Monday, April 3, 2017

How is Ezra doing?

I get this question often (and don't mind answering it all, love that people are cheering him on and praying for him) but figured I'd share an update on all things Ezra. I have been meaning to for awhile as its the easiest way to get out more details to the masses. And to let those who want to know some more specific prayer requests for him.

Balance/Motor Development:

 Progress:  A little over a month ago Ezra was fitted for AFOs (ankle support orthotics).  This came about after his first appointment with a pediatric physiatrist.  For those that don't know (we had no idea til we went to the appointment) a physiatrist is a physical medicine and rehabilitation specialist.  Basically she will oversee all his therapies and needs to make sure he is getting everything he needs. She felt the orthotics would help him do things like walk along furniture. They should help control the position and motions of his ankles and help with weakness due to some low muscle tone (which is common in usher kiddos). It took awhile to find shoes that worked with them and he has to wear shoes when using them. Now that we have shoes they do seem to be helping him when he is pulling to stand and walking along things.  He is also gaining more control over his balance so sitting and assisted standing are getting better.  He is constantly pulling up to the couch, tables, and our big living room window.

Prayer: We'd love prayer that Ezra will soon be able to full crawl (on his hands and knees) as opposed to his current army crawl on his tummy. It sure gets him where he wants to but crawling would help strengthen both muscles and balance.  His physical therapist thinks he really could crawl but is choosing not to as he is fast at army crawling! But every once in awhile we see him crawl a few movements and then goes back to tummy. And of course that he continues to progress in cruising along furniture and full walking. I know he will in his time and he is already doing so great!

Vision:

Progress:  Recently we took Ezra to the U of M pediatric eye and vision clinic so its actually in the same building where he goes for his CI mappings.  We decided to get a second opinion not really looking for different diagnosis but just someone who is more familiar with Usher Syndrome.  We haven't had a bad experience in Duluth but since its a smaller area there just isn't much experience with Usher since it is such a rare disease.  We were glad we did as the doctor was just a lot more knowledgeable and was able to give us more information both about Usher and Ezra's eyes. Ezra has had glasses for around a year now unrelated to Usher.  I know it seems odd that a 4 month old would need glasses for other reasons.  But how it was explained to me and makes sense is that there are actually many kids who have astigmatisms really young and should have glasses but often its not caught.  Kids with Usher have many eye exams right away so these types of things are caught faster.  The good news is that this has actually gotten better! So we are waiting for his new weaker lenses to come in.  We also found out that he does have a slight loss of peripheral vision which wasn't fun to hear.  But he was probably born with the loss and it shouldn't affect him too much. The other good news is he doesn't have signs of RP (retinitis pigmentosa) yet which is the part of Usher that will cause him to lose night and peripheral vision and very likely all or most of his vision.     

Prayer; Please keep praying for Ezra's eyes and vision.  That he would be able to keep his vision as long as possible and that clinical trials in process would get the funding they need.  He was also put in a database so that if clinical trials come up that he is eligible for we will get a phone call.  Another reason we wanted to seek a specialist and someone more knowledgeable Usher, to be eligible for clinical trials good records of his vision will be needed.  So we want to do all we can to give him opportunities in the future even though we are not planning on a cure for RP.  There are some very promising trials going on however. And that we also would find the best resources for him and us to prepare for the future loss of vision.  We just recently sent in a referral to the Wisconsin Deafblind program and they will come to our house to assess his needs and help prepare Ezra in different ways. I'm excited to meet the two women who will be coming and gain knowledge.  One of them is a mom of a young adult who has Usher and CIs so she will be a great resource for us!

