Sunday, November 24, 2013

Going a different route


I've been wanting to update y'all on recent events but my goodness it's hard to find the time to sit down and type out a blog entry.  As you know I started my IVF medication back on October 26th.  The plan was for me to be on the stimulation medication for 10 to 12 days then do the egg retrieval.  Well, things did not work out as planned.  We knew going into this cycle that I am a carrier of Fragile X and that I have a very low ovarian reserve.  For those of you not familiar that means that I do not have many eggs left.  Trying to make a long story short the 10th day of medication my body was just not responding really at all. My doctor decided to cancel the cycle.  I knew that I had a low ovarian reserve but I was still taken back by just how bad it really is. It woke me up to the fact that I really might not have any more babies our my own.  It was heartbreaking.  After following up with my doctor we decided to try again with a different medication and a competely different approach.  When I left the clinic I was comfortable with that choice.  But, as I kept thinking about it and talking to God and John we think that the best option for us is to use an egg donor.  A whaaaat? Yes, an egg donor.  Ummm…Lindsay…what's an egg donor? Well, an egg donor is exactly that.  We use another girls eggs to make a baby.  So, we have gone through the egg donor selection process (build a baby if you will :)) and found a local girl we want to use.  We got to look at multiple profiles and see information on their health, education, pictures of them growing up, hair color, eye color, race all of that.  We made our selection and now we are currently waiting for the girl to contact the clinic to confirm her availablility.  

At first we thought the egg donor option was kinda strange and..who are we kidding it kinda is but we know that we will most likely get a lot of eggs.  The baby will be half her and half John but the baby grows in my belly. I get a little sad that I will never have a little "Lindsay" per se or that the baby won't have the dominating trait of the "Derringer" chin but whether we have a little girl or another precious boy that baby will be ours.  The baby will grow inside me, knit together in my womb and we will love and raise that baby.  Another great thing about using a donor is that we will completely wipe out the Fragile X gene from our family. So, we wait.  We wait on the donor and then begin the couple month egg donor process. I will do my best to keep you updated. 

It's just another day in the life of the Brandon's journey to baby #2. 

Love y'all! 

Interested in becoming an egg donor and helping a family's dream come true of having a baby?  Read about it here

Friday, October 25, 2013

IVF Journey

Things are really going to start picking up for us and our very first (hopefully only) IVF round.  For those of you not familiar IVF stands for Invitro Fertilization. For those of you who do not know, me and John decided to try for a baby using IVF due to the fact that I am a carrier of the Fragile X gene. Read and learn about Fragile X here.With that comes a 50 percent chance that I could pass that gene on to another baby.  That percentage is just way to high for us. 

Lets see...we started this whole process back in May.  We met the doctor and nurses who I really love.  They are all so sweet and are always there to answer any questions I may have. Since we have chosen to do genetic testing we had to submit DNA samples to the lab doing my workup.  The labs job was to find where in my DNA the Fragile X gene is located.  That whole process took 16 weeks.  Now that that part is complete they will use that information to locate the Fragile X gene in the collected embryos. It's all very scientific but it's really up to God. There has been a ton of waiting involved in this process.  After having lots of blood drawn, tests, and two ultrasounds later, we are finally ready to move forward.  

Today I received my Fed Ex delivery of my fertility medications. For all the money that this medicine cost I expected a ginormous box. Not so much.  Here is the box I received this morning. 


There is medicine inside to cooler


So anyway, starting tomorrow (Saturday) morning I start my shots.  One shot in the morning and the second 12 hours later.  Then three days after that I start a second shot which is also twice a day. Here's the kicker...with the second med sometimes the syringe doesn't have all the medicine in it so I have to refill so that means some days I'll be giving myself 5 shots a day.  :-)  But really, even though I'm a bit nervous and am not looking forward to giving myself shots everyday it will all be worth it to end up with another precious little baby.  That is the goal here...to have a baby. 

I will be keeping y'all updated but really I'm asking for prayer.  Prayers that we get pregnant the first time around.  That all goes as smoothly as possible. Did we ever think that we would have to go through all of this to have a baby..? No, but we do and we're confident that God has a plan and will bless us with another bundle of joy. 

