The gift of sight

Which is what I feel like we have been granted with our sweet Gabe. The surgery that he had in China is a huge success and the doctor says that with this surgery, we usually see lifelong success! Yayyyyy!!!! The damage that Gabe's eyes had before cannot be reversed, but the things he does see is a gift.
Gabe's eyes looked great as well as his pressure! What a blessing!

All clear...

Gabe got the all clear by our family doctor today to be cleared for surgery next month...ok not technically surgery. Gabe is having his eye exam and pressure check under anesthesia (same as last year). The only thing that would stop things would be if he developed a fever or a bad respiratory infection as he has a small cold right now. It is about now I start praying that all is still stable with Gabie's eyes. I am also looking forward to getting him some new glasses with transition lenses! Will update you on Dec. 10th on how our exam goes!

On a related, but slightly different note...we had conferences with Gabe's preschool teacher last week. She is concerned about some of his large motor and most of his fine motor development. I too had noticed especially in his cutting and drawing skills how behind he is. We work on some of it at home, but some of it is due to his vision and I am sure a lot of it has to do with his first 3.5 yrs. Last year at his IEP the OT/PT consultant felt that Gabe was not far enough behind to warrant services, which really bothered me. I felt that part of it was that because I am a teacher, I somehow had the magic wand to improve this area of Gabe's development. Granted, we have seen so many gains in all of the areas he struggled in a year ago, but those motor skills are heightened by his vision loss. It still blows me away how little muscle tone he had in China and how off his gate was in running and walking. So.....I put in a request for OT/PT testing based on a development motor test that he took in preschool and observances from his teacher and myself. After I gave the letter to the center director, the vision impairment specialist came in to do an observation and she too noticed that he is having a tough time in the motor areas! Well, we are on it and trying to get a little additional help and will continue to plug away. I already know that I will not be sending him to Kindergarten next year, so we have some time to grow!

A DSi in Gabe's future??

So for a few months now, Gabe has been asking for a DS like his big brother and sister. The sad news for him was that the screen is just too small. As it is, his leapster screen is borderline (he does pretty well with it), but the DS screen is smaller. Today one of my co-workers talked about how her son just got a DSi XL. I inquired and then did some research tonight and found out that this new DSi has a screen that is much larger and the system itself is larger with a larger sylis. How awesome is that!??? Probably not to many people, but for a kiddo with vision loss, this is awesome! When he is old enough, a DS like his brother and sister may just be in his future! One more hurdle down!

Gabe's Gotcha/forever family Day video

Happy 1 yr to our sweet boy! I can't believe it was one year ago we were blessed with our sweet Suzhou boy!
Love you Gabie!!

Praising God for Glaucoma Victories!

Gabe's friend D(friend many miles away!) had surgery to relive some of the pressure in her one eye with glaucoma. They found out yesterday that not only is the eye holding off the pressure, but that her vision in that eye has improved! Yahoo!! Yay D! And Yay God!

To see Kristi's post click HERE.

Toddlers and glasses-definately a 'through the looking glass' experience!

I have been in thought lately about little ones and glasses. I remember thinking, "How on earth are we going to get this spicey 3.5 yr old to wear glasses!" I am sure any parent of a toddler who is told that their child needs to wear glasses probably feels the same way! My worries were really for null as Gabe has put on his glasses and never bothers them. Last week another adoptive mom was struck with her little one needing to get glasses and it got me thinking of all the things I have learned in this adventure with Ophthalmologists, Optometrists, and toddler glasses. It is not quite as easy as "lets take that pair-they are cute!" It is actually a lot more complicated. Otherwise you will be like us and running every week to have glasses adjusted, nose pads fixed or changed, or a child whose glasses won't stay up! In fact I wish there would have been a little more guidance for us by the eye-glass professionals on how to fit a small child with glasses. We chose our pair same day, however I really am not sure we should have. I think some research should be done first. There are actually quite a few choices.

When we first picked Gabe's glasses out, we went with a standard fisher-price pair. We chose a neutral frame and I was relieved when the pair that we tried on had what they call ear cables.

The cables curve around the ear to help hold the glasses in place. I really liked how they helped stabilize the glasses on Gabe's little face. These actually work great for Gabe. You can even tell that he feels as though they are more secure. I was grateful that the lady who helped up suggested these to us.

