Thursday, April 28, 2011

Catch you up.

I realized I haven't told any of you MRI results. So, the MRI came back with NO tumors!!! YEAH! The only thing that showed up was something on her lungs. I know that 'only on her lungs' sounds scary, but the MRI was taken the day before she got sick. So with my limited knowledge it sounds to me like she actually had pneumonia again instead of the bronchitis that was suspected. We should be hearing from her pulmanologist today after he looks at the MRI (he was out of town). We may end up seeing him soon since pneumonia twice in a three month period is a bit much. But, she seems healthy right now (aside from being extra tired).

We also should be hearing from the ENT in the next week or so about what the MRI showed with her adenoids, and whether or not we are looking at surgery for removing tonsils and adenoids to help with sleep apnea. It seems somewhat minor, but still on the radar of 'things we may be doing' this summer.

All right, enough medical jumbo. Here's what I really wanted to talk about. Abigail has been a fussy, whiny, and disobedient little girl over the last few weeks. She has been through a lot, but didn't seem to be snapping out of it like she usually does. I couldn't figure it out, and was feeling completely wore out by all of the extra discipline she was requiring, and her tantrums.

So I put her down for a nap yesterday and Jason called to say he was going to be pretty late. I cursed at the thought of not getting my back-up when I thought I was going to. And then I had a bright idea. Abigail needed some summer shirts (somehow in our abundance of 2t clothing we had no tank tops and few t-shirts).

I always sort of forget that one on one time with her is different than me being here all day to take care of her. Sure we read, color, and play together. But it's divided with laundry, dishes, cooking, phone answering, door answering, and so on. So we went shopping (at the Goodwill) and went out to dinner together.

It was a lot of fun! We were both laughing really hard at dinner together. I enjoyed the time with her, and felt like I was ready to face today afterwards. And wouldn't you know it, I woke up this morning to the old version of Abigail. She has been joyful again. We have laughed, danced, read, and played with only one spanking the whole morning. When she asked for my attention and had to wait a few minutes she actually said, 'I no fuss and whine.' And then she didn't fuss of whine.

Perhaps next time I will remember that she doesn't just need date nights with her Papa. Here are a few pictures from our night together.

Abigail saw an episode of Blue's Clues where they make paper hats. So she takes pieces of paper, folds them (crumples them up like you would to throw them away), puts them on her head and says, 'Yook! Newspapew hat!' Mama wore one too.

And then she got sillier and put her fork and spoon on her head.

And since her meal was free with my entree, we shared a piece of chocolate cake. She liked it a little bit. ;)

Enjoying a day with just my little bug and I,

Thursday, April 21, 2011

So I didn't update you all this week. Mainly because we still have no answered questions, and instead have more upcoming appointments (this seems to always be the case). We don't even have MRI results yet. We would have, but when the doctor's office was calling with results we were sitting at our family doctor with a little girl who's temperature spiked to 106 during nap time, and has done so again between medicine doses. We are being told bronchitis. And praying that tomorrow morning, when she wakes up, the antibiotic will have been in her long enough to have more effect on it. I do have to add though, that at 106 she was smiling, laughing, and asking to eat. Instead of updating you all over the last two days I have been sitting on the couch taking in Blue's Clues, Wonder Pets, and Leap Frog videos. But this isn't the main point of what I wanted to say.

