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. 

 

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. 

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-

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. 

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

 

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!

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