Crossing our fingers...

So we were pretty busy this last week with Landon. We made several trips to the ocularist for fittings and trials with his shield. We have been working really closely with Robin (the ocularist) to fit him just right so that we don't add any uneccessary irritation to his eye. She has been wonderfully patient and even gave us her home number incase we had an emergency once we got home.

So Monday we had to practice taking the shield in and out. I cannot tell you how much I was DREADING this. And I'm a nurse for heaven's sake! It is SOOOO different when it's your own baby. Now remember this takes three people to hold him down and take the shield out and put it back in. Well for the first time ever, I wasn't able to do something medical and my husband was. I COULD NOT get that stupid shield out and the more I tried the more frustrated I became. So Robin ended up taking it out for me and then it was Jeremy's turn to put it back in and take it out. He did great. I was much better at holding Landon. I like the comforting part. So, I have decided that it will be Jeremy's primary job to take the shield in and out when we need to. I just flat out refuse to do it! My nursing friends would be appalled!

So cosmetically Robin has done an amazing job. The colored part of the eye just needs to be turned in a hair and it is done. He looks GREAT! It has only been 5 months that his eye has begun to shrink so drastically. I can't tell you how different he looks with both of his eyes open and bright. It does my heart good. I just sit and stare at him. Now it doesn't move with his other eye but that's okay. Just to have his lids open is great. I will post pictures of him as soon as we get the final product. The color is dead on!

We are so proud of Landon. He has been throug the ringer. We are hoping the shield only has to come out once a week to be cleaned. We go to see Dr. Holz on the 22nd of August. I am anxious to see what he will think of Bug's new eye. God is good and we are standing in faith that this will work for Landon permanently!! Your continued prayers for him are appreciated. Thanks for checking on him.

The ocularist

So we met the ocularist on Monday afternoon. She's really great. The process of fitting Landon with this scleral shield has been a bit traumatic for us both. Robin, the ocularist, informed me that my son is "abnormally strong." Yea, tell me something I don't know. When she went to fit him for the shield, he squeezed his eyes shut so tightly she had to pry them open with her hands to get it in. This was a three person job! And we had to do it 8 times; 4 times to put it in, 4 times to take it out! By the end of the 3 hour appointment we had had it. We had all hit our limit (my mom included) and were ready to get out of there. Robin was very patient and did a lot of work in one day. 

So we went back this morning and put it back in. In the meantime she had painted it to match his good eye. The color match she did was amazing! She put just a tiny hint of too much green in it but other than that it was a total match. She had to take it out and will have to move the iris over some because its too far in so he looked a little cross eyed with it. But we go back Monday to make the final fit and hopefully finish the process. Our main concern is that his eye will be too sensitive. We will have to just watch him for this since he can't tell us if it hurts. He did a little better today but still a 3 person job to get it in and out. Poor Bug!

On another note, I went to my first OB appointment yesterday and the baby is measuring 2 weeks smaller than my dates are calculating. Also, I have a subchorionic hematoma (google please). So we will go back in 2 weeks and check things out by ultrasound. Please keep Landon and his new sibling in your prayers. Have a blessed weekend. I will let you know how his eye turns out on Monday and hopefully post new pictures of our little man with his new prosthetic!

"Consequently, faith comes from hearing the message, and the message is heard through the word of Christ."

Romans 10:17

Update

Hello everyone! I know it's been a while since I've posted an update. It has been a wonderful couple of months. Landon has been strolling around and cruising like the wild man that he is! We have been enjoying his energy, although at times he wears us out! His favorite thing to do is push his little car and his wagon around the cul-da-sac every evening when we water the grass. He also likes the ice cream truck :)

We do have an update on his eye. Dr. Holz sent us to an ocular plastic surgeon this past Friday. (he does plastic surgery just on the eyes). His name is Dr. Yen and he is WONDERFUL! He was great with Landon and got down on the floor and gave him a high five. I really appreciated this since Landon is now so scared of medical people. We call it the "white coat syndrome." Anyway, he was pretty confident that we should not wait until pre-K to fit Landon for a scleral shield ( the hard plastic contact like device that fits over his eye to give him more volume). He was also fairly surprised that Dr. Holz had recommended waiting. My personal opinion is that Dr. Holz has taken a liking to my little boy and is holding out all hope for a future "cure" for Landon's lack of vision. We on the other hand are more worried about our son's face being symmetrical and are ready to do something about it. His face is fine now! But as the eye continues to shrink his bones around his eye may not grow properly. So Dr. Yen is sending us to an ocularist to try Landon with the shield.

