Eating With My LCHADder

Tonight brought the best of surprises. After all that complaining I did several days/weeks ago about eating out, with NO healthy options, Evangeline and I shared a plate, that was completely "Evie-Safe", as I like to call it. We went to Longhorns, I wasn't too hungry, but went along for the ride, as I often do. We arrived there, and Looking at the kids menu to see, and JUDGE, what unhealthy foods are offered our children, I was very surprised! They had grilled chicken and veggies! I was elated! So I ordered it, assuming the chicken does have added fats, I offered Evie Grace a small portion, but meats aren't usually her thing. (well lets face it, ANY food isn't her thing) She put it in her mouth, did the head shake bit and immediately spit it out. But she tried it, which is always a plus! We ordered the Veggies, which of course came with a "Veggie Butter Sauce" that I promptly asked the waitress to not add to ours, and they were great! It came with 2 orange slices, which were right up Evangeline's alley. She sucked the juice out of the orange, and tried bits of carrots and broccoli and some yellow squash. She even reached for some water towards the end of her meal and drank, Swallowed, and then went about her merry way. Of course, by this time she was extremely cranky, as she had worked VERY hard. Eating is not an easy thing for her, and she did well! I really feel like inserting an "applause" here.

Alexandra's Birthday Party (My 1 year old Niece)

Evangeline and I hosted Alex's party here, at our house, and of course there was cake, ice cream, sandwiches, etc that she was unable to eat, (due to both fat restrictions and inability to eat much by mouth) However, my wonderful sister was very accommodating and decided to buy her some FF Sherbet. I was very grateful. She didn't have to buy sherbet for her niece who doesn't eat by mouth! But she graciously offered it, and we accepted. We are always willing to try ANYTHING to get this child to eat, as she screams when she sees a bottle, and thrashes her head back and forth at the suggestion of food. (Obviously, she has gotten better, through much therapy, and prayer!!) I digress. She bought the sherbet and when it came time for Ice cream, I scooped some into a bowl, assuming it would get wasted, and thrown away, as do most of the foods I buy for Evie. However, she proved Mommy wrong! She ate several bites of the sherbet, without a fuss! No head turning, nothing. She even put the spoon into her mouth herself. This is something she hasn't done since before G-tube surgery.

All of this to say, we are no where near ready for eating whole meals by mouth, but we are making very slow progress. I am finding the more I work with her, the better she gets. I never force, but I encourage the MESS out of her to eat. Eat anything put in front of her.

Thinking back, to her surgery and what I was scared most about. This is it. I am living it. A bottle aversion, that has turned into food aversion. Something that we will deal with for several years. I remember texting friends telling them that I was afraid of this happening. All the nights spent holding a baby with an NG tube, crying, knowing that this was going to be the outcome. It certainly has been a very long road. And we have a long ways to go, but I am so grateful that I have a God who gave me such a wonderful support system. Moms that have tube fed kids. Moms that have kids with FOD's. Moms that have been through this and so much more. People that I can truly lean on for great advice, practical help, and just to be there when some things fall apart.

I am also blessed for other friends who have perfectly healthy kids. Ones that I can look and say, that will be us. ONE day! Maybe not today, or tomorrow, but someday things are bound to get better. These friends are so sweet and special to me! They uplift me, and pray for me! They comfort me when I have lost faith in God. (Which has happened many times) They may not even know it, but I look at their families, and I admire them and look to them for what we will be. They give me goals, insight on how to be a better christian, and parent. I used to look at them with envy, because they had "perfect" kids, but thankfully, prayerfully, I have grown, (...I hope!!) and now look to them for encouragement.

I'm not sure what inspired me to come clean about my feelings lately. Perhaps its Evie's 1 year birthday Celebration coming up. Perhaps its the Christmas Spirit, wanting me to tell all my friends how much I truly need them! Maybe its just time I thanked everyone. I am not sure.