 


Sunday, August 18, 2013

Catch up...

Okay, seriously, it's been almost three months since I've done a blog post.  So much has happened since May 25th.  Where do I even begin? Ah yes...little Liam. As always he is a very busy boy which means I am a very busy momma.

Back in June I had signed Liam up for a Sertraline (Zoloft) trial. Supposedly it can help with behavior issues, OCD issues and language development in little ones with Fragile X.  The study takes place in Sacramento, CA starting in February 2014. Desperate for some changes in Liam, I thought I would ask his Pediatrician here in New Braunfels if she could go ahead and write the prescription for us.  I did not want to wait until February to start the medicine and then not knowing if we were in the real drug or the placebo.  The study is six months long.  Long story short...I did not want to wait another year before we find something that works for Liam.  Thankfully, his pediatrician wrote the prescription for us.  Liam has now been on Zoloft for almost four weeks. Is it a coincidence that Liam has started to make sounds on command...?  I don't know...maybe it's all the hard work we put in and he's now picking up on it?

It can take up to eight weeks for Zoloft to take full affect.  In the next month hopefully we see even more changes.

Last week Liam went to Neurologist to see what options we have to slow his brain down just a bit (ADHD).  He is a little on the hyper side and has very little focus.  We want Liam to get everything he can out of his therapy sessions and in order to do that he needs to be able to focus a bit more. We decided to give Zoloft the eight weeks and reevaluate in two months.  In the meantime, the doctor gave us some prescription options that I am researching.  Who knew all the medication out there! It can be very overwhelming.

Liam is starting school two times a week this fall.  Only for about three hours a day but it'll be good for him and me.  He'll get the structure he needs in a school setting. Liam seems to do very well with change so I'm not too concerned with him going to a new school. He's pretty laid back. Besides school twice a week he'll still be getting behavioral therapy, speech therapy and therapeutic horseback riding. He'll also be receiving speech, physical therapy and occupational therapy while at school. Whatever it takes right?!  I just know the more we do now the better he'll be when he's older.

Oh...and Liam is officially in a big boy bed.  He really loves his new bed! The transition has been fairly smooth. Sometimes I walk into his room with all his dresser drawers empty and books everywhere but hey..what can ya do?!

Goodbye crib

hello bed

As for me, I'm hanging in there.  The past couple months have been pretty rough for me when it comes to dealing with Liam.  A lot of emotions.  I have quite a few good days and some not so good days. I know that it is a process.  The process of grieving my baby boy.  I know it will get easier as time goes on.  Just trying to stay positive. I know that Liam will surprise us all with what he's going to do and what he'll become.  Even will all the Fragile X stuff, I'm grateful that Liam is a healthy, happy kiddo. I'm thankful for john who works so hard to make sure me and Liam always have everything we need and more. 


Saturday, May 25, 2013

Holland Cont.


