Our nf appointment

Abigail enjoying the water in Riley...


Abigail walking around in between appointments...

The first neurologist appointment has been completed. We went, we saw, and came home tired. Over all it was a pretty great day considering it was spent entirely at Riley Children's Hospital outpatient. Abigail only got sick once on the way down...and we were so prepared that we didn't have to change her clothes or wash her car seat again. Her sweat test worked this time (and she does not have cystic fibrosis). So we won't have to do that again. Her hearing is great. We ate McDonald's for lunch (and Abigail had her very first happy meal...judge all you want...today deserved some fast food), and Abigail loved all of the stuffed animals and water fountain in the hospital. She loved being able to walk holding our hands.
The neurologist appointment was this afternoon. First of all we came to the waiting room and there was a mom with her two kids. They all had nf. I doubt that others would have been able to look at them and tell, but all of my research has brought me to a point where I saw it right away. Then we waited and Abigail played for a while. I overheard someone telling someone else that this was the nf clinic...the disease the elephant man had. I nearly said something to them...but contained myself before I caused a scene. The elephant man had proteus syndrome. Not nf. For some reason though he is still associated with this disorder.
When our turn came we were both feeling...fine, calm, and ready to face whatever the Doctor had to tell us. We saw a med student first...went through history....other health issues....and on and on. Then the doctor came in and examined her. Annoyingly he still can't "officially" diagnose her.
Nf1 has a list of things that can get you diagnosed. You must have two. Abigail has two...sort of. You have to have 6 or more cafe au lait spots that are at least 5mm. She has 30 cal...but only five that meet the size criteria. You have to have groin or auxiliary (arm pit) freckling. She does...but she only has two freckles...and you must have three. So we are one cal and one freckle short of making it official. For those of you who don't know about nf she will eventually meet the criteria as things appear more as the person ages.
The last part is the only thing that is sort of scary as a parent. Abigail has macrocephely (a large head)...which we knew. It is also very common with nf. She apparently has lower muscle tone as well. On top of that she has not grown at all in height in the past few months. So the things these could point to are hydrocephalus (which is also something that can come with nf) and a tumor somewhere causing issues. So next Tuesday we will go back to Riley for a brain MRI.
So overall the day didn't feel good or bad. I think we had researched enough that we were not shocked by anything he told us. We aren't very upset about any of it right now. I feel like we can feel the prayers of the saints washing over us with peace. We are not fearful.
We are grateful to be surrounded by people who love us and love Jesus. There is something truly peaceful to be sitting and knowing that people all over the state, country, and a few in other countries are praying for us, and thinking about us. So thank you everyone. We appreciate all of you more than you will ever know. We will continue to update when we find out more.

Filled with the peace that passes understanding,

As the day draws near.

It is slowly making it's way into my thoughts again. It is like it has sort of crept up slowly and now it's moving at full speed. We have one week left until our first nf appointment. For the most part I have prepared myself...I think. I am fairly certain that the diagnoses will be made official. From that though, I don't know what else to expect. I don't know if they will want to schedule an MRI, or x-rays, blood test, appointments with a geneticist, or oncologist. I just don't know.

And that is the part that has me lying awake. The unknowns. What if they find something. What if she has a horrible tumor already that is slowly causing her more and more issues. What if.....I can't even bring myself to write very many of the other things I can think up. So I find myself attempting to fill my time with reading and checking facebook. My mind numbing housework is hard to do because everywhere are small reminders of Abigail; and they nearly always lead me to thoughts of the appointment.

It is the last appointment that we have to make it through for a month. That is granted that she stays healthy. A month might not seem like very long, but we have been to at least one doctor appointment every week for the past six weeks. A month off would be a huge relief. I'm glad we are knocking out three appointments on Tuesday as well. It means that we will be at Riley ALL DAY, and that we will most likely have a tired crabby kiddo, but it will all be done.

Since my goal of this blog is to be honest and informative I will tell you I am scared. I am scared for my daughter and what her future holds. I am scared that she will have a severe case of nf and go to be with Jesus well before I am ready to let her go. I am scared that I don't have what it takes as a mom to do what's best for her. I am scared that she will be bitter at God one day. I am scared that my heart will break from the pain I feel and the longing I have for her to not ever have to face this sort of disorder. I am just scared.

Since I am being honest I will also tell you that I don't want to hear that God only gives me what I can handle, or that He has some sort of purpose for this. I have said this before and will say it here. God did not give this disorder to my baby. He is not testing me or Jason. He isn't trying to find out how much we can handle. She has a disorder because the world is a fallen place.

