Monday, February 28, 2011
Wednesday, February 23, 2011
Abigail started sleeping through the night (eight hours) at eight weeks, and lengthened it (12 hours) by 12 weeks. She was the envy of friends. Up until somewhere between 18-21 months she was a champion at sleeping. She would sleep anywhere from 12-14 hours at night as well as 2-3 hour naps during the day. The only exceptions were ear infections and teething.
But somewhere between 18-21 months we started having more frequent night time wakings. And somewhere in there her last teeth came through and I had nothing left to explain the wakings. Sometimes we would go two weeks with an awesome sleeper and then spend the next week and a half getting up once one night and four times the next, then back to once, then twice and so on and so on.
We have tried EVERYTHING. We have gone with the thirsty theory, needs to go potty, too hot, too cold, in pain, don't go in the room (talk to her through the door), and frankly nothing changes with anything that we do. (Please, PLEASE do not give me suggestions on how to fix it.) And so sometime in the last few weeks, after all of the other sleep test have come back normal, I have been slowly and reluctantly working through acceptance.
You see, like I've mentioned before NF is EXTREMELY variable. And there are tons of little weird things that are linked to it, so many that I could never list all of them. But one I know to be true is sleeping issues. I have researched a little, and just sat and quietly cried as I tried to wrap my mind around the fact that we have another NF symptom on our list. I still want to deny it's NF related.
But last week when we were up (collectively) six times in the night with Abigail, I knew. I knew she wasn't just being a stinker because she used to sleep well, and occasionally still does. I knew I couldn't pretend away the four or five nights a week she often wakes up, nor could I act like they weren't related to one another. And the moment that really hit me was being at story time one day when another mom asked me if I was okay to which I responded with, 'Yeah, I'm just tired.' She made further inquiry and I said that Abigail had been up a few times the night before to which she responded with, 'Is that a normal occurrence?' I could tell by the tone of her voice, and facial expression, that she believed that it was a parenting issue. I didn't have the energy to explain that no amount of letting her 'cry it out' could 'fix' her sleep issues.
I am not the most rational non-sleeper. I don't like to stay up extra late. I don't like to get up early. And my body hates me when I do those things. I remember when Abigail was really little sitting in the rocking chair one night at three a.m. and feeling alone, and like I was the only person in the world awake at this time of night (I was tired and a new mom so these sort of thoughts went with the territory). I remember feeling that small whisper reminding me that I served a God who never sleeps. As I sat rocking my baby I could feel His presence surrounding me. When I layed her back in her crib I remember feeling peace that He would continue to be there even when I went back to my bed and slept.
So as I do my best to accept (and fluctuate between denying it and crying about it) that Abigail has sleep issues, I have a few thoughts. First of all we often pray that God would let her (and us) sleep well. I would love it if you would pray that as well. However, I also want to be able to respond with grace and love if she has sleep issues. And as mentioned above, I don't do well with not sleeping. So if you could pray that both Jason and I would be given extra energy, and a supernatural feeling of being rested so that if she wakes up, we can do a good job in the middle of the night as well, I would appreciate it.
(Those early days when everyone just slept a lot.)
My verse for the days where sleep has been fleeting:
'Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.'
Feeling tired and weary,
P.S. Don't forget to enter the giveaway on the post before this one...it will be over in the morning. :)
Tuesday, February 22, 2011
Monday, February 21, 2011
This awesome ring is only $7, and is adjustable.
There's this idea that everyone with young children with NF hold onto. We all hope and talk about the fact that most cases of NF are mild. And although it's progressive, it is still possible that all our children will be afflicted with are the cafe au lait spots, freckling, lisch nodules, and a few dermal neurofibromas.
I'm part of a group on a bulletin board where NF is the central discussion. And it sometimes feels like you sit back holding your breath as friends with children older and younger than yours have things come up. And with each new post of bad news you start to feel like the reality of 'mild' is slipping threw your fingers. So you squeeze just a little bit tighter.