I found this poem on another girls blog but I do not know who originally posted it. Of course it's touching as I deal everyday with the roller coaster of emotions of Liam and Fragile X and how it's changed our lives forever. I wonder if I will ever just feel okay with everything?  Some days are good and some not so much.  As me and John are in praying and waiting to see if we will blessed with another baby...I too wonder what it will be like for Liam to have a sibling. I think Liam will be a great big brother and it will be good for him to have a brother or a sister. To have a typically developing child....will it make me ache even more for Liam to be "typical"? To see what comes so easily for most kids that Liam has to work so incredibly hard at? Our sweet little Liam. I love you. 
Of course...
There are the days that I wouldn’t trade Holland for the world
The days that I stand in awe of the windmills’ quaint majesty
And marvel at the overwhelming beauty of the tulip fields
There are the days that I scoff at Italy
The days that I feel downright sorry for those who have never been to Holland
Never wondered at the beauty created by Rembrandt’s brush
What they are missing here, I tell myself
Poor souls!
How much richer they’d be for a visit someday
For a walk in these wooden shoes
**
And then there are the days that I look more closely at the Dutch landscape
The days that I see past the tulip fields to the mothers wringing their hands, waiting – always waiting
The days that I see the doctors – the specialists and therapists – everywhere it seems, filling the streets, doffing their caps as they move from one house to the next – an endless conveyor belt of service and need
There are the days that I see the siblings, struggling with dual citizenship in two dramatically different nations – neither of which they can fully claim as their own
There are the days that I can no longer smell the fragrance of the flowers for the stench of desperation and fear
The days that I send my girls off on the train, backpacks full with supplies for their daily trip to Italy
Knowing that only one of them speaks a word of Italian
Relying on a host of translators and guides to keep my youngest safe on such desperately foreign soil
There are the days that my heart simply breaks because I can’t make the whole world speak Dutch
There are the days that I watch the planes flying in – filled with mothers clutching their children, looking out the window, ready to point to the Spanish Steps and the Colosseum – knowing they’ll find out soon enough, that’s not where they are
There are the days when I wonder if my son even notices the windmills, or the tulips – if he knows there are Rembrandts here
Or if he simply wishes that he were in Rome
**
There are the days that I see my Holland for what it really is
A breathtakingly beautiful place
A place full of love and compassion
Freedom and camaraderie
And a place where children hurt and mothers’ hearts ache with the impotence of not being able to make it better
-Unknown-

Thursday, May 9, 2013

Happy Anniversary Babe

Four years ago today I married the man of my dreams.  Four years have gone by so fast and so much has happened within those four years.  A whole lot of of goods things, some not so good things but one thing is for certain....I'm still very much in love with my hubby. More in love with him today then ever before. John is so supportive and loving.  When I say supportive and loving..I really mean it.  Even through all my silliness and craziness he loves me the same.  I could not ask for more. Oh yeah...he's very handsome and an amazing daddy to Liam.  He loves Liam so much. Since having Liam I have learned to love John in so many new ways. Thank you babe for these four years.  Thank you for all the love, encouragement and security you give me. Heres to many more years filled with fun, laughter and adventure. I love you with all my heart.

I love our wedding pictures. I look at them often. Such a happy day. 







Thursday, April 18, 2013

Rain.

Thank you Lord for the rain this morning. There is a study by Dr. James McDonald called He Will Come to Us Like the Rain.  That thought is amazing.  I need a downpour! Makes me want to go outside and just stand in the rain.  I picture the rain just covering me up! Cover with your love Lord! Your grace and your mercy.

I wanted to take a few minutes and give an update on little Liam.  We had our first meeting at our elementary school yesterday.  Liam will be starting there in the fall.  The state offers a program that enables Liam to get free Occupational Therapy (OT), Physical Therapy and Speech Therapy (ST) while in a school setting.  It is called the PPCD Program which stands for Preschool Programs for Children with Disabilities. We had the opportunity to meet his teacher and see the school. They will be going on field trips and having lots of fun.  Liam will be going three days a week for 3 hours in the morning. Since Liam is turning three in July he ages out of the early intervenion program (ECI). Liam has been in ECI since 14 months old. It has been great and very helpful. Liam is growing up so we are moving on to bigger and better things.

Along with the PPCD Program Liam will still be receiving private OT, ST, and Behavioral Therapy.  So yes, busy busy busy.

I signed Liam up for the Mother's Day Out program at church for the summer.  He'll be going every Wednesday in June.  He LOVES church so it will be good for both him and me.

Even with our hectic schedule we still have plenty of time to play outside and do Liam things.  Liam has his own special way of playing.  He plays with things the way they were not intended.  We find it so funny. It's so Liam.

Tomorrow me and John head to our IVF appointment in Austin. Our last appointment had to be rescheduled.  It worked out better because John is able to come with me this time.  I will update y'all on how that appointment goes.

What's going on in your life?

