Vision Update: Andrew & Kathlena

Andrew has been working hard at wearing his patch all waking hours since last July.  He has been a real trooper.  So, much so that he has made it seem so attractive to Kathlena who has wanted to wear a patch just like her big brother Andrew.  Well, she is getting her chance and she couldn't be more proud!  Kathlena's left eye is starting to drift and she has now been diagnosed with strabismus also.  We have suspected this for some time now but, hoped it was only an optical illusion.  It would seem her eye is drifting out and up the exact mirror image that her brother Andrew's eye did.  We had her checked for strabismus about 10 months ago and none was detected so it has come on quickly.  Now, we do not know if surgery will be necessary.  At this point we are patching minimally to see what happens.  Kathlena also has nystagmus in both eyes and when one eye is covered it accelerates the nystagmus (bouncing of the eye uncontrolably) to which she has little muscle control over her eyes.  The idea is that the patch may help strengthen it. 

We were very excited though to get an acuity on her.  She tested 20/400 in her left eye and 20/100 in her right so we are dealing also with some amblyopia with her too.  No glasses at this point will help.  Part of why her vision score is so low is because of the lack of muscle control from the nystagmus.  When she uses both eyes together her vision is 20/60.

Kathlena is usually an energetic 4 yr old and the patch seems to accentuate that!  In the few days she has worn it though her eye does seem to slow down after wearing it for a while and she manages great.  She has not had any trouble running into things or otherwise slowed her down. 

As for Andrew...drum role please....he is holding at 20/30 in his left eye so we are now only going to be patching 5 hours a day.  Whew! that is nothing compared to what he has been doing and he is so excited.  Yeah for Andrew!! He has done such a great job with no complaining.  It has been hard work but, it has paid off.  So, now we begin cutting back time to see if we can still hold the vision.  We go back in March for follow up on both of them.  For Andrew we will also have an ERG test done next time as we have noticed some possible night vision issues.  We are so thankful for Doc Mazow and his staff who takes such good care of us.

Below is Calvin who wanted to be like his big sis and bro...so he tried out the patch too.  One of Dr. Mazow's assistance wanted to check out Calvin too.  They were so sweet and helpful.  Calvin is doing great and so far his vision seems to be developing normally.

Andrew's vision update

Andrew went back today for a check-up with Dr. Mazow. Mommy did not make the appointment as the car ride is just too long and causes the swelling to worsen. So, the boys (Daddy and Andrew) were on their own today. The appointment went well Andrew was at a strong 20/40 (yipee!) and was even able to start seeing partial letters on the 20/30 line. Dr. Mazow was encouraged and has us keep up the patching regiment of 8+ hours a day for another 6wks. Andrew is still not able to see any of the 3D stuff, but hopefully as his vision in the left eye more closely matches his right eye he may have an opportunity to recover his stereo vision. His right eye is holding at a strong 20/25 so we are getting close. Hurray for Andrew....it is hard work doing the patch therapy, but he continues to have a great attitude and never complains about wearing them.

We are so thankful that we continue to see progress. Please continue to pray for Andrew and for us as we seek the best for his vision. We continually ask for the grace to accept whatever the outcome the Lord has for Andrew and to encourage Andrew to trust the Lord as well. Thank you for your prayers and words of encouragement we are so thankful for you.

