GI in Albuquerque

Last week we had a follow up appointment in Albuquerque with the pediatric GI specialist.  He said that her test results looked good (she had a scope and biopsy a couple of weeks ago).  The tissue looked good but he did see a bit of inflammation.  She is on a different reflux medicine (Previcid) and he changed her to Neocate formula.  If you are on Facebook you saw my post about the wonderful gift we received from the doctor.  About 30 cans of free formula; praise God because that stuff is expensive!!!  She gained 1/2 a pound in a week - huge deal for us.  We will watch her for about 4 months or so and see how she does with weight gain and spit up.  If she is still having trouble he will run a probe down her nose into her stomach for 24 hours.  It will record how often she refluxes, how high it goes and the acid content.  From there we will decide what needs to be done.  Prayers please that the medicine and new formula are enough and that she will continue to get stronger and develop those muscles so she won't have to have any procedures done.  She sure has been happy since we changed her formula so that is very exciting.  Thank you for your love and support!

Kelsey, did you know?

I love this time of year.  I have started up the Christmas music and it just puts a smile on my face.  While traveling home from ABQ the last time a beautiful song came on by Amy Grant - Breath of Heaven

Do you wonder as you watch my face

If a wiser one should have had my place?

But I offer all I am

For the mercy of Your plan

Help me be strong, help me be, help me

Breath of Heaven, hold me together

Be forever near me, Breath of Heaven

Breath of Heaven, lighten my darkness

Pour over me Your holiness for You are holy

I began to think about Mary holding baby Jesus, looking down at him and all that he would become.  Growing up, Whitney and I sang the song Mary Did you Know and it still brings tears to my eyes today.  I thought about how she must have felt kissing that little baby, knowing what he would go through as he got older.  You know, we think about Jesus as a baby at Christmas and as a man at Easter on the cross, but can you picture that little baby hanging on the cross for all of our ugly sins?  I can't imagine how that would feel as a parent. 

We always want to be able to protect our kids from pain, suffering, ridicule and everything else the world can dish out.  Mary held her little baby and knew there was nothing she could do to protect him from what was to come.  I started to think about why God chose Mary and why he chose me to be the mother to Madelynn and Annika.  Was there something extra special about her?  Did she have some special connection with God?  Why was she the chosen one?  Why was I chosen to have this extra special child.  I hear those words by Amy Grant, "Do you wonder, as you watch my face, if a wiser one should have had my place?"

I think that no matter how our children are abled, we have moments in raising them that we think, "Are you sure I am the right one for this job, God?"  Well, just as I was thinking about all of this guess what the sermon was about on Sunday....Yup, Miss Mary herself.  

As I sat there and listened to Pastor Monty talk about Mary receiving the news and listening to the angel I realized that what was special about Mary was her obedience to God.  Did she have a few doubts about the information she was receiving, heck yeah!  But, did she let that hold her back from the amazing things God had in store for her, NO!  Her response,

 "I am the Lord’s servant,” Mary answered. “May your word to me be fulfilled.” Then the angel left her." Luke 1:38

Mary didn't posses any powers, she wasn't part angel, she was just like you and me, but she was willing and ready for whatever God had in store for her.  Once she got over her bit of doubt she was ready to go.  I am not sure I can always say that.  If God sent an angel to me right now and told me what he wanted me to do would I be that obedient?  Do I have a heart that is tuned to God, spending time with him everyday, getting to know his voice so that when he calls I would recognize it and be ready?  

When I look down at Annika and kiss her face, I can't even imagine what God has in store for her.  I can't see all the ways he is going to use her little life to show his face to those around us.  When I hold her in my arms I wonder why God chose me, but I know I am his servant and ready for whatever he has planned for our lives.  So, I pray that my obedience will allow God to use me however he sees fit, and I know that through this I will experience the glory of God first hand and in ways I can't even imagine. 

His purpose is greater than our fears

Sometimes I let my mind wander, and, let's face it, that is never a good thing.  I start to worry about what will happen in the future.  What if I die, who will take care of Annika?  What is someone tries to take advantage of her weaknesses (or Madelynn for that matter)?  What if I can't help her be the best she was designed to be?  I start to get scared and wonder why God trusted me with her and with Madelynn.  Then I have to stop, reign myself back and and remind myself that, He has plans for me, "plans to prosper and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I remind myself that HIS PURPOSE IS GREATER THAN MY FEARS!  He has a purpose in giving Annika to me, He has a purpose for her being born at this time and in this world that we live in.  His purpose is greater than any fear I could have.