Sweet Liam playing outside

 


Sunday, March 31, 2013

A little extra Easter present for Liam

I've been wanting to get an easel for Liam for some time now.  All the easels I've found were way over-priced and I was not completely in love with them.  I could not get myself to spend 150 dollars on an easel.  Did you know that Ikea has an easel for $14.99? Well they do!  You can get it here. The shipping was only $10.00. This easel comes in a natural wood color but I wanted something bright and fun for Liam's playroom.  So that's what I did. :-)


Here is what the easel looked like before. 


Tape the easel very well.  Tape all that you do not want spray painted. 


Viola!


I wanted the easel to be magnetic too so I got some magnetic primer.  It is a little pricey (almost 20 bucks) but it works. Once I put a few coats of magnetic primer I painted over it with some chalkboard paint. 


Here it is in Liam's playroom.  Easy, saved money and so fun!

Thursday, March 21, 2013

It's been a while.

Liam has been doing very well lately.  He really is getting stronger and stronger every day.  Since I posted last Liam has started going to a new Speech Therapist and Behavioral Therapist.

The Speech Therapist, Renee uses a completely different approach than any other speech therapist he's had in the past.  During the evaluation I just knew that she understood Liam and what needs to be done to see progress.  The therapy is called talk tools and right now we are focusing on oral placement.  We are starting the process of the straw hierarchy, blowing horns, bubbles and chewing properly. Liam's low tone really effects the way he eats and uses his tongue so we are working on strengthening those muscles.   His therapist gives us plenty of homework. We usually see the speech therapist once a week but she travels all over the world but when we can fit in two times a week we try too. Liam will talk soon...we just know it.

Liam's Behavioral Therapist, Ashley is amazing. She comes to our house every Tuesday and sometimes meets us at the speech therapist.  She is the one who told us about Renee. In actuality I am Liam's number one therapist so while the therapists are teaching Liam, I have to implement what is taught the rest of the days of the week.  Ashley is so wonderful in making sure I understand Liam's behavior. Every parent should have an Ashley. :-)  Aggression and behavior issue are more common in boys with Fragile X so we are very lucky to have Ashley helping us with Liam at an age of 2 1/2.  We are getting a great head start.

Liam still loves going to church.  Everyone loves him there.  He's the "door man".  As in the little boy who loves doors. :-) He even gets a special buddy during class to give him extra attention and help keep an eye on him. Liam will also be starting school this fall.  Oh my goodness! Since Liam turns three in July he can no longer be in the early intervention program so he gets transferred to the school system.  He'll receive speech. occupational and physical therapy though the state at our elementary school.  Liam really is a busy little boy and I'm a busy momma. ;) We are so blessed that we are able to get Liam everything he needs. Blessed that I have a wonderful hubby and Liam has an amazing daddy who works hard and loves us!

One last little update.  Tomorrow is my first appointment to start the process of us having another baby (God willing). We will be starting the process of genetic testing and hopefully IVF. I will be sure to keep you updated on all of the changes that are going on in our lives.

Hope all is well with you all.

God bless.

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11




Sunday, February 3, 2013

52 Reasons Why I Love My Husband

Valentines day is upon us. I saw this craft a while back that I've been wanting to do for John for a while now. I finally just DID it. Since I wasn't sure if me and John would be together for Valentines day I gave him his gifts a little early. I really wanted to share this gift idea and also share with you the 52 reasons why I love John.

 I sat down with a notebook and pen it took less than 5 minutes for me to come up with my list. The reasons just kept on coming. He's a great hubby and I really do love him with all my heart.

Back to the gift idea.

There is still time to do this idea yourself. If you are interested in this crafty gift..from the cards to the a full tutorial on putting the book together..please go here

Below you can see the finished product.  it's the cutest most fun idea.  What a great way to express your love. :-)

