Life Is Just Not Fair

So, for the first time, ever, my 16 Month old baby finished a container of baby food. It was Pears, Blueberries, and Grapes. We began working on this jar first thing this morning, and finished up about 8:00 pm tonight. It was hard work. Emotionally, physically, and I even had to endure watching her vomit some of it back up. But WE did it. We.

Me, Evie, Patrick and Annessa. Her biggest cheerleaders.

I wish that I could record my child eating. But I think about it, set it up, and then later decide not to because these are NOT the times I want to remember with my baby. To have to distract her by any possible means, sneak past her unyielding arms, shove the food into a mouth that usually is either slammed shut shaking her head "no" at me, or screaming, not big fat tears like she is in pain, but screaming angrily as I try to get some sort of substance into her mouth. Most days I try not to think about it. But this is what we are forced to live day after day after day. So, after what should have been a day of rejoicing, upon further analysis of the situation, has come to this one, solid conclusion: My Year and a Half old baby just conquered a task (during the course of the day) that a normal 6 mo old would do in the course of 10 minutes. Yes, I know. It is monumental. It truly is. This is the day I was waiting on for weeks. Months even. And I hate myself right now for not being happy.

I am once again reminded of the big, ugly disease that is Mito. Mitochondria are the cells in your body that basically gives your body energy. When something is broken, or mutated, within the mitochondria, it makes it hard for some people to process Long Chain Fatty Acids (Like my Evie), Others it completely wipes the person out of the ability to do anything. Why is it, that I am taking Evie tomorrow morning to pick out some balloons to celebrate the life of a child who was prematurely taken by this awful disease? Because I WANT people to know that not every child leads a carefree life. I want people to know that Mito affects each patient differently. Some have muscle issues, some have cognitive issues, some have GI issues. It all depends on each person, and where/how the mitochondria is mutated. Sometimes you can't even know. Honestly, Not much is known about this disease, except that it is terribly hard to live with.

Its not fair that most people I know have healthy 40 week pregnancies, while others of us watched our children struggle to survive, because of being born prematurely. Its not fair that precious babies are lost each year, and the only disease most people even know about is cancer. It doesn't take long for Mito to rear its ugly head. And the sad thing is, that there is nothing you can do to prevent it. Nothing you can do to stop it.

Its not fair that my baby, MY baby, struggled and still struggles to eat. Eating is primordial. It shouldn't be a struggle. She didn't have anyone call her fat. She didn't want to be thin. But her body doesn't work properly. And, unless huge strides are made, it never will.

I am sitting here, tears streaming down my cheeks for all of these kids who are never given a chance. For those of us who rejoice in eating a whole jar of baby food. For those moms who were told your child would never walk. For those Moms who were told you child will never talk. And to think, we actually have it easy, compared to most. I am feeling incredibly empathetic and my heart aches right now. I don't know why God chooses us, but he does. He hand picks families out to care for these incredible kids. I always struggle to Rejoice in my trials. But I HAVE to, HAVE TO hold onto this scripture: "Consider it pure joy, my brothers, whenever you face trials of many kinds" James 1:2

Hopefully God, in his infinite wisdom, will one day reveal to me the whole secret to this that we call life. But until then, I will try to rejoice in my trials.

Never ask. Insist

Evie, at therapy today, ate over and above what she has been eating for the last several weeks, and for the First time today, I understand why. The therapist does not ask if Evie wants a bite. Our therapist simply says "Open your mouth, take a bite". Amazing how 6 words change my feeding technique at home. I usually ask "Do you want a bite?" and she will ALWAYS, shake her head "no". Well, duh, Mom, don't ask. Demand. not force, but Insist. It made a total difference. Throughout the course of the day, She ate 2/3 of the baby food we gave her. She also played with 98% FF turkey slices, and fed that to the dogs. She also took a sip of water, when I said "Take a drink". I was not mean. I did not make her cry. But I did insist and did not take "No" for an answer. It was not an option. Non-negotiable.