"For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord.

"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."

Why do I even start to doubt?  I know that God will take care of her and take care of us.  He has a plan, He is sovereign and all I have to do is trust.  So when I start to feel the doubt and fear coming on, because I know it will - I am human - I have to run to Him, trust Him and remember always, that HIS PURPOSE IS GREATER THAN MY FEARS.

My Daughter is....

My daughter is beautiful and sweet.  She loves the sound of her sister's voice.  She loves to play with beads and necklaces and things that make "clinking" sounds.  She loves to roll and get the picnic basket toy from across the room.  She is happy when she is being held but she also likes to be independent.  She thinks it is funny when you hang her upside down.  She is delicate but also tough and can withstand therapy, people poking and prodding her and endless days of spitting up.  She is my joy everyday and she is a sweet smile in the middle of the night when I am so tired I can barely stay awake.  Sometimes I talk to so many doctors and therapists that I feel like all I focus on is what she can and can't do at this point in time, how well she is eating, what to feed her, how I should feed it to her, how she is sleeping and the list goes on.  But she is so much more than all of that and that is what I need to focus on.

Another great blog to share

My sister sent this great article to me the other day and I wanted to share it.  It is really fantastic.
Click the picture below to read this mother's words about her son.

When a Cashier Reminded Me My Son Has Down Syndrome

Getting to "that place"

I know I have been pushed more emotionally, mentally, physically, and spiritually in the last year in ways I didn't even think was possible.  There have been those moments of extreme joy and happiness, but there have also been those moments where I have questioned God and His purpose for me.  There have been moments that I am so thankful that my kids have two parents because I am not really sure I could have gone one.  I have had to find ways to regain my strength in Christ and refocus my attention on what He has planned for me.  This is a GREAT blog post on just that!  Lisa is an experienced mother who explained exactly how I felt.  I am sure many of us have been in this spot.
Click on the picture below to read the article.

Reaching out...

I totally need moments like these where I can see our sweet Annika responding and really interacting with us.  I watch this video over and over again and it just makes me smile.  I need this some days, because there are those other days where I just can't help feeling sorry for m self.  I really don't mean to and then I feel so guilty when I do.  Like somehow I don't appreciate all that I have, and I truly do appreciate everything God has blessed us with.  But there are those moments when my guard is down and I just feel sad.....
I sat and watched a little girl, younger than Annika, toddle up to her mom the other night, reach out her arms to be lifted up and then nuzzle into her lap and I couldn't help it but my heart just sank a little.  Would I feel that?  Will I have that moment when she looks at me and I can see that she knows that I am her mama?  I laugh it off at times when I know there are just things that she can't, and probably will never be able to do in the same way "typical" kids do.  At her audiology appointment the other morning some of the test were way beyond her developmental abilities and I just laughed it off knowing it really wasn't that big of a deal.  They were able to get the info they needed.  But as I walked to the car I remembered taking Madelynn to that same test and the technician just kept bragging about how well she had done for her age and I felt proud.  So, did this mean I wasn't proud now?  Then I just get frustrated with myself for letting these thoughts come to my head.  
So, as I drove back to work I just let the tears roll down my cheeks and for a brief moment I just felt sorry for myself.  I thought of my sweet baby and I wondered if she would ever lift her arms to be to be picked up and my heart tore out of my chest.  I could just see her laying in her bed and thought, "Baby, just life your arms to me."  Then as I started to come back to reality I realized this is probably how our Heavenly Father feels as he looks down at us.  As we struggle, stumble, skin our knees and keep trying to do it on our own.  We don't look up at him, we just keep focused on the task at hand and he looks down and us and says, "Child, just reach your arms to me.  I will hold you.  I will take your burdens and make them mine."  And I am sure his heart breaks as we just keep on and he wants so bad to comfort us.
So, I know the only way I can get through these moments is to lift my arms to Him and turn to Him for the comfort I need.  And then He blesses me with these moments, when Annika claps, kisses us in her own way, or nuzzles her head in our neck to say, "I feel your pain child.  Here is a little gift to let you know I understand and your child loves you in the most amazing way you will probably never understand."  At least that is what I feel He is saying to me in these special moments of life that I may have just passed by before.