52 Reasons why I love my hubby:

1. because he loves his family                                                                   
2. because he's sacrificial 
3. because his giving heart
4. because he loves our son
5. because he works hard
6. because he's a rolemodel
7. because he's a great daddy
8. he gives us security
9. he has a humble spirit
10. he makes me laugh so hard
11. he's laid back
12. he's so intelligent
13. he's well spoken 
14. he's helpful
15. he listens to me
16. he gives great advice
17. always lends a helping hand
18. he dresses nice
19. he's passionate
20. he's patriotic
21. he's brave
22. he's content
23. he excepts me for me
24. he's understanding
25. he's empathetic
26. he knows and loves God
27. he's a loving husband
28. he's courageous
29. he stands up for what is right
30. he realizes when he's wrong
31. I love that he's so organized
32. he's my best friend
33. he's accomplished
34. he's a good cuddler 
35. he loves me un-conditionally
36. I love that he's very honest
37. I love that he's so ticklish
38. I love that he's terrible at keeping surprises
39. he randomly brings me flowers
40. he still holds my hand
41. I love his made up songs and serenades
42. I love him because my family loves him
43. I love him because my friends love him
44. he gives me massages
45. he loves my cooking
46. he's very encouraging 
47. he believes in me
48. he supports me and my goals
49. he's very handsome
50. he loves taking me on dates
51. he changes poopy diapers
52. I love him because he married me







Finished product = LOVE

Happy valentines Day!

Wednesday, January 16, 2013

It's been a week.

This week has been filled with so many different emotions.  I have done a whole lotta reading, a whole lotta phone calls to therapists and getting in contact with local Fragile X support groups. Oh yeah..and some crying.  We have received so much love from family and friends this past week.  I can't say how much it has encouraged and uplifted us.  To know that we have so many people supporting us and praying for us makes all the difference in the world.  I know there will be peaks and valleys but I have such a calm spirit about it. 

I talked to Liam's soon to be Applied Behavior Therapist (ABA) and I am super excited to get started.  She's coming over to the house on Wednesday to do her initial evaluation. I have heard nothing but good things about this therapy.  ABA therapy is usually targeted to kiddos with Autism but Liam will benefit from it as well.  

The ABA Therapist is also putting in a referral for us to a very highly rated speech therapist who uses a unique teaching tools method.  Honestly, I got all sorts of excited about it.  We are willing to do whatever it takes to get Liam what he needs.  Even if we have therapy five days a week..so be it.  

Be strong and take heart, all you who hope in the LORD. Psalm 31:24

An oldy but a goody.  Too cute. 

Saturday, January 12, 2013

Our plane has landed...and here we must stay.


So many many things going through my mind these last couple days.  Life is so crazy and always has a way of shaking you up a bit. I've been going back and forth about lots of things and am still pretty raw and fragile when it comes to this. I guess it's just hard to except some things that happen. All we can do is embrace the change and move forward, even now when so many things are uncertain.  And so a new adventure starts for us. On Thursday we found out that our little precious Liam has Fragile X. For those of you who do not know, Fragile X is the most common form of inherited intellectual disability in boys. Phew, Okay, I got it out.  It's going to take some getting used to saying that.  My son has a disability. My heart aches every time I say it. 

They drew my blood at the genetics office because the doctor is quite certain that I passed the gene to Liam.  Another crushing blow.  The fact that I can pass this gene to future children if we decide to have them...BAM...and another crushing blow! 

Questions, questions..like...when will Liam talk? Will he talk? Will Liam play sports? Will Liam have a family of his own? These are all unknown. 

We are not sure what God has in store for Liam.  Liam will have all the therapy and love he needs to live a very happy childhood. Liam has a mommy and daddy who love him dearly and grandmas and papas and aunties who love him too. We know we will all face challenges but what else is there to do but lean fully on God. He knew our Liam before he was even born. 

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
 Psalm 139: 13-16 

Words of encouragement from one of my favorite chapters in the Bible. 

Now I am focusing on learning everything I can about Fragile X and getting plugged into communities to get that extra support that I know we will need. 

Never in a million years did I ever see this as part of mine and John's and Liam's life.  But, we are a family...a happy family. Life has thrown us a curve ball but gosh we sure do have  a lot to be grateful for.  

Most of all, I'm grateful for the never ending, never changing love of Jesus. 

I'll leave you for now with some pictures of our angel and a song.



















Wednesday, January 9, 2013

When you've done all that you can do...