We are planning on taking Evie to Baylor's feeding clinic as soon as we can get an appt. But I am hoping that we can somehow manage to help her eat at home, instead of having to be inpatient at a hospital, more than 3 hrs away. The feeding clinic would teach her to eat, and essentially wean her off the tube. We are still a ways away from weaning, but today's experience with food was a huge step for Evie. And for me too. I have learned that if you don't make her eat, she won't. And, unfortunately, food is something she has to have to live. And if I don't force her, then she will always be tube fed.

Its not that I want her to have the love of food that I have, on the contrary, I just want her to eat to sustain her life. I feel that maybe, if she can eat a whole baby food container by th4 end of the week, then maybe by next week, she will be eating 1.5 baby food containers. And the 2, and so forth. It is the beginning of the end, I am hoping.

Please be praying for us, as tomorrow she is going to see an Infectious Diseases Dr about the Pseudamonis in her stool. Pseudamonis is a bacteria that causes ear infections, and trace amounts can be found in your stool, however, the amount that Evie has in hers is very dangerous. And from what I understand, if not treated, then it can get into your blood stream causing toxicity. Too, we are having an issue with lots of retching due to high amounts of bile in her stomach. So, we were told today that her Jtube may have gotten out of place. We rushed her to the ER, and thankfully it is in the right spot, however, that means that we now have to find out the reason why there is so much bile being excreted into her stomach. Please, too, keep in your prayers some friends of mine who went to Rwanda for a mission's trip. They left today, and will be back in a week. We love you, and will always keep you, the masses, informed.

Possible Big Changes

So, all of my life I have wanted nothing more than to teach and perform music. I have a degree in music performance. I currently teach a 31 min preschool class once a week, and have worked at a fabulous private school using the Montessori method of teaching. I also teach Children's music at a church in Greenwood, and help lead worship on Sunday mornings. Also, Patrick and I sing in the choir on Sundays at Brookwood. I love it all!!

However, today our home health nurse brought over some VERY interesting information about a 2 yr nursing degree. Apparently, I lack only 3 classes, (one of which is a Speech class that may be able to be substituted for another humanity I have already taken.) Then, I can get into clinicals, which would be for 3 semesters. Amazing. It requires less hours/time than going back and getting my Music Ed degree.

Here are my thoughts:

After having taught at a wonderful Montessori school, I see where I could have big problems managing a public school classroom. Music or not. I firmly believe in the Montessori method, and KNOW that it works. So, I don't really see me teaching in a public school where I have personally observed many problems. I also don't even want to put my own child in a public school. So why would I want to place myself in that situation? I have the deepest respect for public school teachers. Heck, my husband is currently one. However, that does not mean that I have the ability to teach in one. So, that being said, private school would be an option. But, as most of you know, music is highly specialized. There isn't often a chance to be a music teacher in a private school. Once someone gets the position, they often stay there until retirement.

So, this has been my desire all my life, so why change it?

Having a child changes you. Having a special needs child changes you. I have already learned way more about caring for the sick than most nurses know. I can place an NG tube, I can change out a G-Tube. I know how to work most pump systems, I know how to work an IV machine.I can administer meds, I know about special formulas, reflux, most metabolic diseases, and am familiar with many meds and their side affects. All of this any Mito Mom wil be able to do. But, I see what parents go through when living in the hospital. I honestly care about other sick kids. Not to mention I already am in good with the local hospital staff. I need a goal. Caring for Evie has changed my whole perspective on life. I am not only her Mom, but I am her nurse. I am her advocate.

I can be that for other kids too. I know many kids don't have loving parents like Evie does. I know that other kids get left in hospitals to fend for themselves and their nurses are their only caregivers. This breaks my heart. If I can help ease the pain of being sick, maybe I can make a difference, somehow.

