She is my child

   People ask me ALL the time "How do you do it?"  To me that is such a crazy question.  How could I not do it?  This is my child.  She is my pride and joy, my flesh and blood.  She has a smile and laugh that will melt your heart.  She has more strength and determination then any typical developing person (child or adult) that I know.  She amazes me everyday.  She pushes me to new limits and makes me a better person.
   This song is called Your Child by Jennifer Shaw.  It will tell you "how I do it".

 

Decisions, decisions

   Sadie's hearing adventures are just beginning.  Not only has she gotten her hearing aids, but we are now to the point that we need to decide on what direction her education is going to go in.  Which is crazy to me that I need to start thinking about this because she is only 18 months, but at the same time I already feel behind in her education.  With babies that can hear, they start learning language right away.  With babies that can't hear, they start learning language when people start signing with them and teaching them what that sign means.  With us being new to the "deaf" world, we haven't started signing with her, at least not enough or consistently.  I feel guilty and horrible about this.  Language/communication is extremely important.  I tried not to put it on the back burner, but it sort of was.  I was concentrating on figuring out her health issues. that I didn't make it a priority.  But this is going to change, as of now (well technically a couple months ago).
   I met with our hearing impaired representative that works with our Early On program through the state.  She explained why so many hearing tests, why we are trying hearing aids, what services are available for her, what 2 schools we have for the deaf/hard of hearing (HOH) here in Kent County.  She explained MANY things to me.  Sometimes I feel like I am on planet Mars when it comes to this stuff.  All her medical stuff is second nature to me, all her special needs stuff was like a foreign country, but I quickly adjusted to that, all this hearing stuff... completely new planet.  I feel clueless.  It's a totally different world.
   Sadies hearing representative brought in the directors of both the HOH schools.  The first was for the school that concentrates on helping kids to learn to listen, read lips, and speak.  This program is called the Aural/oral approach.  The second program concentrates on helping kids learn to listen, read lips, speak, and they teach sign language.  This program is the total communication approach.  Going into this meeting I was sure we were going to go with the total communication.  However, after listening to both program options, I left that meeting slightly confused.  They both sounded like excellent programs, and they both have there pros and cons.  What do I do?!  This is a huge decision.  I cried and prayed for the next week that I would make the right decision for this little girl.  This will impact the rest of her life.  And I guess when I think about it now, it's not any bigger then any of the other decisions that I have to make when it comes to her life (or my other girls life) I was just seriously confused for about a week and it was stressing me out.  However, I finally made the decision.
   After debating it all, we decided to go with my first choice, the total communication program.  This is why.  I looked at all the children that I know that have PTCD (I met them through a support group on line).  From what I gather all of them have been able to pick up on sign language and seem to be able to communicate well using this method.  Some of them can hear fairly well too, but still have issues with speech, but will sign to communicate.  So I took that all into consideration.  I also thought about the fact that every single person in this world uses sign language everyday.  It might not be American sign language (ASL), but at least they are signing.  I also thought about the fact that it is going to change my families life style.  Not only will Sadie have to learn sign language, but all of us will.  This will make my children bilingual.  I love that thought, especially since it's not a commonly learned language.  One of my other reasons for choosing the total approach is that we are not sure of Sadie's cognitive ability.  Sign language is used by all, at all ages no matter what the cognitive ability is.  It could be as simple as a blink of the eye for yes, or a finger being raised for no.  So she will learn to sign things based on her cognitive ability.
   Those are some of my reasons for going with the total approach.  I have many, many more reasons but I don't have all day to write.  I will say that we are lucky that we live in a county that offers both programs.  I am thankful that I was able to get this headache and stress.  Many families are not able to choose because their counties or school districts do not offer both programs and many families can't just pick up and move.  So Sadie is a very lucky little girl.  And the best part about this decision is that if I choose wrong she can always switch programs without too much difficulty (but hopefully this is the right choice for her and our family).

My dancing queen

   Sometimes I feel like I don't talk about Chloe and Aubrie enough.  They both have contributed so much to this family.  One of these days I will write a post about both of them and their personalities.  This post is all about Chloe's dance recital.  This is her second year dancing.  She takes a combined class of both tap and ballet and then in the middle of the year the teacher decides which one they will do for their end of the year recital.  This year they did tap.  I can't say she was the best dancer up on the stage, but I will say that she was the cutest (I'm not biased or anything :)
   I'm not sure how long her dancing career will last.  If it were up to me, forever.  But since it is not up to me, this might be her last year.  She has told me multiple times the last couple of months that she doesn't want to dance anymore.  Why?  Because she doesn't like getting dressed for practice, and she doesn't like sitting still to get her hair and makeup done for the recital.  Which is typical 5 yr old thinking, but once she is in the moment and dancing she loves it.  Hopefully, we just need a long summer break for her to feel refreshed and ready to dance again.  Who knows!