Psalm 121
A song of ascents.

1 I lift up my eyes to the hills—

where does my help come from?
2 My help comes from the LORD,

the Maker of heaven and earth.
3 He will not let your foot slip—

he who watches over you will not slumber;
4 indeed, he who watches over Israel

will neither slumber nor sleep.
5 The LORD watches over you—

the LORD is your shade at your right hand;
6 the sun will not harm you by day,

nor the moon by night.
7 The LORD will keep you from all harm—

he will watch over your life;
8 the LORD will watch over your coming and going

both now and forevermore.

I am thankful that my God is watching over my baby. He is much better at it than I will ever be. I need to sleep sometimes. He holds her all the time. Just like Abigail so sweetly sings;

He's got the whole world in His hands,

He's got my baby bug in His hands!

R-E-L-I-E-F

Abigail's first sink bath!!


There is now a sense of relief at the Mann house. We know what we are up against, and can move forward with handling it. It's daunting, but done by one in ten Americans all the time.





Asthma. Abigail has asthma. We spent the morning at a pulmanologist at Riley Hospital for Children. Apparently children who appear sick (wheezing, coughing, running nose) but act fine are most likely dealing with an asthma attack. Over the past thirteen months there have been few times when she has been sick and not seemed fine.


Hopefully this will at very least cut down on what appears to be illnesses, trips to the doctors, and taking medicine (aside from her asthma meds). I don't know that relief is what most people feel when they find out their child has asthma, but the fears of what might be going on were way scarier.





I don't know if I can put into words how thankful I am to have such a great hospital near us. We have had nothing but good experiences there. Even the x-ray technician today was amazing and kind. Abigail will hopefully only remember that she got ducks and a bear from Riley today. I will remember the people who explained everything to me, were kind to my baby bug, and treated us with respect.


I also have to mention that I am incredibly thankful for Jodee. She is Abigail's biological sister's adoptive mother. She went with me today, and feed Abigail cheerios while the doctor explained things to me. She hauled our bags from place to place as we had a few test done. She talked to me, and entertained Abigail. But probably the thing that made the day the most peaceful to me was that she drove. I hate driving in Indy and am incredibly directionally challenged. So not having to worry about that meant that I was not anxious when we arrived, or stressed on the way home with a worn out little girl (who slept all the way home).





So over all we have something else to face medically, but are both relieved that it is not the worst case scenario. It will mean more trips to Riley, but hopefully that will give me the push I need to develop confidence in driving back and forth to the outpatient parking garage from our driveway!!





Peace filled parents,

From one beggar to another

Abigail sliding all by herself. That precious girl that takes up my time and energy (I'm not complaining).

I'm longing for that connection. The feeling of knowing God is right there; the very breath I'm breathing. I don't feel distant. I just feel like a busy mama. I know the Lord is gracious to mother's of small children. (Isaiah 40:11). It's this beautiful image of God sustaining me. And He knows that there are SO many days (especially right now) where I need Him to sustain me. I just feel tired, overwhelmed and anxious. We have so much going on, and we are heading into a season full of trips to celebrate with family.

Since Abigail is still sick I went to church by myself yesterday while Papa and Abigail stayed home. It was so weird to not be watching my daughter, and holding her, and trying to keep her from disrupting. It's been over a year now since I have been able to focus my full attention on what our pastor was talking about. He was teaching on James 2. It talks about not showing favor because people have more money, have it together etc. He talked about how church should be a hospital for the sick; not a place of condemnation, hatred, segregation, showing off riches, or attempting to obtain more wealth. I know all of this, and this is the reason I go to a church that lives among the people we are reaching out to. Our church is full of black, white, poor, wealthy, educated, uneducated, homeowners, and homeless. I know this sounds unbelievable, but come see for yourself. The most beautiful thing though was how he described reaching out to people. That instead of looking down on others we need to realize that we are as big of sinners as the people we are reaching out to. We need to show them mercy. He said "mercy is like one beggar telling another where they can get food."

I am a beggar. I know Jesus so I know where my "food" comes from. I know who sustains me in the chaos that ensues my life at the moment. I know where the peace that encompasses me through Abigail's illness comes from. I hope that through living my life I can show those around me where the food is.

Life is hard. Having Jesus does not take away the problems and pain. It just brings about peace and hope in situations that are full of turmoil and seem hopeless.

A wretched sinner saved by grace,

sicky mcgee...

Abigial and papa at Aunt Tabby and Uncle Adam's wedding!


