Thanksgiving

We survived another holiday. Holidays tend to be pretty stinky around here. The expectation is to get together with family and/or friends and that makes my girls feel bad to be around lots of people. So we have to hibernate on holidays and it makes my heart sad.

We bought a turkey breast for the three of us and it was delicious. But I figured out that just turning the oven on makes Skunk sick. I haven't cleaned the oven in years (REALLY) and all the baked on stuff makes her react. So even if the baking of chicken or crackers doesn't bother her, the grime on the inside of the oven causes a reaction. So I have started scrubbing but I have to open the window and do it. This sensitivity stuff is just more than I can bear right now. I am praying frequently that God will allow Skunk to survive until I can get her gut treated and then that he will help her to heal. I can't feed my family because it makes my baby sick. This is so hard and miserable.

Only God is wise enough and powerful enough to help us through this misery. Please God, please be here and hold me. I just can't do this on my own. Help me to endure and be able to praise you in the midst of the storm of my life.

Decision Made

God is so gracious... as if I could doubt it. I have been seeing a few nursing home patients in the last 6 months to make ends meet while on maternity leave. I didn't know if I would like it enough to continue once I got back to the ED swing of things. Well, I don't like it. The little old people are nice enough and I do like them. But I don't like the environment of ordering tests and not getting lab back, not being able to care for patients like I want to and the general institutional feel of many of the homes. Yesterday my supervising doc called and we visited. He is frustrated with the local homes here and is going to drop the few he has here. (He is based out of about 40 miles away.) So I have my easy out of leaving the nursing home business without just quitting. I am so relieved. I have been struggling to work my shift at the ED and then on Sundays I have to spend the afternoon seeing NH patients instead of at home with my family. Thank you Lord for providing for us and then getting me out of what I don't like doing. =)

Ups and Downs

We continue to have ups and downs here. I have been slack about posting. Skunk is doing decently on Neocate but it is not the answer to all our difficulties by any means. The only thing it accomplishes is that I am out of the loop on causing her to react. But she doesn't get as many calories as she cannot tolerate a typical amount of Neocate. But it will sustain her and let her grow. I continue to make a daily effort at being thankful. I told Bear today that she wasn't as stable as Skunk is now until she was 4 years old. It took us that long to unwind and unravel all her triggers and problems. With God's help, Skunk hopefully will be better off and Bear can continue to heal.

I am back at work in the ED and loving it. We have quite a few more people working than when I left so getting enough shifts is actually a problem. I had to talk to our managing doc and let him know that I need 4-5 shifts a month. He is going to work with me and see if we can keep me working. I love the ED work so much more than the nursing homes. I am going to attempt to keep seeing nursing home patients at least until April and make sure that things are working out in the ED.

Skunk is not sleeping well enough for me to work later night shifts and still get some sleep. She is very typically up about 430 or 5am and she and I walk the floor and then sometimes I can go back to sleep on the couch with her on my chest. Sometimes I can't go back to sleep so I walk or rock in the rocker and pray. Sure has gone a long way to keeping me humble and before my Lord. Ironic... ;) God uses our precious little ones to draw us to himself in so many ways.

I will leave you with a picture of my life's work... to God be the glory, great things HE has done!

How long, O Lord?

Well, Skunk has been on Neocate for about 4 weeks. She has steadily been declining back to screaming and not sleeping. So she does eat and then starts screaming at us again. I am so frustrated, angry, disappointed, you name it. This just stinks. There are no other words to describe having to walk the floor while your baby screams and screams and apparently hurts or feels bad and you can't change it one iota. I am so glad that I didn't know that the next baby would be the same as the first. I seriously don't think I would have done this again if I had known. My life is not sleeping, carrying a baby, hands and wrists hurting from holding and mind rolling and raving - trying to figure out what in the name of heaven is hurting my baby.

My hope is nothing less than eternity and the saving blood of Jesus Christ. King David said it better than I ever could:

Psalm 13

1How long, O LORD ? Will you forget me forever?
How long will you hide your face from me?

² How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?

³ Look on me and answer, O LORD my God.
Give light to my eyes, or I will sleep in death;

⁴ my enemy will say, "I have overcome him,"
and my foes will rejoice when I fall.

⁵ But I trust in your unfailing love;
my heart rejoices in your salvation.

⁶ I will sing to the LORD,
for he has been good to me.

Dress up

When you are almost 4 months old, you don't usually play dress up. Unless you have a seven year old sister who loves to wrap in playsilks. ;)





But then you get tired of being covered and tied up and you start to get fussy...



and the jig is up.

Boy, is my baby cute or what? ;)

Hard Weekend

T had to mow yesterday. We have avoided this like the plague since Skunk was born because of how badly Bear used to react to our yard being mowed. And true to form, we had night waking and a difficult day today. Poor baby!

Bear and I went driving and exploring today by ourselves. She and I haven't been anywhere together since Skunk was born. Today we went driving and found a housing development and walked and drove around. We packed our lunch and had a lovely picnic, just us two. I miss her so much. I am glad that she and I had seven years together before we had another screamer. I so badly want to be in a tight house with a wonderful filtering HVAC system but that costs lots of money. I just don't want to be in debt to our eyeballs and me have to go to work all the time. Stuck between a rock and a hard place. But thank goodness this one is paid for! At least we don't have to consider making the house payment on this one. Praise God!

I am still sad about not feeding Skunk but I am also continuing to try and see how beneficial Neocate is for her. She was struggling so much with being breastfed. This is better for her but it is emotionally difficult for me. I miss that sweet connection but it had become a fight to get her to eat. I need to remember that when I get sad. Thanks be to God for providing for my girls!

Just Sad

My dreams are broken for Skunk... I didn't want to do this. I just wanted a baby who could go outside and wasn't so bloomin' chemically sensitive. I wanted to feed my baby myself and not from a bottle. Guess I am not in control, am I? Back to read Job again...

Someone I knew online several years ago had a quote in her siggy - "when something is wrong with my baby, something is wrong with me." I feel so sad that Skunk has to suffer and be so sensitive. There is quite a bit rattling around in my head... the death of a dream, the daily struggle to keep her eating and sleeping, the great lengths that we have to go to in order to keep our girls healthy. No McDonald's or frozen foods or the easy way out for us. I am thankful that God has given them to us so that we can take care of them though. I wonder what other kids do whose parents don't figure out the chemical side of things. I am thankful for a husband who listens to my crazy ideas and jumps through crazy hoops to keep our girls healthy and mostly happy. I just wish, hope and pray that someday we can help them to heal so that they don't have to struggle so much.

Please God... hear the cry of my heart and help my girls