Now, I am just thinking about all of this. I haven't decided to take the plunge yet. But if it is in God's will, then I want to. I am praying and seeking him about it.
Its hard to believe that all of my life's goals can change in a day. But, I can still do church choir. I can still sing on Sundays, and make a difference musically too. I am, obviously, a patron of the Arts. And I still can make sure that music is not forgotten. But I can be a nurse too. Please be praying with me about this. I am going to speak with an adviser next week. If God leads me to do this, then hopefully I can get into 2 of the classes I need this summer. Maybe then I can get into clinicals in the fall. One of the good things about being a nurse is that I can work the hours that I want and still care for Evie the way I need to. It is very versatile and flexible. From what I understand, clinicals is 2 days a week, 8 hrs a day. For 3 semesters. I can handle that. I am scared to make this change, but I think it may be good for me too. For a long time now, I have been in a rut and I have not been this excited in a long time.

But, again, still have not made any big decisions. I really do want this to be from God and not from me, so please be praying with me so that God's hand can lead me. Thankyou for your never ending support!

6th Hospital Visit

We just completed out 6th hospital stay since Evie has been born. That is including the NICU, so, I guess thats not too bad, considering how often other children in similar situations have to stay. Thankfully, this time was very short: a mere 3 day, 2 night stay. We are quite adjusted to life on the inside. We know the cafeteria hours, we know the rules of both the peds floor and the PICU. We have gotten to be very well acquainted with all 3 hospitalists. Its kinda nice walking into a big hospital, knowing she will receive the care that she needs. We even have a schedule that we follow while there. Evie and I wake up, play until 9. I let her play on her own while I eat a cold breakfast, then we meander down to the playroom, and I let her crawl around for a while. Then, we return, and she naps, while I attempt to find something decent to watch on TV. By then its lunch time! After lunch I usually nap, while holding Evie. Then, awaken to watch the most ridiculous show in the history of shows: Lets make a Deal. By then she usually wakes up and we play and read. It wasn't too bad this time. Really.

I just hope someday soon, our life won't be so, day to day. I feel like thats how we have to live. We never know what tomorrow will hold. Its hard to make commitments. Its hard to make plans. We can't go out of town. Heck, on Patrick's days off we usually end up staying at home to catch up with one another. Last week I intended to clean both the laundry room and our back porch. Neither got done. Its not for lack of trying, I assure you. Its just that hard with Evie.

I am so thankful to announce, if you don't already know, that we got medicaid back. It is such a relief. We no longer have to worry about enteral feeding supplies, or lack home health. Too, we don't have to pay out the wazzoo for this past hospital stay. It is just a HUGE sigh of relief.

Well, I am going to go to bed. In my own bed. With my 2 snuggly puppies, under my own sheets. I may just sink into the mattress.

Giving it to God

The past few weeks, medically, Evie has been fine. We have, however, had a lot of other complications to her care. She lost medicaid. So, that being said, we lost the ability to pay for Home Health, medical supplies: including her feeding pump, extensions, bags, syringes, everything we physically need to feed her. Evie currently takes nothing by mouth that could #1 sustain her and #2 keep her blood sugar high enough to not go into a metabolic crisis. So, these things are not an option. The only way we have of feeding her, is through the tube. Medicaid also payed for a few of her meds.

So, I have been fighting like the Irish to get it back. I have written letters, I have filled out all kinds of paperwork, and made numerous phone calls. To the point of exhaustion. We still have to wait 90 days before we hear anything. So far, its been 3 weeks, and we still no answers and no medicaid.

So, here I am, looking at all these supplies, that, day by day are dwindling down. Our Problem: they are running out and it would cost us about $2,500, a month for the supplies she needs. Not to mention, this month in particular, we need syringes which total about $200, for a years supply, and a new pump which is $900. So, this month , we would need $3600. For everything. Even if we could somehow find $3600 this month we would be in the exact same boat next month.

So, good news, is that we got a new Med Supply company, AKA, a DME, who is giving us the supplies we need this month. Including a new pump and syringes. They are writing letters to Blue Cross, who won't pay for these items, and praying that they can prove medical necessity, to get them to cover them, until we hear back from Medicaid. As the pharmacist said, we are basically "playing Russian roulette". Hopefully BCBS will cover it, and if not, we will hopefully get medicaid back and then they will retroactively pay for what we have been given.