Well, there was a cancellation at the genetics office so me and Liam will making a trip up to Austin in the morning. We are appointment number one! Thank God because another week and a day of wondering would have surely killed me. Not really.

As terrible and this is, tomorrow...we get answers. Answers we've been wanting for a long time.

When you've done all you can do He'll take it from me. I'm handing over the doubt and the worry. Everything I'll ever need I'll find in Him.
He died a death He didn't deserve to give me life in return.


Saturday, January 5, 2013

Our adventure in Holland.

As a little girl, it is only normal to think of your future as a wife and a mother.  It's something most girls dream about.  The day comes...you meet the man of your dreams...the man who you are certain will be the father of your children. You get married and start talking about starting a family.  Not sure about you but for some reason I always wanted four boys.  Why..? I have no idea.  It's just what I wanted at the time.  

I remember the day me and John found out that we were going to have a baby.  The best day EVER.  It was so exciting.  A little miracle inside me. Our precious baby Liam. He has changed mine and John's life in a way we never thought was possible.  Babies have a tendency to do that. Life as we knew it was changed...for the better.  Our lives have purpose and we could never imagine our lives without him in it. 

As you may know, Liam has been faced with some challenges and we have been on the hunt for the cause.  We recently took Liam to get genetic testing done up in Austin just a few weeks back. They said that the results would take six to eight weeks.  Well, the nurse called me two days ago. What I wanted to hear was that everything is okay..that they  didn't find anything in the test results.  What I did not want to hear was that we need to schedule an appointment for you to come and discuss the results with the doctor.  I honestly did not think that anything would show up in the results...but something did.  So now we wait.  Yes, they scheduled us to see Liam's doctor in TWO WEEKS!! Why in the world would a nurse call and tell any parent that something is wrong with your child but you have to wait two weeks until you know exactly what it is.  It is going to be a LONG two weeks to say the least. Lots of wondering about what it could be. Lots of questioning.worrying.praying. 

A couple months ago I had the honor a sharing in a Bible study with a wonderful group of women (you know who you are).  The book we read and studied was called, The Power of a Positive Mom.  There was one chapter in particular that touched me now more than ever. The chapter talked about the challenges we face in life and that the problems we are facing in life right now will only make us stronger, spiritually.  Not that we are not going to questions God as to why these things happen.  Of course we will, we are only human. The author, Carol Ladd says that "we can use this experience in our lives to polish us and perfect us and allow Him to complete the work he has started in our lives". That is the only choice we have.  To rely on God and trust that his will is good and pure and perfect and that He will never leave us or forsake us. 

There is a section in the book that really sheds light on what it is like to have a child who experiences delays or a disability of some sort.  It touches me deeply every time I read it and helps me to realize that although Liam has some things going on and that things haven't turned out exactly as we planned that everything will be okay...the scenery is just a little different.  Originally posted from Chicken Soup for the Mother's Soul, Emily Kingsley talks about an approach to adversity is such a great way in what she calls, "Welcome To Holland".  

     When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

    After months of eager anticipation, the day finally arrives.  You pack you bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says. Welcome to Holland. 

     Holland??!! You say. What do you mean Holland?? I signed up for Italy. 

     But there's been a change in the flight plan.  They've landed in Holland and there you must stay.  The important thing is that they haven't taken you t a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. 

     So you must go out and but new guidebooks, And you must learn a whole new language. And you will meet a whole new group of people you would never of met. 

     It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while, you look around....and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

     But everyone you know is busy coming and going from Italy..and they are all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, yes, that was where I was suppose to go, that's what I had planned. 

     And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

     But, if you spend the rest of your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very loving things....about Holland. 


So really...I want to invite all of you on our journey through Holland.  Meet us there...pray for us.  Liam is still the same sweet precious Liam.  I will update you all once we meet with Liam's doctor. Love you all. 


    For every hill I've had to climb,
For every stone that bruised my feet,
For all the blood and sweat and grime,
For blinding storms and burning heat,
My hearts sings, but a grateful song-
These were the things that made me strong!

-anonymous