I know that I have a long way to go as a Christian and wife and mother. Evangeline and I have a long road to travel. We are a long ways away from any meals that are ONLY eaten by mouth. But I look at where we came from. And.....WOW!

Medicines? Who needs Meds?

Well, having another issue lately with getting Evangeline the medicines she needs to function. We had run out of Amitriptaline yesterday, so I called the Dr had had it called it, supposedly. Later yesterday afternoon, I called the pharmacy, one of only 2 in town that could fill a compounded script, to see if it was ready, as it is across town, and I didn't want to drive over there just to see if it was ready. They, of course were still working on it. So last night we went without that med. Let me just say, that she has been having all kinds of stomach issues, and not having this med didn't help. She was awake till 12:30am, and just laid in my arms staring at me sometimes retching crying and having gas. So unusual. She smiled if I talked to her, but she was not feeling well at all, I could tell. We played the game to where I put her in bed, she cried for 10 min, I picked her up, rocked, walked, sang, talked, cuddled, etc, then put her back in bed, then she would cry again. For 3.5 hrs we did this. 9pm-12:30. Finally, I fell asleep in the chair holding her, and thats how she rested. Eventually she went to bed, but still woke up several times throughout the night.

There is no way I can tell if it was from a stomach bug or lack of meds, or both, but I know it didn't help.

So today, I go to pick up the script, assuming its ready. Guess what? It wasn't. The Dr never called it in. There was no script back there, nothing. I practically begged for 1 dose for the night, and they refused to give it to me, saying they had to compound it together, and the store was closing soon.

Not wanting another bad night for her (or me, for that matter,) I called Annessa to get advice, and help. She ended up calling the pharmacy, and low and behold, they had a bottle ready, just didn't want to dispense it to me without the refill script. They gave us the bottle on the promise that we would get the script taken care of first thing in the morning! I have no problems with that, I am just happy, to get the med in her! Tonight, she went to sleep at 9:30, per usual, and is happily sleeping, no retching, no crying, no gas.

Synergis: an RSV preventative shot

This shot has been a pain in the rear to try and get my child. They reccomend your child get this shot to prevent RSV, especially if they are premature, and have major health issues. Well, my child fits both bills. Born 2 mo early, and has LCHAD.

About 3 weeks ago. our Home Health Agency contacted me about receiving this shot. I had never heard of it, and frankly didn't really want her getting ANOTHER shot. It seems we are always giving her something. So, it apparently is a specialty shot that must be ordered through only a select group of pharmacies. This drug, without insurance, I found out, costs $2,500. For all the shots. It is a 5 mo long process, where she would receive 2 vials a month. Our insurance is going to cover most of that, Praise God. However, what it doesn't cover is $500. That is still quite a bit of money for a teacher, and a brand new 31 consultant/ preschool music teacher/ SAHM. I have called medicaid 5 times. 5 TIMES to see why they are not going to pick up the rest of the bill. And finally at 3:00 today, after telling them and being quite forceful, that I wanted answers. It is simply a ridiculous amount to pay for a shot, and quite frankly, it would be well worth medicaid to pick up the balance. If she didn't have the shot, and ended up with RSV, then hospital bills would go WAYYY over that amount anyways.

So, after finally getting in touch with someone, I found out that the reason they denyed the claim was because the specialty pharmacy that supposedly is one of only a few in the state that has the shot, does not accept medicaid as a insurance provider. That being said, I called everywhere today searching for a pharmacy that both carried the drug, and accepted medicaid. To no luck.

So, we may be out $500, or end up in the hospital. Well, obviously, I know which one is worse,The hospital. It just stinks to have to make that kind of decision. And to be put in that situation. So, I pray that God provides a way to let her get the shot that she needs, and let us find a provider for the shot that accepts medicaid. More phone calls are going to be made tomorrow.

I am tired. Tired of fighting with the system. Tired of having phone bills that are over my minutes because of these organizations that are supposed to help you, but treat you like dirt. Tired of waiting in line, for meds that aren't even there. Tired of Drs offices making mistakes that make my daughter's nights horrible.