Communication;  In February at Ezra's CI mapping appointment the audiologist said he was almost completely activated and would most likely be at his appt in March.  She said the goal is for Ezra to be consistently hearing sounds at all frequencies at 30 dBHl or softer.  In his hearing booth test that day he was already responding between 30-40 dBHl.  Which is considered mild hearing loss level. Then at his March mapping he just wasn't feeling cooperative for booth testing.  So we couldn't get as consistent responses.  He didn't nap while during the 2 and half hour car ride and just didn't want to sit there for the appointment.  So he still has a little program tweaking but he's basically fully activated, his audiologist just didn't want to change too much since he wasn't being cooperative.  She's pretty careful because she doesn't want us to get home and have him be uncomfortable or not want to wear his CIs. 
     Recently Ezra seems to be babbling more and signing more.  I feel he will sign more when his balance is a little better and he is able to walk.  I've noticed he signs the most when in his highchair because he doesn't have to worry about using his hands to keep himself upright.  He has some sign that he uses more frequently: mom, eat, more, cheese, milk, and baby.  Then he has some signs that its obvious he is trying to say something and we haven't quite figured it out yet.  Babies signing are like babies speaking it doesn't always come out exactly right but its often obvious he is saying something or sign babbling. And some signs that he has only signed a few times like tree, cold, and ball.  He recognizes Many signs however and can follow simple directions through signs like come, where's mom or dad or one of the kids and so on.
            And he is using his voice to communicate more and more too. He babbles constantly with most vowel sounds and continues to add consonant sounds. Ezra seems to be enjoying mimicking people more and more.  His favorite person to mimic seems to be Emmett.  Because let's face it 3 year old boys make fun noises! And he gets big belly laughs out of Emmett when he copies high pitched screaming or the raspberries.😉 He Loves to say Uh-oh and babbles with it but also seems to say it at appropriate times. He says wa wa for water or when he wants his cup.  He has said ba for ball a few times.  And just in the last few days started saying Ella! We thought he said it a few times when he heard someone say Ella then today after Grandma took Ella to school he stood at the baby gate at the top of the stairs looking out the door saying "Ella Ella."  I started recording then he stopped of course but I did get him to saw it again. So for only having a hearing age of between 3-4 months I think he's doing amazing! Still have lots of work ahead for him and us.  As cochlear implants are not a cure or an easy fix.  He has to learn how to listen and its not natural hearing so its work for all of us. He is still learning how to decipher where a sound is coming from, what sounds mean, what sounds he should listen to, and how to make so many sounds. But seeing his progress just affirms that we made the right decision.

Prayer; Just prayers for continued growth in communication and both energy and guidance for us as parents as we make decisions about therapy and how to best help him daily as we learn both ASL and the ways to help him with speech.

So I know this is a lot of info but that is life in a nutshell with Ezra.  Lots of appointments and lots lots of joy and giggles. Here is a video of Ezra saying Ella cause I love it! Said Ella before mama or dada he Loves his big sister! And then some pics to show his silly happy personality along with some of the twins and older two! I had planned on doing a year update on the twins around their birthday and somehow never got to it:).
video


 

Wednesday, October 26, 2016

Answers

Many of you often ask How are the twins doing? How is Ezra doing? Why does he need glasses? What caused his hearing loss?  For those of you who may have missed this, we found out when Ezra was just over a month old he has severe-profound hearing loss in both ears. This past March we had an appointment at the U of M Lions Pediatric Hearing and ENT Clinic in Minneapolis.  He had a few days/appointments of various tests which didn't tell us anything except for confirming that he is deaf.  They took blood to run a DNA panel looking at 99 different combinations of genes.  Bear with me as I am not a medical professional and may not use all the right terminology here.  They were looking at syndromes and gene mutations that are associated with hearing loss.  It can take quite awhile to get the results back and to get insurance approval for the test.  While we waited for the results Ezra saw a pediatric neurologist for some development delays and to see if he had any thoughts since we knew Ezra was having vision issues on top of the hearing loss.  He recommended physical therapy and waiting to see what the genetic test showed. We also began researching cochlear implants to determine if this was a route we wanted to take.

