eeg and more on that mri.

so last wednesday shilo had her mri, with less than stellar results.  and this week she had a 48 hour eeg.  we had been waiting on those results as well as the mri from a year ago to compare to in hopes of learning a little more about the changes in her brain.

our (awesome, amazing, above and beyond) neurologist came to see us wednesday before discharge, and took my husband's cell phone number (since we are visiting family) so that she could call us today, the day after thanksgiving, with results of everything.
while i had no hope of that before she said she would, since it was a holiday weekend, as a parent with tons of possibilities rolling around in my head, i was beyond grateful that she said she had already planned to go in on friday, and would make it a priority.
she called at noon today.  she had everything,  aside from the mri to compare it to. as i suspected, shilo had lots of short episodes during sleep.  this means we will increase her seizure meds again and see if she doesn't start sleeping a little better.  the thing i was unsure of, perhaps her seizures were coming from the temporal lobe now, instead of the frontal lobe where it has always showed before.  but, the seizures did not change location in her brain.
so that mri.  let me start with what we know (which isn't much).  shilo's mri showed bilateral temporal lobe stenosis (scarring) and atrophy.  both of these things are really common in geriatric patients with alzheimer's.  they are also not unheard of in patients (generally teen and older)  having temporal lobe seizures, although they are almost always unilateral in this case.  but, in a two year old, well, it's just not really found.
had she been having temporal lobe seizures, there was a high possibility that she would have been recommended for a temporal lobe lobectomy.  and i don't know that, that's completely off the table.  but at this point we still have to figure out what's causing it.
so please keep praying with us for answers, and that there would be no more changes.  brains are pretty important.  and your temporal lobe takes part in lots of functions.  the idea of her little personality changing in any way is very sad.  we really like her, just the way she is.

our sweet snuggle monkey.

and, test.

so last weeks appointments are over.  abigail is now officially able to eat tree nuts and peanuts again.  matter of fact, we have nothing we have to worry about food wise.  it's weird, and i still carry the epi-pens with me.  someday i'm sure i'll be able to let go of that, but they have been a part of our 'leaving the house bag' for around four years now.

shilo's mri results were less than stellar.  we are still awaiting all the details that will be emerging over the next few weeks before we share anything big.  her neurologist is waiting on a copy of the films from her mri a year ago to compare.  she is also waiting on the results of the 48 hour eeg that will take place from tomorrow until wednesday.  while i am always hopeful they will capture something, this time it's of dire importance to figure out what to do about her abnormal mri.  so please, please, pray that they get good, clear information so we can know where to go from here.

i'll leave you with some pictures from abigail and i's date today so that she could have some mama time before i'm gone for a couple of days.  and a few of little being her silly self.

'papa, will you take a picture of our snuggles?'

snowman cookie.

drinking tea.

building with jenga blocks.

jenga blocks become props for 'little house on the prarie' play.

breaking up stir sticks for the ingalls to have a 'feast.'

'take a picture of me with the cabin we built.'

i love these hands.

'let's pretend to sleep, but don't close your eyes.'

'a perfect animated story telling face.  this was not posed.'

reading some comics.

reading a book she found.

'someone left their bookmarker in it.'

home, helping me ice our carrott cake.

how shilo helps in the kitchen.

we make tasty cream cheese icing.  also, check out the little one adoring the big in the background.

even this girl likes it.

at the risk of sounding dramatic.

my big has a genetic disorder that is highly variable.  it is also considered progressive.  so i would like to start this post by saying, at this point, she is extremely mild.  matter of fact, overall, she's a pretty typical 4-1/2 year old.  nothing about her would stand out to the common onlooker.
we are thankful for this.  we know quite a few others who are dealing with much bigger.  much scarier.  and who's variable has landed them on the more severe end of the spectrum.  i do not take lightly that we are dealing with very little as far as nf goes.
that being said, i thought i would share our mri results.  it's taken me a few days to process all of this, and really wrap my head around what i'm feeling.
big had her mri on tuesday.  she rocked it.  no really.  she was so great the whole time.  completely unphased by all going on, despite the fact that she does not remember the last one that took place two years ago.  she woke up asking for french fries.  when one has to be put to sleep, run through a machine, and has a picture taken of their brain, they get french fries.  judge all you want.
and like always, despite the being told that results would come in two to three days, i called the next morning to hear them as soon as possible.  great news.  no brain tumors.  not as great news, her mri was abnormal.  she's fine.  nothing huge.  nothings scary.  just an abnormality that is common in nf.
so here's where i may start to sound a little dramatic.  forgive me.  i'm just trying to learn to deal with a disorder that can be quite mean.  two years ago in april, our big had her last mri.  we had hoped to not have to do any again, ever.  more realistically though, at least five years.  some people do them annually even if their kids have nothing going on.  we aren't into that.  especially since her masto puts her at a much higher risk for an anaphylactic reaction to sedation.  anyway, her last mri, clean.  beautiful.  everything inside looked as it should.
this mri.  she had what are known as ubo's (unidentified bright objects) on her brain.  they are mostly harmless.  they have been linked to lower i.q.'s, learning disabilities, and behavioral issues common with nf (adhd).  somewhere around 70% of people with nf have them.  our daughter has them now.  and this means, her nf is progressing.
it's a progressive disorder.  it's unpredictable, and what she has going on now means nothing about what she will have going on in a year.  but, i have to assume that most parents feels this way a little bit, we had hoped abigail's wouldn't progress.
i know.  that sounds ridiculous.  so now we are sitting here trying to calm ourselves back down and remember to be thankful for the day today.  today, we do not think she has any tumors.  and that's where we need to live.  but those stupid ubo's.  they're there.  and they are another reminder that she has this stupid disorder, and that is gets worse over time.  and whether big things, or small things, it will affect our daughter.
and so, i guess i will continue to sound dramatic for the time being, as i accept that we are going to continue to see things come up as a result of nf.