One issue we have run into is the nose pads on Gabe's glasses. They are standard ones for a kiddo with a nose bridge...Gabe has about a zero bridge. Most Asian children don't have much of a bridge, so traditional nose pads are not the #1 choice. We had to go in many times to get the nose pads adjusted so that his glasses wouldn't slip. We now have little round nose pads, that are a little thicker and a stickier plastic that work very well. Again, trial and error though. There are other nose pad options. If you check out our friend, Kristi's blog HERE you will see her beautiful daughter Darcy, who also has glaucoma (of one eye), who has a one piece nose pad that I really like. It seems to really help her with the 'no bridge' issue. I have also learned that many places carry lines of glasses for kids with Down Syndrome. Kiddos with Downs also lack the nose bridge, so these lines of glasses have that in mind. Recently I asked our Optometrists about such a line and they really did not have any knowledge of such glasses, however, I found this site on the net that make glasses for kids with Downs and other special needs: http://www.specs4us.com/ Just awesome!

We were blessed shortly after getting Gabe's prescription with an adoption friend whose husband is an Optometrists (I believe) and was able to make us a spare pair of glasses. (Thanks again Amy!) I am not sure what we would have done, esp since we have lost one of those darn nose pads about once a month lately! We also at
one point lost one of the arms off of Gabe's glasses and had to use the spare for a weekend before we could get them repaired. (We were on our way for a mini-vacation and Gabe really needed his glasses!) I highly recommend getting a spare pair from Wal*mart or another inexpensive place. They do not have to be pretty, just do the the job.

On a final note, as summer is upon us, we found that it was hard to have Gabe wear sunglasses instead of his glasses. He desperately needs his glasses on, however there are times when the light gets to his eyes. I wish the idea of transitions would have been mentioned to us. We ordered Gabe's glasses last Oct. and our insurance will ok another pair ofter July 1st. So when we had Gabe's last eye appt. I asked Dr. T what he thought of the transitions. He thought that it would be a good idea, however, he thought that there would be a possibility that he will have to update Gabe's prescription again in Dec. So, do we get the transitions now, get them for free, but if he needs a new prescription in Dec, we have to pay for those 100%! And that thought that the frames are the most expensive part...not necessarily true. So, we have decided to wait for Dec. and get the transitions then, but I am still kicking myself that we didn't do it before. In doing research I came across this great 'need to know' info for all parents buying their children eye glasses:
-- Also, children should always have polycarbonate lenses in their eyeglass frames for safety. These lenses are made of a special plastic that is almost unbreakable — the same material used in bulletproof windows. Polycarbonate lenses provide 100 percent UV protection as part of their makeup, so your son will be safe wearing them. And polycarbonate Transitions lenses darken automatically in the sun to improve comfort. — Dr. Dubow


More great reading regarding choosing kids glasses:

http://www.allaboutvision.com/buysmart/kidseyewear.htm

http://www.allaboutvision.com/frames/kids.htm

http://www.eyedoctorguide.com/childrens_eyecare/buying_children_glasses.html



Glasses have really opened up the world for Gabe. Helping him to see the world around him is very important to us! If you have never had to enter into the world of kiddo glasses, I hope that you find the guidance to make the best choice for your child. To quote one of the articles above: "It's important that their glasses do several things: they have to fit well, give clear vision, and be safe for even the roughest children."

May I ask...

Today I had someone very politely ask me about Gabe's eyes. Did they automatically know there was something up due to his glasses? I have seen countless blogs of little ones from China home and wearing glasses. I have to wonder if Gabe had been looking very closely at things which made her wonder?? She did however, ask very nicely if she could ask "to what degree..." and pointed to her eyes. I got the hint and openly volunteered that he had glaucoma of both eyes that was under control...same story every time. To see the look on peoples faces when I tell them though, sadness, pity, worry??? That bothers me to a certain degree. Gabe sees great, for well, Gabe! He does everything all the other 4 year olds do. He does not need sadness, he his perfect! He has his glasses now, he is home, and he has all the toys a kids could want (ok, who am I kidding, he always wants more!).
Here is a link to an article which I have seen another version of the same thing about how Chinese are more likely nearsighted: http://www.8asians.com/2010/06/18/chinese-more-likely-to-be-nearsighted/