The not so great news is that although he is willing to try the shield, he is not confident that Landon's eye will tolerate it. Some days he has good days with his eye and other days you can tell it is irritated and driving him crazy. So he thinks in the long run we will probably have to surgically remove the eye and get him a prosthetic eye. This is okay except for that one little word....Surgically! We absolutely HATE putting him through surgery. It pains us more than him I'm sure but it still stinks! It is just outpatient surgery, but his lids will be stitched together for 6 weeks afterwards. I really just want to get all of this done before he goes to kindergarten. I don't want other kids to make fun of him or stare. I'm sure they will already do that when he starts mother's day out next month. Especially if his lids are stitched shut!

So that is where we stand. Just when we thought we were all finished torturing my baby! Another surgery is hanging over our heads. But all will be fine. He is truly the strongest little man I know.

One more thing, for those of you who don't know already, he's going to be a big brother in March!
We are super excited. He is going to be a great big bubba! Thanks for following our journey. We love you all.

Follow-up

So we went to see Dr. Holz last week and yesterday for follow up appointments.  Everything looks good. He gave us more steroid drops that he will probably be on for a long time just to decrease the swelling and inflammation. He says to treat Landon like a little boy and let him do everything he wants. As long as he has his glasses on!! We go back to see him in 3 weeks. Dr. Holz has really taken a liking to our little man. He was a very no nonsense guy when we first met him and he has had to give us nothing but bad news since the beginning, but when he sees Landon now, he waves at him and plays with him (when Landon will let him get close, which is not often :) We sent him and his assistant a cookie bouquet last week for being so good to us and Landon. Do you know that man did not share a single cookie with his staff?? He took it home and shared it with his wife and little boy! I can't help but think he was probably glad to go home to a son with two good eyes. And that's good. I'm glad Landon makes people love eachother more!!

On that note, we cannot slow this child down!! He is into everything, and stops for nothing (but an occassional cookie!) Everyone told me he would adapt and boy has he. Since he has no peripheral vision in that right eye, he is learning to feel with his body when things are close to the right side. He almost bumped into the car yesterday but brushed it just enough with his shoulder to let him know it was there. It's pretty impressive. 

We went to the zoo yesterday and he loved it! My mom was carrying him around the reptile cages and he looked at the huge python and said "Ewwwww, Yuck, Yuck!! My sentiments exactly! Hope everyone has a blessed weekend!

We're done

What a day! Sorry it has taken me a while to get to the computer. We are more than exhausted; mentally and physically. Landon was such a trooper today. We are so very proud of him. On that note, our greatest fears were confirmed. His eye is beyond repair. Dr. Holz said that the retina was not only completely detached but it was also folded up and pushed to the front of the eye. He said he didn't want to go into all of the "gory details." It was really no surprise to either of us. I told Dr. Holz that I did not regret going into surgery; we had to know; and he agreed. He said he had to know, too.

On a good note, they did not move forward with the corneal transplant. Apparently Dr. Omalley was right about that. His cornea was clear so they removed the cataract and closed his eye up. I am incredibly greatful that we did not have to do the transplant and that Landon will keep his eye. We will treat him for comfort; meaning we will make sure there is NO pain! And then we will talk about the hard contact like shield for cosmetics probably prior to pre-K or kindergarten. Before he hits his big socialization period :)

We cannot tell you how glad we are to be finished with this. There will be no more operating room, and only a few weeks worth of post op visits. He will go on wearing his little safety glasses and he'll be just fine. We were very disappointed, but that is overshadowed by the great feeling of completion. We have put our baby through more than enough, and we are glad to be done. 

I think that Landon will have a great testimony one day. I don't ask "why" this happened because no one knows but God and I can ask him one day when I get to heaven. We have learned more about faith than I can tell you and we have been stretched. But I am at a better place now than where I was when we started this ordeal and I feel good about that. Do I wish that God would have stretched me by using my own body and not my baby's? SURE DO! But it is all in his hands and we are moving on. Thank goodness!

We want to thank you for following this journey with us through this blog. It has been a great way to touch base with everyone and more importantly as I've said from the get go, it has been a great venting mechanism. I know my best friend has gotten tired of listening to me rant and rave about this, but she's never said so; and I love her for that. Thank you for praying and believing with us, even though the outcome has not been what we wanted. We have a baby who's blind in one eye and he is going to do amazing things all in Jesus' name. Thank you, we love you all. We'll let you know what happens at the post op visit tomorrow. 