Fast forward five months later and we got a phone call from the genetics doctor from the U of M that answers most of the questions you have been asking along with us. Ezra has a rare genetic disorder called Usher Syndrome specifically Type 1D.  There is a mutation in his CDH23 gene.  Which means he has the most severe type of Ushers.  Only about 400,000 people worldwide are affected by Ushers.  So...what does this mean?  Ushers affects hearing, vision, and balance.  People with type 1 are born with severe to profound hearing loss.  It also causes retinitis pigmentosa (RP).  This is the reason Ezra wears glasses.  RP causes gradual deterioration in the light-sensing cells in the retina.  This results in night blindness first (could happen around ages 5-7) then it narrows the field of vision creating tunnel vision. Typically with Ushers Type 1 vision starts deteriorating more around age 10 into the teen years. Often causing legal blindness and possibly blindness later on.  The vision can vary as to how fast it deteriorates and when it stops.  The third area Ushers 1 affects is balance.  People with Ushers 1 have severe balance issues because of vestibular dysfunction.  As you can imagine this contributes to late sitting and walking.  So we will continue physical therapy and he will most likely have occupational therapy to help with this.  He should get there on his own time frame.  He is an extremely determined little guy and is already tummy crawling all over the place!

Ushers is genetic but very rare.  So this was just as much a shock to us as it was to the twins' birthmom.  There was nothing she could have done to cause this or done to prevent it.  She loves these two babies and is right here with us advocating for them both.

We have also decided that cochlear implants will be a way to help Ezra in the long run with everything he has going on.  Cochlear implants are in a world of controversy but each person, each family is a different situation.  I'm not going to get into the controversy over implants because that's not what this is about.  We have prayed and discussed and researched for months and have peace that this is the best decision for Ezra. We've been learning ASL and will continue but know there is a big chance some day Ezra won't be able to see others signing.  We have been blessed with an amazing deaf mentor who comes to our house and is teaching ASL to all of us and just walking this journey with us.  We want to give Ezra every opportunity available to communicate and thrive.  He will have bilateral cochlear implant surgery December 2nd at the U of M.  Then after everything has healed we will go back December 20 and 21st to have the implants turned on.  One side each day.  We will have appointments at the U of M weekly for awhile after to gradually turn up the volume and fine tuning.

Please pray for Ezra and our family as we continue on this journey.  It was a surprise and shock to us but without a doubt this little guy is an amazing blessing.  There are going to be hard days and challenges but there are also going to be victories and so many blessings.  As we've began to tell people about ushers they commonly ask "How are you doing with all this?"  Honestly it depends on the day! Most days we're just living life with our four kids playing and figuring out what's for dinner.  Some days are more emotional than others.  Some days when Ezra looks up at me and his smile lights up his whole face as he makes eye contact with me I cry.  I think about a day when that might not happen.  But then I see Ezra for who God has made him.  He is a shining light on hard days, his smile makes me melt and his laugh brings more laughter.  His determination and strength already show through at ten months old.  I've heard many therapists and doctors notice his determination already.   So some day if he doesn't make eye contact with me I know we will bond in other ways.  Like when I kiss his cheek and he laughs.

Pray for us as we try to find the right specialists for Ezra. Since Ushers is not common it is hard to find medical professionals who are knowledgeable.  And all the appointments can be overwhelming as we see people for ears, eyes, balance, therapy, and ASL. We are looking at services to help him cope when his vision does get worse so he is prepared as he gets a little older.

I encourage you to learn more about Ushers especially if you are someone who is in our daily lives. Even if not the way to help find a cure and more medical help is awareness.  Here's a great resource:  http://www.usher-syndrome.org/what-is-usher-syndrome/usher-syndrome.html

The future may not be clear but I know God has great plans for this guy and he is already a light in our house. We didn't know anything about Usher Syndrome til recently, but God knew all along and He placed Ezra in our family some may say because Ezra needs us.  I disagree, we will advocate and do everything we possibly can for Ezra but it feels as though We needed him.  Each of our children bring different things to our family and I'm so thankful to daily see the gifts being Ezra's mom brings. My prayer is that Ezra will bring joy and light to others.