It has been a long, long day. I am, however, grateful that the pharmacy gave us the prescription, just to get us through the night. Glad for the rest that I will be able to get tonight. And certainly glad for a nurse that is like family. That will stick up for Evie, when I am at the end of my rope. But most of all, glad for a God who isn't judgmental, and who listens when I complain about ordinary matters!

Eating out with an LCHADer

I can't sleep tonight so I decided to tell you about my first experience today with eating out with an LCHADer. We went to Southfield Grill. Usually, I would not post the name of the place/person that I am having difficulties with but these people were so incredibly rude and we so uncooperative that I am telling you, not to get you not to go there, but to explain why I will not go there, should you invite me with you.

We go in, and place our order. It is a down-home Southern country cooking restaurant, so ordering healthy is rather hard to do, as it is. I ordered smoked pork loin, which was apparently smothered in gravy, which I didn't know about, with butter beans, which apparently are cooked in butter(?), mashed potatoes and rice broccoli and cheese casserole, which obviously isn't fat free.

So, I went with my family, who had chosen to go there, on account of the short wait, and cheap prices.

I asked for some plain white rice for Evangeline. They bring out rice smothered, and I mean SMOTHERED in butter. It was yellow!!! And placed it in front of her and she reached her hand in and put it in her mouth. I, of course, was not expecting this. I asked the lady if it had butter in it, knowing full well the answer. And she, obviously said yes. So, I then asked if we could get some without butter. Just plain, white rice. Sans the butter. (Apparently, this is why we have such high obesity rates in Louisiana, and all over the south.) So, then I proceeded to find out that NONE of their veggies came cooked without butter. The waitress, not the brightest person in the world, bless her heart, asked me if I wanted her to eat Mashed Potatoes, COOKED IN BUTTER!!!!!! I said, "No Ma'am. She cannot process fats and I just want something for her to munch on, that is fat free". "Why?", the waitress asked, with an accusing attitude. My reply, "She has a metabolic disorder to where she will get sick if she eats fats". However, I lost her at the words "metabolic disorder". I couldn't get them to cook ANYTHING without butter. So they asked if I wanted toast. Without the butter. REally??? Toast??? Is that the best you can do for an INFANT? Needless to say, my child "ate" fat free crackers and a few Gerber pinwheels that I had packed for her.


Now, this wasn't our first time eating out with Evie. We have gone out numerous times, but I have never tried to order something for her. I always pack snacks for her to "eat" (throw on the floor, really) and to be a part of the family. But, she has been doing so much better lately, that I wanted to try something a little different.

So, why is it that I am embarrassed, when obviously, the waitress is the one who is ignorant and very unhelpful? She didn't try at all to accommodate Evangeline, and I have a feeling it is going to be like this for the rest of her life. I am going to try my best to protect her from situations like this in the future. I should have never agreed to go there in the first place, knowing Evie was going to try to eat with us. I can only be thankful that she will never remember this incident. I hope and pray that time will take the memory away from me.

Evangeline's School Options

I was raised in a public school. I learned to read, write, do some basic math, sort of. :/ Math is my weak spot as most of you know. But I was a relatively normal child. (I wish I knew another word for "normal") I had asthma. I didn't need constant monitoring by a teacher. Over sized classes are the staple there. I was placed in the back of the room because I was a "good" student (because I didn't talk, not because of my grades) I was able to eat breakfast at home, eat whatever sludge they decided to serve us in the Caf. and then eat a snack when I got back home, then supper. I did PE, like most other kids. Mumbling under my breath about this or that, but doing it anyways. I didn't have to worry about muscle breakdown, being too tired from not having physically enough energy and not eating adequately. I went about my day, "normally". We had a school nurse there to administer my asthma meds, should I ever had needed them.