Change of plans

So we talked to Dr. Holz's assistant today and they are moving the surgery from Texas Childrens to Methodist hospital. Apparently since corneal transplants are uncommon in kids, Children's doesn't have the transplant equipment that they need, and Methodist does but is not willing to lend it to Children's. That really bums me out because we really wanted it done at Children's. It is such a kid friendly atmosphere and of course I work there so I am familiar with it. The other thing that bums me out is that at Children's I get a 60% discount for being an employee... that certainly would have helped with the insurance bills. That's okay though. As long as we have the two best doctors we'll be fine wherever we do it.

So we have to meet at our doc's office in the morning at 8 to sign consent forms. Then we will head to Methodist and surgery will be at 11 instead of 10:30. So although the time and location have changed, we are still asking for everyone to be in prayer at 11. The most wonderful mother's day gift would be for them to fix Landon's eye. We are praying for that, but if it doesn't happen at least I will get to spend Mother's Day with my baby. We love you all and thank you for your support. We'll let you all know how everything goes tomorrow afternoon. DON'T FORGET TO PRAY AT 11!!!

"Jesus said to him, "Receive your sight; your faith has healed you." Immediately he received his sight and followed Jesus, praising God. When all the people saw it, they also praised God.

~Luke 18:42-43

Confirmation

So our doctor's office called today and we are set for surgery on Thursday at 10:30. We are anxious and nervous but ready to have it done and over with.  They were able to work out the schedule with their first choice Corneal specialist, so that makes me feel good. Dr. Holz will work on the retina and Dr. Pflugfelder will do the corneal transplant.  It will be about a 2-3 hour surgery. That is going to be difficult for us. All of the previous surgeries have been about 45 minutes to an hour. We will discuss details prior to taking him back. I am hoping they have the wagon again. Last time they got ready to take him back the anesthesiologist pulled him into the room in a wagon. He was pretty excited about that and it certainly calmed our nerves. 

So please be in prayer at 10:30 on Thursday. Pray for these doctors to work a miracle through God for my son.  He will be fine. We know that. On another note, I had predicted that I would probably have to reschedule my Lasix procedure because they would probably want to do surgery for Landon on my surgery date. Well guess what... I was right. I had to move my Lasix procedure back 2 weeks. I've been dreaming of this for weeks now! But that's okay. My baby is worth it. 

Thank you for checking on us, and continue to pray. Pray specifically that his doctor can completely reattach his retina and that Landon's body does not reject the transplant.

We will update as soon as we can. 

 

Forgive me for the delay in posting. We've done lots of praying and debating over the last 24 hours.  After our visit with Dr. Holz yesterday, we had to make a decision about our next step. Dr. O'Malley told Dr. Holz what he thought about the retina not being completely detached and he thought we should move forward with the surgery to repair the small tear. That also means a corneal transplant. We had decided already not to do the transplant because of the 95% rejection rate in children. But when we got the second opinion from Dr. O'Malley, that threw a kink in our decision. One doctor thinks the retina is irrepairable, the other thinks it isn't that bad. One of them is right, and one of them is wrong. The only way to find out is to go in and do the surgery. That means they remove his cornea, remove the cataract that has developed, and dive into the retina and see what it looks like. Once that is done we have to go through with the corneal transplant. Landon's cornea is too bad to put back into his eye and a clear donor one has to be used. I asked what if he rejects the cornea as children tend to do... then we do another transplant, and another, and another IF his retina can be reattached! If not, then we just do the one transplant, pray that it holds and if it doesn't we just leave it and the eye will go cloudy. Then we will talk about cosmetics later down the road. 

My initial response was an immediate NO. But as my very dear friend Michelle brought up, if we choose not to do it, when Landon comes to us in 20 years and asks if we did all we could to save his vision, will we be able to tell him yes? And if we don't do this surgery I don't think we could be honest with him. 5% is a very weak percentage. And everything continues to hang on the possible repair of the retina. So we've informed Dr. Holz that we are moving forward and we'll wait and see. I'm going to take a leave of absence from work so that I can be there for everything; office visits, pre-op, post-op. 

Please continue to pray for us. This is really scary for us and I don't want to be putting Landon through this for nothing.  

2nd opinion

So we met with the second retinal specialist this morning (Dr. O'Malley). He gave us another perspective on our situation...kind of :)  He also does not think Landon will regain vision in his eye. He put Landon in a straight jacket, strapped him down, and did another ultrasound and a thorough exam.  That was fun! He showed me on the ultrasound where he thought what our first surgeon (Dr. Holz) thought was a significant retinal detachment, was actually what he thought to be a trajectory of the depth of Landon's wound. He believes when Landon poked himself he actually poked his eye ALL THE WAY TO THE BACK!! Ouch. My baby is so tough. He says that the pupil is pretty much non reactive, and the eye is beginning to get soft and the pressures are starting to decrease. Our Dr. Holz told us that his eye would continue to shrink as time went on and Dr. O'Malley agrees with that. But he doesn't see a significant detachment. He sees a small area where the retina is just beginning to detach from the back of the eye and he sees some scar tissue. He also thinks the cornea is clear.

