Friday, October 31, 2014

Needing a picture

There is nothing Annika loves more than her big sister and I truly believe that there is no better therapy than the two of them playing together.  Madelynn is the biggest advocate for Annika.  She watches out for things she might be allergic to, she encourages Annika to do things for herself and she makes her smile everyday.  Madelynn picks her up and carries her everywhere and I figure protecting herself is great therapy for her.  I know they will be the best of friends for life!

Constant experimentation...

About 3 weeks ago we found out Annika was allergic to milk and soy.   What have I been feeding her for he past year....ding, ding, ding, you guessed it MILK and SOY!  I was feeling like an awesome mom.  No wonder she has been throwing up her entire life and have barely double her birth weight.  It made me so sad that I had been doing this to her.  But I had to get over that and figure out what to do next.  I hate those "special" formulas that cost a fortune (unless of course I had no job then the government would pay for the, but because I have decided to help other kids, we would have to pay for it ourselves --- great system!) they stink and smell like dog throw up!  So after talking to my friend we decided to try coconut milk.  And as luck would have it, she loves it.  After 2 weeks on it though she really isn't gaining weight.  This always stresses me out!

Well, we finally made it to the GI in Albuquerque (I have been wanting this appointment for MONTHS).  He was not quite what I was expecting, but he did have a different insight to her throwing up.  He thinks many kids are misdiagnosed with reflux and really have esophagitis (inflamed esophagus).  So, back to the drawing board.  She will have a scope and biopsy in 2 weeks to confirm and them we will start treating with foods and medicine.  I have definitely found that the more specialized doctors get the less bedside manor they have.  I know this guy can help us, but I just wanted him to care a little more about what we had been trying instead of insulting our efforts and our choice to put her on a medicine that can be harmful.  This is when I am thankful that Bruce is in these appointments with us.  His response, "Well, we either put he on the medicine or she would have starved to death.  What would you choose?"  I love that man.  And he is sooo right.  Well, in his flippant tone he mentioned that the coconut milk didn't have enough protein.  Even though I felt a bit defensive at first (and he just like all the other doctors really had no suggestions for us) I realized that I could figure out ways to get more protein into her.  So, here we go again, trying something else.  Chicken, eggs, quinoa and beans.  Luckily she is such a good eater and she seems to like everything we have tried.  I guess we will see where we are in another couple of weeks.

As my uncles and dad would say, "That license on the wall is to PRACTICE medicine, they are experts either."  Boy have I seen this in the last year.  I feel like have have to constantly research and talk to other people to figure out what might help my kid.  Shoot I am going to be able to go into the medical field by the time she is grown (I actually am thinking of a second career already---but that is a post for another day).  I am thankful for the times we live in and that the "experts" are just a short drive away, bu sometimes if feels like an uphill battle.

So onto the next experiment.  All I have to say is, at least my little girl is happier and that makes me happy!

Monday, October 27, 2014

The little things are big

I remember being at a cheer leading exhibition (I know, me at cheer leading but I was supporting a friend's kid) and Madelynn was sitting in my lab and for the first time she started clapping.  It was exciting, and I was worried that she was clapping at cheer leading (well, now when you ask her what she wants to be when she grows up she says a cheer leader and a dancer----trouble :) ) That is about all I remember about the experience.  From then on she clapped.

Well, Annika has given me a different perspective on the little things, that really don't seem so little anymore.  As we sat in the living room as a family I told her, "Clap Annika" and waited a few moments.  She started to bring her hands together and apart and together.  I couldn't believe what I saw.  "Bruce, look at this!"  I told her to clap again and it took a minute but she did it.  With tears trickling down my cheeks I saw that she really is in there hearing what we say.  (Yes, I knew she was but when you don't see those responses that other kids tend to give it is hard to tell and can be a bit discouraging).  I tried to get it on video, but of course, like all kids, she would not perform for me.

That little gift was so special and gave me more of a connection with my sweet little girl.  She does respond to our voices and laughs at her sister, but this is one of the first times she responded to directions and it made my day.  I can't wait to tell her therapist today!

