Saturday, May 25, 2013

Bouncy, Bouncy, Bouncy

Logan is definitely doing less head banging these days as he explores more these days.  His bald spot has even filled in.  However, he still loves to jump, jump, jump which is a much better alternative.  He will jump hanging onto the couch, he will climb the couch and hold the back and jump, and now he has a new jumping toy from his Aunt Meredith - A Trampoline!!
He is still getting used to it so he doesn't yet jump with his typical intensity, but I know he is working up to it.  Here is a video of him checking it out.  I also love how verbal he is in this video.  His receptive language is suddenly seeming to take off so we are hopeful that spoken words are not far behind.  He certainly seems chatty here.  We also continue to use body cues with him to support language and to provide him with an additional tool for communication.  
Also, if you are wondering why he is wearing a rash guard here, see previous post. 


Wednesday, May 8, 2013

Little Houdini

Logan has never been a huge fan of clothes and we compromise on bare feet whenever possible as they are one of his primary sources for exploration.  Actually, until he was over a year he only wore socks and/or shoes if absolutely necessary due to the weather.  Bare feet during the day also served a second purpose.  His feet being covered was one of his main cues that it was bedtime.  He was barefoot all day and then always wore footed pajamas at night.  It worked really well for us and he would literally relax when the pajamas were slid over his feet.  
As he got older this effect was less significant and he did start to need shoes more as he was using his feet for standing and now for stepping.  He does still wear footed pajamas at night and I do think this remains somewhat helpful, but he wears socks and shoes more often now.  He has increased tolerance of them than in the past.  Especially close fitting, narrow shoes.  In the very beginning he would scream at shoes until they were off.  When he got temporary orthotics he was more tolerant as I think both standing and the shoes felt better.  He started with some squeaker shoes at first which he also liked.  We also had some great durable soft soled shoes in the beginning.  He still gets really mad at shoes sometimes and will usually take them off in the car or at home right away.  Unless they are needed we let him do so.  
Although we let him often be barefoot we try to avoid having him remove his other clothes.  Even though we know it feels better to him to have them off we try to have him keep them on when they are needed for warmth or whenever it is appropriate to be wearing clothes for other kids his age.  There is another reason too.  Once he gets the clothes off the diaper is next.  This leads to big, dirty issues.  I don't mean to be gross, but we really need help here if any one has ideas.  He originally was safe in onesies, but he can now take them down from the top, or just brings his arms and legs inside as shown below.  He also gets out of or inside one piece outfits, pants, and pajamas.


He is also at the top sizes for onsies and other one piece outfits anyhow so he won't fit in them much longer.  We are so impressed with all the adaptive skills he is showing but do need the diaper digging to stop.  During the day it is not a big deal as he is closely watched and it has been a great opportunity for him to start to learn the meaning of no.  He actually responds really well now when we tell him no and to fix his arms.  Truly this has been some of the first signs of receptive oral language which is amazing.  However at night he is escaping his footed pajamas at times and will quietly create a large mess at times.  Again, really not trying to be gross here, genuinely just seeking advice if any one has any for us.
There is a funny story with all this though.  We have also been working on having him keep his pants on when appropriate.  My father was watching him one day and Logan was particularly obsessed with pulling them down that day and every time he did my dad would pull them back up.  So Logan tried to get a little sneaky and put his back to the couch, faced outward and tried to sneak his pants down from behind his back.  Without any sight we are not sure how he knew this would be more sneaky, perhaps that he felt his body on one side and the couch on the other making it feel secure, but we were very impressed with his sly attempt.  

Monday, April 29, 2013

Hooray for Services!

Logan has his new IFSP completed and recently started services in our new state.  He has had so much growth in the past couple of months, even without services underway, that we are really excited to see how he will do with them started.  He has qualified for weekly PT, OT, Speech, and Vision services.  (They still call it vision services even when a child is totally blind.)  We are especially excited for his speech teacher as she specializes in children who are deaf and blind.  Although Logan can hear, we are not sure he processes speech normally, so we are excited to learn additional ways we can communicate together from her.
He also recently received his first white cane.  It is so tiny!  We are happy to see he likes to hold and explore it.  I think it will be key in giving him the confidence to walk more independently   He is taking steps now as long as he knows you are there in front of him or when still hanging onto something.  The cane should hopefully allow him to venture out further.  With no vision or light perception it is still scary for him to be alone in a any wide open space, even sitting sometimes.  Thank you Jessica from Thomas Marshall Does it All for sharing on your blog about the free cane program through the National Federation for the Blind.  If you are interested in learning about the program you can go to https://nfb.org/free-cane-program .  If you are interested in learning about another cool kid who also happens to be blind check out Jessica's blog here http://thomasmarshalldoesitall.blogspot.com/ .  I have learned so much from reading about Tommy!

Here are some pictures of Logan exploring with his new cane.







Here are some other recent pictures of Logan and Reyna.













Secret to a happy picture together?  Couch bouncing!!










Friday, April 5, 2013

Watch Out World

Here comes Logan!