Thursday, April 28, 2016

Twins' Birth And Last Four Months

Well the twins will be four months old in just a few days and I've been meaning to write a post about their birth and homecoming for about three and half months! But as you can imagine life as been a little busy at our house. We've had kinda of a crazy four months with lots of surprises along the way which I will also briefly explain in this post.

The boys were born on December 31st, 2015 (6 weeks early) in Pensacola. We got to see them pretty quickly after they were born.  Ezra weighted 4 lbs 9 ounces and Everett weighted 4 lbs 2 ounces. They were admitted to the NICU to be monitored immediately.  Everett was on oxygen and a feeding tube for less than 24 hours and Ezra took a bottle right away and was just monitored.  They both progressed really fast and were discharged in less than a week!
 
During their hospital stay we got to know their brave birthmomma more and loved on her as much as we could.  Once they were discharged we were able to meet some of her family and take pictures of the boys with her.  We already cherish those pictures and know they will be important to the babies someday. We are beyond thankful that we have an open adoption and are able to stay in contact with their birthmom.  It is such a gift to have a relationship with her not only for the boys but for us.

We found on January 12 that both Florida and Wisconsin cleared us to go home.  So we bought tickets for the following day and said an emotional goodbye to their birthmom. But we will visit her again!

Not even a full week after we got home Everett ended up being admitted to the NICU in Duluth because he was having trouble breathing and would actually stop breathing.  He ended up having RSV and was in for three days. It was a scary experience but so thankful for the people God has in our lifes to help with our other kiddos and support us.  He did end up in the PICU in February for the same kinds of issues but was not quite as severe.

In the beginning of February Ezra had a ABR hearing test as a follow up for failing his newborn hearing screening in Florida.  We honestly didn't think much of the appointment as we were told not to worry its very common for preemies to fail and usually everything is normal. So we were shocked when the test showed Ezra has severe-profound hearing loss in both ears. He has already had some tests and has more coming up to see if the hearing loss is connected to anything else.  So far he has had a urine test which everything came back clear for and an ekg which has to be redone cause he wouldn't lay still hehe.  His next appointment will be at the U of  M Lions Pedatric Hearing and ENT Clinic in Minneapolis where he will have an MRI and another ABR and EKG.  Then we will have an appointment with the ENT to discuss the results.  We are also waiting on the genetics testing which takes quite a while to process. I wanted to write about this because many have already seen Ezra with hearing aids and have questions.  They are basically trial hearing aids as there's a big chance they won't work.  Another thing the ENT wanted checked was his eyes since its common to have eye issues with hearing loss.  Today he got his first pair of glasses. It might a be temporary thing or could be permanent. But we are already seeing a difference in how he responds and plays with us just in the last few hours! Lots more smiles as he can see us more clearly!

So...what does this mean? What's our plan? We do not fully know yet. We will find out more after his next round of testing and then we will have lots of decisions to make and just like any child will continue to make decisions we feel are best for him after lots of prayer.  We are Super excited that we just got signed up for a program called Deaf Mentors and will be learning American Sign Language! We have been using some basic signs with both babies like milk, mom, and dad.  At just four months Ezra knows what it means when we sign milk.  He instantly wants his bottle! Anyways...we ask for prayer for discernment as we make decisions and start a new journey for our family.  We may not have known about Ezra's hearing loss til the test but God knew and He placed Ezra and Everett in our family. We are So thankful for the joy they are both bringing and for the gift of life their birthmom chose for them.


Sunday, December 13, 2015

Twins Update

It is truly now that time where Any day we could get a phone call saying get on a plane Now!  We are always being asked what do you need? are you ready?