I love this smile!

She calls this "my sassy tap pose".

(Don't ask me why, it's 5 yr old thinking)

 

I love this picture.

 She was laughing and being so silly!

This is her "I know I'm cute" look.

 

 

Those little ears CAN hear!

   A while back I wrote a post about what we were going to do with Sadie's sweet little ears.  Do we want cochlear implants, hearing aids, or do nothing?  I had no idea what to do.  Well we made the decision to go forward with trying hearing aids.  I honestly didn't have much hope that they would do anything, but we decided it was better to try them and rule them out then to have never tried them.  Sadie got fitted for them a month or so ago and Tuesday we went and picked them up.  I had so many mixed emotions going into that appt.
   Ever since Sadie's first BAER test I was told she was between mild and profoundly deaf.  I was also told once that she had auditory neuropathy (so sometimes she can hear, and sometimes she can't).  No one really knew.  Her tests always told us something different.  After the first few tests I sort of stopped listening to the results.  It was irritating to me that the answers were always different.  So I always went off of how she reacted to life.  I truly believe that she has auditory neuropathy.  There are times when she and I will have "conversations" back and forth, and other times she completely has no response to loud noises or any noises.  Her ENT though, kind of said in a round about kind of way that he thinks her "responses" to me are strictly do to her reaction to the movement in the environment versus her actually hearing me.  So I've always had that in the back of my mind.
   Up until yesterday I really had no hope that the hearing aids would work, but like I said sometimes you just have to play the game that Dr's and therapists want you to play.  I was afraid to get my hopes up that she would respond, just to be let down by no reaction.  But as the time grew closer to the appt I found myself filling up with excitement and I found myself just hoping and praying that there would be at least some sign that she could hear.  I wanted to not hope, but I just couldn't help it. 
   The time came and they placed the first hearing aid into her "bad" ear (the right side).  At first she stopped and looked at me and then she started turning her head side to side as if she were thinking, "what was that"?  Then she started crying and ripping at her ear.  I wanted to cry cause that meant, to me, that she was hearing something and it was "bothering" her.  Then she just stopped and looked at me and then just started looking around, not really responding to anything.  We tried to put in the other aid, but it was broken already.  So the hearing aid lady went about talking to me about how to clean and take care of the aids, and then Sadie got this huge smile on her face and just started to laugh and laugh and laugh.  We (the hearing aid lady and myself) totally believe that she is responding to sounds in her environment.  I was so happy, I left the building and started to cry.  Tears of joy are rare to come by with Sadie when we leave an appt.  Usually they are tears of anger, hurt, fear.  I was seriously shocked (pleasantly shocked and thrilled to be wrong) that there was a response to the aids.
   Over the last few days of observing her I do still believe that she has the auditory neuropathy.  Her hearing is definitely intermittent.  BUT  when she is hearing she is responding faster to the sound and responding a little bit more often.  I don't really know how to explain it, but I can just tell a difference.  Tomorrow, Friday, we will be going to get her other hearing aid and it will be placed in her "good" ear (the left side).  So I am even more excited to see what kind of a response we get from that one or from a combination of both of them.  I'll update again in a few days.  :)

 

   When Sadie went to get fitted for the hearing aids I was allowed to choose a color for them.  Who would have thought that it was such a huge decision?  In the end I chose the zebra strips.  Why?  1. I think they are cute and 2. Because the awareness ribbon for rare diseases is zebra stripes.  And since Sadie is amongst the rarest of the rare, what better way to represent and support rare diseases!?  Love them and her!

