIA). In Total Colonic the nerve cells are missing from the entire large intestine and sometimes part of the small intestine. And in Total Intestinal ALL of the nerve cells are missing from BOTH the small and large intestine.
Depending on what type of HD you have, really means what your outcome will be. Kids with short segment seem to fare better. Also, there is different protocol for surgery, care, etc depending on what form you have. A lot of the time kids with short segment just get the pull through surgery. Kids with long segment may need a colostomy bag or an ileostomy before they can have their pull through surgery. Isaac did not have a colostomy so I am not well versed in this topic. I am hoping that more HD parents will come forward with their stories so I can post more about kids with colostomy bags and such. What I can do, is talk about Isaac’s surgery and talk about his complications he has experienced.
In children who cannot receive the pull through directly the surgery is done in steps. First, the abnormal portion of the colon is removed and the top, healthy portion of the colon is connected to a small hole (ostomy) the surgeon creates in the child's abdomen. Stool then leaves the body through the ostomy into a bag that attaches to the end of the intestine that protrudes through the hole in the abdomen. This allows time for the lower part of the colon to heal.
Ostomy procedures include:
- Ileostomy. With an ileostomy, the doctor removes the entire colon. Stool leaves the body through the end of the small intestine.
- Colostomy. With a colostomy, the doctor leaves part of the colon intact. Stool leaves the body through the end of the large intestine.
Later, the doctor closes the ostomy and connects the healthy portion of the intestine to the rectum or anus. Which is called the pull through (or they sometimes call it a BOWEL RESECTION), which is what Isaac had. He had the pull through – which was one surgery. Even with the pull through there are many factors and techniques for that surgery. The surgical techniques are called the Swenson, Suave or Duhamal. Each of these operations has different versions. Which type is best for your child depends on their condition. Also there are different ways the surgery is performed.
- Minimally invasive procedure. The surgeon makes a few small cuts (incisions) in your child's belly. Then, they insert a thin, lighted tube with a camera and their surgical tools. This is sometimes called laparoscopic surgery.
- Open surgery: The surgeon uses a single cut to get to the intestines that need to be removed. The incision is usually larger than those used in minimally invasive surgery.
- Transanal pull-through: Sometimes the surgeon can reach the intestines through your child's anus. Then, they remove the unhealthy section and pull the remaining intestines down.
- Combination: In some cases, surgeons use laparoscopic or open techniques along with a transanal operation.
Isaac had the Swenson technique and it was done as a combination surgery. His surgeon made a small incision below his belly button, she pulled the intestine out, did a biopsy in the operating room to make sure the area she was connecting to had plenty of ganglion cells (which are the cells that are missing from the diseased portion of the colon), then she proceeded to perform the trans-anal pull through.
Now that I have covered some basics about the different types of Hirschsprung’s and surgeries they perform, I will now talk about the complications that kids can and DO experience. It really irks me that most of the informational stuff on the internet makes Hirschsprung’s seem manageable, easy to treat, and basically no lifelong complications. WRONG. SO WRONG.
One big complication that is on the forefront for many kids is Enterocolitis. Children who have Hirschsprung's disease are prone to a serious infection of the intestines called enterocolitis.
Enterocolitis is caused by stool backing up behind the immobile section of colon. The stagnant mass of stool provides a fertile environment for bacteria to grow. As the stool mass expands, it presses on the blood vessels in the walls of the colon. Decreased blood flow can lead to a breakdown of the lining of the colon (mucosa), making it susceptible to infection. It can be a life-threatening complication. It's treated in the hospital with colon cleaning (rectal irrigations) and antibiotics.
Isaac has never had enterocolitis (thank God) but I know MANY HD kids that have. It is really scary. Every time Isaac has a stomach bug, he has to go into the ER and is almost always admitted to be monitored to make sure it’s not enterocolitis. This infection can come on really fast and be very severe in a short amount of time. It usually begins with foul smelling diarrhea, loud audible stomach noises, lots of gas, abdominal distention, fever, possibly vomiting. HD kids can get dehydrated very easily and much quicker than a normal child would. So IV fluids are almost always a must, even when it is just a stomach bug. So simple childhood illnesses like gastroenteritis (stomach flu) and viral illnesses are taken very seriously with HD kids because those illnesses show the same symptoms of enterocolitis. That’s why Isaac has to go into his surgeon or the ER every single time he has a stomach illness. To rule out enterocolitis. This is why we are almost always admitted a couple times a year. This is why we were just in the hospital last week.
