Atlanta

I will catch everyone up on whats been going on the past year:

Evangeline has a rare metabolic disorder known as LCHAD. She cannot process long chain fatty acids. In short, she eats a very low fat diet and must eat every 3 hrs so that her blood sugar does not drop. The reason she must maintain a strict diet, is that #1, if she does eat the wrong kinds of fats, it will cause her to become really sick to her stomach, and the fat could eventually build up around her heart/eyes, since it has no where else to go(she can't process it to use as energy, like most of us.) #2 since she can't use her fat stores as energy, she eats every 3 hrs and uses the sugar from those feeds as energy.

Evangeline has been vomiting lately. So much so, that she lost 8 ounces this past week. When an LCHAD baby vomits, there is a tendency for the blood sugar to drop. If it drops, she can become hypoglycemic: lose muscle tone,lose alertness and, among many other symptoms, it can eventually lead to loss of brain cells.

Currently, we feed her every 3 hrs during the day, and have her on a continuous slow drip of formula via G-tube at night. Our fear, is that she will vomit during the night and inhale her own vomit(this is known as aspiration). So, a few weeks ago, when she began vomiting again, we placed a call to her current GI, and his recommendation was to place a GJ-Tube, where she would get continuous feeds throughout the day. 24 hrs a day, Evie would be hooked up to feeding pump. This would stop the vomiting, because her tube would not only be moved from her stomach to the lower intestines, but she would get a very slow drip all day. This would also keep her blood sugar high, as she would be "eating" constantly.

HOWEVER, while these things are good, there are some definite complications to this procedure: She would eat nothing by mouth, it would impede her mobility, and it would hinder us from being able to take her out, anywhere.

In short, I am not ready to make this big of a decision.

So, after I learned what her GI wanted to do, we decided to make some calls to hospitals, clinics, etc. to find the best solution for her. We called Children's Houston, Children's Little Rock, Baylor, and finally, Children's Center for Digestive Health Care located in Atlanta, GA. Of all these places, only the CCDH would answer our questions.

Before making those phone calls, I asked God to show me a clear path. Not having any of my questions answered by the others, CCDH was the clear choice. One that God had chosen for us.

We are very blessed to have been able to find, through a good friend, that there are 2 Ronald McDonald houses in Atlanta. Praise God that they have the space for us, at the one closest to the CCDH. WE are also very blessed to have found out about Angel Flights and Pilots for Patients. They, if weather permits, are flying us to Atlanta, at no charge to us. I am so very thankful to the men and women who run these organizations. Without them, we would be stuck driving a very long drive, with a 1 year old who has special needs. This has all be orchestrated by God,and I want to give him all the glory! Everything seemed to fall into place.

I hope that we get the answers here that we need. Patrick and I have been fighting for Evie for a very long time, and are ready to see a Dr is willing to do the same.IF we don't find them here, I have full confidence that God will guide our steps in the right direction.

Thank you all for reading. I hope to update again tomorrow, in celebration of making it ONE WHOLE YEAR!!

Days and Nights

This is blog #37. I have not blogged in a while. It seems that most of the blogs I write are negative things, not positive things, however, it is my way of keeping the masses informed.

Evangeline has started throwing up. Because of her Nissenfundo placation, she is not supposed to do this. It all started last week, when she spit up. Now, a week later, spit up has turned into full fledged projectile vomiting. For her therapy, this could quite possibly be a good thing. She has started putting foods in her mouth, and started taking sips again, after a long hiatus. (She got a really bad cold and decided not to eat anything) Well, now she is well, and is has decided to try foods again. Still not enough to sustain her, but she is doing much better.

However, our problem lies in keeping her sugar up. Once again, now, after she vomits, I have to go back and re-feed her to keep her sugar from dropping. We also can no longer use the pump at night to feed her. There is always the fear that she will vomit on the pump, and then get it into her lungs, and we would not hear this happening because we are sleeping.(aspiration) So, for safety reasons, we now feed her during the night, to keep her sugar high, and still keep safe.

So, basically, she now gets bolus fed every 3 hrs 'round the clock.

Thankfully we do have Annessa. We have contemplated changing her to nighttime hours, so that she could feed her during the night, but then I would have to find someone to watch her during the day, while I worked. So, for now, I am waking up to feed her. However, we have already run into issues with that,too. Not only am I completely dragging during the day, but I was late on her feeds, 2 nights in a row. I woke up at midniught to feed her, then set my alarm for 3, and didn't quite make it. I woke up at 4:30. 1.5 hrs late!!! That could be REALLY bad for her LCHAD. I don't know what the right solution is.

We have contacted her "care team", as I like to call them, so that everyone knows what is going on.

I am thrilled at the prospect of her eating by mouth! Believe me! It is something that I have prayed for, daily for the last 5 months. I was even aware that this might happen, however, I did not consider the implications that would occur with her Nissen coming loose. With it comes a pandora's box of problems. For not just me, but her too: Because she isn't sleeping as well, she is tired during the day. She drags too!

I just thought my sleepless nights were over. Instead, I now have responsibilities: to both her, and both my jobs, that I don't think I can fully fulfill.
To top it off, I am trying to find a new therapy for her, one that will be more beneficial. I want her to eat. Bottom Line. I am looking for something more aggressive. Perhaps we can make eating a pleasurable experience, rather than a painful, scary experience? (If only I didn't like to eat so much! haha)

I have been on the phone all day with therapists, Drs, nurses, our dietitian, my sister, basically anyone that will hear my plight. I am willing to try anything to make her better, and it seems nothing is working.

Sorry, once again, for venting. I just fear that she will never learn to like food, because we keep shoving it down her.There is no easy solution. I keep waiting on the right answer, but I can't seem to find it. I love my Girl to pieces, and I will always love her. I am willing to go through this, and much more for her, To keep her healthy and well. If only life wasn't so hard.

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.