best. papa. ever.

i'm pretty sure i married one of the most amazing men alive.  at very least, the best papa ever.  abigail will grow up with memories of her papa on the floor playing with her little characters, dollhouse dolls, and little people items...even if it is the cause of her large amount of potty and body function jokes.

and i won't go into all of everything until we know more, but we have a definitive that shilo is having seizures, and an upcoming 24 hour video eeg.  we also have an upcoming mri for big (they both saw the neurologist today).  i'm glad for all these test, we were starting to get bored with our lack of appointments and such. ;)

...and the saga continues.

yes, my friends.  it's another chapter in our hearing aid story.  if you haven't already read about it you can go back and read the first and second parts to catch up.  the piece of paper had now been halted to prevent someone from paying for something that should not be paid for.

in my first post i mentioned that the doctors thought that bone conduction hearing aids are what would work best in bringing shilo some degree of hearing.  so i found a local doctor who said they could do them (if you remember, she can't do them-at least not what is needed for a very small child).  however, shilo's left ear is slightly better than her right.  she still can't hear us, but the testing showed less loss in that ear.  so the doctor we saw locally said she thought she could bring shilo's hearing up into the normal levels.  normal.  i was SHOCKED.  shilo has what is called mixed hearing loss-so it's both conductive and sensorineural hearing loss. from what i understood, with the degree, and the mixed loss, we would never see normal with her hearing.  so we had a mold made of her ear and the hearing aid was ordered.
monday we had a follow up e.n.t. appointment for post ear tube placement.  we knew they would schedule some sort of imagery testing to see if the conductive hearing loss is something that could be surgically repaired.  and we knew he would be the doctor that sent the referral for her bone conduction hearing aid.  so i asked him about the bhe (behind the ear) aid we had ordered.  he said, 'if you try to bring her hearing up to a normal level, it will be extremely painful for her.  she will never have normal hearing.  she needs baha (the bone conduction aids) on both sides.
i left monday with my head spinning.  two different e.n.t. doctors, and an audiologist at riley all said bahas.  one audiologist said bhe.  i talked it through with jason, and a few other people, and still just felt really uncomfortable with what our best choice was.  do we walk away from the person giving us some hope of normal hearing?  was she spewing rainbows and sunshine onto a situation because that's what she does?  was she choosing the bhe aids because she would benefit monetarily if we chose to go with those (the other three specialist will not be doing her aids so they gain nothing from whatever our choice is).  i don't want rainbows and sunshine.  i want the truth.  and if the truth is that a bhe aid will bring her to the same level of hearing as a baha, then why would we go with a hearing aid that is tons more work (remoldings every time her ears grow-which is a lot on a small child.  feedback issues.  so much more work) instead of the one that we can use and will stay the same as she grows.
so at the end of the day i decided to send an e-mail out to my father in law.  he's an audiologist.  he works at a v.a. hospital, which is obviously different than pediatrics, but he's smart, and i know he will give it to us straight.  and he did.  it turns out that we are going with the baha aids.  i wish i had known in july what i know now.  i would have already had a referral and our appointment would have been much earlier.
so it looks like shilo may get to hear by her first birthday if all things pan out well-and she will have an mri in early september to see if they can figure out what caused the conductive hearing loss.  i also get to figure out how to make a diplomatic attempt at saying to private audiologist-what were you thinking?  because two e.n.t. and two audiologist have all said the same thing-the opposite of what you are telling us.  are you going to continue to stick with what you originally said or do you want to change your story?
i know that some doctors either believe that patients are uninformed or think that patients should take what they say as 'word.'  we believe that information and intelligence are available, and that we will make the choices we believe are best for our daughters, even if it means fighting with a doctor who made a really poor call.

I'm doing okay.