On another note, my MIL was out with the kids this past week and they ran into a teen who just could not get over how cute Gabe was, because...he looks like Aaden Gosselin. I have heard this one more than once too. It cracks me up,(I had to look Aaden up as I have never seen the show) but Jon Gosselin isn't Chinese at all he is half Korean a quarter French and a quarter Welsh. It appears that he has inherited more Korean characteristics as he looks more Asian. His mother is Korean but was born and raised in Hawaii. This was stated on the Korean American Journal. Just a bit of useless trivia for you all!
So what do you think? Aaden and Gabe-could Gabe be his look alike?

Updated eye appt.

Gabe had an eye exam on Wednesday. It was in office and Gabe was a real trooper again! The nurses and our doctor was just amazed at his language in 9 months! Dr. could tell that his pressure still looks very good and there are no cataracts forming!
Yay!!
We will head to Munson in Dec. for another under anesthesia eye exam and we are going to order him transitions lenses in the next couple of weeks. Dr. has seen the transitions help some people with glaucoma with the brightness and sun.
I have to say that I was filled with a lot of anxiety for this appt. We have not seen any changes in his vision at home, but it is in the back of my mind..."what if..." After all this little boy has already been through, I do not want him to worry about this!
Summer is here and Gabe Xulu is enjoying the outdoors...he would be outside 24 hrs a day! He loves the trampoline and the sandbox! We cannot wait until beach weather is here to stay!

No Hands But Ours

Gabe's story is on the web for families who are considering adopting special needs to read. It is my prayer that by reading it, families will open their hearts and minds to not only waiting boys, but children with vision needs. Click on this link and then click on family stories-ours is the first one!!

http://www.nohandsbutours.com/

All Set

Gabe's IEP is all set and ready to help him as he needs it. This plan is speical educaion, but not how one might view special educaion in a negative way. So many view those words as something bad or negative. This is a plan to help Gabe be successful if he should need it. He will not be pulled out of his classroom and sent to the 'special' room, but instead the vision impairment specialist will be in contact monthly with Gabe's teacher for any questions, or needs on how to make things easier for him. Right now at preschool there not be much that needs to be done, but Gabe is the first vision impaired child our school has seen in many many years. Gabe's wonderful teacher for next year already has some great questions and our #1 goal is to make things normal for him! This is scary territory ans yesterday I had to speak up and say, "Hey, some things that have happened over the last couple of weeks were not ok." (Which was very hard for me as I hate confrontation/conflict). So, this is a good thing. Asking for help is ok. And one thing that I keep saying to myself is the comforting words of my Jesus saying over and over , "Do not fear!"

He is doing great, but...

**Just a little note that I wrote this post and really had to decide if I wanted to share this little facet of our lives as for Gabe it is personal and fairly revealing, but I want our lives with glaucoma not to be something he is ashamed about, or what defines him, but a challenge that he works through with our help!
__________________________________________________________
Can I just spend a minute of your time telling you how wonderfully Gabe is doing? I will tell you why in a minutes, but for right this second I want to sing a few of his praises:

-He has picked up the english language so well in 6 months that everyone is amazed!
-He is extremely outgoing and friendly.
-He checks out everyone and everything and is not shy at all.
-Gabe will try almost anything once.
-He has a great sense of humor! Example, tonight he was not Gabie Xulu, he was monster truck "vroooooom"!
-He participates in group activities.
-He separates fairly easily as long as it is a familiar place or person.

Ok, so now why do I feel that I need to list those, well this week we had an interesting 'home visit' from our local ISD's social worker. This is a normal part of the IEP (individual education plan-aka special education) process. Without taking an hour typing out the whole visit lets just say that when we began the process of getting Gabe help with his vision, I thought that by saying, "congenital glaucoma of both eyes" was a moderate no-brainer. Ok, so it wasn't, so let throw in 'vision loss', or even "highly myopic".
(Here is Websters definition for myopia: 1 : a condition in which the visual images come to a focus in front of the retina of the eye resulting especially in defective vision of distant objects 2 : a lack of foresight or discernment : a narrow view of something)

Nope, still didn't do it. Apparently that little meeting we had a month ago where I stated that I wanted Gabe to receive services to help us and most importantly to help him with his vision loss and to help him be successful in school, I didn't give enough reasons why we feel that Gabe needs this! So, back to this home visit, the sw asked us why we wanted to label our son. So, I spent all of an hour telling her all of his negatives, how he runs into things, how he has difficulty seeing details, seeing the TV, seeing books, etc and the list goes on...Hmmmmm...this really got me thinking something was up after she left. (and not feeling so good that I just spent an hour talking in the negative).

