Monday, June 22, 2009

My little girl

For some laughs:

Yesterday I asked Amaya a question and she looked at me and said, "actually, yes." It was so funny because it fit whatever I asked. What a cutie.

When Amaya has something she doesn't want me to take away and I take it away, she looks at me and says, "Mommy don't take it away." (in a little girl whiny voice). It's usually not funny at the time but when I think that she is only two years old - it makes me smile.

Amaya's progress:
Amaya is doing great!! She is off antibiotics and last night when I asked her if she was hurting anywhere she smiled and said, "yes." So that really means no. It had been more than 6 hours since she had any pain medication so it looks like we're past that part too!! When I was asking her if it hurt anywhere she first pointed to her other side and then she smiled and said, "No mommy this ear is fine." When did she become such a big girl?

She's still sleeping @ 9:21 this morning so I think she has enjoyed a night of no medication interruptions - as did we!

The incision by her ear looks absolutely wonderful. I can't say the same for her neck but it looks like they had to stretch the skin to close it.

I'll have to get those pics posted so you can see.

Thursday, June 11, 2009

Good Bye Riley (Children's Hospital)

The title is appropriate because we finally found out what has been causing Amaya's neck to become infected over and over and over and over. No that's not a typo. Her neck has had a small infected abscess about every 10 days since February. In fact it became so common that we didn't even get too concerned about it.

The neck infection procedure:
It would look great like it was healing up. A couple hours later we saw a little white spec about the size of a pen tip. A few more hours it was the size of a kernal of corn and then by the next day it had usually tripled or quadrupled in size and then sometime in that day we would have to "pop" it to allow the pus to come out. The last two times this has been horrible. The second to last time she threw her arms up so hard and unexpectedly that I bit my tongue which left a nice red mark for several days. Not a fun time for either of us.

Timeline:
June 2008 - Chad and I noticed a small pea-sized bump under the skin in Amaya's neck. We decided that we would talk to the doc next time we went.

November 2008 - On a Thursday we noticed that the bump under her skin had gotten noticeably bigger. By Friday evening we were really concerned since it seemed to have doubled. We had an appointment on Sat. morning. She started antibiotics right away. By Sunday afternoon it started turning red. It was more red on Monday and by Tuesday afternoon had started to get really "tight." On Wednesday it had started scabbing and we noticed the first signs of pus. Wednesday at 10pm she had her first surgery which left a gaping hole in her neck.

December 2008 - Infection returned again - another round of antibiotics

January 2009 - Second surgery

March 2009 - Infection returned again and again - antibiotics again

May 2009 - Infection returned again about every 10 days - no antibiotics

June 10, 2009 - YESTERDAY
We went to Riley for a scheduled surgery on her neck. This surgery was supposed to last about an hour and then we could come home again. (In and out in one day). We were in the waiting room and the nurse came to give us and update and from the look on her face it seemed like something had happened. She told us that Dr. Engum would come talk to us as soon as the surgery was done but it looked like they would have to continue to work on her.
As Dr. Engum was working he found that the trac that he had taken out in January had completely returned (not a good sign) and that it was connected to something up near her ear. This was not his specialty so he called in another surgeon for Ear Nose and Throat. At the time that he was talking to us the other Dr. was already removing Amaya's left tonsil to see if the Branchial cleft (pharyngeal arch) ended in her tonsil. Disclaimer: I really don't know if I have all the medical terminology right but this is what I remember. We waited for another 2 hours or so and then we were called down to another floor to talk with the other Dr.
He said that they didn't find the end of trac in her tonsil so they would have to do another surgery cutting at the front edge of her ear and up the back and then coming back down again. (An S shape) He explained that there were risks associated with this surgery. The facial nerve could be damaged. At worst she could lose some function in the left side of her face. At best the nerve was not near the trac and nothing would happen.

From that point she would be in surgery another 3 hours.

WOW - 3 hours! So long to wait to see your little girl. I was never worried about the surgery but the facial nerve thing did worry me a little bit. I was sitting there and I realized that I really did have peace about the surgery and to me it didn't matter how long it took. I wanted them to be thorough and I just wanted this whole ordeal to be done. It's been almost 7 months to date from the first surgery to this one.
We waited and then waited some more and then they ended up being done sooner than they expected.

This is a whole lot of info so I will update more later. It's been a looooong two days for everyone involved. The important thing is that this evening Amaya finally gave us a full real smile something she hadn't done since yesterday morning.

Here are some links to some older posts concerning this subject it starts from the oldest to the most recent. All of these posts were sometime in Nov. and Dec. 2008.
Our Recent Journey
Sunday Updates
More Updates
Our Riley Appointment
Amaya Updates

Tuesday, May 12, 2009

Riley Update

We had an appointment for Amaya at Riley almost two weeks ago now. Dr. Engum told us that we would need to schedule another surgery so he can try and figure out what is going on in that little neck of hers. =/

I'm not very happy at this news since this is the THIRD surgery that she has had since Nov. I know in the big scheme of things this is not big but I think about my life and I have NEVER had a surgery and she is just TWO.