"We walk by faith, not by sight"
2 Corinthians 5:7


Sunday, February 24, 2013

Communication

After verbal language continued to not seem to be effective with Logan, both as a receptive and expressive language for him, we began to incorporate sign language into our communication with him, especially in the past six months (although a couple of signs we have been doing longer).  Due to his blindness we will sign on his body what we are saying to him and if we feel pretty confident there is something he would like to say to us then we gently guide him to sign the words using a technique called hand under hand.  We are not yet signing phrases as he seems to do best with one word at a time and having the signs done slowly. This seems to be more effective with him as he already seems to understand many words he did not seem to understand when spoken.  Around Christmas time there were three times when he seemed to sign the word "more" independently.  The first time I was able to get a video which can be found below.  In the video I was blowing on him.  This is often a game he loves and it appears that he does clearly sign more and even possibly verbalizes a version of it as well.  A few days later he seemed to say more again when eating.  Finally he seemed to sign more once when a family friend was rubbing his back and stopped.  Since then though nothing...  We are starting to second guess what we saw.  It looks to be pretty clear in the video and then seemed clear again the other two times but now nothing for over a month.  Thankfully he does still seem to understand all the signs he has learned that we say to him.  
One other note on communication.  Seth and I both feel there have been a few times where he does seem to understand a word here or there spoken.  For example, there have been just a couple of times I think he responded to his name, Seth noticed he reacted to the word "drops" for his ear drops by crying before he signed the word to Logan (usually Logan doesn't cry until the sign).  However, his understanding of spoken words seems completely sporadic and there can be weeks or even months between these moments.  Through Logan's school we have heard of types of vision where it is almost like the children see through Swiss cheese and every now and then get a glimpse of something.  Is there a similar auditory situation?  I haven't found anything in the research I can find and his speech therapist had not heard of one, but I thought I'd throw it out there in case anyone reading this has heard of something along those lines.
  Whether it be by sign or spoken language we are hopeful and will continue to do all we can to help support language development for him.  As he gets older he seems to be getting more and more frustrated by his current inability to ask for what he needs or wants.  We are grateful to see the progress he is making with sign language and are quite encouraged by what we see towards the beginning of this video.

  

Saturday, February 23, 2013

Still so much in love...

After Logan was born we were really hoping to get a nice picture of him with Reyna.  Here is the results of my epic fail...



This picture was taken early on when Reyna was still very sensitive to Logan's screams.  Although Logan still goes through phases where he cries every waking moment frequently he does cry less overall.  However, in honor of his current phase of crying, below is a picture where I again attempted in vain to get of them together for our Christmas card.  Still such sibling love!



Luckily now we do have moments these too...



Thursday, January 17, 2013

Updates



Well it has been quite busy since I last updated! Logan is doing well overall.  He has had one surgery to remove the skin tags around his ears.  There is slight scarring on one side with a deeper scar on the left where one of the tags was the start of a duplicate ear.  This one ran deeper so more cartilage needed to be removed.  The scars are still pretty red now, but as his lip scars did they are expected to fade over time.  He did well with the surgery and was home the same day.  That is always a relief!

Right prior to surgery
Left prior to surgery



Left after surgery
Reyna began preschool and is loving it!  She has been learning a ton and it is really fun to see her vocabulary and knowledge explode.  She is still such a happy go lucky kiddo and gets along well with her classmates and teachers.  She does have some spunky moments that get her in a bit of trouble but overall she is doing wonderful.


First Day of School



Daddy came to read when Reyna was "Student of the Week"





Logan has had some illness, including a couple of very high fevers.  The first was probably the most scary because he was breathing fast and then would stop breathing for short periods just as he did when he was first born.  It turned out to just be a really nasty ear infection and his breathing returned to normal when his fever came down.  
The second fever was due to pneumonia which he came down with just after Christmas.  We were out of town visiting with my side of the family so Logan got to visit a brand new ER.  He likes to compare their services I guess.  Luckily he was not having breathing difficulties and was able to go home after a nasty antibiotic shot and with some home antibiotics to take as well.  He has recovered nicely and now just seems to be battling some strong teething pain.  Otherwise all is well.

Hopefully he liked the ER because it is at the hospital that will soon be his home hospital.  We are in the process of a permanent move there.  My home church has graciously allowed for us to live in the vicarage, the home owned by the church.  Seth and I will be the caretakers of the home while also providing snow clearing and grounds care for the church. In addition, I will resume teaching Sunday School there after Reyna and I finish our school year here.  It will be so wonderful to be surrounded by family and friends who adore Logan  and Reyna and can be a greater part of their lives.  This will also allow Seth to return to college to pursue a new career.  He is very excited to have this opportunity.  We are so grateful for the help of our family and of the church! 
As excited as we are to have my family near, we are still sad that Seth's family will be so far away.  It is our hope however that with the new arrangement we will be better able to afford ways to gather together with them as well.  

This is all what has made it so crazy it has been challenging to have time to write!  Below are some picture highlights from the past few months.  






Logan can pull himself to standing now with
a wall or something to grasp.
Logan back at school.



Logan enjoys his first cake pop at a birthday party.
Reyna liked hers too!
At a festival benefiting Logan's school.

















This is Logan's new favorite way to sleep.
Good thing his blanket has holes!

Having fun with cousin Garrett

"Twas the night before Christmas..."









Happy 2nd Birthday Logan!!!!
This was his first birthday where he could really enjoy true birthday cake.
He loved it!!



Happy New Year!!!