Hurray for Andrew...vision update

Today we went back to Dr. Mazow for our 6wk follow up. We have been patching again for 5 hrs a day which we increased to more like 7-8hrs a day after about 2wks. From our experience patching Andrew prior to surgery we could tell the 5hr patching was really not long enough so we increased the time as the 7-8hr seems to be what works for Andrew. Even a few weeks ago we began to notice some changes. Andrew would tell us that he could see better (while patched) and he was reading numbers, letters, and signs from the car that told us he had improved some. We never imagined how much though!
We arrived at Dr. Mazow's office and it was very busy. I guess everyone was trying to get in before school starts back. Anyway, it was the usual routine only we had forgotten that we were to have his eyes dilated today. So, that made it a little longer visit. Andrew tested 3 lines better, with a strong 20/60. We were so excited to have so much progress in a short time. This pretty much put us back to where we had started before the surgery. Once dilated though Andrew blew us all away with an unaided 20/30 in his left eye...what we were told would be next to impossible! I was fighting back tears of joy for Andrew! It has all been worth it!! Truly an amazing gift of the Lord to restore Andrew's vision in this way. Tears well up even as I write this that we are witnessing a miracle in little Andrew's life.
Sweet Andrew didn't even really understand why everyone in the office and David and I were so happy. To Andrew it was just another eye test. I had to explain it to him in the car. We grabbed a sandwich at Subway after and as we were going in Andrew had time to process all that had just happened and this is what he told me. "Mommy, I am just so grateful that my eyes are better, I am so grateful" Andrew never ceases to amaze me with his tender heart and genuineness. I told him I too was grateful to the Lord for all that He has blessed us with. For all the eye appointments this past year that ended in tears of frustration and sometimes moments of a loss of hope that led us back to prayer for mercy on our little Andrew we are so very grateful for this precious gift of sight from the Lord that truly is a miracle.
We still have a long road of patching and work to do to improve and keep his vision, but this was a huge day that has given all of us a renewed "vision" and hope to continue in faith trusting the Lord with each step and giving Him abundant praise for all that He is doing in our lives.
We will be back to see Dr. Mazow around the first of October and as long as we are continuing to hold and improve vision we will begin to decrease the patching time over the course of the next year. As Dr. Mazow explained it the patch will eventually be like a retainer where Andrew wears it only a few hours for a few days a week. At this point it would seem that a second surgery on the right eye is off the table for now. We will still need to work on his binocular/3-D vision as he is still not able to see with both eyes together passed his nose. We pray that even this would be restored to him. In addition to our work with patching we are looking into a NeuralDevelopmental Program that may also help improve his vision. I hope to post about this soon. I am still researching and reading about it, but have found a good source that encourages the program be done by parents at home...just what we have been looking for...PTL that He continually opens new doors when others close. I also want to thank all of you for your faithful prayers for our family and comments of encouragement. It means so much to us! We are so blessed by you.

Update on Andrew's Vision Progress: Post Surgery & Children's Museum Trip

Learning about viscosity. The density of different liquid
materials.


Learning about the density of different solid
materials.


The robot arm building the toy trolley.


The boys built their own wooden trolley then
tested it to see how well it was built. They
did a good job of following instructions.


Water works! The kids had a great time exploring
the different types of levies and currents with their
boats on the water.




Emily had to get a few belly pics in...boy was
it hot!


Inside a police car simulator


Playing market...one of their favorite things to do at home
too. This was a really large market though.




Mimi making a rare photo appearance! Mom grabbed the
camera from her for a moment. Trying to do that more often :)



Andrew the artist!




Today we headed back to Dr. Mazow for our 4wk post op appointment. While Andrew's eye is healing up nicely he is still having some double vision in his left eye. According to his vision test he has lost vision in his left eye again. We are now back to 20/90 which is close to the vision he had when we started with Dr. Mazow. While this was disappointing and down right frustrating for all of us, especially Andrew we were not entirely surprised.

Andrew's right eye has been dominate for 6+ years now and given the opportunity to do so it will dominate and keep the left eye weak apparently even with the new alignment. This is the amazing ability our Creator, Almighty God gave our brains to compensate and make the most of what works well in the absence of treatment. So, given the time gone untreated the re-training is hard! This is the major difficulty with untreated amblyopia...it just isn't an easy fix and likely may take us a long time to re-train his brain to accept the second signal. We are praying for healing and persevering. Andrew being a little trooper is complying with going back to patching 5hrs a day...bless his heart! We will be doing this for 6wks then we go back to check our progress. Best case is that we have regained what we lost and we are back up to 20/60. Now how we hold that once we get there is still unclear to us. We are hoping to understand more on this at our next visit

Another issue that we had hoped would not be the case, but knew there was a chance is that Andrew's right eye is also out of alignment. We opted for the Dr. who was more conservative and only wanted to operate on the left eye (many will just do both eyes and not even consider that one may be aligned). After discussing this with Dr. Mazow we were even more convinced that only operating on the left was the right course since Andrew has such perfect vision in his right eye and the risks outweighed the benefits.