Really I am. And by okay I mean I haven't fallen apart, despite the fact that I probably have the right to. And I'm fine. By fine I mean that I have held it together when people have said trite things that make me want to punch them and tell them to come back and talk to me when they have experienced something outside of a "healthy child." And the stomach flu doesn't count.
Perhaps it's because we had Abigail's IFSP today. Perhaps it's because I STILL haven't heard back from the doctor and am beginning to get pissed about it. And then just maybe it's because I feel like the world is completely outside of anything I can control, but I'm having a rough night.
I looked at my daughter tonight and wondered what kind of battle was waging inside her sweet little body that I couldn't see. I seem to swing between peaceful and scared to the core of what might happen over her lifetime...whatever the length of that might be.
There are some probably "little" things that have followed the large blow I felt when I stood listening to the nurse read the MRI report to me. Emotionally I felt like it was a blow that just immediately leaves you lying on the ground unsure if you really want to get back up again or just try to do life from the fetal position you are in.
And then as you are lying there, trying not to think of the pain you move the wrong way and it send that surge through your body. There was first the realization that even though Abigail loves to dance and play basketball, neither of those things will be long term options for her. And then came the moment that I was told that Abigail would qualify for a Make-a-Wish trip one day. It's one of those charities everyone knows about, and has an immediate reaction when they think about kids who get to go on those trips. Not a bad or good reaction, just a reaction. And it's not one where you think, "I hope my kid gets a trip like that someday."
But really as I sit here tonight I want to scream the pain out. I want to yell at the top of my lungs "Go to hell NF. I hate you and everything you do to people. I hate the pain, the uncertainty, and the havoc you reek on children, adults, families, and lives." But NF can't hear me, and I don't want to wake up my sleeping husband and daughter. So instead I sit hear with a heavy heart wondering if the pain will ever decrease. I have my doubts.
I will leave you with a few thoughts. I love the story of Shadrack, Meshach, and Abednego (it's in the book of Daniel 3 if you want to check it out) and the words these men speak as they are getting ready to be destroyed. I know people often have questions along the lines of how do you continue with a faith that "allows" something like this to happen. And it might be easy to walk away, and to put my hope and faith in doctors, medical research, and a cure. None of those three things are bad. They just aren't where my hope comes from, and if I begin to put it there then I am bowing down to something other than my God. So here are the words of these three men:
"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and He will deliver us from Your Majesty's hand. But even if He does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up." Daniel 3:17-18

I'm certain I have said this before, but no matter what happens with Abigail's NF, I will not bow down to anything other than the One who can save her. Because even if He doesn't save her from the NF here on earth, she will experience life without pain, tumors, or any of the other labels doctors have given her. She will one day be able to run, jump, dance, and walk with no struggles. She will some day be free.

Leaving you with this song to go and listen to. It goes hand and hand with the verses above in my heart (it's on youtube so I'm not endorsing the video in any way).

Praying for monkey.

The other day I heard Abigail coming down the steps. The next thing I knew it was quiet. I peaked around the corner and she was sitting on the step rocking her baby and patting her back.

I have an incredibly compassionate daughter. I am often blown away at how sweet she is with her baby dolls and stuffed animals. She sometimes even hugs and kisses inanimate objects (like our blue car). She is a little girl with a very big heart.
She also has begun to pretend all the time. She cooks when we cook. She likes to dress up, wear a purse, go shopping, drive her car, and about a million other things. It's fun to get to see your kids act things out. It gives you a small glimpse of how they view life. Sometimes I see things that make me realize I might be doing okay as a mama. Sometimes I get a reality check and realize I have some things I need to do differently.
In general Abigail is just becoming more aware of things. She is interacting more, and remembering (and retelling) more. This past week she was sitting on the potty and looked down and saw a few of her cafe au lait spots. She asked, "that?" I told her it was called a cafe au lait spot, but we just call them her chocolate chips and pretended to eat one. She later showed her papa and told him it was her "chochit chip." There is both joy and sorrow in having her realize she has spots on her. She is not self-conscious yet, so it's nice to tell her about the spots before she is old enough to experience the teasing from them. It's sad to know it is something that she may not always be comfortable with. I hope and pray that we tell her how beautiful she is enough that these spots won't matter some day.
A few weeks ago we got a hand me down cozy coupe car from her cousins. She LOVES it. However when she got in it the first time and told me she was going to the doctor I felt a small sting of pain. She is really good at pretending with her doctor kit. She knows what everything in it is for. It's pretty cute most of the time (although if you are her patient it's a bit more like getting beat up). I just can't help but think at the same time that if it wasn't for the combination of asthma, NF, and the incredible amount of time she spent with "common illnesses" the first two years (it seems to have slowed down) she would not be as great at it. I mean really, what two year old knows what a blood pressure cuff is, and that it squeezes your arm. But she is pretending what she knows. Driving to the doctor, and getting checked out.
But probably the biggest blow has come this past week. As we continue to wait (impatiently) to find out more from the doctor about the tumor in her leg, she continues to have a little bit of pain and an inordinate amount of itching (very common with NF, and NF tumors). She has started telling me that her stuffed animals and baby dolls have boo-boos on their leg or that they itch. It is such a "normal" part of her life that it is acted out in her pretend play. There is nothing that tugs at a parents heart like seeing their child act out their medical issues.
Like I mentioned above though, there are moments in her pretending that I think we might be doing okay as parents. And even though their is sorrow in watching her pretend her monkey has a boo-boo on his leg, I can't help but overflow when I watch the scene unfold:
Abigail, "Muhnee boo-boo, leg. Swatch."
Mama, "Monkey has a boo-boo on his leg and it itches."
A, "Uh-huh. (Hugs monkey to her) Sowwee muhnee boo-boo. (Kisses him) Pway. Jeyuh, boo-boo, swatch, amen."
Sometimes she asks me to pray for her animal, but most of the time she does. And whenever she is in pain or extremely itchy she asks Jason or I to pray.
So even if I mess up lots as a parent (and I do), I am so glad that the thing she has picked up on is that we can always go to Jesus. He is the author and perfecter of my faith, and He is using a sweet two year old to grow it in ways I never would have imagined.

Thankful for the trials of life that draw me closer to Him,

and again why we pray.