**Then the eyes of the blind will be opened And the ears of the deaf will be unstopped. Then the lame will leap like a deer, And the tongue of the mute will shout for joy.  - Isaiah 35: 3-7

Eating

   When Chloe and Aubrie were babies they were nursing pro's.  They latched on to me like it was nothing.  Then came eating baby food.  Chloe ate the jar food, Aubrie would have nothing to do with jar food, so we just would grind up grown up food.  She loved it.  Then came finger foods.  No issues there.  Then came "grown up" food.  We would just let them taste whatever we were eating.  They generally loved it, and to this day are the best eaters ever.  There are very few foods that they won't eat.
   When Sadie was born I was devastated that she wouldn't nurse.  I loved that closeness that I shared with my other two girls.  I know it sounds ridiculous to some people, but it really was something that I had to work on getting over.  I was always grateful that we had the technology to be able to tube feed her, but is was (and still is) a little sad.
   One of my goals that I have set for her to accomplish by age 3 is to eat at least 1 meal a day by mouth.  Over the last year or so my husband and I would attempt to give her food.  Never have we really ever had a good response from her.  She would just look at us like we had 2 heads and if she could talk she would say to us "what are you doing? I don't eat by mouth."  But recently she has been getting into this tasting thing a little bit more.  Sadie will give us smiles after tastes and stick her tongue out, as if to say "give me more".
   So I think the time has come for us to try a little harder with eating food orally and even possibly drinking, whether it is from a bottle or a sippy cup who knows.  But I think we will try a little harder from now on.  Fingers crossed!

 Sadie loves tasting french fries.  She will suck on them until they fall apart from being so soggy and then she will throw a fit when we take it away and dig out the piece that broke off in her mouth.

 

Sadie trying steak (no, it's not as raw as it looks in the video).  She loved it.  Whats not shown in the video was when she actually clamped down on the steak and ripped a piece off .  Again she was mad when we took the piece out of her mouth.

Mission 2 accomplished

   I know you guys are all sick about hearing about my missions.  Honestly, I'm kind of sick about hearing about them too, but this is my life.  I have always been open and honest on this blog, and to my faithful readers I plan on keeping you guys updated.
   After I received the news that the exome test was cancelled and I got over a little of the anger, I started thinking about what my next move was going to be.  I decided to contact the research study (at the University of Washington) that I put Sadie in in regards to her brain malformation.  If you remember correctly they are the ones that diagnosed Sadie with Pontine Tegmental Cap Dysplasia (PTCD).  I asked them if it was possible for her to have both the PCH and the PTCD? Her reply was this "the diagnosis of PTCD does replace the PCH, it is more specific".  So in other words PCH is sort of like an umbrella and PTCD falls underneath that umbrella as one of the sharp little points.  And since there is a lot of unknown about PTCD, the diagnosis can not be proven with a blood test yet, hence that is what the research study is looking for.
  So, I guess that settles that.  I will go with it.  I still wish I had hardcore evidence that she does not have PCH and has the PTCD.  I think without the hardcore evidence I will always wonder in the back of my mind.  But I am driving myself crazy with all of this, and I need to stop obsessing over this.  You are probably wondering why I am obsessing so much, as it is just a title.  This is why I am obsessing...  The 2 diagnoses have similar characteristics, but at the same time, very different (such as a cold/cough versus RSV).  They have different reasons for the gene mutation, they have different outcomes for the children, the possibilities of having affected future siblings are different.  It's just something that I really want to know.  But until I find a really good Dr that is extremely convincing to the insurance company to run certain tests or until they find the actual gene for the PTCD, I am going to drop this subject and just say that she has PTCD.
  Now I just have to have all of her Dr's change her PCH diagnosis to PTCD.  Just one more thing to add to my to do list.

Sometimes we just need a little reminder

For the days we are running on empty. For the days we just don't think we have it in us to read one more story, play one more game of Uno, wash one more round of sheets. For the days when we think everyone else has it together. For the days we're sure anyone else would do this job better.

For those days. You know the ones.

Repeat after me:

1. I shall not judge my house, my kid's summer activities or my crafting skills by Pinterest's standards.

2. I shall not measure what I've accomplished today by the loads of unfolded laundry but by the assurance of deep love I've tickled into my kids.

3. I shall say yes to blanket forts and see past the chaos to the memories we're building.

4. I shall surprise my kids with trips to get ice cream when they're already in their pajamas.

5. I shall not compare myself to other mothers but find my identity in the God who trusted me with these kids in the first place.

6. I shall remember that a messy house at peace is better than an immaculate house tied up in knots.

7. I shall play music loudly and teach my kids the joy of wildly uncoordinated dance.

8. I shall remind myself that perfect is simply a street sign at the intersection of impossible and frustration in Never Never land.