When we found out about Abigail's plexi there was a flash of a reminder in my brain that something coming up this early could mean a not mild case. But I crammed it hard into the back of my head, punching and kicking it to let it know that I would not allow the what ifs to take over.
But here I sit today thinking of lots of things and wondering what the future holds. I've been sharing the logistics of NF a lot lately because of the upcoming surgery and trying to raise money. Whenever I describe NF causing tumors to grow on nerves I always have this little phrase that I don't write/say out loud. Your spinal cord and brain contain lots of nerves. And at no point are we 'out of the woods' when it comes to those things being possibilities.
So as I was sitting and writing about NF to someone earlier I had one of those gut wrenching moments of wondering how long we will have out sweet little bug. Perhaps this plexi is all she will ever have, and she will live to see her grandchildren and great-grandchildren. Perhaps the headaches she has started getting are just part of the normal NF headaches that kids get. And then maybe not.
And as I sat with my eyes filling up and my heart hurting, I was reminded of why it's important to make memories now. Reading the same book for the millionth time might be tiring to no avail, but it's what I'll do while she is here with me. And it's not because I think she is going to die, but because one way or another she will some day be gone. So I will leave you with the lyrics of a song that means a lot to me; especially with a little girl who loves her Papa and dancing.
-Steven Curtis Chapman
She spins and she sways
To whatever song plays
Without a care in the world.
And I'm sitting here wearing
The weight of the world on my shoulders.
It's been a long day and there's still work to do
She's pulling on me saying dad I need you
There's a ball at the castle and I've been invited
And I need to practice my danging.
Oh please, daddy please?
So I will dance with Cinderella
While she is here in my arms
'Cause I know something the prince never knew.
Oh I will dance with Cinderella
I don't want to miss even one song
'Cause all too soon the clock with strike midnight
And she'll be gone.
This is as far into the song as we are with Abigail. There are a couple more verses, one about prom and the other about getting married. I truly hope those verses are ones we get to enjoy with our little girl as well. But no matter what comes we are going to dance with our little girl right now!
Saturday, February 19, 2011
(Abigail sleeping on Mama when she was really sick. A moment that was both sad and enjoyable at the same time.)
Thursday, February 17, 2011
Wednesday, February 16, 2011
I read through the story and then went on to a second story from Acts 3 where Peter heals a man who was lame. I could feel my brain start to spin in all sorts of directions so I finished getting Abigail to bed and then came down and read both stories from the Bible. I took some time to really think about both of them, and reflect on how they made me feel.
First of all, it was interesting to me that on the day before Abigail's eye doctor appointment the place that I happened to open to was the story of a blind man. It is probably the first NF appointment that we have ever had where I haven't been an anxious mess before hand. It seemed divinely appointed.
But my bigger thought was how something about stories of healing like this make me cringe a little. I know why, and will explain it a little more in a few minutes. The other thoughts I had were a little more specific to each story.
First of all the story in which Jesus heals the blind man, it is immediately mentioned that the boy was born blind to bring glory to God. It tells us that his parent's didn't sin, nor did he sin, to cause the blindness. God had the intentions of taking one man's suffering and using it so that the blind man would be a testimony to the healing abilities of our God.
Before Abigail was born God gave us her name. It means 'father's joy' and I specifically remember praying at some point, and God telling me that Abigail would be His joy. For this reason, with all that Abigail has gone through, and will go through, I continue to feel a strong impression that it will be used for the glory of God. I think that her little life has already touched more people and reached far beyond my wildest imagination.
The second story was one I remember having a conversation about at some point in a small group. Someone in the group pointed out that the gate they mentioned this man sitting by (the gate called beautiful) was one Jesus would have entered numerous times to go to and from the temple. And since the story states that this man was there everyday, it can likely be assumed that Jesus had walked passed this man numerous times and not healed him.