I also read on a website, this information.. I am absolutely IRATE with the first sentence... Most patients treated for Hirschsprung’s disease do not have complications. However, up to 10 percent may have constipation, and less than 1 percent may have fecal incontinence.6 Enterocolitis and colonic rupture are the most serious complications associated with the disease and are the most common causes of Hirschsprung’s-related mortality. Enterocolitis occurs in 17 to 50 percent of infants with Hirschsprung’s disease and most commonly is caused by intestinal obstruction and residual aganglionic bowel.5,6 Infants should continue to be monitored closely for enterocolitis many years after corrective surgery because the infection has been reported to occur up to 10 years later. However, most postoperative enterocolitis cases occur within the first two years of ileoanal pull-through anastomosis.6
(Referenced from http://www.aafp.org/afp/2006/1015/p1319.html)
Are they serious? Most children do not have complications? Let me see, EVERY SINGLE HD kid I know has had some complication. MY CHILD HAS. The information online makes it seem like this disease is so cut and dry. And there is no long-term side effects or issues. Most of the websites don’t even list anything more than Enterocolitis as a complication. Yet, there are many more things that HD kids can experience. More surgeries, bowel obstructions, kinks in the bowel or bowel rotations, malabsorption issues, weight gain or feeding issues, other GI issues like reflux, food allergies, dehydration, constipation, incontinence, I can’t even name all the things I have seen or heard about HD kids having issues with.
All the reading material online is passive. This is one site I visited it and this is what it shows are long-term lifestyle changes for managing the disease or what the general outlook is..
Children may experience constipation after surgery. To help manage constipation:
- Serve high-fiber foods. If your child eats solid foods, include high-fiber foods as part of your child's diet. For instance, offer whole grains, such as whole-wheat bread. Reduce servings of refined grains, such as white bread. Encourage your child to eat fruits and vegetables. Cut down on fatty animal-source foods, such as meat and butter. Be aware, though, that a sudden increase in high-fiber foods can make constipation worse — so add high-fiber foods to your child's diet slowly. If your child isn't eating solid foods yet, ask the doctor about formulas that might help relieve constipation
- Increase fluids. Encourage your child to drink more water. One of the colon's jobs is to absorb water from food in the last stages of digestion. If a portion of your child's colon was removed, your child may have trouble absorbing enough water. Drinking more water can help your child stay hydrated, which may help ease constipation.
- Encourage physical activity. Daily aerobic activity helps promote regular bowel movements.
- Ask your child's doctor about laxatives. Certain laxatives — medications to encourage bowel movements — might help relieve constipation. Ask the doctor about the risks and benefits of laxatives for your child.
SERIOUSLY?!? This is what you “need to do” to manage it. Managing constipation for an HD is not simple. These guidelines for managing constipation are for a child with a NORMAL COLON. Yes, these things are beneficial for an HD child, but not at all “the fix.” Children with HD have a colon that does not function normally. It never will. Even with surgery. There is something structurally wrong with their colon. This is why HD is a lifelong condition. The surgery works yes, but it does not cure Hirschsprung’s.