Okay first of all if you haven't yet please read "Why we Pray." It proceeds this post and will help you follow the whole story a wee bit better. I'll wait here until you get back.
Welcome back. So the rest of the story goes something like this. We first found out about NF in May of '09. Abigail was mostly diagnosed (this is a little complicated to explain) in October of the same year. I'm not sure how long it lasted, but I spent many months...probably close to a year in a sort of fog. Every new spot, cry, and bump on her skin sent my head into a spin. I sat worrying about all of the worst things that could happen. I'm sure it didn't help that in that time period she was also diagnosed with asthma and tested for leukemia. None the less, I felt like someone had screwed up my whole world. And like the Israelites, even after seeing God touch my daughter's body, I still wavered crying out to God, "Where are you? Did you bring me into parenthood only to take the little girl you blessed me with in the first place?"
But somewhere in there I began to not just speak it, but really believe that God was still who He said He was. He was still good. He didn't give this to my daughter. It happened simply because of the sin that is in our world. When man fell in the garden, death, disease, pain, and suffering were introduced into being. Fast forward quite a bit and you can look around and see the effects of sin coming into the world. One of those effects is the disorder neurofibromatosis.
Somehow though, almost miraculously, over the last six months I have found peace. I have begun living again, and even with lots of crazy things still happening, new little things coming up, and three MRI's since June, I have been fine.
The honest truth is that it's still painful. Not knowing how much suffering my child will endure, but knowing that she will most likely experience pain is grueling. But over the last year and a half God has strengthened me. I feel like I can endure whatever comes because I know He is there.

"The Lord gives strength to his people: the Lord blesses his people with peace." Psalm 29:11

He also does all things at just the right time. If they had found any tumors in the beginning of our journey I would have possibly had a mental breakdown. That is not an exaggeration. But on Wednesday when we got the preliminary results of Abigail's MRI and found out that she has a tumor I felt strangely peaceful.
I have spent time grieving. It is sad to me that the pain she is experiencing in her leg (and most likely her back from compensating) is because of something being in her leg that shouldn't be. The incredible itching she has in her leg is also from it. But I have not for one moment questioned God. My faith has not wavered.
We still do not have a more precise statement from the doctor yet. But it is most likely that the tumor is congenital. It has always been there. It has been the reason for lots of little things going on with her.
I have sat over the past week of knowing and wondered if we hadn't prayed if she would have ever walked. I don't believe Abigail's healing rest on my shoulders, and hope that it doesn't depend upon my faith (or she is in trouble). I do believe that our God is good and wants to hear from us. He wants us to pray, ask, talk, and cry out. He doesn't always answer the way we had hoped. But He does always answer. And for that reason we will continue to pray.

*Just so you all know we have waited to share so we had time to process before going completely out there with all of it. We still do not have all of the information yet, and will not share things until we are ready.*

Please join us on our knees for our daughter,

Why we pray.

At nine months old Abigail couldn't/wouldn't put weight on her legs. If you held her up to a standing type position she would stick her feet straight out. If you put her in the exersaucer they sort of just dangled. We had just found out that she had NF1. I had known for a while she wasn't putting her legs down like most babies did, but kept it stored away for "just in case." So I mentioned it at her nine month check up. The doctor thought it constituted further investigation, and ordered an MRI. Insurance denied it.

So at this point we were stuck trying to figure out what to do. Our pcp could appeal to our insurance company. We didn't have an appointment with the NF clinic until October (this was July). Or we could apply for a state insurance specifically for children with special needs that MIGHT cover it. I felt so helpless to figure out what was going on with our baby.

I was reading in James one night and had to stop at this part:

"Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." -James 5:13-14

I immediately felt like God was asking me to be obedient to His word. I didn't feel like He would or wouldn't heal her. Just that His word said to have the elders pray. So we did. And a few night later our pastor and his wife and children, as well as two of the elders and their families came and layed hands on Abigail, anointed her with oil and prayed. I could feel God moving. I didn't know what He was doing, but knew that He wanted to show Himself.

Before they all left our pastor's wife held Abigail up and she put weight on her legs. I was astonished, and wasn't certain if I believed it. I couldn't get her to do it again and thought it was probably just a fluke.

The next day we were playing at a friends house whom I had told all of the previous too. I was showing her how Abigail couldn't put weight on her legs, but instead all she kept doing was standing on her legs. I was nearly in tears as I watched it happen.

Over the next few months Abigail began to crawl finally, pull herself up, and eventually walk. With each new milestone I never forgot that God healed her. We didn't know if there was a tumor somewhere He had healed, if the leg issues were from her low muscle tone, or if we would ever know what He had healed. We simply rejoiced at our God's ability to perform miracles. And I still look at her sometimes, standing, dancing, jumping, and (making an attempt at) running and know that God did something, and has something awesome planned for her life.

There is more to this story....so you will have to stay tuned.

What do you ask for?

As I sat reading in Psalms this afternoon I could feel my heart stirring. I love the way David writes so truthfully; how his emotions are so much like mine floating up and down with each new twist and turn of events. I also relate because I express my thoughts and emotions much better by writing them down.
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."

What do you pray for you children?

As the day draws near...