So, now we see that possibly Andrew has an alignment issue in the right as well. If so, it is just very slight and given the severity of the left was really not easily detected. It is likely that we will have to do surgery again...possibly soon. The main reason for the additional surgery is that with the eyes out of alignment it will make it more difficult for both his right and left eye to work together in what is called stereo or binocular vision. I might add that the "misalignment" in the right eye is virtually undetectable when looking at him. It is only at a certain angle that I thought there was a slight discrepancy...in fact I wasn't sure that it was not an optical illusion as his left eye is still healing and has stayed recessed some as a result of the surgery. So, I just thought (hoped) that that was all it was. We continue to pray for the Lord's will in all of this as He knows best what Andrew needs.

After our visit with Dr. Mazow we headed for the Children's Museum which Kathlena called the Zoomeum because we generally go to the Zoo after our visits. Since, Mom is 6 months along and we are in the middle of a heat wave I thought the Museum would be a better choice for us. So, we had our usual picnic lunch with Daddy at Herman Park then Daddy dropped us off at the Museum while he went to call on customers downtown.

The museum was packed! I couldn't imagine so many kids in one place. There were many day camp groups there as the Children's Museum had opened some new exhibits. We had fun. It was Andrew and Kathlena's first time to go to this museum and Emily and J.Michael had not been in years so it was a treat for all of them. I was so proud of Andrew and Kathlena as they did so well with all the excitement to stay right close by and not get distracted and wander off. I don't think we could have done this last summer for sure! It was a real testimony to their growth and training and I was so blessed. We had a great time.

Post-Surgery-Removing the Bandage

Andrew slept for quite a while...almost 3pm.
We woke him up to try and eat a little, remove
his bandage and give him his first round of eye
drops since surgery. Here he is sitting up and
drinking some water and eating some crackers...
he was really thirsty as you can imagine.

He told us he felt a little queasy walking around. We set
him back up in our bed to remove his bandages and see
his eye for the first time.

Lots of tape to remove carefully.

The hardest part removing the last part.

Andrew was such a trooper though. His eye

looked fantastic. We had been prepared

for bruising especially since he is so fair skinned,

but not a single bruise. His eye was really not

even as swollen as we would have thought. Praise

the Lord. Andrew was not in pain he could feel

the stitches, but that was all.

Some light sensitivity, but very normal.

Wow! truly amazing. His eye is straight and they are tracking

together nicely already.

Here is Andrew sporting his new hat that was the packaging from PawPaw and Grandmommie's gift...homemade play dough. What a thoughtful gift, thank you! Andrew was so excited to get a package and he said, "Grandmommie even made it in my favorite color, yellow"

He is also eating his requested V-8 blueberry pomegranate homemade Popsicle. He is keeping

everything down despite feeling a little queasy. I gave him some peppermint water to help with

the nausea some. We have also had him keep an ice cold rag soaked in Ledum (essential oil, anti-inflammatory) water. His swelling has reduced significantly. He is seeing double vision which contributes to the nausea and dizziness, but that is to be expected for the first few days. In fact we believe this to be a good sign that his brain is recognizing the eye in its new position. Dr. Mazow said it should clear up in a few days.

Kathlena has been checking in on Andrew as he has been sleeping on and off today. She told me she just wanted to watch Andrew sleep that she knew he couldn't play yet. Such a sweet little sister. She has been very concerned about Andrew and his surgery. She keeps telling Andrew that she is having her surgery tomorrow or Monday. Because what ever Andrew does Kathlena wants to do also. Even after Andrew explained all that he remembered today she was still ready for her "surgery". Perhaps a good thing that she is so ready as she may very well one day have the same surgery...only time will tell. If she does need it, we couldn't be more pleased with Dr. Mazow and count it a privilege to have him do the surgery.

Well it has been an exciting day and Mommy is quite tired. Even though I snuck in a nap with Andrew too. The boys are sleeping in the guest room tonight in case Andrew needs to get up or Mommy needs to get up and check on him. I thought the airplane bed was just to much for Andrew and Mommy to navigate in the dark and a fall for either of us would not be good.