Three years ago at this time I was praying that God would bring our daughter now. I was tired of waiting (for almost three years) and ready to see something happen. I had spent my time waiting, crying, praying, and at times feeling sorry for myself. I had lamented over other people who didn't 'deserve' children having them. I had told God how unfair it all was. I had put on my gloves and gone toe to toe with the Creator about all of the things I thought should be happening in MY time.
I didn't win that match. I wouldn't say I lost it though either. I would mostly say I walked out knowing more of my Savior. And like the wrestling match that took place in the Bible, I came out with a new name. 'Mama.' What a beautiful name Christ has given me.
I would love to tell you that after walking through the pain of all of that, and holding the miracle of the child God brought us in my arms, I haven't wrestled with God since then. But I would be lying. I sort of doubt at this point that Israel never wrestled with things again. I mean the man's name means 'wrestles with God.' But I can't say for sure.
Anyway as I have continued to walk through these past few years wrestling with new things as they come up, I feel like I have become more grounded in my faith. When people say things like 'it must seem unfair' I can honestly reply with no. Fairness isn't something I struggle with. Or 'You must question what God is doing.' Nope. I know God is doing something in this whole situation. But I don't question the what or why of it.
Jason and I were sitting on the couch one night this week after all of her appointments. I was sharing how overwhelmed I was feeling and used a few choice words through my tears. Jason immediately asked if I was struggling with faith issues. I was sort of taken back. I thought for a few seconds and responded with these following feelings (that I think line up perfectly with Easter).
Before I had a child with special needs, I never understood true suffering. I have lost people. I have physical pain and ailments. But, I have never experienced anything that has brought such clarity to the idea of wiping away every tear. I have never gotten excited over the idea of being made new, and Christ returning for His bride. But now I get it in a whole new way.
I serve a God who not only died for all sin, He conquered death and rose again. He conquered NF, mastocytosis, hemihypertrophy, hypotonia, macrocephaly, GERD, asthma, and even bronchitis. He conquered disorders, genetic mutations, and diseases. Some day the little girl who is lying in her bed sleeping right now will be made whole. Her little body will not be programmed to grow tumors. Her little belly will keep the stomach acid where it should be. Her little lungs will work the way that they were designed to work. I could go on and on.
Because Christ rose from the dead, and is returning some day, all things will be made new. Because I serve a living God, I can walk through the painful parts of life knowing that all will end well someday.

'Oh death, where is your sting?
Oh hell, where is your victory?
Oh church, come stand in the light.
Our God is not dead, He's alive, He's alive!'
-Matt Maher

Excited that the tomb is empty,

Wednesday, April 20, 2011

Thank You Jesus.

Abigail looking at her 'flower' she picked in our yard.

Just a fun little drop in to tell you about life. Abigail is doing great. All of our big appointments are done for the week, we just see the dentist tomorrow. We won't have MRI results for a few days, but she was AWESOME today. It was by far the best and easiest MRI day we have ever had. I have one easy and wonderful two year old.

I thought I would share with you Abigail's prayer before dinner tonight as a little smile giver.

'Jeyuh, Sank you for boo boo (on her hand from the i.v. today). Sank you for boo boo yeg. Sank you for a wonduful day. Sank you Mama, sank you Papa Bear. Sank you for a wonduful day. Jeyuh name. Amen.'

In case you need any interpretation 'sank' means thanks, 'yeg' is leg and I think the rest is self explanatory. Never hear a two year old thank Jesus for her boo-boos. But, it brought a smile to Jason and I's face.

Have a good night,

Monday, April 18, 2011

As promised....

Notebart Nature Museum (free on Thursday) Abigail with the bear.

Being a moose.

In the butterfly garden.

The Art Institute of Chicago

(free on Thursday nights)

Abigail's favorite picture...ballerinas.

Making her own art in the hands on section.

Lincoln Park Zoo

(free everyday)

Riding the elephant on the merry-go-round.

Grandma Grandpa and Abigail.

Mama Papa and Abigail.

Lou Malnati's

(not free, but for a great cause)

We ate at the Lou Malnati's located in Lawndale.They give 100% of their profits from this locationback to the community. Plus they have GREAT pizza.

Sweet Mandy B's Cupcakes

(also not free, but yummy)

For our last night treat we ate atChicago Pizza and Oven Grinder which was my favorite place we ate while we were there (and high on my list of ever). Then we got cupcakes (the infamous Molly's is not nut safe) and ate them at home. Abigail was the only one who ate shirtless though.

Hope you enjoyed the pictures. We have a busy appointment week so I'm sure I'll be updating you all again sometime soon. Also, for some reason blogger is being ridiculous right now and no matter how much I edit my post none of the spacing is correct. So if it's one big blob , and if there are miles in between things, curse blogger along with me. :)