Well right now our biggest need is prayer specifically for our expectant mom and the babies.  She is 32 weeks today and was admitted to the hospital Friday as a precaution because she is showing signs of preeclampsia. She will most likely stay until the babies are born.  Please pray for her as she has a long hospital stay which is hard anyways and it is over the holidays.  Pray that bed rest will relieve her symptoms and the babies will wait to arrive for a while longer.  32 weeks is a big milestone for twin pregnancies but we are praying that God would keep them in the womb for 3 more weeks and they would be big and strong enough to avoid a long nicu stay in Florida.  We are so excited to meet them but know it is better for them to keep developing before birth.  Also we ask for prayers for our family as we prepare for traveling and growing by two! Pray that arrangements that need to wait til we know they will be born will fall into place and especially for Ella and Emmett as this is going to be a huge change.  Pray that whenever the babies are born they feel secure no matter who they are with as that all depends on when things happen.  We are hoping they will come with us along with Dave's mom but it just depends on how early the boys arrive.

This is what our house looks like today as we pack what we can now in an attempt to prepare for an unexpected call! The babies' things for the most part are packed and we are working on the rest of us.


Pack n Play for the babies in our room is ready to go! 


It is so exciting to see two car seats and their pack n play! We are anxious to meet them and still in awe of God's plan for our family! I can't help but remember back to the days when we wondered if the day would ever come where there would be children in our house and soon there will be Four amazing blessings.  God's plan and timing has been so much better than ours!

We did meet our matching grant amount which is a huge blessing! However we still have some money to raise to meet our fundraising goal! Our fundraising site will be turned off soon so that finances can be handled. Here is our tax deductible link if you would like to contribute financially:



Thank you so much for all the love and support you have given us and our babies in So many ways already!

Love,
Dave & Amy
Ella & Emmett and
The Lemaster Baby Boys



Wednesday, November 11, 2015

Matching Grant to help bring our Two blessings home

We only have $895 left to raise to fulfill the entire $4000 matching grant! It has been such a humbling experience to see donations come in, many from people we have never meet. We feel so blessed and supported!  Please pray with us that the final $895 would come in too! If you feel lead to give please remember No amount is too small, it truly is taking a village to bring home these two babies!

Here is the donation link for the grant www.purecharity.com/lemasteradoption

Thank you for all your prayers, encouraging words, and financial support! It all means so much to our family! Our family is loved including these two precious babies!


Friday, October 2, 2015

Some of the Details....

I have been meaning to write this for some time to help answer some of the questions we are often asked about the twins. Life has been a little crazy at our house recently with two sick toddlers but now that they both seem to be on the mend I find myself with a quiet few moments. First here is a little sneak pic of the babies! They are pictures of the ultrasound pictures so not the greatest quality but I was so excited to recieve them in a text from our Expectant Momma!