Worst case scenario, is that BCBS won't cover it, and we don't get medicaid back, and we owe thousands of dollars back to the DME company who, in good faith, gave us the supplies. This would obviously devastate our family financially. Because not only would we have to pay for supplies to cover what we have already received, but then we would have to come up with the money for future supplies too.

I wish I were just worried about what school my child can go to, and whether or not she is eating enough fruits and veggies. I wish that what we are going through today, didn't affect our tomorrow, but it does. I seriously need to know that we are going to be ok. That my baby girl is going to have the supplies she needs, and that our family isn't going to have to give up everything to have them.

I can tell myself all day long, that God has this under control, but, honestly, I don't believe it. Thankfully, the issue of not getting supplies has been solved. And surely, SURELY, she will get medicaid back based on medical need. If I act irrational, know that it probably isn't you, and it is just a hard situation that we have found ourselves in.

God knows our every thought, and knows what it feels like to go though every struggle that we experience. In my head, I know this, but turning something THIS big over to him, is just not something I can do yet. The worst feeling in the world is not knowing what is coming. Not knowing how my girl is going to get the things she needs to LIVE, not just clothes and shoes, but seriously expensive supplies, is scary for me. I wish I could just say "here it is, God. our finances, our house, our cars, our everything. Take it. I no longer worry about it". But I don't know how to do that. As soon as I say it, I take it back.

Proud

Evie stood up today by herself, for the first time. Its odd, because even though she has been through SO much, she is very determined and very strong. She is right on track, according to her milestones. It would be easy for both of us to give up on each other, but we both keep striving to do better: to reach those milestones and beat the odds, no matter the circumstances. Evie just got out of a 2.5 week long stint in the hospital, that resulted in a big change for our family- getting the GJ Tube. And the day after she gets home, she decides to stand up. Maybe it doesn't mean much to normal families, with normal babies. But to me, after all she has been through, (getting a central line, vomiting daily along with many other GI issues, and being stuck in a baby cage for a crib, for 2.5 weeks) it is a big deal. It did not stop her from regaining the ground she had lost. Lets just say, tonight, I am a proud mommy.

Evie is different. Not because of all her medical issues, although that certainly makes her different from most kids, but because of her sheer determination. Perhaps she gets that from me. I strive to make her life better. I urge her to always be pursuing the next goal. We, together, work very hard to ensure that she stays on track.

That being said, our lives are much different after this last procedure- the GJ Tube. She currently eats 21 hours out of the day. I would have to imagine after eating that much, that she will not want to eat by mouth. She is getting to the point where i ask her to take a bite, and she will shake her head no. Not just move her head adversely away from the food/spoon, but she says "no". Too, not only is she "eating" constantly, but she is always attached to an IV pole. I feel so bad for her because she cannot move around like she needs to be able to do. Its hard for me as a parent, of such an amazing little girl, to watch her get frustrated because of cords that are wrapped around her body. The backpack the company sent to us is the smallest that they have and it is wayyy too big for her, so I am going to have to find something else to work, so that she can learn to wear it comfortably, and proudly at the same time.

We usually just let her explore her environment, and watch with pride as she discovers new things, but because of her leash (the feeding pump) I had to put her in a pack and play today, just so that she can play without me having to be right there supervising her every move, following her around with her IV pole. It worked for a bit, but I have a feeling that she will get bored pretty quickly. I pray that we can find a solution that works for both me and her.

She is tough. She has been through so much and to see her feeling so much better, makes my eyes water. I honestly never thought we'd make it here. I am hoping that with this tube, she can learn to like food, keep up with those milestones, and, perhaps most importantly, learn how to be proud of who she is.

My Secrets

Sometimes I think that if people were to see the real me, they may not like what they see. Sometimes I feel that even God doesn't like the real me: the person that keeps things hidden so far down, that no one, not even my close ones, know or want to know what is going on.