The next part strikes me as interesting as well. The man isn't sitting there asking to be healed. He is only asking for money. Think about what you do when you see someone panhandling. Do you glance away. Do you throw some money in their dish? Most importantly have you ever given them dignity by simply looking them in the eyes? Peter does just that, and when he does he sees the man's true need, and it isn't the money he is asking for.
I know lots of people who feel like Jesus has walked by them unnoticing; choosing not to heal, not to bring children, not to mend relationships. And I can attest to the fact that I have felt that way too. But I think even when it feels like Jesus has walked passed, that it's possible He has someone else lined up to do something amazing in our lives through Him.
Now here's why the stories make me cringe. I have talked before about healing, and specifically that God has moved in mighty ways in my little girl's body. For those of you who weren't following back then, a brief recap: Abigail wasn't using her legs at nine months, we prayed for healing, and she began using them. Knowing now that she has a tumor in her leg, and that it is congenital (there when she was born) we can look back and realize that God did something amazing.
But for whatever reason God has not healed her of NF. I'm okay with that. Truly. I simply cringe because of the number of people who have said to us that we need to 'claim' healing for Abigail, or that her lack of healing is a result of our lack of faith.
I personally have yet to find where it says that Jesus only heals people who claim healing. None of the stories I read in the Bible about healing have someone yelling, 'I claim that healing for me' (or my daughter). I also find it hard to believe that God's ability to 'heal' my daughter rest on my faith.
First of all, God says it only takes faith like a mustard seed to move mountains. I'm pretty sure that my faith is at least the size of a mustard seed. Secondly, if anything, for anyone else, rest on my faith (instead of God's omnipotence) then we are all in trouble.
I don't believe her birth mother caused her NF. I don't believe Jason or I caused it, and I definitely don't believe Abigail caused it. I believe God has taken what was meant for harm , and is using it for His glory!
And to end it all, our appointment today was phenomenal. Her optic nerves are clear (no tumors) and her eyesight has improved slightly. She will still wear glasses, but I can't think of how the appointment possibly could have gone better. So for that, we will be thankful, and walk through everything else as it comes our way.
(Abigail a year ago when she first got her glasses)
Walking, and leaping, and praising God,
Tuesday, February 15, 2011
The world would like to constantly remind me of things I don't do well either. The people at the store who have told me her feet are cold and she needs socks on, now to get that fit to stop and so on and so on. And then there are the friends and family members who just watch you and you can feel it. They stare holes through you and let you know that whatever you are doing they don't exactly approve of. (I won't even go into the parenting books and magazines who tell you if you don't use this method that your child will be scarred for life).
It takes me a lot of self talk (reminding myself of the things I'm doing okay at), as well as constant reminders from my husband that I'm a good mom. I also hear it a lot from doctor's and her therapist. It helps balance things out when I feel like I'm not doing so well.
But then, every now and then I see it in Abigail. I hear her say something, or watch her pretending, and I'll see myself in her and realize I might be doing all right. Yesterday was one of those days.
Abigail and I were on our way to pick up her new afo's (she outgrew her others). We were at a stoplight and the person in front of me started to go and then slammed on their brakes. I had to do the same...but I wasn't quite fast enough. I rear ended them. It wasn't a hard hit, or a bad one.
I don't know if I said anything out loud or not. But from the backseat I hear a sweet little voice say, "Mama bumped car. It's okay Mama, twy again."
It made me smile and giggle and a little too. All of the stress I felt at that moment sort of left, and I was reminded that my reaction to the situation was being watched and absorbed by two little eyes. So I explained that Mama had bumped a car, and that we had to wait for a police officer to come and talk to us and then we would go to our appointment.
In a moment of high anxiety and stress for adults, my little girl knew that I might just need a little encouragement. Perhaps it was just the first thought that came to her mind. But maybe, just maybe, she learned from her Papa and I the skill of encouraging someone else who might need it.