What I thought was, "I think that they don't want to give our son the help he needs???" 2 sleepless nights later, and a call to the director (who is wonderful and a huge advocate of children) of Gabe's daycare (and preschool next year) and found out that yes, this is the case. Really?? I mean really?? I have seen kids with food allergies get IEP's, but my son with moderate vision loss doesn't qualify under Vision Impairment guidelines?? Trust me, if we didn't feel that we needed to do this, we wouldn't! If I could take away the glaucoma I would. No one is going to look at Gabe and say "Hey look at that kid with an IEP!" But there are going to be times when he is in school and maybe it is a book the teacher is reading at the front of the room and he cannot see it, or the teacher uses and overhead projector most of the day, the list could go on. It is my job and was my promise to make sure he has an extremely boring and normal life (ok not so boring around here), not a life where he has to struggle daily.

Well, Thank you Dr. T for writing such a great explanation of Gabe's glaucoma because we got a call yesterday saying that yes, they were going to give my son their help! Thank you Lord for helping us over that hurdle!

Tests??

Since coming home, Gabe has been thoroughly seen for his special need-his glaucoma,but has really not had much medically checked out. We asked the doctor to perform the recent stool samples for parasites etc which can be common in institutionalized children. However, we have not had anything looked into for low iron, things like hep b, lead, or any flags raised about his low weight. Recently I asked an adoption community I am a part of if this is common. Many thought that yes, we should have had all this done or at least should at the 6 month mark. Well, in the next couple of weeks we will be hitting 6 months. So, my friends shared this link to the American Association of Pediatrics brochure for Internationally adopted children http://www.aap.org/sections/adoption/healthtopic/BrochureEasy-to-read.pdf that I plan to take to our doctor this week to see what they think Gabe should have done. I would like them to be monitoring him a little more closely as he is only in the 5th percentile as far as I can tell.

Also, yesterday Gabe was observed by the vision impairment specialist that will be working with him. She really wanted to get to know the child, not just a name on the paper-isn't that wonderful! She agreed that he is not anywhere near a 4 yr old developmentally and she thinks that he would benefit from going to the center more than 1 day a week. So, we are going to work on that in late March. He loves going, but I think it may be hard on his Ayi to let him go as she is really attached!!

Looking to the future

Today we started down the road that I have been on as a teacher many times, but as a parent-a first. Today we held an EPM (Educational Planning Meeting) for Gabe. It is funny as many of these as I have been to, I am still surprised at how strange it felt having it be "my" child we were talking about. It was very intimidating walking in and seeing the table of 7 education professionals sitting there. There was OT, Speech, vision impairment specialist, Teacher consultant, Center director, classroom teacher, and School psychologist. At this meeting we begin the process of getting Gabe Special Education services and to see what he needs right now and what he may need in the future to help him to be successful in school. We will have another meeting in a month to put the plan into place for him.
Right now Gabe is doing great-having only been home for 5 months he is doing wonderfully, but there will be a time, when he may need some help especially for his vision loss. It was very frustrating for me that after we came home, I found that in our area we do not offer much for children who are delayed between the ages of 3 & 5. As great as he is doing, Gabe is still very far behind other 4 yr olds in all areas. It is my hope that after a full summer home, running and playing, that we will not see a need for OT or speech. But, I wanted it to be in place if he needs it after school starts. That being said however, the need for services for his vision will not be something that goes away. He may become more comfortable with his glasses, he may get more used to them, and his eyes will continue to grow. But, there will be things that are going to be out of the 'norm' for my Gabie and I want him to have every opportunity that he can and to be successful.
So, during out meeting we agreed that Gabe will have a 'working' file and we will revisit his needs as next year (preschool) begins. Right now he is still adjusting, so the need for OT and speech may diminish as time goes on between now and Sept. The vision impairment specialist will continue to monitor were Gabe and his teachers need for support as right now in daycare they are doing a wonderful job accommodating him. Taking it one step at a time :-)