  • Are the babies identical twins?
    • No, they are fraternal twins
  • What is the due date?
    • Due date is February 7th, 2016. We do expect them to be born in January as most twins are born between 34-37 weeks.
  • Where will they be born?
    • Pensacola, FL-this is the same law office we worked with for Ella's adoption in Tallahassee, FL but Twins' Expectant Momma is located in Pensacola.
  • Do we get to name the babies?
    • Yes we do! When we named Ella we did honor her birthmom in her name and wanted her to have that connection in her name with birthmom.  So Ella's middle name Shay is after her birthmom's middle name.  We really love this and hope to do something like this for the boys.
  • What will their names be?  Will they be E names?
    • You will all have to be surprised on this one! We like to wait to tell names til baby(s) are born.
    • Another surprise to wait for! We honestly did not plan to name our first two both starting with Es just happened to be the names we decided on. So you will have to wait and see!
  • Is it double the cost for a twin adoption?
    • No there is additional costs however.  Most legal documents and formalities have to be filed twice since they are two separate people.  So there are some costs that go up. It is not close to double just higher than we anticipated. 
  • Are we worried she will change her mind?
    • Honestly, no.  There is So much more to this question though.  We'd be lying if we said there is no risk, there is always risk in adoption, in pregnancy, in life.  We'd also be lying if we said the thought of her changing her mind never crosses our mind.  But its not something that we are truly worried about or think about often.  We do know that once the babies are born there is a 48 hour period of waiting for birthmom to sign papers terminating her rights and this time was the most emotional time we have ever experienced when Ella was born.  It will probably be that way again after these sweet boys are born. 
    • We are not in this adoption journey purely to grow our family.  It is also about an expectant mom who we feel we need to love unguarded right now.  Because if we put up a guard for ourselves, can we truly show her and these babies the love of Jesus?  It is also about babies needing families. The boys' sweet momma loves them so much she feels she needs to sacrifice her wants to provide a life for them she can not give at this time.  She is choosing life for them and we are here to love all three of them. 
    • We of course would have great heartache if in the end she chose to parent these babies.  We love them as ours right now and we love her so much too.  We want whats best for all three of them whatever that is.  We have faith that God sees the big picture and we are giving these risks to Him.  We feel God has placed these babies and their momma in our lives right now for more reasons than we know. 
    • We have faith in not only our Heavenly Father's plan for us but also in the adoption professionals we work with.  Both our adoption consultant and the adoption attorney have the best interest of our family and the expectant mom in the forefront of their minds and actions. We are so well cared for by both.  The law office does all they can to ensure expectant moms are confident in their decision before involving an adoptive family and honestly rarely sees failed matches.  Even more importantly, they take amazing care of these brave mommas! Which is one of the main reasons we chose to work with them.  
  • What is their race?
    • People often try to ask this or want to know but don't know how to ask this.  The twins are full African American beautiful baby boys!
  • Why is their mom placing them for adoption?
    • This is a question we have a simple answer for.  We believe it is the twins' story and we don't want to share with others until we have shared it with them.  As they grow we will share parts of their story age appropriately and then it will be their choice who They tell and When they tell.  So we aren't trying to keep things from you but trying to protect their story and respect that it is just that Their story. Adoption is talked about all the time in our household and that will continue.  Ella's birthmom is someone who is loved and cherished in our household and the same goes for this sweet momma.
  • How can we pray?
    • Pray for this sweet expectant mom's heart and health
    • That the babies would wait to arrive til they are strong and healthy and can avoid a long nicu stay in Florida.
    • Favor in finances for the adoption
    • Our family especially our two littles as they will have a big adjustment as we become a family of 6!!!
    • All the details and decisions of traveling as the time comes closer!
  • Thank you all for the many ways you have supported us already through this journey! Thank you for loving on us and these baby boys!

    Monday, September 21, 2015

    T-shirt Fundraiser

    Please help bring our twins home!!  We’re doing a t-shirt fundraiser.  Short-sleeve $15 and long-sleeve $20 available in royal blue, forest green, navy, black, & red (see images below).  Sizes available are youth XS (2-4), youth small (6-8), youth medium, youth large, youth X-large, and adult small through X-large.  Add $2 for 2XL and $1 for each additional X.

    Shipping:  Add $5 per order to have shirt(s) mailed to you.  We will deliver local to save you the cost!

    We can accept cash/check in person or through mail.  PayPal is also available.  To pay via PayPal go to www.paypal.com and click on the "Send" button at the top in the middle of the page.  It will ask for an email or phone number to send money too.  Enter dave.e.lemaster@gmail.com and the amount and click continue.  On the next screen click the button that asks if your are sending money to "Friends or family".  From there just follow the rest of the instructions and you're good!

    Facebook message Dave or Amy with your color choice, sleeve length, size(s) and payment choice or email dave.e.lemaster@gmail.com.  We will confirm your order with a response message.  The last date to order shirts is Sunday, October 11th.  If you want to just donate, you can to our MICAH Fund matching grant here:  https://www.purecharity.com/lemasteradoption.  All donations up to $4,000 are matched!  Thank you for your support!