Thank you God for the little things that seem so big.  Thank you for reminding us that you care about the small things in life and you know what we need, even if it is seeing our child clap their hands or give us a slobbery kiss.  You are sovereign and holy and I praise you for all that you do in my life everyday.  Thank you for the gift of Annika to remind me of this.

Monday, October 20, 2014

Amazon Smile, social media, and email alerts

I have to admit, I love shopping on Amazon.  I have always had great service and my products arrive quickly (usually).  It is great when I have gifts to send to Alaska....shipping there is very expensive.  Well, I recently learned about something cool.  AMAZON SMILE.  They donate to a charitable organization of your choice.  It is not very much (.5%) but I figure every little bit helps.  So, guess what, you can set your Amazon account to donate to the 5P society (Annika's disorder).  If it is a site you use, I just thought I would pass this on in case someone else might be interested.  I just Googled Amazon Smile and there I was able to type in my organization (5P society Lakewood, CA).  Now each time I go to Amazon to order - which is often - I make sure it says Amazon Smile in the upper left corner and I can help out a little.  Every little bit helps to get the word about about this syndrome.  Lack of education is one of the biggest problems.

Not that educating people helps our kids, they are who God created them to be, but it may help other kids who need to be diagnosed.  We were very lucky with Annika because we have known since she was about a month old.  Many kids are 2, 3, 4 and even older before they even find out.  There is a lot of misinformation out there about 5p- and many doctors don't even suggest to parents to have their kids tested.  So they are left with a guessing game for years trying to figure out how to help their child meet their potential.  We are lucky that Annika has been receiving services since she was about 5 months old and we are already seeing amazing things from her.  So, you can see why education is so important.  We want 5p- to be as known as down syndrome; that people know what signs to look for and can get help for their kids right away.  Plus, many doctors are giving parents antiquated information and the picture is grim.  I have learned one thing from is great if you have a child with a rare disorder.

It makes you feel a connection that is so important.  Once we received Annika's diagnosis I reached out to parents on this Facebook page and found parents right here in NM with in a couple of hours.  It was amazing how excited this made me feel.  All of a sudden I wasn't alone.  (I know I had and have tons of people who support and love us).  But I had a connection to people who were going through the same things as me.  I have had the opportunity to reach out to other parents when I have questions, I celebrate successes with them, and I have made friends as close as ABQ that I am able to call when I have questions and need support.  I never thought I would say social media is awesome, but it is so amazing.  I received more information from Facebook than I ever did from a doctor.  Parents know more than the doctors do.  The information in the books and web site are useless and discouraging.  There is information telling parents that there kids will never walk, talk or be able to learn.  What horrible words to hear about your child that you love no matter what.  Well guess what, through Facebook I have seen kids who can talk, walk, run races, ride bikes, read flash cards, go to prom, and smile and laugh in a way that melts your heart.  So, one point for social media.

Ok, one more thing.  I figured out how to put a choice on my blog where you can sign up for email alerts.  I used to send an email when I made updates but I don't want to bother people who are not interested (which is totally fine).  So, if you would like to follow our crazy life and maybe pass some of this info on to someone else who it might help, please sign up for email alerts.  I think it works.  I tried to sign myself up so we will see what happens.

Thursday, October 16, 2014

Joy through the Cri

My original purpose for this blog was to write about my 1st child and the loss of my dad, and although I still have thoughts to share about that, it has taken on a new purpose for my life.  Joy through the Cri is how I see my life at this time and for the future.  We have had a lot of tears in the past year (well the past 5 years) and through each of those experiences I know I am stronger and closer to the person God has created me to be.  He has purpose for each of those troubles we have all gone through.  