Sunday, February 13, 2011
Most people with NF are followed by either a neurologist (Abigail sees one) or geneticist, an ophthalmologist, and a primary care physician who does checks of blood pressure and for scoliosis. Some people with it have other doctors depending on what all is going on with it. Abigail also sees a developmental pediatrician as well as having an orthopedist on the back burner.
And the thing about all of these appointments (most of which are either every six months to annually) is that they creep up on you causing you more and more dread as the days pass. By the time the day of the appointment comes about you've been nights without sleeping well, and are certain you see signs of _______ (fill in the blank). And most of the time you go to the appointment, everything is fine, and you come home and breathe again....for a little while.
In case you haven't guessed it we have our appointments rapidly approaching.
Between Abigail being in the hospital, and my husband filling in for his boss while he's out of the country, things have felt a wee bit chaotic here. So today when the robot called me to remind me that Abigail's ophthalmologist appointment is Wednesday morning a whole two weeks worth of worry slammed into the side of my face.
I'm pretty sure she is fine. But then I can never quite let go of the numbers....one in five children with NF have an optic glioma. They usually appear before the age of four. And so those stupid numbers whisper to me reminding me that she could be the one.
You know what's silly though. That number that whispers, it never reminds me of the four children who don't have them. It doesn't tell me of the studies that show that possibly black people are less likely to get optic gliomas. It forgets to remind me that Abigail has been to the ophthalmologist three times already with nothing showing up, nor does it let me know that she shows no signs of an optic glioma.
Nope. Just like the appointment that was so sneaky, the number, they are sneaky too. They want me to only know the yucky part of things. Those numbers want me to live in panic and fear. But lets face it, we have already been met with one of my fears, and I didn't fall apart when I found out she had a plexi. My life didn't stop. Nope.
All that happened was that we now knew, and we moved forward with what we thought to be best for our daughter. And if I really allow my brain to slow down and think rationally, even if we walk into that office Wednesday, and they find signs of something, we will continue to life. The only thing that will change will be knowing.
We will still eat lunch at McDonald's. We will still drive home together and giggle at the larger than life Nestle bunny drinking chocolate milk. We will play games, read books, color, laugh, get frustrated, and have to send Abigail to time out. Sure things will be 'different,' but they will be a same sort of different.
So I'm going to do my best to not let the thoughts and fears take over my life the next few days. Instead I'm going to make an effort to remember to enjoy being the Mama of a two year old who is so wonderful. I'm going to lay down tonight and sleep well. I refuse to let sneaky things ruin my week.
Resting peacefully in the One who holds her life in His hands,
P.S. We are working on setting some more things up on the web to make Abigail's fundraiser more far reaching. Right now we have a twitter account *hopeforabigail* and will soon have a facebook page with the same name. Look us up, follow us, and feel free to share our badge on the right hand side of the page!
Friday, February 11, 2011
Go here to watch the video, and then pass it on to the world. Maybe we can change some minds about the value of people with special needs.
On my soapbox,
Tuesday, February 8, 2011
First of all, most of you know Abigail has a genetic disorder called neuorfibromatosis 1 (NF). The disorder (in short) causes tumors to grow on nerves. There are a few different types of tumors being common with NF, one of them being a plexiform neurofibroma (plexi). Plexiform tumors are congenital, but don't generally become apparent until they start growing. Head, neck, and face ones are generally noticeable by the age of one. Others may not become obvious until adulthood for some patients.
Abigail has a plexi on her leg. The nature of this type of tumor is that it affects multiple nerves, contains mast cells that release histamine causing sever itching, and it contains blood vessels. The blood vessels mean more blood supply to whatever part of the body the tumor is on causing that particular part to grow faster than the rest; known as hemihypertrophy. These tumors, when left alone can grow to be hundreds of pounds, cause sever pain and disfigurement, wrap around organs, muscle and bone, and can actually infiltrate muscle and bone, as well as the fact that they run a risk of malignancy. Some more recent studies are showing just how much better children who have them removed early fair later on.
