Summertime

The month of June has flown by and so much has happened in Noah's world; first we celebrated 4 months as a forever family.  Then Noah had strep throat and giardia (intestinal parasite-yuck) but he took the meds very well and never complained with either illness.

We've continued to enjoy our neighborhood pool, local spray pad and even ventured to a small water park.  Noah is rejecting the sunglasses a little more but I think its just a phase.

He had no interest in fishing while in Macon but watched his siblings each catch their first fish.  Noah is enjoying 'preschool at home' and can trace his name incredibly well!

He loves to throw a frisbee but is still working on the catch aspect.

He continues to enjoy Legos and Play-Doh.  His new favorite indoor activity is dressing up in costumes-football player and Woody from Toy Story most often.

He has only had one night terror in the past month.  Still no weight gain though his foot has grown a size and half now.  Noah goes back to the IA pediatrician next week for a check up.

Picture from a Friend

How sweet is this picture?!  That is Jian Shan (Noah's best friend in the orphanage) and two of the wonderful nannies that cared for him in China...and they are looking at a picture of Noah!  Technology has allowed us to keep in touch with all of them.  What a blessing it is to sponsor this child and pray for a forever family for him.  He is described as the favorite and a sweet, helpful boy.

Video for a Friend

We've been preparing a new care package for Noah's friend, Jian Shan this week.  I was so happy to find an inexpensive panda bear to add.  Noah has so many great memories of the two of them but never wanted to share the stuffed animal we mailed to him while we waited.  Here's a short video of him earlier today-

He is very proud of our find for his friend.  :)  We sponsor him monthly for $35 thru Bethel China.  If you are interested in sponsoring a child like Jian Shan you can do so at https://www.bethelchina.org/general-donation/

CVI Functional Vision & Eligibility Assessment

Noah was seen at the Center for the Visually Impaired in Atlanta last Thursday for a functional vision and eligibility assessment.  I first discovered the services they offer from another mom that adopted twin boys with albinism from China.  Her sons participated in the BEGIN program and completed their preschool classes last year.  I visited the CVI before we adopted Noah to look into their services.

This time Noah was observed by their Early Interventionist, Cindi Nash.  She was excited to meet him and get a baseline for his acuity.  From the start of meeting I could understand how Noah's low vision will affect him later in life (in a classroom setting) but is currently weak and how we can help him improve -his refined reach is slightly inaccurate and he had trouble hitting the elevator button.  Cindi wrote up a full report on his vision, tactile skills, auditory skills, and overall development.

To say she was impressed by Noah's language and comprehension would be an understatement.  He is so smart!  But he couldn't "trick" her the way he does me.  He had trouble finding the hole in the shoelace activity and needed to bring most objects 2-3" from his eyes.  He could not replace the marker caps without help (can most 3 year old boys do this?).  She also observed how he tilts his head slightly to the left to visually explore an object.  His nystagmus was very slight throughout the assessment.

Cindi recommended that Noah be reevaluated by Dr. Bordenca and we push for glasses.  She suggested more hats to shield his face and to continue the use of sunglasses.  She also suggested we sign him up for "camp" classes (a week in June with other children who have low vision) and then in the Fall participate in the BEGIN 3 year old weekly preschool class.  This is something we are encouraged by and hope for the CVI's supplemental classes to allow Noah to stay "mainstream".  Since I teach part-preschool at a local church we had already planned for him to attend this Fall.  I'm learning there is such a fine line between utilizing the services for a child with a SN (special need) and still allowing them to be like their peers without impairment.  The services provided by the CVI are great and we hope to continue to help Noah with opportunities like these.

1st Trip to the Skin Doctor (Pediatric Dermatologist)

Ella and I took Noah to Emory University Hospital last Wednesday to see Dr. Mary Spraker, a pediatric dermatologist.  It took more than 2 months to get an appointment scheduled with her (she came highly recommended) and we were there more than 5 hours-wow!  What a blessing it was to have Ella there to entertain Noah and reassure him during the examine.  She is such a patient and kind big sister.

Dr. Spraker was great and worth the wait.  She is incredibly knowledgeable and familiar with albinism.  We didn't think there was anything "wrong" with Noah's skin but really just needed to get a baseline check.  She didn't find anything that looked like sun damage or concerning spots (yay since he probably didn't have access to sunscreen until 3 months ago).  From here on out we will now be using a 30 SPF instead of 55 and re-apply every 2 hours not every 30 minutes (I have been a maniac worrying about a burn).  She also recommend investing in some sun protection gear not just rash guards but approved of all the steps we are taking.  Noah will now see her every 6 months for re-checks.

Here are some of the waiting room antics...

Formerly Afraid of Animals

1st Trip to the Eye Doctor (Pediatric Ophthalmologist)

Noah had his first eye examine with Dr. Mark Bordenca from Eye Consultants of Atlanta at CHOA (Cumming location) last Monday.  It was such a big appointment and honestly I had been dreading it-not the outcome but the exams it involved.

I brought in back up (Beckett).  He is such a great brother to Noah and has learned to share and encourage in a way most 3 year olds cannot.  He even let Noah hold his Spiderman car in the waiting area.  Noah was his inquisitive self with Dr. Bordenca asking questions and telling him we would "go get ice cream after, ok?".  He sat in the chair all by himself and was so patient.  He did cry when his eyes were being dilated for about 7 seconds (literally the doctor counted and said this was normal).

In the end I came away knowing even more about Noah's eyes-diagnosed strabismus and nystagmus-and his true acuity.  Dr. Bordenca felt like Noah would be an excellent candidate for a minor surgery (to turn his eye muscles slightly), possibly wear glasses in the future for his far-sightedness but hardest to hear of all-that he is very likely "legally blind".  His vision is something that will be checked again in 2-3 months.

At this point I am left feeling sad for my son.  Those that have met him will probably be surprised to hear he is considered legally blind.  I'm right there with you.  :)  Will he ever drive?  Probably not.  Will he live a full and wonderful life and see much more than most children with albinism?  Absolutely.  The diagnosis means Noah could see at best 20/200 with corrected vision.  It is a visual field that is limited to 20 degrees.  For instance, a "normal person" has vision of 20/20 and can stand 200 feet away from an object and see the finest detail, someone who is legally blind like Noah will have to move up to only 200 feet away to see the same detail.

Noah's next assessment will be one for eligibility at the Center For The Visually Impaired in Atlanta.  They have a wonderful BEGIN program and a staff that is very knowledgable about functional acuity.  I really think Noah sees too well to qualify for their early childhood program but I hate to pass up any opportunities for him.