Evangeline, on the other hand is different. She will have to worry about all of those things that I mentioned. She has to eat to have energy to do math, PE, music, and even talk. If we chose to put her in a public school, a school nurse would, initially, not be any more equipped to take care of her than I was. She would have to be well versed in the nature of LCHAD, as would all of her teachers, principals, bus drivers, same as in a Private school.

So why is it then, because she has a special condition that she, because of the nature of her condition,according to some, going to be even more difficult to get into a private school? When they have smaller sized classes? Teachers who who aren't over worked? (Not that I am saying Public school teachers don't care, by any means!!! But its hard to watch 31 kids like they need to be, as opposed to 17)

I guess what I am trying to say is that it is even more so important that she get into a private school where they can monitor her closely, where her opinions will be listened to, where her voice will be heard, and where the parent voice is respected as much as the teacher and child. And also to have her respected and not looked upon as being "weird" for being different for whether it be because she cant eat certain foods, or because she has a feeding tube. Where she will be INCLUDED. If, when she does get into school, and we do need a nurse, we can provide one.

9 mo old And Still Not Eating

I last Updated a Whole Month ago. While my title may seem a little like a "Debbie Downer", the fact that I haven't updated in so long, is actually a good sign. Evie Grace, as I have take to calling her now, is 9 mo old. She last weighed in at a hefty 17 lbs and 14 oz. She is rolling, now on her belly more and more, and actually starting to put a lot of weight on her legs! We are getting "there". Not quite sure where "there" is, but I am sure happy to be "there" rather than "here".

When we last spoke, we started her on a new med, neruotonin, and we found that, that med alone, does no good. However, paired with the equally intense drug, amitriptaline, works wonders. She has been on both, now, for over a week. Before, only on the neurotonin, she would not take a bottle, she refused baby foods, crackers, Gerber toddler foods, and wouldn't even play with them. With the new med, amitriptaline, she is playing, tasting and has even swallowed a tinie-tiny amount of rice, milk, and perhaps bread and crackers. (Sometimes it is hard to tell where the small entity goes!) I will say, she does seem to be having some difficulty sleeping though, which is no fun for Mommy or Daddy!!

Occupational Therapy is going rather well too. We started seeing an OT as soon as we returned from NOLA. She has begun helping Evie Grace to learn to use her muscles better to help her learn to eat better. We have even started a new regimen where we no longer even offer a "bottle". We simply offer her a sippy cup. I don't even warm it up. By doing this I have gotten her to drink form it. Not much, but every little bit counts.

It is so hard to think of the fact that I have a baby that has a Food Aversion. When someone first gets pregnant and reads all the books, they become so insecure about everything they eat. No caffeine, no lunch meats, etc. Everything they do becomes about that baby. Even down to deciding whether or not to use pain management during labor. You don't really think about going home with the baby. No where in the baby books does it describe to you what kind of baby you may end up with. I would not Change Evie Grace for the World. What I am saying, is that it is hard. Breastfeed? Bottle feed? My child can't do either. If I breastfeed, my child will get too many fats and could have heart/liver/brain damage. However, now, my child can't even look at a bottle, much less drink from one. Tubes, Bags, pumps. Its all normal for us now. I look at pictures of babies. I hold my niece and tickle her belly. I hold kids in my Lifegroup. And I always find that I am shocked when I don't see/feel their G-Buttons. Weird, I know. I feel like this paragraph is rambling and I don't quite know how to tie it all in. Let me say this one last thing: We are all blessed to have such beautiful children in our lives. Count yourself blessed whether you have a sick baby, or a healthy baby. They are here for a reason. And even if God hasn't let me in on why Evie Grace has all the problems that she does, he still has his plan for her.

Trip #3 To New Orleans

The last time we were in New Orleans, they scheduled Evie for 2 follow up appts to return. We had to see her Geneticist and Hematologist. Luckily they were both on the same day. So we headed back down there, and made the long 6 hr trip, with Evie, again.

