Wednesday, August 17, 2011

Welcome To Holland

This story was very fitting for our situation. SO I thought I'd share.

Welcome To Holland
Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack
your bags and off you go. Several hours later, the plane lands. The
stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of
going to Italy."

But there's been a change in the flight plan. They've landed in
Holland and there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books. And you must learn a whole
new language. And you will meet a whole new group of people you would
never have met.

It’s just a different place. It's slower-paced than Italy, less
flashy than Italy. But after you've been there for a while and you
catch your breath, you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has

But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there. And
for the rest of your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because
the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.


Yes, life in Holland is different than life in Italy. It is beautiful. Just in a different, less romanticized way.

In case you are wanting an update, here is what is happening, as of late:

Evangeline is now scheduled for therapy at Christus Schumpert, where her Drs are located, and where all of our favorite people are. She will be seeing Speech, OT, and PT. We begin there on Tuesday seeing all 3 They have informed me that the techniques they use for feeding issues are very closely alined with Baylor. No forcing, no holding hands, nothing of that nature. So, we are going to try our best at this venture that has been set upon us. We either do it all or nothing. We still have early steps, as an interventionist venue, but they are going to be more of a consult than, actual therapy. Of course, should things not work out at Schumpert, then we can call Early steps and get back with our therapists.

One thing I was concerned about, was the feelings involved. Everyone thinks they know what is best for Evie, and they all want what is best for her. So, it is hard for me as a mother, to make that decision. I don't want any feelings to be hurt. After you work 2 days a week with someone for 8 months, you get to know them pretty well. And I value what each and every therapist has done for Evie. I love them all. But there comes a time, when we have to try something different. A different approach. Its not bad, the other way, just time for a change, I guess.

I am glad that all 3 new therapists will be able to be on the same page, sometimes even sharing sessions. I think this will be a positive change, and the team approach will be best for Evie. Too, she responds better when not in the home. She needs that structured time, in a different facility. I pray that we are making the right choice.

Please be in prayer with us, that all will go well. She is beautiful, smart, and so loving. I just want what is best for her.

There are also some things going on, that I am not, at this moment, at liberty to discuss, concerning Evie's healthcare needs. Please pray with us to resolve these issues, with minimal discourse and accusations. We love you all.

Monday, August 1, 2011


Lately, things have been quite hairy for us. No new strides, really. Evie did eat 4 puffs today, but no baby food. And, She did put dog food in her mouth; not that I am bragging about that, by any means.

But tonight she is sleeping, in her bed, for the first time in a really long time. We never let her sleep with us, but what we had been doing, prior to tonight, since about March, was holding her all night long, taking shifts. So that we never really got to sleep in our bed. That was tough. But if she lays in the bed, then she rolls around all night, kicking, and hitting, which isn't comfortable either. So, we end up holding her all night. So, tonight, when she went down, in her bed, I felt like we have accomplished something. So, the score, in case you are keeping up with it, is Evie- 500 and Mom and Dad-7. We are slowly but surely catching up!

She will be 18 months on the 6th of August. And she still is not walking. Oh yes, she is cruising. Walking, holding onto items-couches, walkers, our hands, etc. But she will not walk on her own. I have the firm belief that she CAN but she chooses not to. She is a professional crawler.

We go to Baylor a week from today. They have a feeding clinic that supposedly is one of the best, that can hopefully teach me to teach her to eat. So please, keep us in your thoughts and prayers. I feel excited, yet nervous. I really hope that they can offer us some helpful tools in teaching Evie how to eat.

I am getting more and more frustrated, some days not even wanting to try to help her eat, because it is that frustrating. It is such a slow process. Lately, she has had a runny nose, and eating has been more than painful for her. She gags at everything, refuses, now, more than ever. And this is after intense therapy for5 months. She, at her sessions last week, was not rewarded because she did so poorly. It makes it that much harder to force her to try. Which we do. We still offer her foods several times a day, and encourage drinking as much as possible too. But she has been so moody lately, refusing most that we give her. SO it is a vicious cycle.

ON a more positive note, we have made it an entire 4 months at home, not going inpatient in the hospital. This is our longest run yet. We have had a few scares, but she has done very well, and for that I am both thankful and proud.

It has been hard, too, keeping her at home. People commenting about bringing her out, taking her to church, playing with other kids outside. But it just isn't always safe, and with the weather being so hot, she can dehydrate so quickly. We are thinking of bringing her back to church at the start of next summer, once we get past cold and flu season. She will be older, at an age that we can, perhaps, reason with.

But it is hard too, having her outside, when she crawls. She doesn't walk yet. So, she would be hot and miserable in my lap. Which is no fun for either of us. So we refrain. I'm not being overprotective. Believe me. I just know my baby.

I constantly have to remind myself to think of all the things she CAN do, instead of the things that she CAN'T. She is an amazing little girl. And her laugh is so contagious. I love that she isn't fussy when she wakes up. She literally wakes up laughing, or calling the dogs names, or blowing raspberries. You can't help but laugh with her.

Today, when I came home from teaching, she had the snottiest nose. She was grinning ear to ear, her knees were black form crawling, and she was in nothing but a diaper. And I got the best greeting in the world! She came and hugged me and said Mama- in her breathy little voice. My dirty little baby. It was the sweetest moment. A moment only a Mama can understand.

And the way Patrick is with her, is truly the biggest blessing. As I was cooking dinner tonight they were both laughing and playing. And I loved hearing every minute of it.

All of these little moments make those harder times a little easier. I am so thankful that she is still here, with me. SO I can hug her and tell her I love her, every time I think of it. She is my miracle baby.

Thursday, June 16, 2011

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.

Tuesday, May 31, 2011

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.

Wednesday, May 11, 2011

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!

Thursday, May 5, 2011

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.

Monday, April 18, 2011

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.