The first time I heard the words Cri du chat I felt a piece of my heart break.  It was all I could do to hold myself together in the doctor's office as he told me.  But as I got to my car I let my heart break wide open, right there in the front seat, knowing that God would pick up the pieces and put it back together.  "Call on me in the day of trouble; I will deliver you and you shall glorify me" Psalms 50:15.  So I cried out to the Lord to comfort my heart and help me to see HIS purpose in all of this.  I felt sorry for myself that I would never see her walk down the aisle, that I would never see her have kids and many other worldly dreams.  As I started to drive home (after I called Bruce and regained some composure) I was stopped at a stop sign and these are the words I heard coming from my radio - 
Staring at a stop sign
Watching people drive by
T-Mac on the radio
Got so much on your mind
Nothing's really going right
Looking for a ray of hope
Whatever it is you may be going through
I know He's not gonna let it get the best of you
You're and overcomer
Stay in the fight 'til the final round
Your're not going under
'Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds you
That you're an overcomer

I was reminded right then and there that God had created Annika, and all of us, for a higher purpose.  Not that I didn't feel sad or even cheated by the things my daughter would miss out on in this world, but I realized that the things of this world are temporary and our reward is in heaven and that is more important than anything this world has to offer.

Sounds like I totally have it together at this point.  So not true!  There are some days my heart breaks wide open again and I have trouble catching my breath.  So I cry out to the one who is greater than me and is greater than any genetic disorder (as the world says) and I hold to the truths that He has planted in my heart.  "Hear my cry, O God; Listen to my prayer.  From the ends of the earth I call to you, I call as my heart grows faint; lead me back to the rock that is higher than I , for you have been my refuge, a strong tower against the foe......" Psalms 61:1-5

So, this is my Joy through the Cri.  Please join me if you would like to take this journey with us.  I know God will bless you in ways you haven't even imagined because that is what he has created us for.  I know my sweet Annika has a very special place in this world and at this time in history.  So, grab a Kleenex, wipe the tears from your eyes and see the joy and hopefulness and love surrounding you and your life and the fact that you get to have Annika as part of your life; because that is exactly how we feel. 