I've been trying to write a post all day. But all my thoughts just keep getting jumbled together and not making sense. So I erase it all and start over, only to find myself not being able to say what I'm trying to say. So here's the fifth try today.
I am starting to feel the "just before MRI" nerves kick in. They make me want to call and cancel the MRI. They also make me want to demand that they give me the results that day. I got "the" phone call today where they go over the list of Abigail's diagnoses and special needs, arrival time, and when she can no longer have food and drink beforehand.
It feels MUCH scarier this time. Because before we didn't know about the possibility of mastocytosis; and she may not have had it then. And now, the whole time she is having the MRI I'm going to be wondering if she is having a reaction, going into anaphylaxis, and if we will end up in the hospital for Thanksgiving.
I think I asked the lady three times if they were doing things differently because of it. She assured me that she was the first appointment of the day so they could do something (I can't remember what it's called) to take the extra precautions. But really is that supposed to make me feel better. So you guys are ready should she go into anaphylaxis, but can't we just avoid that.
But Wednesday I will get up and drive to Riley, do the procedure, and we will go to McDonald's afterward. She will be her almost normal self by the afternoon. I will feel relieved it's over, and anxious to get the results. And of course I will most likely have to wait until Friday because of Thanksgiving.
And from there I don't know where we will go. Because I've never had anything but good results. And I don't know what to expect this time. I don't know how to react if they find something. I think I know where we will go from there based on my countless time spent researching, but in reality how do you decide between a risky surgery, chemo, or "wait and see" for your child; knowing that all three hold huge risk. And if she doesn't have one, how do you rejoice when your other NF friends are dealing with optic gliomas, plexis, and migraines in their children.
It's pretty incredible how sitting in the doctor's office on May 6 of 2009 totally changed my life. I have amazing friends I would never have known. Thank you Tara, Cindy, Bridget and Vicki. I have learned so much. During Abigail's re-evaluation the other day I answered a question they asked and the woman looked up at me and told me I sounded like a doctor. Yes, I am becoming a wealth of knowledge about many things medical.
And some days a small part of me wishes we weren't here. It wishes that when Abigail is pretending she wasn't so good with her doctor kit. It wishes that our money and time could be spent on driving to Indy for fun things like the Children's Museum, and Connor Prairie.
But then Abigail wouldn't be Abigail; and that thought makes me sad. I wouldn't have met the woman I mentioned above; and that thought makes me sad. Yes it is both the beauty and pain of living in Holland that I am feeling right now.
You can of course feel free to pray that I sleep well the next few nights, that the doctors extra precautions are the correct ones for keeping Abigail from having any sort of reaction, that results come quickly, and that we continue to find peace that surpasses all understanding.

Taking deep breaths,

A lot of things jumbled in one post.

It's been a week filled with middle of the night nebulizer treatments, phone calls to figure out appointments, and the dreaded re-evaluation by early intervention (called first steps in Indiana). It's also been a week where I have spent much time thinking, thinking, thinking....because that's what I do.
Why is her asthma so bad? Is there something going on we can't see? Why is it only at night time? Am I ever going to sleep through the night again? And the inevitable call to the pulmanologist I have waited too long to make only because I don't want to have to increase her medicine, or make another Riley trip since we have three in the next three weeks. But after the emergency room trip earlier this week for it, and the lying awake for an hour after her treatment last night...waiting for another attack, I decided for both of our sakes I should call.
I also tried to be "smart" and make same day appointments a few months ago. Turns out that despite the fact that I checked (TWICE) the dermatologist appointment is not at the same facility as the follow-up with the speech and language pathologist; and of course there isn't enough time to drive from one place to the next...so two trips it is.
And lastly our re-evaluation. It's such a bittersweet things. I'm not certain if all states are like this right now, but ours is really cutting back on services for children with special needs. We know that Abigail's diagnoses qualify her for services automatically. That doesn't mean that first steps will willingly give them to us. By the standards of the state Abigail has never technically qualified. If the standard says children should walk by x age, and the child is walking by dragging one foot behind them, they still are considered as walking. Yeap. Pretty ridiculous, but that's the way they roll. So the two incredibly kind ladies who have evaluated her before, came and did so today. And for the first time ever: she qualified, based on her lackings in areas. It's great that I didn't have to call doctors to get orders written so that she would get what she needs. It sucks that her lacking is becoming more evident. I do have to counter my "damn the man" speech here with the fact that the providers (her therapist) are not the issue. They are phenomenal. The bureaucracy part is where it gets messy.
So this afternoon I sit. Waiting. Waiting on doctors to return phone calls. Waiting for Abigail to wake up from nap. Waiting for her MRI next week. Waiting for results. Waiting to find out if she has mastocytosis. Waiting for my head to stop spinning so I can send out e-mails to her providers. Waiting to hear when we get to add occupational therapy to our mix. Waiting on life to return to normal...and by normal I mean?

Taking some me time,

The valley of the shadow...

I think everyone knows the verses from Psalms that my title refers to. They are read at funerals. They were even referenced in a nineties rap song. Jason and I both cringe when they are read at funerals. Neither of us want them read at ours. However they are some interesting verses. And in reality they don't only refer to dying, or being on the brink of death. There is a lot in those six verses.

"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23


Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.

Enjoying the green pastures and quiet waters,

Ten things not to say.

I am the mother of a child with special needs. I talk to other parents of children with special needs. There seems to be an epidemic of sorts. A worldwide issue of things being said to parents about their special needs children; and not just general things. Things that should not be asked or said; especially in the presence of their child.
I will start with a few small lessons. When you meet a family, and they have a special needs child, assume the child can understand everything you are saying. Address the child if you want to know how they are. Think about what you are saying about them, and in front of them. Chances are, even if you think a child appears to have a profound disability and can't understand you, that they can.
Secondly do not refer to them as retarded. Never ever. Don't joke about someone being retarded, something being retarded and so forth. The word is hurtful, especially when it has, or will be used as a word to make fun of the child. And with that remember from this post that it is best received to use people first language. They are a person with a disability; not a disabled person.
With all of that layed out there this list below was a collaboration of my friend over at The MacDonald Family and I. They have a beautiful little girl with a disorder called Rett syndrome. I have enjoyed reading about her perspective, seeing her incredible faith, and the kind and encouraging words she has spoken to a mama who still feels a bit like a rookie wading through some of the special needs stuff.