I am a woman, trying my best to figure out God's will for my life. I could have gone to Grad School, then on to get my Doctorate, but instead, I am a mother and a wife. In that order. I never meant it to be in that order, it just happened. Circumstances prevent me from putting my marriage first. That being said, sometimes I feel like even Patrick is at one end of a long, dark tunnel, and I am at the other. We only see shadows of each other.

Furthermore, I'm not even sure I am following God's will for my life. I am just floating along. We didn't plan Evie...We didn't pray about having her. I didn't pray to see if I should quit working. I didn't pray to start selling 31. These things just Happened...So how do I know I am following God's plan? I always thought I would be singing somewhere, or teaching music, or directing a choir, performing in some capacity, doing something along those lines. Instead, I sing at church and teach preschool 1 day a week for 30 min at a time. How do I know that is what God wants me to be doing???


I have heard a lot of compliments lately about how brave I am, about how strong a woman I am for dealing with a special needs baby, but the truth is, that I didn't ask to be that way. I don't try to be strong. I just do what I have to do. Any mother in my shoes would do the same thing. I don't pretend to know everything about my baby. I research and search for answers when I need to. I have given up my career for her. But honestly, any mother would do that, if they had to. And most do, in some way or another. I am not special. I was not given Evie for any specific reason, but she was a gift. I will never take Health for granted, and I have learned a few lessons over the past year, but it doesn't make me any more of a mother, than anyone else.

As a matter of fact, I feel like a terrible mom sometimes. I have help taking care of her, when there are many kids out there with MUCH worse conditions, that only have their moms. I frequently take time outs, where I will leave her with someone else so that I can have some "me" time, where as other moms are incapable of doing such. I often take naps when she is napping. I am incapable of keeping a clean house and hot, healthy meals on the table every night. Laundry is frequently piled up. Sometimes I wish I could be teaching music, my passion, and instilling that in someone else.

Evie deserves a Mom who can do all of these things, and instead she is stuck with me, for better or worse. As is Patrick.

I struggle with the "should-do's/ should-be's". We don't have a big fancy house on Ellerbe. We, as a matter of fact, have a lower-income Middle class home, that is mostly filled with love and second hand furniture. We have clutter, that I am embarrassed about. My husband is a procrastinator and a pack rat. And I let him be.

We went to Atlanta this past week, and there I met so many wonderful people who have much worse problems than we do. They are saints. Me? I'm just a struggling Christian, who has much room for growth.

Our care plan for Evie is pretty much the same since ATL. We are going to try her on a different med, and if that doesn't work, we will do another med, that isn't FDA approved, and THEN, if that doesn't work, we will have to resort to the GJ Tube. However, I am much more comfortable with this having seen the new GI. His plan is one that is much more feasible than our last GI, who claimed that we would have to feed her almost 24-7. His plan is to do 12 hr feeds at night, and then 3 off, 3 on, 3 off, 3 on and so on, to where we would still take her to therapy, still let her eat by mouth, and most importantly, if we didn't like it, how it was working, we could take it out, no problem. No questions asked. He spent 45 min in the room with us, talking about our options, and the procedure (Upper GI) we were going to have done, which I LOVED. After returning, he spent an additional 45 minutes explaining the results and the meds we were gonna try. I feel much more comfortable with him, than the GI from NOLA. I hope I made the right choice.

Most days, I love my life. I love being a Mommy and a wife. I love selling 31, and I love my 30 min a week teaching. But some days, I feel like its not enough. I am not fulfilling my life long dream of performing/singing/songwriting/conducting/teaching. It feels like I am just floating right now. I am hoping God will reveal his plan for me and I am hoping that it has something to do with music. But most days, I am not so sure. Its probably a huge lack of faith on my part. But I am going to figure it out one day.

For now, I will continue to do the best job I can with Evie, and try not to sink into depression. I will be a wife and mother, in that order, some day, if not today.
I will have that house on Ellerbe. I will keep the laundry folded and put away. I will have brand new furniture that fits my style, and a clutter free front room. I will have hot, healthy meals on the table at supper. And hopefully, I will be, as Brother Mark used to say, the best Christian that Evie knows.