So the last week has been more than a little stressful for this mama. Last Sunday night we went to the e.r. for Abigail's fever and wheezing. Monday she seemed better. Tuesday her fever went back up...new antibiotic. Tuesday night wheezing resumed. Wednesday we went to our doctor. She gave us breathing treatments. Thursday a little better. Friday morning...more wheezing. Phone call to the doctor again...increased one of her nebulizer drugs, and is referring us to a pulmanologist. So here we are Saturday night. She is still wheezing off and on. Her fever and runny nose have returned. Sigh.



I have no idea what is wrong with her. I don't know why she isn't getting better. I am trying hard not to freak out, but all these different scenarios are going through my head. This little girl keeps getting sick and it is just getting closer together every time. I am grateful that I didn't start a new job because I would have lost it due to having to take so much time off.



So for all of you followers known and unknown, please pray for Abigail. We want her to recover. Fortunately she is still a very happy sick little girl. It just sucks from our perspective watching her be in pain, and thinking about what might be inside her tiny body causing all of these issues. We also could use some prayer for us. It's scary, as well as emotionally and physically draining.



Thank you all for your love and support.







The sicky mcgee's parents,

You take the good, you take the bad,

you take them both and there you have, the facts of life....enjoy that theme song going through your head now.

First of course is taking the good...so we had a fun four day weekend. We left Thursday morning and spent Thursday and Friday preparing for my sister's wedding. She got married Friday night. It was beautiful and wonderful and we are both really excited for Tabby and Adam (and Javin having a new step-dad). I also got my first ride in a limo which was so awesome for me. :)

The church before the wedding.

We decided to stay until Sunday to get in some extra down time. We stayed at Jason's uncle's cabin on the Tippecanoe river. It was really great and relaxing. The trees were all starting to turn and we had this beautiful view of the water and forest on the other bank. It was a peaceful spot to rest. We got to spend time with both of our families which we always enjoy. Abigail took her first steps on Saturday. There was just so much good about the weekend. The view from the cabin we stayed at.

Then came the bad. Abigail seemed to be off all weekend. We weren't very surprised since all of the wedding festivities had meant missed naps and late to bed. She started to show signs of a cold and have a low grade fever. I figured we would end up at the doctors office today with another ear infection. On the ride home last night though she started to wheeze. We called the doctor and he said take her to the e.r. So I did. Four hours later we came out with the diagnoses of bronchiolitis starting to go into pneumonia, and of course an ear infection. It's exhausting to have a child whose health already causes me to worry. Then on top of that she seems to get sick more than most children. I actually sat in her room last night and cried while she slept on me. She is truly just such a great little girl, happy and full of joy. Even last night she acted fine, but she was so sick. I'm sure this is a great personality trait for a little girl with a life of unknown health issues to face. However it makes me sad to see how much she seems to suffer.

But as the title says the facts of life are that people get sick. We have to take the sick along with this incredible blessing that we have. She takes it all so well so I'm going to try to take my lessons from a one year old who seems to get the facts of life much better than I do already!

Abigail's first steps!!

Learning the facts of life,

A blog on race...

One day all things will be reconciled to Christ and each other, across racial, socio-economic, age, and any other boundary that exist.

Race in America is still a touchy subject. Despite the fact that many will claim that racism no longer exist, and that America is a melting pot, if you talk to someone, other than a white middle or upper class American, they would most likely disagree. I will say that America has made huge strides forward. I won't tell you what my political views are, but I did cry when I held my daughter and watched a biracial man take presidency. It was a huge day for race relations in America.

So four years ago when Jason and I told our parents that we were going to move forward with the adoption process we also let them know that we were open to any race, special need, or older child. We felt like God was telling us we would have a black or biracial little girl. So we read books about race, talked to people, and eventually brought home a black little girl. (A little side note: I choose not to call her African American because first of all nobody refers to me as Welsh American, and second of all I don't know what her lineage is.)

We did not walk into this blindly. Despite how "progressive" America now is, we were well prepared for the stares and comments that would probably come our way. We live in a town (and a neighborhood) who has a fair amount of black and whites in their population (with a few Latinos, Asians, and others). Overall I do not feel much animosity when we are in public with our daughter. We have gone to a few other places where we quickly felt uncomfortable by the stares.

Before Abigail was born I had numerous people tell me that black people would be mean to me about adopting a black baby. So I was prepared to defend with how her birth mom chose us despite the fact that we are white. I have NEVER once had a black person say anything mean to me. NEVER. I have had a black lady hug me and tell me God bless you for adopting her. Our black neighbors tell me I'm doing a good job with her hair (which is a huge compliment to me), that she's beautiful, and lots of other things. Never have they condemned my husband or I for adopting a black baby.