Ten things NOT to say to a parent of a special needs child.


1."What is her life expectancy? Is she going to die from it? What is the prognosis?"
This question is one that is hurtful. Even parents who have a child with a fatal disorder aren't usually up for discussing their child's looming death with complete strangers. It also takes away the joy that we work each day to find in our lives.

2. "What's wrong with her?"
Perhaps this is more semantics, but I can think of about one hundred other things you could say that would feel kinder. Whether a child has something obvious like down syndrome, or just some devices that you've never seen before and are curious about, find another way to phrase your question. What does that device help with? What is his diagnoses? Can I ask about your child's special needs? Because, as a mama I don't feel like anything is "wrong" with my daughter. She is a normal child who just deals with things that aren't typical.

3. "If you had known would you have had an abortion/adopted her?"
I feel like this one is painfully obvious. But is has been asked of me (I wrote about it here in my what not to say to adopted parents post). And yes, my friends with biological children with special needs have been asked if they would have aborted. Don't say this. It's rude, unkind, and unthoughtful. It doesn't matter what the choice would have been, because our child is here with us now and we believe their life has value.

4. "I knew someone else who had that, and they were severely disfigured/died from it."
I have NO idea why our society is obsessed with horror stories. Someone is about to get married, have a baby, adopt a baby, buy a car, whatever; so people surround them with stories of the worst things that could ever happen. It's NOT HELPFUL. As a mother, I have gone through every worst case scenario there is. So if you want to tell me an encouraging story about it, or say something kind and uplifting, by all means. I don't need help worrying about my child's future.

5. "God only gives those children to special people."
This goes against what I feel like is the character of God (i.e. He did not want my child to have a genetic disorder). It's also untrue. In the child welfare system in the united states 30-60% of children have been estimated to have chronic health conditions. When you add in behavioral, emotional, and developmental issues, the number increases to 80%. The estimation for the general population of children with special needs is 12.8%. (Source.) Some of this is because dealing with special needs can be financially, physically, and emotionally draining. It could easily cause people to lash out at their children, especially those who are higher need. However it does also show that not all parents who have children with special needs are great at it.

6. "Whispering, Staring, Shushing, and quickly moving away."
These things are hurtful. Although I am writing a list of things I don't want you to say, I am okay with questions. Especially from children. That's how they learn. When you shush them or move them away you teach them to be uncomfortable with people who are different than they are. And when you do these things, you show me that you are uncomfortable with my child. My child is like yours in lots of ways. She is not scary. Treat her the same way you would a typical child.

7. "Those kids are always so...(happy, fun, compassionate)."
Maybe living a life surrounded by therapist, doctors appointments, and procedures makes children with special needs more compassionate. But not every child with down syndrome is always happy. Not every childhood cancer survivor grows up being empathetic. My child's diagnoses does not define personality. It's similar to believing all men, all women, or all of a specific ethnic, religious group, and so on, are the same. They aren't. My child's personality is unique. So are all of the other people who I have met with NF.

8. "I know all about ____ and here is what I know."
When my nephew was diagnosed with cerebral palsy a woman I worked with told me that if I had children they could have it too. When I politely stated it wasn't genetic, she argued with me. I walked away knowing that cerebral palsy is brain damage that can result from numerous different things. It is not genetic. It's nice to meet people who know about the disorder your child has; especially if it is something rare. However, don't ever argue with a parent about their child's disorder. I guarantee you they have spent weeks of their lives researching, reading, talking to doctors, and sharing with other parents. They know more about it than you do. And even if you are right, it's okay to give that parent a break from all of the know-it-alls in the world.

9. "You know what you should do..."
I can not count the number of people who have boldly stated the way to cure my child. Natural this that and the other, surgery, drinking so much water every day. Really, because of the eight specialist we see, none of them seem to know the cure. But average Joe out on the street has the cure that the doctors have yet to discover.
I will agree that there are often natural things that can help situations; foods to avoid, foods to eat, vitamins, and other things. I have a feeling though that if I did what everyone told me, I could end up losing custody of my child for neglecting her health needs.

10. "She looks normal. You can't even really tell there's anything wrong with her."
This one makes me want to respond with, "And you seem intelligent." I don't know if people are trying to make me feel better. Of course my child looks normal. Of course my child is beautiful. You don't have to convince me of that. But you telling me that you can't look at her and tell anything feels sort of like a trite answer of "Well at least you have that going for you. She can pass as normal." That doesn't help me to feel better, even if it makes you feel better.


This is the list for you. There are other things more specific to each child that people say as well. So please try to think before you speak. Think about how you would feel if that was your child. Think about whether you are close enough to the person for that to be an appropriate question. There are a few things on this list that our closest friends have asked, and know the answers to. They also know when all of our appointments are, how we are doing emotionally, and not to say things in front of our daughter.
And lastly, I have never begged for more readership before. But PLEASE share this. Post it on facebook, send it by e-mail. Post a link from your blog. Contribute your questions you don't like asked in the comments. Just do whatever you can so that as many people as possible can read this and become better informed.