9. I shall embrace the fact that in becoming a mom I traded perfect for a house full of real.

10. I shall promise to love this body that bore these three children out loud, especially in front of my daughter.

11. I shall give my other mother friends the gift of guilt-free friendship.

12. I shall do my best to admit to my people my unfine moments.

13. I shall say sorry when sorry is necessary.

14. I pray God I shall never be too proud, angry or stubborn to ask for my children's forgiveness.

15. I shall make space in my grown-up world for goofball moments with my kids.

16. I shall love their father and make sure they know I love him.

17. I shall model kind words to kids and grown-ups alike.

18. I shall not be intimidated by the inside of my minivan this season of chip bags, goldfish crackers and discarded socks too shall pass.

19. I shall always make time to encourage new moms.

20. I shall not resent that last call for kisses and cups of water but remember instead that when I blink they'll all be in college.

... with love from one tired mother to another.

Editor's note: This was written by Lisa-Jo Baker and originally appeared on her blog, but I LOVE it and needed it and thought you might to.

Missions update

   A couple weeks ago I received some news about both my missions.  I have not written about it because it makes me angry to think about it, plus my computer was broken for a couple of weeks so I really haven't had the opportunity to write.
   So here is the scoop....
  At the beginning of April I received a phone call from the genetics counselor saying that the insurance company approved the exome sequencing test.  This test is the mother of all genetic tests.  It looks at every single one of her genes.  It would be able to tell us if she has PCH and what type.  It would look at multiple mitochondrial disorders to see if we can actually give a name to the mito disease that she has. I was beyond excited!  I worked so hard to get this test approved. I pushed and begged and proved why this test would be useful for my baby to have.
   However, since this test looked at ALL of her genes it could also tell us things about her genetic makeup that we may or may not want to know.  It will also tell us stuff about our family because it not only tests Sadie's blood, but my husbands, myself and the 2 other girls.  So we needed to make an appt to actually go into the office and sign the consent for the test and go over everything.
   The week of the appt I get a phone call from the genetics office saying that the exome sequencing test the was originally approved was "taken back" last minute.  They no longer are willing to pay for the test.  I literally felt like I was hit in the gut with a wrecking ball.  I wanted to scream at the top of my lungs.  I cried... a lot.  How can they do that?  I had so much hope to find out more answers about this innocent, precious little girl.  She deserves to find out answers about herself.  She has the right to find out more so that we can have some sort of a "road map" for a future.  To know what we are looking for so that we can catch things right away and possibly fix it or slow down that particular issue before it possibly gets out of control.  Just because her disorder doesn't have a cure, doesn't mean we don't have a right to know what we are dealing with.
   Of course I asked "why?"  This was the reason I was given.  "They (the insurance company) feels like they have already exhausted all the tests that they feel need to be done and would be helpful in Sadie's case.  They don't feel that finding a clearer diagnosis could lead to a cure or impact Sadie's life at all".  Well guess what?  They are full of crap!  The genetic blood tests that have been run on her are the basic genetic testing.  They check for all the major, well known disorders.  They look at the chromosomes themselves and decide if they look like they are supposed to look.  Yes, all these tests have been normal and have come out just fine.  However, we all know that Sadie is far from the norm.  She needs the tests run that check for the rare disorders, the rare genes.  We have never even checked for disorders that deal specifically with her brain malformations (which is where finding out the type of PCH she has comes in).  We haven't even looked at the multiple mito disorders.  Yes, we finally got a mito muscle biopsy, that says she is making too much mitochondria but it doesn't give us a specific diagnosis.  So how can they say they have exhausted all the tests?
  I'll tell you why they say this, because all the insurance company is worried about is money.  This test is expensive, I get that.  But if we were to order all the tests that we want run individually it would cost at least 5 times more then what this one test costs.  This is the most cost effective test that will give us multiple answers.  But they don't care about finding answers, they don't care about my daughter.  How do they know that it won't tell us that she has a perticular disorder that does have a treatment?  They only care about money.  And that sucks!
   The genetic Dr. is still trying to get it approved.  She said she has one more trick up her sleeve, after that we will have to back off for awhile until we can come up with more reasons to have the test run or maybe the mito Dr that we are seeing in August might have an idea on how to get the test covered. I almost exploded when they told me all this.  I'm pretty sure I had smoke coming out of my ears and my head was literally spinning in a circle like you see on cartoons.
  Guess what? If they think they have heard the end from me, they are severely mistaken.  I will fight for the rest of my life and her life.  All that this denial has done has gotten me mad.  In fact, I have already come up with a plan.  It is is extremely out there, going out on a very thin limb,  and it will be going over a lot of peoples heads and stepping on toes but I gotta do what I gotta do.  As things unfold, I will keep y'all updated.