Thursday, April 14, 2011


I'm going to do my best to explain what we know...or really more of what we don't know. We met with the surgeon yesterday morning before leaving Chicago. He told us that the pathology came back puzzling. The tumor was benign. It was connected to a nerve (like NF tumors) had overlying hyperpigmentation like plexiform and was 'causing' hemihypertrophy like a plexi. Turns out the tumor was NOT an NF tumor. It was a mastocytoma (mast cell tumor). What does this mean? Well, first of all it means that we are thankful that it was benign. And we are glad that it flared up and we got it taken out because there are some more things that need to be hashed out. Last summer we saw a dermatologist because of the possibility of Abigail having mastocytosis, or some other mast cell disorder. The dermatologist was not helpful. She was literally so excited about the NF that she diagnosed her with it again and laughed when I asked about the possible masto. So I never pursued it anymore because it hasn't been an issue. But with this tumor it is a very real issue, and pretty likely. It means that if she does in fact have a mast cell disorder, mast cells could build up in different parts of her body causing everything from dermal issues to internal issues. She will need to have some internal organs scanned to make certain that they are not abnormally large (due to mast cell build up). Interesting side note, another common place for mast cells to build up? Lymph nodes. What do all of Abigail's MRI's keep coming back with? Slightly enlarged lymph nodes in her groin, and even more enlarged lymph nodes in her neck. The second thing it means is that the hemiypertrophy was not caused by the tumor. However, hemihypertrophy can be caused by a few other things. Some of them are genetic disorders that we already know that Abigail does not have. A few others are a Wilm's tumor (on the kidneys) an adrenal gland tumor, and a few other types of tumors. Sometimes the hemihypertrophy is just that. Kids with it end up getting blood work and ultrasounds every few months to monitor things. It's odd having a world renown surgeon tell you that he is 'puzzled' by your child, and so are the doctors who did the pathology. We are feeling pretty thankful that we already have her yearly NF appointment next week and an MRI where they can go ahead and check out those internal organs. Those things have been scheduled for a little while. This tumor mimicked an NF plexiform in every way possible, and between that and the rapid growth we were seeing we felt like it had to come out immediately. We do not feel like it is some sort of crazy coincidence. Because despite the fact that we sit here now with more questions than answers, we are able to rest in the fact that God might just have been trying to bring something else to light. So we are asking you to join us in praying specifically that God would make whatever is going on in our little girls body known. That the things that feel like they are in the darkness would be brought to light, and we would be able to take the steps forward to get Abigail what she needs. And I really will post some pictures from the fun things we did in Chicago soon!!! 'Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church, and in Christ Jesus, throughout all generations forever and ever! Amen!' Ephesians 3:20-21 Resting in the one who is able to do immeasurably more than we can ask or imagine,

Friday, April 8, 2011

On emotions and things...