Excited to see what you have to say,

#4 on it's way

The chaos of life seems to just be trading one thing for another right now. Once something seems to be on the upswing we have a new thing to deal with making me have to laugh at the ridiculous amount of crazy we have going on. I might just be laughing to keep from crying, but I'm laughing none the less.

We are still working on getting Abigail to enjoy her thickened liquids. Since her water has applesauce in it we call it juice. And although she has been drinking it, she still ask for water about ten times a day. And the milk transition has been horrible. We are on a new attempt after backing up and thickening a little at a time instead of all at once. Nap time got a few swallows and no tears so we are hoping this time it will work.

Beyond that she has had two darkened areas on her leg we have been keeping an eye on. One of them recently started to feel like it had a little knot under it so I called the neurologist. They suggested I take her to our family doctor to make sure it wasn't anything else. I put it off because even if it is a tumor, there isn't a whole lot they can do, and I didn't want to do another MRI yet. So yesterday Abigail told me she had a boo boo. I asked her where and she pointed to the spot with the knot under it and said hurt. So I decided to take her to the doctor. And now we have another MRI at the end of November. *Sigh*

Other than that our world has been filled with smaller ups and downs like a broken furnace that is now fixed and a friend who has struggled with addictions, and been clean for a while, was missing for a few days, but has called and all is fine. Our lives are never boring if nothing else.

On a much happier end of things we had a routine dentist visit today. Abigail has cried through her others, but has always still let them do what they needed to (just with big sad tears running down her cheeks). Today my two year old was a rock star. She got her pouty lip out a few times, but not one tear. I would have been proud of her even if she had cried, but the dentist and hygienist were very impressed at what a big girl she was. And to tell you the truth I was too.

There are times in my life where my biggest lessons have come from the tiny one God has entrusted to me. The days I feel overwhelmed with all of the appointments, poking, prodding, and driving; I can look down and see a toddler overjoyed to be playing with different toys, seeing the nesquick bunny when we drive by the factory, or getting to watch the television on the ceiling at the dentist office. I mean if the sweet little one who is receiving all of the pokes and prods from strangers can take it I should probably act a little more like my two year old. She makes our lives of chaos seem like a walk in the park.

The pictures below are from the night Jason decided he would swaddle Abigail to be silly. We haven't done this since she was about two or three months old. Now she ask to be swaddled and rocked at least once every evening. And who am I to say no to a request that allows me to hold on to my toddler being a baby for just a little longer. :)

Living the life,

To those who go before and after

When we found out about Abigail's NF I joined a forum of other people who either have NF or have a kiddo with it. I remember in my first few post everyone telling me it would get easier with time...and not believing them. But here I sit over a year later, and it has gotten easier. And now I say the same thing to the new parents on the forum.
The beginning is hard. Trying to navigate the bomb dropped on your family, grasping at straws of how it might be your fault, maybe you should of noticed something earlier, and how you are certain there is some way that somebody can predict what will happen in the future.
Then you go to a few appointments. You get questions answered, and realize that your child has remained the same. You realize that all that time spent worrying, and stressing is time that is being taken away from enjoying your child, spouse, and life in general. So you slowly begin to let go of some of it, until all of a sudden you realize you haven't had a sleepless night worrying about things in months. When did that happen?
But, as the moms who have been at this for many more years than I have will tell you, appointments ALWAYS bring you back to a place of anxiety; even if it's not as much as it was in the beginning. Because there is the fear that something will be found; that your wonderful kiddo who laughs and brings joy will have a tumor.
And tomorrow is our ophthalmologist appointment. It hit me last night that they could find something and since then I have had that little ball of anxiety resting nicely in my stomach. I of course dreamed that she had a large tumor that grew so quickly we had to start chemo the day we were at the doctors office. Yeap, it's appointment time again.
Thankfully it has only been a couple of days of anxiety instead of weeks. And the biggest part of me is certain she is fine. But this stupid disorder has a grip over people making you constantly wonder when things will turn sour. When will she get her first tumor? Where will it be? How will I react? How will she react? What other symptoms will she have over her lifetime?
But tomorrow will pass, and for a little while we will go back to life as we know it. I will sleep fine again, my stomach will feel better, and NF will be something that may never leave my mind, but it won't encompass my every thought.

Looking forward to Thursday,

WOO HOO!