Pediatric Glaucoma Awareness

Please help us raise awareness about pediatric glaucoma-take a minute to sign this petition:

http://www.thepetitionsite.com/1/raising-awareness-of-pediatric-glaucoma

Negative

His stool tests came back negative, so now I am left wondering what is up with these very loose stools (TMI for some I know). I guess we will have to start documenting the juice and milk intake to see if it is just too much juice or a lactose thing. If anyone out there in blogger land has any ideas I would appreciate them!

A good day for an eye exam :-)

*Don't you love the pink dinosaur hospital jammies!

Today our Gabie Xulu had his eye exam in TC. They had to put him under in order to get a good look at his eye and measure his pressure. Gabe was so good with all of it. We went up to TC the night before as he had to be at the hospital between 6:30 and 6:45am and with the snow here I didn't want to leave the house at 4am to get there on time. My friend and Gabe's Ayi, Melissa went up with us and we had dinner at Olive Garden and enjoyed the Marriott's hot tub before bed. It was an early morning and Gabe was a happy and charming man for the first hour or so. He enjoyed going on a couple of tours meeting all the nurses with our head nurse, but after he got the second round of eye drops, which stung and really really dilated his eyes, he got pretty quiet and cuddly. The nurse that pre-admitted us on the phone the other day had said that I could stay with him until he was asleep, but they took him before, and he was a little leery, but he enjoyed the ride on the gurney! The nurse even made race car noises for him :-) In no time the doctor was coming out to see us and he was able to give us this info...
1. His pressure is great! The surgery in China was good, although China's paperwork declared him "cured", he will never be "cured". His pressure may go up in the future, but he has no way of know when or if it will, so it will always have to be checked. If it does go up, we will use drops to lower it.
2. He does have vision loss as a result of 8 months of high pressure/cloudy eyes. We won't know exactly how much until he is older. He really doesn't have much of a nystagmus (wobbley eyes) which is really good.
3. His prescription is right on, so we don't have to get new glasses right now :-) Yay!
4. We will see doctor ever 6 months, and once per year they will do this type of check. They will have to do the under anesthesia check for 3-4 more years. We will meet again with the doctor in June to talk about preschool and the fall as he will probably need an IEP and some support in school for his vision loss.
5. He will always wear glasses - which I already knew :-)

So, we were very happy with this and we love our doctor. We had just gotten home this afternoon when the doctor called to checked to see how he was doing. Everyone at the hospital was so kind and caring and helped make him as comfortable as possible.
Gabe tolerated the anesthesia well, but coming out of it was tough. They brought him around without me there and that was baaaaaaad! I have never seen him so distraught! He couldn't focus on me and was clawing his way out of his clothes, off of(first the nurse when I walked in and then me)-kicking and screaming for about 15 minutes! They got him a warm blanket and when he started to calm down, then I did what every guilty mom does-promised to go buy him a new toy!! And hey it helped, so I was ok with it! After a little bit they gave him his discharge instructions-no alcohol, no major decision making, and not to be left alone and we were good to go!

And yes, we stopped at Toys R Us and he got a new tractor! ;-)

Starting eye drops tomorrow...

Tomorrow we begin giving Gabe eye drops in both eyes until his procedure on Friday am. I am sure this will be new territory for him, but as he has taken everything in stride, I pray that he will cooperate enough to make it easy on all of us!
I didn't think I would be this nervous about the whole thing. His eyes are such a non issue for us that it seems strange to be thinking of them this week and getting ready for this procedure. (For those of you who do not know, Gabe will be going under Anesthesia so that his ophthalmologist can get a pressure reading on his eyes and get a better idea of what his vision loss is.) I have never had one of my kids go 'under'-I worry about my sweet boy.
We appreciate everyone's prayers that he is not scared at any point (I should be with him right up until he is asleep and he will awake with me there), that the doctor can get a good look at his eyes and that the anesthesia doesn't give him any problems.

I am looking forward to getting a clearer picture of his vision loss and what this will mean as he begins school next year.