However protocol for these type of tumors is still 'wait and see.' This generally means down the road that the person has to have multiple surgeries to debulk the tumor because it has become so invasive that it's impossible to remove the whole thing. The second fear of the 'wait and see' is that although the malignancy rate is 15%, those whose tumors become malignant have an average life span of five years from the time they find out. We would like to avoid these things for Abigail.
Right now Abigail's tumor is in a phase of growth. It is not uncommon for these tumors to see rapid growth during the toddler years as well as puberty (there seems to be a link between the hormones in puberty and tumor growth in NF). As a result of the growth we are seeing and the increased blood flow, her right thigh is also becoming more and more obviously larger than her left. Her right knee is significantly lower than her left, and her leg is longer as well. Although we have not had x-rays done, it is very possible that her actual bone is growing faster as well. This is something we will look into working out more after her surgery. Fixing it now would be pointless because the cause of the growth is still there.
Those are the reasons we have chosen to go ahead with surgery. The reason we chose the surgeon we did is because he is the best. As a result of these tumors being related to nerves as well as having blood vessels in them the surgery runs some risk. I have talked to multiple people who had a surgeon say, 'oh i can do that no problem' and who ended up not being able to have the tumor removed, losing use of an area of their body due to nerve damage, or having severe bleeding because the surgeon didn't realise that there would be extra blood vessels involved. I don't want to risk those things with Abigail.
Dr. McKinnon is the doctor who will be performing the surgery. He is literally one of the best doctors in the world for removing plexis. We feel grateful that he was able to do this. Because he has done so many surgeries he is aware of what is involved and is able to be honest. If he thought it would be possible to only get part of the tumor her would have told us that. And so we remain optimistic that he will be able to get the whole tumor, and that will be then end of that issue for Abigail.
I know there are some new people reading this now as our fundraiser has been passed from person to person on facebook. Thanks for your support, thoughts, and prayers. We are hopeful for our daughter's future. Although it is frustrating to know that insurance won't cover the surgery because it is elective, we also know that we serve a God who is much bigger than any insurance companies 'no.' In 24 hours we have watched almost 500 dollars come in. It moves this Mama's heart to see so many people responding with kindness and compassion to my little bug. So thank you.
Grateful beyond words,
Monday, February 7, 2011
There were some budget cuts to our state's early intervention program (for children three and under with special needs) and so we 'temporarily' lost speech services. I wasn't that devastated because the therapist was doing things that we already did. I figured I could keep working with her.
And then one day she woke up, and it was like everything that had been stuck in her brain just started coming out. She was talking, singing along with every song on the radio (even though we had never heard her even try to sing before), and telling us her thoughts on things.
We won't continue speech whenever it becomes available again. It's so nice to see things progressing. Even her p.t. and o.t. are at a point where things aren't seeming to be necessary anymore. Her physical stuff we will continue because we don't want her to lose strength in her leg (we have seen a little bit of a decrease from the tumor). But really the only physical lagging she has left is running, and it is because of the actual make-up of her legs; and there's nothing the therapist can do to change that. We will have to deal with that after she has surgery.
Anyway, here is a little video of Abigail singing a song we have sung to her since she was born. I was singing it today, and she just started singing along word for word. There is way more in that little head of hers than we even realize.
In case you can't pick up on all of the words;
I lift my eyes up, unto the mountains. Where does my help come from? My help comes from you, maker of heaven, creator of the earth. Oh how I need you Lord, you are my only hope, you're my only prayer. So I will wait for you, to come and rescue me, come and give my life.
Enjoying the sweet words or our daughter,
P.S. If you didn't already notice, there is a new button on the side of this page where you can help fund Abigail's surgery if you are able or feeling led to You can also put the button on your blog, or share it on facebook, e-mail, twitter, or wherever else!