Wednesday, October 15, 2014

The difference a year can make

October 12, 2014
A year ago today I was still very pregnant; we were all so excited for sweet Annika Grace to arrive (now that we had finally decided on a name).  When I pictured my sweet girls playing together it just warmed my heart. I could see their two little blonde heads running down the street and having endless conversations together.  I dreamed of my sweet baby’s life to come.  What would she be?  What would her first words be?  I thought about how it would look when she smiled and laughed at me and how I knew it would melt my heart.  I pictured her and Madelynn being as close as me and my sisters; all the laughs and cries they would share together. 
At this time last year I still held those dreams close to my heart and had no reason to think otherwise.  Why wouldn't this little one be just like my Madelynn.  Yes, I knew they would do things differently and have different ideas and personalities, but for the most part, I could see their lives, parallel to each other, as they would grow into amazing women. 
At this time last year, this is what I was still dreaming about.  As I pictured her turning one I could see her crawling or even walking like her big sister.  I dreamt of hearing those words, “Mamma”.  My heart was full, and I had no reason to think different.
The day came a little earlier than I had planned, but I was not worried, I was getting the drugs this timeJ!  Once things got moving it didn't take long at all, and just before midnight on October 19th there was my little girl.  All those dreams because a reality right there in that room.  I held that tiny baby in my arms and could see all that I hoped for her flash before my eye, because I had no reason to think otherwise.
Days and weeks went on, and things were not quite the same.  I still loved my sweet girl so much, but the endless crying made it very difficult to be happy.  When she was a month old I took her to the doctor.  I figured he would give me some magic drug to make her happy and the crying to stop and life could pick up pace again.  As I stood holding my very tiny one month old all those dreams I had in my head and in my heart came crashing down as I heard the doctor say, “I think she has a genetic disorder called Cri du chat.”  As he showed me pictures and read me the symptoms I felt the room getting smaller and my throat constricting tighter.  What?  This is not what I dreamed.  My daughter is not going to be different, she is just fine, she is just small.  She is going to be big and strong just like her sister; just like her cousins.  What?  She may never walk or talk?  I may never see her run and play soccer or say those words I have dreamed of hearing?  This can’t be.  No, she just has colic and then everything is going to be fine…..
And then I left his office and life went on.  We were in the trenches of colic, a baby that didn’t eat well and wouldn’t gain weight, and spit up.  Genetic disorder???  We didn’t have time for that.  We were just trying to survive the day.  And time kept going on.  We met with a geneticist who agreed with her doctor, but our questions where still about daily life.  Help her to be happy and keep food in her tummy.  Help her to grow.  She was meeting milestones and we really didn’t see a difference.  Everything was going to be fine….
Before we knew it we were running around to OT (occupational therapy), speech (for swallow therapy), chiropractor, ENT appointments, dietitians and the list goes on.  We were in the daily scramble of having a child with special needs.  We didn't even have time to really process what all that was.  People would say, “I am praying for you.”  I would smile and say thank you, but I really had no idea why.  Why were they praying for me, for us?  Were they praying to “fix” Annika?  Were they praying that she would “get better?”  I truly didn't understand what they were praying for, because I didn't see anything different about us.  I just saw us in life helping our daughter the best way we knew how.  Maybe they were praying for our sanity; that I could use on a daily basis. 
As her birthday approaches I am taken back to how I felt this time last year.  All those hopes and all those dreams changed and flipped upside down.  All those ideas about how the world measures happiness, gone out the window.  Some days I find myself needing to defend my daughter as people’s eyes question me when I say, “She is almost one.”  I see the looks on their faces as they think, “She is so small, why can’t she sit or stand or crawl?”  “What is wrong with her?”  They don’t say these things but their eyes do.  I smile and say, “God just made her extra special.”  Well, He did and I truly believe that.  I know He made her just the way she is supposed to be.  Often people will say, “God gave her the perfect parents.”  I know he chose us for Annika, but sometimes when people say this I feel like they are saying, “Wow, better you than me.”  And it is true; I wouldn't change her for the world.  I remember my past principal telling me, “I wouldn't wish it upon anyone but I wouldn't change it for the world.”  (He had a son with down syndrome).  It is so true.  But I still feel a little jealous as a baby who is younger than Annika is crawling around and smiling and laughing and making eye contact.  When I think about her going to school and try to imagine what that will even be like.  When I think about the fact that she will FOREVER live with us. 

And then all that anger and frustration and jealously melts away and she curls into a ball in my arms laughing so hard.  I see the happiness in her eyes as her big sister climbs into bed with her and they start the morning laughing together.  When she wraps her tiny arms around my neck and give me a slobbery, open mouth kiss on the cheek, there is really nothing better.  When she reaches a milestone it is so exciting I want to shout it from the roof top.  And, even though I have no idea what the future holds, how long her little life will be, or what challenges we will be faced with, I know one thing for sure; I know where my little girl will be for eternity and I will see her there.  I know God will take care of her and that He has created her for a special purpose.  We have our challenges here every day; they usually consist of trying to get some sleep and trying to keep food in her.  But we will overcome because God has overcome this world.  He has overcome stomach problems, He has overcome the sleepless nights, He has overcome Cri du chat.  He wears the victors crown and I am reminded that all of this is temporary and I will live in eternity with my sweet girls, seeing them laugh and praise Jesus just the way they were created to do.  I never have to worry about Annika; God has taken care of that. 

So, my sweet baby is almost one.  This is not how I pictured our lives a year ago, but here we are and we are so blessed.  

A new journey

It has been quite some time since I have posted.  This blog has begun to take on a new purpose.  I am no longer a coach and my life is very different from that of a coach or a coach's wife.  So this will now be about my journey as a mom of a wonderful, energetic Madelynn Ruth and her sweet, loving and special Annika Grace who has been diagnosed with Cri du chat.  If you would like to read more about this you can go to the 5p- society page.  It is a very rare genetic disorder with a range of symptoms.  So this is the new path God has placed us on and here are some of my thoughts, fears, joys, anxieties, and feelings.  So, welcome and feel free to ask me any questions you may have.