The ride down there was horrendous. I say this, not because Evie was overly fussy but because we ended up in the ER. Her Mic-key button came completely out. Thats right folks. I have never changed one, and I didn't have the right materials to do it, so Annessa, our nurse, couldn't even put it in. Praise God we were only 15 min outside of Alexandria when it happened, and my in-laws live there, so they gave us directions to the nearest hospital. Apparently, the hospital there, had no experience with G-tubes, because they had to get Annessa to put it back in. So we were there for 2 hrs, 30 min waiting, for Annessa to get the right type of syringe to re-place it. They didn't even have any clean, new ones to give us. Thankfully, the reason it came out wasn't because it was broken, but there wasn't enough water in the balloon to keep it in there. So, it simply popped out. Yes, she was bleeding and screaming. It was soo incredibly scary for me, and Annessa too, because we were afraid of losing the tract that goes from the Button to the Stomach.

Here is a little background information on the G-Tube Mic-key button. The button that is on her belly is attached to a tiny balloon that is filled with water. Apparently, eventually, the water can evaporate or something, causing the balloon to deflate. When it deflates it can come out more easily. The button on the outside and the balloon just popped out of her belly.

So, thankfully, the this was the reason it came out. However, it was starting to ooze fluids and leak milk, so we were concerned and ended up getting an X-Ray. Everything turned out fine. 2.5 hrs later, we were back on our way to NOLA. (with sterile water and the right syringes to replace it, should the need arise)


Round about Baton Rouge, she started screaming, and screamed the entire way to The Ronald McDonald house. (Which we eventually found, having gotten lost in the big city cause we misplaced our directions and couldn't find them!) We had to check in by 8, and we barely made it, but we did!

Once we got there, we all 3 breathed a huge sigh of relief. Whew! We had made it.

The RMH was a very pleasant stay. The people there were extremely nice and it really was like a huge family. They welcomed us in with open arms. The had tons of food to eat, and lots of places to visit. They even can take you to and from the hospitals, walmart, target, walgreens, etc. It was a 3 floor house, in the middle of downtown New Orleans. And it did have southern flair. I did find that there is not really any privacy because you can't eat in your rooms and there are 2 tv rooms, but no tv in the room. So, really there was a bed and thats it. However, it was great getting to visit with other folks, going through some similar times.

The next day we were to go to her 2 appts. We tried and tried to get a GI appt but they wanted us to come back in 2 weeks. There was NO way. NO way, I said. We arrived at the hospital at 8. So we got to the geneticist, and that went fine. He even tried to get us an appt, but they were "booked". There, we met with the dietician, and got the approval to try anything to get her to eat. Anything that is fat free, that is. So onward we went to her hematology appt. This, too, went fine. But we did find out that she has chronic Anemia and will be on iron for a long time, till it can get better. It may be an off and on thing. She also tried to get us a GI appt, but still, no luck. So they suggested we go to the ER, and then they would HAVE to see us. haha. So, we did.

We went and got checked in at the ER. By this time, it was around 3:00. WE had been at the hospital ALL DAY. And I was tired, Annissa was tired, and Evie was tired. But we prevailed and insited on seeing GI. It was here that we met the best Dr, so far of all. He came in with his shirt half un-tucked, sweaty, fat, and bald, and dirty glasses. He was very arrogant. BUT, he did offer us a solution. Something no other Drs have done. Everyone, so far, has said, that it would "get better in time". See, Evangeline has really bad problems eating. She will hardly take anything by mouth, now that we have had the Nissen and G-TUbe done. She retches, and wants to vomit, but physically can't. She refuses most foods, and only takes her bottle maybe once a week. And its only an ounce or so.

This Dr put her on a medicine that is regected by mainstream medicine. But has said, with other patients he has had awesome results. So we are hoping for the best. However, if it doesn't work, then he wants to do another med, in addition to the new one. This one goes to different pain receptors. SO, the theory behind it: if you can get rid of the pain associated with eating, then you can gain her trust in food, and she will learn to like eating again. This is our hope. However, if neither of these meds work, then when she turns 2.5 years old, and is still having difficulty eating, then they offer an eating clinic. It is 15 weeks long, and in New Orleans, and they will re-teach her to eat. It is a slow, slow process. But I have some hope now. Its not indefinite. I have a time line to look forward to. Yesterday, I learned that my child will not be 7 and still only taking formula, whereas before, this was my belief. We finally found a Dr who believes, like we do, that she is in constant pain when she eats.