On the flip side the only two blatantly horrible things that people have said have come from white men. We get stared at way more by white people when we are out. (I do know that some people are looking because they are curious...I tend to stare when I see other interracial families). For some reason people think that it's okay to share prejudices if they start it with "I'm not racist but..." When I hear this I just go ahead and prepare myself for their "vaguely" racist comment that is coming.

However my three favorite things that have been said to me all came from the mouths of babes. Oh the beautiful innocence of children. The first was a niece. She was telling me how much she loved Abigail's curly hair. I responded with something about how I have always loved black people's hair and been envious of all the cool braiding and things they can do. She looked at me and said, "Why do they call them black? They aren't black they are brown." The second comment came from a second grader at church who said something to the likes of, "Black people's hair is different than ours, I'm not trying to be mean, they just do their hair different." My favorite though was a girl at the doctor's office yesterday. She was asking me if Abigail was a niece or a friend. I could tell she was confused by the race difference. I asked her if it would make more sense if I said she was adopted. She laughed and said, "That does make more sense because your skin is two different colors." I think her mom was a little embarrassed (especially since the waiting room was filled with both black and white people), but I loved it. I wondered how many adults in the waiting room had been wondering the same thing and been too afraid to just ask.

This girl summed up so many things for me. It's okay to notice a difference in people. I notice people with red hair because it's not very common. I notice people who are extremely tall or extremely short. None of these things define who these people are, they are just features that are very noticeable. People notice other people's skin color. That in and of it's self is not bad; it is what you do with your thoughts about their skin color that makes the noticing either normal or prejudice.

So glad to have a child who makes me think about these things,

nostalgia...

The fateful spring break retreat where Jason and I became friends...

I have been a Christian for almost ten years. My husband has been a Christian for nearly nine years. We spent the day at an alumni event for the college ministry we attended. It was a pretty fun day getting to hang out with people and hear about their lives, and talk about ours. There were a few events over the course of the weekend, but the evening one was a dinner, some worship and just fellowship.



After we got home and put our very sleepy baby to bed we had a conversation about what we were thinking. It was amazing that during the worship aspect we were thinking nearly the same thing.



We are so thankful to this ministry because it is the place that both of us really formed a relationship with God. We learned so much while we were there. Even though we now go somewhere else, we did not leave because we were upset or bitter. And looking back nearly ten years later we both wondered what life would be like for us now if it had not been for that group of people.


It's fun to look back and reflect on where you were and where God has brought you too. Jason became a Christian at this church, this is the place that taught me how to go beyond the words to an actual relationship with Christ, we met at this church, and are now married with a wonderful baby girl.


It's amazing to look back over the years and see that even though we are in the midst of what feels like chaos right now we serve and amazing and powerful God who has done mighty things in our life, and who will continue to do mighty things in our lives. Amen.





Feeling nostalgic,

Changes....

I can't help but continue to think this one thought over and over. As we get closer to Abigail's "big appointment" in November my thoughts often meander towards God. Jason and I are Christ followers. We attempt to live what we believe.

The day we were sitting in the room and heard all of the talk about nf will NEVER leave me. Walking to the car, the ride home, the conversations with family. Those things will remain in my head forever. I know where we were for each thing. I remember the order we told people in. I remember Jason and I's exact responses.

That day and the days that have followed have changed my life forever. I will never be the same. Every time I hear someone say horrible things to or about their child I have to refrain from saying something to them. Do they not know what a blessing they are beholding. I knew before the diagnoses, and now I want to cherish every moment even more.

I have been on forums where people talk about genetic engineering and how you can have an embryo tested before hand so you don't end up with a child with nf. I become physically ill at the thought. Really? My baby wouldn't be here then. Abigail is not defined by nf. However if someone had decided to test when she was an "embryo" that may have been the definition that had ended her life.

I have lots of other thoughts swirling around in my head. Jason and I have been talking about the appointment in the future, and decisions we have to make regarding her care. It's really hard to try to decide what's best based on our opinions and a doctors knowledge.

So back to that one thought that I keep arriving at. God has not changed. This is something that is very comforting to me. Every time I learn something new about nf, am faced with another medical decision, or hear someone else's story my perceptions change. However God is the same as He was before she was diagnosed, while we were sitting in that room, and will be the same tomorrow. And for that reason I will continue to go to Him when making decisions, having a hard day, or rejoicing at the sight of an amazing blessing sitting in my living room throwing a fit. :)

Taking comfort in the Alpha and Omega,