Andrew's Eye Surgery

Andrew's surgery went very well and quite quickly. Here we are in the lobby filling out the last of the paperwork to get checked in. We made it downtown in record time...just over 50mins with no traffic so, we were early and that was a good feeling.




Here Andrew is opening his toy the nurses gave him to play with
to pass the time. He also received a star over his left eye to make
sure they worked on the correct eye.

Andrew and Daddy setting up his aquatic figures. Andrew was a little
nervous and the fish were a great distraction and way to pass the time.

We opted for the "goofy" juice that helped Andrew to relax.
He was a little concerned about us leaving him while he was in surgery.
Within about 15-20 he was giggly and very tired. We were right at the
entrance to the O.R. so Andrew got to see lots of people young and old
be taken to surgery before he went in. I think this helped him too, to
see what would happen when it was his turn. When it was his turn he
went without a peep or reservation...he was ready.

After a little over an hour we were called back to talk to Dr.
Mazow and he was quite pleased with the surgery and said
Andrew was doing great. We were then sent down to see
Andrew in recovery. He was still asleep when we first saw him. It
wasn't too long before we were able to get him to stir as I
whispered "what ice cream are you ready to go get?" The
anesthesiologist told us it might take longer for him to wake
up since he had the "goofy" juice. He woke up fairly quickly,
but a little groggy as you can see below.

He was soon ready to drink some apple juice and wanted to play
with his mask they let him keep. He did end up with some
bandages for the ride home to keep dirt out. We will take them
off once we are home and he is settled. He also kept telling us
that " I didn't feel or hear anything" Just as we had hoped he
will likely not remember much of this.

We had a wonderful recovery nurse, Teresa,
who helped us get going quickly. She packed us
with snacks and drinks for all of us as she knew
we had a long drive home. She was a real blessing
and pictured below pushing Andrew to the car
in a wheel chair which he was really excited
to ride in.



Andrew slept the whole way home and didn't have any trouble with nausea...PTL! That was an answered prayer as getting sick was a big concern with a long trip. As soon as we were home sisters and brothers greeted him, but he was really tired so he went straight to bed and is still sleeping now. I will update when he wakes up. We haven't removed the bandages yet since he was so tired we thought best for him to sleep with it on to not rub his eye in his sleep.

Thank you sweet friends and family for your prayers, calls, emails, and txt msgs of encouragement we are very blessed and grateful to the Lord for all that He has done today.

Andrew's Surgery Update

Andrew will have his surgery around 8am tomorrow. We will be arriving for pre-op around 7am which means we will be heading out from the house around 5:30am. Andrew's surgery should be about 45mins-1 hour with an additional hour in recovery.

It all seems relatively simple until I factor in that this is my child which makes it anything, but simple to Mommy. With much prayer I am in a good place knowing that despite the complexity and number of people involved in making this surgery happen who will only know us by a pre-op number; I know that ultimately Andrew is in the most capable hands...the Lord's. We pray for precision and wisdom for Dr. Mazow whom we are very confident is exactly the surgeon Andrew needed.

Andrew is so ready for this surgery. He was telling us at dinner last night that he cannot wait to be able to see better and be able to read. Now, we had to explain to him that we will still be working on his reading as that is learned not acquired through surgery. But, I do have to wonder if in some way he is correct and that he will be reading soon with his corrected vision. By sound and large letters he is sounding out and "reading" simple words. The phonics part makes absolute sense to him and he is so auditory that he hears the distinct sounds and can say them (well most, blends are still a challenge) . I cannot at this moment imagine how much this will change him and the continued phenomenal growth we will see in his life.

Andrew will be the second patient in line tomorrow. Join us as we pray for a safe ride to and from Gramercy Outpatient Clinic, no complications with anestesia and surgery itself. We are so thankful that the Lord hears our feeble prayers and for His great love and mercy towards Andrew.

"As for God, His way is perfect; The word of the Lord is proven; He is a shield to all who trust in Him. For who is God, except the LORD? And who is a rock, except our God? It is God who arms me with strength, And makes my way perfect." Psalm 18:30-32