Thanks for all of your support,
Saturday, February 5, 2011
Overall though, I must say that I feel incredibly grateful for the experience we had. We had amazing nurses, a great family doctor, and the others who were checking up on her. We have amazing friends who came to visit, brought us food, and sent us kind words on facebok. We had a whole heap of people praying for her (and us too I'm assuming). Nobody wants to experience there child being that sick, or having to be hospitalized. It was however, an amazing reminder of the great body of Christ we are part of and how loved our daughter and family is. I still get tears in my eyes thinking of it all.
I have lots more thoughts about it that I may write about soon, but I have some other news I want to share (nothing to do with pregnancy or another baby). We got a phone call from the surgeon in Chicago who we sent Abigail's scans to, and she is a great candidate for surgery to remove her tumor! The only setback is that her insurance won't cover it. She has medicaid as well as another insurance specifically for children with special needs. The surgery is considered 'elective', it is out of state, and the surgeon doesn't accept public insurance programs. There is still a small possibility that the hospital that they do the surgery at will be covered, but we aren't holding out breath.
So right now we are in the mode of trying to decide on some fundraisers, and do some research to figure out how to add a little bar so people who would like to donate can. I think the total cost will be somewhere around 10,000. I know that is a lot of money, but for a surgery that will affect my daughter's well being, by a surgeon who is the best, it seems like not very much to me. :)
So although it was a very long week for our family, the call from the surgeon (he actually called, not a nurse) on Friday lifted my spirits a whole lot.
Thankful that God has given man the ability to do things like remove tumors,
Tuesday, February 1, 2011
Abigail is sick. On Friday she was having flu like symptoms. I decided to take her in because Friday afternoon+flu+asthma=e.r. trip if not (remember this statement, it will hold some irony later). So the doctor does a flu test, negative, says it's viral and keep her hydrated, resting, and watch her temp. Saturday she is the same; extra snugly, but still playing quite a bit, and eating some. Sunday things start to change. She spent the whole day sleeping on Jason or me. We gave her ibuprofen before bed, and when it had enough time to kick in and she still felt really warm we took her temp. 104.7. To the e.r. we go. They do blood work, test her for the flu (again), strep, give her i.v. fluids (because her urine output had dropped) and sent us home with an official diagnoses of 'virus.' We had instructions to let our doctor know what is going on, and if she isn't better by Tuesday take her back to the doctor.
The whole time I'm holding her Monday while she sleeps all I can think about is the forecast of 1.5 in ice and snow. And then I can only envision an ambulance having to come. But viruses don't last too long so we should be fine.
Monday was met with temps of 105 if I didn't alternately give her Tylenol and ibuprofen every three hours. With the medicine it was staying between 102-103.
This morning she calls for me when she wakes up. I walk in hoping the fever is gone. It is not. I take her potty at which point she vomits, and is unable to pee. Call to the doctor and I'm told to go back to the e.r. for fluids. I'm in the e.r. for five minutes before the doctor walks in (who happened to be the same one from Sunday night) and tells us she is admitting us.
They bolused her (I think that's right) and started her on an i.v. for dehydration and low blood sugar (from not eating for three days). She perks up a little and her temperature comes back down (didn't know dehydration could = fever).
She finally pottied at 5 tonight. She went for 21 hours without peeing. It was making Mama pretty nervous.
So tonight as she's laying down getting ready to sleep her o2 stats drop to 88 and stay there. Her fever came back (although much lower), and she looks awful. She has none of her usual happy self in there. Just a pathetic look, sick eyes, and cantankerous spirit, none of which are who she is.
At this point she is on oxygen, and we are awaiting more testing. We know it's not the flu, RSV, strep, and lots of other things. Her chest x-ray was clear on Sunday, but they took another one tonight when her o2 dropped.
Mama is exhausted. It's odd to me how much different this is than the other medical stuff we deal with. Perhaps it is only because I have come to a place where I have a grasp of understanding on the other stuff. This is completely outside of anything I have dealt with, and feels uneasy since we don't know what's going on.
A very sad, very sick little bug.
So, there are lots of things to pray for. I will do my best to update you!
Sleeping on a plastic sofa,