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