It's amazing all the little dynamics that go along with having a daughter with NF. There are ups and downs, what ifs, and possibilities that consistently leave us having to learn how to deal with the emotions of it all. But this week is met with much different thoughts and emotions. Mama's perspective: The night before the surgery, and even while sitting in the hospital room before they took her into surgery I remember thinking multiple times 'we can still back out.' But we didn't. Jason was the only one allowed to go back while they put her under. I sat and waited trying hard not to cry. And then he came out with tears running down his cheeks and so I cried too. And then we went and sat and talked about lots of things other than the surgery. When we went and ate breakfast though there was a fleeting moment where the image of exactly what was happening in surgery entered my head and I thought I might lose it again, but didn't. After surgery there was the happy and calm feeling of being able to see Abigail again and know that she was okay. Hearing the surgery went well, holding her, and watching Sesame Street together all made things feel like the world might be okay. But then over the last few days as she has had lots of pain, been cranky, unable to walk at times, and just not her normal self it has wore on me. I wonder if we made the right choice. I feel guilty and sad. Seeing her in pain makes my heart break. But at the same time I feel elated. I look at the last month of our lives, watching the finances for the surgery pour in, being prayed over at church last Sunday, the phone calls and e-mails we have gotten, the incredibly gracious family we are staying with, and the feeling that our daughter may have been given a second chance at some part of childhood all merge together, and I am left feeling full and happy. At moments I feel like I may actually explode with the amount of God's goodness we are experiencing. And lastly is that twinge of fear holding on. That knowledge that there is some slight possibility that he didn't get the whole tumor. The waiting to hear biopsy results that didn't come in when they were supposed to; leaving us mulling over the possibilities all weekend. All of these things sort of mix together for this jumbled mess of emotions that leaves me uncertain about what I am feeling, what I should be feeling, and what the next moment will leave me feeling. Papa's take: I'm kind of exhausted. It was smooth sailing getting to puking, made great time, traffic wasn't an issue (I love driving here!), etc. The meeting with the surgeon went fine, though it did seem kinda odd that our two year old was having surgery performed by a doctor whose office was full of brochures on face lifts, liposuction, breast augmentation, etc. and stacks of magazines so you could see what "real beauty" looks like. Anyway, the meeting itself went fine. I didn't really know what to expect with the surgical procedure since I've never had surgery and have never really dealt with one before. So, when he showed us some photos of a similar surgery he had performed, I wanted to gag. Needless to say, I'm glad I'm not in the medical field...and thankful he is. That night, Abigail didn't sleep neither did we, since we are sharing a room for the time we're here. The morning of the surgery came early...up at 5am central...which isn't a lot earlier than I normally get up I guess, but still seemed EARLY. At the hospital, all the nurses, secretaries, etc. we were dealing with kept reminding us of the money as soon as we signed in at the front desk. It kinda pissed me off...I guess it is a business, but it made me feel like they didn't care about us; the just wanted their money FIRST. So, I spent about an hour trying to straighten things out with the financial lady, even though it had all been hashed out on the phone already with Andrea. The surgeon was to meet with us at 7:30 and the surgery was to start at 7:45. I was getting pretty antsy at about 7:25 when I was writing checks and making everyone happy. It was incredibly humbling to write a check for $10,000 for the hospital and $1,200 for the anesthesiologist...knowing how many people helped make it happen. We'll get accurate bills soon from the hospital, so the 10K was just to get them to do the surgery that day. The surgeon was paid in full the day before for 7K. Blah, blah, money. So, I was in a hurry to get back to see Abigail before they whisked her away. I made it, and had a few minutes since the surgeon was running a little late. I thought I'd be okay going back with her for anesthesia...turns out I wasn't. I had to wear disposable scrubs, hat, and mask to go back. I thought it was weird at the time, but realized why when they had me carry her back to the surgical room and lay her on the table where they would perform the surgery. That was kind of when it was all really sinking in. They put her under a little different than Riley does. At Riley they lay her down and she is out in 10 seconds. They had her sit up here, and it took about 2 minutes. The worst part may have been that I couldn't kiss her. That freaking mask! I kept trying to kiss her on the head though. I was in tears the whole time...not thinking that they would hurt her, but maybe more that it was all completely out of my control. I was powerless. I am powerless. To make her healthy and without pain. The surgeon did his part and we'll wait and see how well it turns out long term. But I'm am constantly amazed at how God did His part. He made a way years ago for us to have a place to stay here in Chicago. He made a way for Abigail to be our daughter. He made a way for us to live so close to one of the best surgeons in the world for such complex surgery. He made a way for us to cover all costs without insurance. He made a way for Abigail to hopefully grow up with greater use of her leg and no pain or malignancy. Only time will tell on the last part. My mom was at the hospital during the surgery. We sat in the waiting room (Andrea, my mom, and I), for a few minutes, but then went to the cafeteria to eat breakfast. I was doing all I could to keep from crying the whole time. Surgery was to only last about an hour. I kept getting choked up, even eating my first ever serving of corned beef hash (which I didn't care for). We made a stop by the gift shop and then went back up to the waiting room. My phone rang as we approached and turned to see the surgeon waiting for us. He jumped right in and said he didn't want to keep us waiting and that she was doing great! WHEW!!! I wanted to hug him...but didn't. From that moment on things have seemed much lighter. We've been trying to enjoy Chicago as much as we can, but are really trying not to push Abigail too much and help her get some much needed rest. So, between it all, like I said in the beginning I am exhausted. It's kinda the same feeling of being drained after you've done something that takes a big adrenaline surge (like lifting a car off of somebody). I haven't done that, but emotionally, I feel like there is very little left, except thankfulness. I'm thankful for being blessed with more time with Abigail. I'm thankful for our brothers and sisters in Christ who have stepped up in countless ways to make our burden lighter. I'm thankful for His grace, mercy, and goodness, even if we don't deserve it. Mama's sum up. Overall, we are both emotionally drained and tired, which makes interacting with a two year old who is out of her element, tired, and in pain a little harder. And obviously we are both also extremely grateful that we get to be sitting here walking through all of this with so many people around us who love us! We will try to update next week when we get the biopsy results, and I'm hoping to do a 'cago' post with pictures and stories about all that we have done while we are here (taking advantage of free days at museums and such). Tired and thankful,

Wednesday, April 6, 2011

No more tumor!!