So we left the ER, at around 7:00 last night and didn't get home till 1:30. It was a very long day. A long trip. But well worth it. If nothing else, I learned to never stop searching for answers for her. If these methods don't work, then we will go somewhere else. Atlanta, maybe, St. Louis. I won't stop till she is eating "normally" and is healthy.

So, to sum up: it was long, it was very hard, but I am sooooo glad we went. And I thank the Lord that it was THAT Dr that came to the ER, and not someone else who would have brushed us off again. It was truly a miracle. Lets pray that something works!

Advocacy for Those Who Cannot speak!

Yesterday, a young child lost his life due to a Mitochondrial Disease. I'm not sure about which specific one. But I know his mother, father, and sister know everything about it. This child is one out of many that have lost their lives due to a Mito/FOD disease. There are many wonderful charities out there that do research/education for childhood/adult conditions. To name a few, Susan G. Komen, Jerry's Kids, St Judes, Children's Miracle Network, etc. But how many of you have heard of Mitochondrial Diseases? Much less a place to facilitate funds as well as education on these types of diseases? There are 2 wonderful websites that I go to quite often for my own education and support with Evangeline's LCHAD (which falls under the Mito "umbrella" so to speak) The first one is a way to get facts and info as well as to be able to donate/be an advocate for these wonderful children who cannot, themselves, speak.

www.umdf.org

The second one is a way for family and friends of children with these disorders/diseases to connect. To share recipes, get support, etc. We are talking practical advice that the Drs don't tell you about. Day to day life living with a Mito/Fatty oxidation disorder.

www.FODsupport.org

These past few weeks I have had it on my heart to start being an advocate for not only my child but for others suffering from these disorders/diseases. We have been blessed beyond belief by being able to get a Nurse in the home for 30 hrs a week. So I now have more time and more energy to focus on finding me. While I do want to get a job, I also want to try and bring people information, clear, information about Mito diseases. The more people that are aware of the severity and the dangers that these particular conditions, the more likely we are to get a cure.

Perhaps if we came together, as a community of 1, we could work together to try and find a cure for not only my sweet Evie Grace, but for all children (and adults as well) living with these diseases.

What is my place in all of this? Starting next week, I am going to try and see if we can't raise awareness here in Shreveport. Denton, Tx had a 5k coming up that was for Mito. Perhaps we can find a way to have a 5k here? I am not sure. Many ideas are in the works, and God is helping me to figure all this out.

So, you may ask, "how can I help?" Firstly, you can pray. Pray for these kids, and their families that are dealing with this day to day. Secondly, if we can get a 5k here in town, get out your best sneakers and start preparing! Thirdly, know that while cancer, muscular dystrophy, cystic fibrosis, etc, are all known about, Mito diseases, while not as rare as you might think, are generally not. So begin talking about it!

There is also another need here in Shreveport. We have so many kids in the hospitals that need our support. Physically, mentally, spiritually. Not all kids are born with parents that are supportive. Some kids are simply left in the hospital for days on end. Other times the parent has other responsibilities and simply cannot stay with the child. Then, there is the need for the kids in the hospitals to feel safe and more at home. Again, you ask, "how can I help?" There are several ways. You can volunteer at Sutton Childrens, here in Shreveport and just do whatever is needed. You can also donate gently used toys or even brand new ones for kids of all ages. Then lastly, you can always pray. Pray for these kids as they are in an unfamiliar, often scary place, sometimes alone.

Thanks for listening and being a part of this chapter in our lives. Hopefully, we, together, can help minister to children and adults in this very practical and much needed way. Thanks again.