Thankfully our insurance should cover everything since Chad just started his new job two weeks ago now so we don't have a whole lot saved up.

Please pray for Amaya for complete healing. This has been one of the most frustrating things I have ever experienced in my life. Probably the most. I want to understand what's going on.

Chad and I both want it to heal up completely without any recurrances. We were just talking the other day about getting a second opinion. When is the right time to do that? How do you do that? Our doc. says, he just doesn't understand what's going on. What we want to say is, "FIGURE IT OUT!!"

"Many are the afflictions of the righteous but the Lord delivers him out of them all." Psalm 34:19

Thank you Lord for your unfailing love. Thank you Lord for your mercy and grace in times of frustration. Thank you that you hold nothing against me. I trust you Lord to deliver me.

Thursday, April 30, 2009

Keep Me focused...

on you Jesus!

Today was one of those days where I was just plain tired. I know when I am tired my mind seems to wonder. I think about so many different things and then it turns negative.

We had another Riley appointment for Amaya today so we got up early. I didn't get to bed until about midnight and then Mak got up around 6 and then didn't go back to sleep like he normally does. Didn't really matter because I knew we were going to be driving soon. Anyway, I got back and almost fell asleep while feeding him. I knew I should take a nap but had 5 loads of laundry to do and dishes and a messy house. If it had just been the dishes and messy house I would have said forget it. Couldn't do that b/c you see we are leaving for Shipshewana tomorrow as soon as Chad gets off work.

Monday, April 27, 2009

Chad has a new job!

Finally...Chad has a new job. After months of praying and frustrations on my part, he finally has a job. I have to admit that I believed a door would open but my hope was getting thin.

He was called last week to talk with a company he had interviewed with in Dec. That job that he interviewed for at that time was phased out of the company because of budget issues. They told him at that time that he was their #1 candidate and that they would call him if something else came up. It came up and his first day was today. PRAISE GOD!!

When he went to talk with them on Wednesday, they asked him how much he would like (money-wise) and he gave them a range and then came home and told me all about it. =) A few hours later they offered him the job. They salary they offered him was +$5,000 what he had asked for.

What an awesome blessing!! For a while now it's been a struggle financially. When Chad told me about our budget, I got worried because we were short several hundred dollars. I say this because in all the months that we should have fallen short, we never did. God faithfully provided as His word says. We have been faithful in our tithes and offerings. On top of that, we also started giving to our church building fund. (Totally Chad's doing on that part. I definitely did not have the faith for that.) I often have a difficult time when it comes to finances. I worry when I shouldn't! God has always taken care of us....ALWAYS!! We've had two prophetic words given to us about God's favor being on us! That is truly the case with us!!

On Saturday, Chad was mowing and he found lots and lots of mushrooms on the edge of our property...just another way that God's favor is on us. =) It's a little funny to think of finding mushrooms as God's favor but it was a great ending to an already great week.

Monday, April 6, 2009

Days that end in Y - #2

So I said it was to be continued...here is more.

While I'm so thankful for God's grace in my asking, I want to be more trusting. I want to trust Him and never doubt. I want to be so in tune with Him and always know without any doubt that He is going to take care of us.

I have a difficult time looking at Him without thinking I have to do something.

For it is by grace you have been saved, through faith
---and this not from yourselves---
it is from God.
Ephesians 2:8

There have been so many times, I beat myself up about what I haven't done, what I'm supposed to be doing. In whom do I put my trust? God asked me simply to believe Him. So many times I'm trying to please man because it makes me look better. Jesus help me please you and you alone in ALL things!

So this weekend, Rod Aguillard gave my husband and I word from the Lord. He said the Lord's FAVOR is surrounding us.

Sunday, April 5, 2009

Days that end in Y

A song by Jeff and Sheri Easter is the inspiration for this blog posting.

So many times over the last months, I've asked God why.
Why has Chad not found a job?
Why are we going to Riley for Amaya?
Why is Amaya's bump (boo boo) on her neck not going away?
Why am I going through these things?

Why Why WHY?

I've often felt guilty for asking why. I thought asking why meant that I didn't really trust God. I thought it made me a bad person - less of a Christian. It's been a battle that I've had a hard time talking about. I am not used to opening up about these things. I have this problem with appearing weak. I often think I shouldn't be feeling this anymore. I should be this way or that...problem is I don't so it's this crazy cycle of negative feelings...condemnation....mistrust. Some of this turned to bitterness because I didn't deal with it.

All along, if I would have just asked God to show me what to do, He would have taken me to Job. This past week, I read a friend's blog and he mentioned a scripture in Job. So I finally went to Job, to the book that is all about loss and a testing. I wanted to see how Job responded to God.

To my surprise, he asked God why all the time in the first 13 chapters that I read. Then yesterday we had a leaders meeting at Church and the speaker, Rod Aguillard, spoke on this subject...one thing he said that really spoke to me.
You can ask God why, just don't charge Him....basically don't blame Him

Wow, how freeing that is. Thank you Jesus for your grace!

Aren't you glad that He waits patiently? I am so glad that He didn't give up on me. He truly loves me so much and He is always waiting with His arms open wide.

To be continued...