Last year when Isaac turned 2, he started complaining about stomach pain. We took him into his surgeon who did some xrays and determined he was having issues with constipation. She suggested that we try dietary changes – adding in chia seeds, maybe some prune juice. Things like that. We then had a recheck in a month which determined those measures were still not helping. Still constipated. The issue with constipation is the longer it goes untreated, the more likely the colon will stop functioning properly. When you don’t have a system that is functioning properly, all kinds of other issues come up. One being, that if you let the issue go, the colon with basically will get lazy causing the colon to be stretched out. Obviously which makes it not work properly. It also puts the child at risk for another surgery. That’s when a mom friend of mine suggested we see a nutritional practitioner. I posted a blog about what we were trying and what we were doing under her care, which is located here:
I won’t go into detail about it on this post since it was already a blog entry for us. The things we learned, and still learn, from here are so valuable. She told us that a strict NON GMO diet was in order because people with GI disorders, especially ones like HD, should not consume GMO’s. In case you are unfamiliar with GMO’s I suggest you read up on them on this website (http://www.nongmoproject.org). In short, GMO’s causes inflammation in the intestines and digestive tract. Can you see why it wouldn’t be good for HD kids?? She also really outlined a diet for us, what stuff to avoid, what stuff to stick to, and she also prescribed a lot of supplements to start to “heal” his gut. When we started working with her, our surgeon had put us on a low dose of senna. Which is a bowel stimulant. Not a laxative, a stimulant. This helps aid in the process of elimination (pooping) by basically stimulating your bowels or forcing them to empty. It wasn’t that his poop was hard, it was not moving through fast enough. We went back and forth on the dosage. Up down, up down. Sometimes it really upset his stomach. Lots of gas, lots of pain. That’s when we went to see Isaac’s GI dr. After speaking with him, he suggested we start seeking more alternative care, since that’s what we were now leaning towards. I would not accept that my son would need a bowel stimulant everyday just to poop. Especially one that hurt his stomach. But what do you do? Either him be in pain from not pooping or be in pain from the senna. And there was nothing more really the surgical team could do because there was nothing really structurally wrong, it was just his system not processing it fast enough. It needed stimulation. That’s when our GI suggested chiropractic care. Which I just wrote an entry about that as well. Which I won’t get into too much on this entry. You can read about it here:
I wanted to point out that NONE of the alternative therapies are covered by insurance. His nutritional practitioner, his chiropractic care, none of that. That is all out of pocket expenses we pay for. I decided to not go back to work when we found out Isaac had Hirschsprung’s Disease. And let me tell you, I made the right choice. There were plenty of days, weeks, months that I had to administer treatments at home. Irrigations amongst other things. Doing this is very common for HD kids. We often have to do them when our kiddos get sick as well. And especially when they get enterocolitis. Some parents have to do them every day just to get their kids to poop. With that being said, a daycare would never be allowed (or even want to) perform these treatments. Isaac also struggled with food allergies until he was about 2 years old. HD kids really don’t just have Hirschsprung’s, they have a whole host of other issues too. So putting your child in daycare is not really something we can do. Some parents HAVE to, but I guarantee they don’t want to. HD kids need to be monitored. They need to be treated as an individual. We have to document what they eat, how much they drink, how much they are pooping.. What color the poop is, the consistency of the poop, does it smell funny, do it look funny, the list goes on and on. How are we supposed to put our kid under the care of someone else who has no experience with this disease??? It’s not as cut and dry as you think. Also, with the special diet, that means virtually no eating out. No garbage food. Isaac couldn't have dairy, soy, grains, gluten, nuts, or eggs until he was tested at the age of 2. His diet was so strict. And it still is.. We have to eat whole, organic foods. Which comes at a large cost. But I will do anything to help my son. ANYTHING.
Another issue is financial problems for HD families. Like our family, we live on one income. My fiancé works a lot. Sometimes his schedule is not accommodating to Isaac’s issues, but the company he works for has been such a blessing for us. They understand Isaac’s condition and always try to accommodate when they can. But most employers do not do this. What about the families that HAVE to go to work and cannot miss work or they will get fired?? Even though my fiancé and I are not married, and I do not work because of Isaac’s medical condition, we do not qualify for ANY type of assistance. NONE. Isaac did qualify for SSI for less than a year.. Which they were giving us 50$ a month. 50$ a week is what we spend in diapers and wipes. I am not saying that we need assistance, but just the other day our insurance would not pay for a 29$ bill to the pharmacy for special spray and cream my son needs for his butt. 29$. They didn't want to pay for it because it is considered something the pharmacy can dispense over the counter. But you cannot go into a store and just buy it. You have to have a prescription for it. So how is that “over the counter?” We have tried every single over the counter, buy in the store diaper cream. HD kids don’t get a rash per say, the poop burns their butt. Basically a burn. They only thing that works for Isaac is to have this special cream and spray. Our surgeon used to supply it for us but they have cut back their expenses and cannot give it out anymore. So now we have to pay $14.50 for a 1 oz (ONE OUNCE) bottle of spray and $13.50 for a tube of barrier cream. We use about one per week. So we are looking at around 110$ a month. SSI decided that because Isaac’s dad (my fiancé) makes “too much”, Isaac does not qualify for any assistance. How does that even name sense? They want us be considered dependents when it comes to any type of state help but then when we apply for SSI my fiancé is condsidered single with no dependents so he makes too much for Isaac to get SSI. That doesn't even make sense.