We really just feel so blessed. Not necessarily deserving, but blessed none the less. Another clear MRI! We found out yesterday, but have been running around a lot so I am just now sitting down to write.
I don't think it could have been a better day. Not too long after we got up we got the phone call from the doctors office to let us know results. It was one of those times that when the caller I.D. lit up I thought I might puke. Jason and I both felt really anxious about this one; mostly because results took longer than either of the others have. None the less she does not have hydrocephalus and there were no tumors.
I called Jason as soon as I hung up to rejoice with him over the phone. And for the first time in our six years of marriage he told me he could come home and eat lunch with us. It has NEVER happened before. So Abigail and I made some chocolate chip cookies together. And by together I mean Abigail got flour on her table and on the floor at which point she sat and played in it and then licked her hands. I also gave her a bowl with flour and water mixed so she could "tir" while I finished the cookies. It was all over her, her clothes, the table, and the floor. It was also totally worth it. I didn't take any pictures because I was trying to get cookies and lunch done in time for Jason to come eat with us.
Then while Jason was still at home with us, our anniversary present arrived from the U.P.S. man. We agreed on a joint gift of a waffle cone maker. So after Abigail went to bed last night we made waffle cones and ate ice cream out side on the steps. It was just a day with fun, laughter, and rejoicing.
Just so I'm being totally honest we aren't really "out of the woods" as far as figuring out some more stuff. We see her neurologist again in a week and a half so they can measure her head against their records. They did tell us she has scaphocephaly (elongated head) which is commonly seen in children born premature, or who have had their soft spots close early. She has had neither of these (that we know of). It doesn't seem to be an issue form the information I have read, but interesting to know I guess. He also wants to talk about referring her to a developmental pediatrician to watch (and maybe figure out) some of the odd growth patterns she has had, and is having. But once again, that being weighed against the "could've beens" is just small potatoes.
I was thinking today though about this hope that I always hold out for. I always think, well this will be the end of appointments for a few weeks, or until next month, or whatever. And it never is. We have had some small breaks here and there, but we have gone from one appointment at the end of July to three as of right now. In my head I keep telling myself that after that we will have one in August and then a break. But the reality of it all is, we have a daughter with multiple special medical needs. We see lots of doctors. We go to lots of appointments. Our lives may always consist of this. Perhaps some day I will accept it; perhaps I will always hold out the hope that things will slow down. Either way we are going to continue to enjoy life and each day we have with our goofy little bug.

One, Two, Three; Done!

The appointments are over this week! WOO HOO!!!! I'll breif you on the week. :)

Monday was a follow up appointment with her e.n.t. Her ear tubes are still in good...no problems! We don't have to go back for a year. Great news...although if I got to pick which doctors we saw more often her e.n.t. would be one of them. He is gentle, kind, and affirming of us. But none the less it's nice to think we will be seeing less of doctors.

Tuesday was the MRI. We had to be there early, so we were all up around 4 a.m. YUCK! It went very smoothly, and Abigail did great. The only major set back from the day was that since her MRI was early in the morning; we were done before McDonald's served french fries. Our 22 month old does not understand that concept, nor were breakfast french fries quite cutting it. :)

We also decided that since it was so early we would go to the world's largest children's museum afterwards. Indianapolis has an awesome children's museum that we get a huge discount to...so the three of us were able to go for two dollars. Abigail loved the "noo noos"(trains) and that she got to sit on one. There were lots of other fun things too. We then came home and everybody took a big nap.

Playing in the water table

Sitting on the "noo noo"

Another "noo noo". :)

Today was Abigail's allergist appointment. Although overall I would have to say it went just fine, it was a long and stressful day. I definately didn't enjoy the 15 pokes my kiddo got, but they all came back negative (although we have to wait two weeks on a follow up test for peanuts because of a previous reaction). I think I was irritated that she had to be poked so many times for what turned out to be nothing, and that it took almost three hours for the total appointment.

Abigail is sleeping now though, and it's all over. Praise the Lord. I thought I would leave you with some more personal thoughts on all the chaos of the week.

While lying in bed last night I couldn't help but think of how thankful I am. I am thankful that I even get the oppurtunity to be a mama. I am thankful for a daughter who takes everything in stride. I am extrememly thankful that we live within an hour of a wonderful children's hospital. I am thankful for a husband who can easily rearrange a work schedule to go with us to the MRI. I was also thankful for coming home to him hanging clothes on the line and finishing dinner tonight.

Obviously we could still get not great news about the MRI, or it could come back fine. For now though; we are going to move forward with life as normal. We will update you when we know more.

Sighing in relief,

The thief

There is a thief that lurks near me. He is always right next to my ear. He likes to remind me of all of the bad things , all of the scary, and all of the sad. He likes to make me worry. I do my best to ignore, and tell him to be quiet, but he wants my joy. He likes to see me miserable.

So on Monday as I left our doctors office I felt overwhelmed. It wasn't fear so much as just the feeling of needing to let out a sigh from deep in my soul. I was struggling the whole way home not to cry, and not to let all of the "could be's" start taking over my thought process. As I was driving and wrestling through my thoughts I hear that still small voice ask me a question, "Are you going to let this steal your joy?"
I was a little taken back. The last few weeks for us have been full of rejoicing over great news from an MRI, watching a close friend choose to join a rehabilitation program for people struggling from addictions, and poor life choices, and then watching her give her life to Christ. The week following that we spent on the beach enjoying each other. It has just been some of the best few weeks we have had in a long time. So as I sat and pondered the question I made a decision. This will NOT steal my joy.
The decision isn't as easy as it sounds. I can't tell you the number of times during the last few days I have heard that question again and again. As my thoughts start to wonder, as Riley calls to remind me of the appointment, and as I look at my calender and realize Abigail has two other doctors appointments next week, I start to feel like I'm sinking. It's all too much. And then I hear it again, "Are you going to let this steal your joy?" I look down and there is a smiling toddler asking me to "dan dan" with her, read to her, and snuggle her. So I once again make the declaration, no matter what today looks like, no matter what the outcome of her MRI next week, I will not let anything steal my joy!

Results

I won't write much because I'm in the middle of a dance marathon with a toddler.

However this video is the perfect picture of how we are feeling today! We are dancing and singing because despite the fact that it seemed almost certain they would find something; the MRI came back clear! So en joy the video of Abigail's awesome skills of dancing and singing...and then feel free to join in rejoicing with us!

Praising the Lord,