Yesterday was the big day for Abigail. We had to be at the hospital by 6 (thankfully that is 7 Indiana time). We did the usual pre-op stuff of talking to the anaesthesiologist, blood draw, talking about history and so on.

The anaesthesiologist attempted to convince me that some children are traumatized for years to come by being put under by the mask, and so they could give her something first to help her be drowsy. I politely refused and said that this was her sixth time with a mask and I thought she would be fine.

They would only let one of us go back with her when they put her under. Jason went and said that they all went on and on about how amazed they were by her. She went down without tears or fighting, and never gave them one bit of trouble. We on the other hand, were not surprised.

The surgery took about an hour. The recovery nurse was also amazed at how she just laid on Papa, sucking her thumb, and not fussing. We were then moved to another recovery room where grandma could come in and be with us. Abigail was excited by her cookie monster balloon that grandma got, and her Blue's Clues dog that Mama and Papa got her.

She did get sick a few times afterwards, even with the anti-nausea medicine they gave her. We got to come home the same day though, and she took a pretty big nap when we got back. Her leg is definitely sore, but if you ask her if it hurts she says no. She is one tough cookie.

The more technical side is that, although he can't make us a guarantee, he feels confident he got the whole tumor out! We are celebrating here. We will get biopsy results from the tumor hopefully tomorrow or Friday. She has a line of stitches about 2-3 inches long on her leg. I'm certain there will be some scarring, but we feel so fortunate that the tumor is gone. We are rejoicing and enjoying our time in Chicago with the wonderful family that is hosting us for the week!

I'll leave you with the video from before surgery and a picture of her after (nothing gory, I won't post pictures of her leg on here). Sorry the video is sideways. I never remember that I can't turn the camera for videos. :)
I'm hoping to write another post soon with more of Jason and I's emotions about all of it!

Friday, April 1, 2011

A brief update.

We have been having lots of conversations at our house about surgery with Abigail. It was completely awkward the first few times to try to fumble through the right words to help a two year old understand what is going on. So right now anytime someone says something about her tumor she knows that they are referring to the boo-boo on her leg where the bump is. She also knows that the doctor is going to do surgery to make her boo-boo be all gone and the itchiness will stop. We have told her that she will go nigh-night and when she wakes up Mama and Papa will be there. I have also tried to explain that it might hurt a little bit when she wakes up, but she keeps telling me it won't so I'm trying not to stress that fact too much. Because she has had so many MRI's under sedation, she understand the concept of going to sleep and then waking up and having Mama and Papa come in after that. We have found that if we can tell her some of the stuff that's going to happen ahead of time, even if she gets upset, she is less likely to cry (although we are fine if she does cry) and if she happens to cry it doesn't last as long because she knew what to expect. Our house is a buzz this weekend with getting laundry clean, things packed, transferring money, and making certain all the bills are sent out. I have appreciated the fact that we haven't really had time to get worked up about the upcoming surgery. We have things that need to get done before we leave Monday. There are still some anxieties hanging around, but all of the big things seem to either have been taken care of, or are only manifesting in moments of scattered thoughts. Although we don't know what sort of bills will come in after the surgery (they will all be from the hospital) we have enough to pay everything we are supposed to pay when we get there. And as long as things go as planned we will owe nothing more for the anaesthesiologist or the surgeon. We have plans to try and squeeze in at least a few fun (and mostly free) things. With the price of gas, and the outlandish cost of all of the museums and such we will most likely be sticking with the free things and eating in (we are staying with a family there to reduce cost). But mostly we are looking forward to Wednesday right now. We will be on the other side of the procedure and have a better idea of how big the tumor was, if she will be able to walk right away or if it will take a bit to regain that, and what the future of this tumor could look like for her. I will update the blog sometime after surgery to let you all know how things went. I will also try to do some tweets to let people know how things went (@hopeforabigail). And hopefully from there we will be having so much fun that we won't have time to be online anymore. Awaiting the day,