My fiancé got a promotion at work, where he has worked for 8 years. Of course he would want to take a promotion. But the increase in pay was not much. Maybe an extra week in groceries for us. Or maybe would pay our car insurance. Or something like that. So they decided to stop giving us the 50$ a month for Isaac. It frustrates me, not because we need the money desperately, but because I see people (and know people) who receive over $3000 a month from SSI and they don’t even have half the struggle Isaac does. I don’t understand how the SSI process works because I have a friend with a medically complex kiddo who does not get any assistance because SSI doesn't think her child is ill. He has a rare disorder that there are only a handful of cases here in the US. She has traveled out of state many times to seek other care for her child, and now just receiving more bad news and has to take him to another specialist. On top of him having this disorder, a heart condition, has now added neurological issues. She has applied for SSI for her son but keeps getting declined. It is such a process for ANYONE seeking any type of assistance but for people who really, really need it, there is no help. NONE. Do you know how long I spent on the phone on Monday with the insurance company? 2 hours. TWO hours to not get anything taken care of, to get a recording that said the phone lines are experiencing a high volume of calls and to call back later. After being transferred to 5 different places. To hear that recording. 2 hours. Do you know how long my fellow HD mom spent on the phone last week with insurance? 6 hours. SIX HOURS. Who can have a full time job when you have to spend 6 hours on the phone with insurance? How can someone even take care of their child or children when they have to be on the phone for 6 hours. What about if their spouse works? Or what if they are a single parent?? Our system is so flawed. This is why I want to raise awareness for Hirschsprung’s. So they medical system, insurance, whoever else will recognize the struggles that families go through - not just HD families. On top of spending hours and hours on the phone a week with insurance or whatever, we also have doctor appointments. Sometimes multiple appointments a week. A mom I spoke with said her kiddo has 6 to 8 appointments a WEEK. A WEEK. That is like 2 or 3 a day. How can a parent of a medical complex kiddo have a job that would accommodate a schedule like that?? There is no point in working because you spend all day with doctors. What about all the other things life throws at you? Cleaning house, cooking, taking care of your other children. Or even remembering to eat or shower. This is why HD parents feel so alone. You know how many times my fiancé and I have been out together on a date in 3 years. 3 times. 3 times. I admire HD parents (and other medically complex kiddos) because we ALWAYS put our kids first. We don’t worry about how the bills are going to get paid, or about when our house will be cleaned, or a shower. Or even thinking about the future. HD is a day to day illness. We fight every day for our kids. It’s so hard to be an advocate for your child when there is no one listening. No one there to help. Hirschsprung’s families feel alone a lot of the time because people generally don’t understand our struggles. Actually a lot of families feel alone when their kids have medical issues. Not just Hirschsprung’s families. But I want to raise awareness to increase the funding for research, to push our government to have better programs for families like mine. Hirschsprung’s is about 1 in every 5000 live births, that means there is about 40 families like mine living in Tacoma (give or take with a population of about 202,000), I need the help of all of you to link us all together so that we can tell our stories. I only know ONE family locally. I need to know EVERY family in Tacoma. Every family in Washington would be my goal. But without the help of all of my friends, family, strangers, I cannot fight this battle alone. I hope after reading this blog post you will decide to share my ILoveRare page one more time. And to encourage all your family, friends, strangers on your Facebook to do the same. I thank everyone who has already helped us. What you've done is invaluable to me. Here is the link to our Facebook page..
Friday, August 22, 2014
The other day I posted this status to my Facebook...
With all this ALS stuff going on, makes me want to start raising awareness for other rare diseases that no one knows about. How about Hirschsprung's Disease. That's what my son has. And it virtually gets no funding for research, no shout outs, no challenges, no news time, no media time, nothing. Nothing. Yet these kids are just as strong, endure just as much - maybe more - than any other person fighting any other disease. As do their parents. So who will repost this to honor my son? Or post a sign for him saying Way To Go Buddy, you survived your surgery at 6 days old. Or donate money to fund Hirschsprung's research? No one cares because it's rare and not that important because it's not an "epidemic." Help me raise awareness for Hirschsprung's Disease. Share my status.
With this picture of Isaac. I asked all my friends to share my status and to keep sharing it. I got such a huge response, emails, messages, calls about what we could do to raise awareness. I have so many people willing to put in the work to raise awareness, start a non profit organization, start challenges like the one currently circulating for ALS. With that, I created this Facebook page to raise awareness for Hirschsprung's Disease. And a lot of other rare diseases that do not get ANY media coverage.
Pop over and like our page and share it far and wide!!! This is just the beginning people.. Lots more to come. Here is the link to our Facebook page..