 So, his recommendations are this: go back to the operating room and remove the scar tissue and clean up some of the eye and inject silicone oil into the eye to help it maintain it's shape and hopefully to prevent the eye from shrinking. There is nothing right now that they can do about him developing a lazy eye, which has already started. I assumed from a cosmetic perspective that we could just let the eye continue to shrink and then replace it with a prosthesis. Dr. O'Malley said that removing a child's eye is an absolute last resort because if you do that Landon's facial bones will not grow around that eye as they should.  So this surgery would be mostly to allow him to keep his eye for as long as possible, not to restore his vision. He thinks there is a slim chance if we do this he MAY have very minimal peripheral vision, but no functional vision. So he called Dr. Holz and gave him his recommendations and we go see Dr. Holz tomorrow afternoon. 

I think Jeremy and I have decided not to pursue the NY trip. Apparently, there is a corneal specialist here in Dr. Holz's office that does the Keratoprosthesis and if that is a route that works for Landon than we can do the whole surgery at one time. So that is where we sit.

This may sound crazy but I left that office with a smile on my face. I have a peace now that I have not had since this whole ordeal started. PRAISE GOD! I hate the fact that we will probably put our Bug through another surgery, but I believe in the long run it will be better for him. 

Yesterday afternoon, our family was blessed by some truly Godly and amazing people. Cynthia, Sandra, Jeanine, Barry, Stephanie, Natalie, Jenn, Allison, Misty and my family gathered at our house and prayed over Landon, Jeremy and I and over my mother-in-law. We heard testimonies of healing & hope and we were reminded of scriptures that tell us how much God loves us and is walking through this storm with us.  It was the most spiritual moment of my life that I can remember other than being saved. My faith was restored and my eyes were lifted to God. So thank you to those who were here with us, and thank you to those who pray for us daily. We will never be able to thank you enough. And thanks Aunt Martha for the yummy dinner!! 

I will update tomorrow afternoon after we see Dr. Holz. Continue to pray that we will make the right decisions concerning our Bug!

"And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them."

Romans 8:28

Hmmmm??

Landon will see the other retinal specialist on Monday morning. I am nervous about what he is going to tell us. I so desire for him to tell us he can fix Landon's retina, reattach it and move forward with fixing his cornea. I am trying not to get my hopes up, just take it as it comes. We are trusting God to do the right thing for our baby and to point us in the right direction; wherever that may be.

When our surgeon explained to us that he would need a corneal transplant, he also explained the risks and success rate; or lack there of. Children tend to reject corneal transplants 95% of the time. Mainly because they have such a robust immune system. It is considered a major surgery for them and requires a lot of "poking and crying in the office." That is the way his surgeon explained it to us. We could not see putting him through any more discomfort or torture for a 5% chance of success. So we have looked into this eye institute at Rochester NY simply because they have pioneered a device called the Keratoprosthesis. It is a clear plastic device that replaces the corneal transplant so that you don't have to worry about rejection. So that works
great for children! Of course this all hangs on the fact that someone has to repair his retina first.

So here we are with the nerves again. If he says no he can't repair his retina, do we go somewhere else, or are 2 no's enough? Do I drag him to a third retinal specialist out of state, or just let him continue to play and be a boy? How many no's do I need to hear before I say "okay?" I guess we'll wait and see; and pray for a YES!!

On a funny n0te, I have always said that I hope Landon gets his daddy's vision. I have been in glasses and contacts since I was four! I never wanted him to go through that. Look where we are now :) But Landon was playing at my mom's the other day and he walked over to something on the floor and picked it up and handed it to me and said "look!" (his new favorite word). He handed me the smallest piece of fuzz I had ever seen. I will never know how he saw it, but I think it was God telling me that even if he looses his eye later down the road; he sees better with one eye than I do with both!! I'm getting lasix on May 8th so maybe finally I will be able to see without enhancements. I am burning all paraphenalia that has anything to do with vision correction :)

Thank you for praying for us. We are hoping and praying for God's best for our baby!

Do not be afraid, only believe!
Mark 5:36

Here we go...

So meet Landon. A rowdy, wild little 15 month old boy with an appetite for...trouble!

On March 29th of this year, he poked a hole in his eye with a sharp object. We've been through it; 3 surgeries, lots of office visits, a 4 day stint in the hospital. All of that and a doc who says he won't ever see again out of that eye. He got an overwhelming infection that just did too much damage too quickly. 

It's been a week since we were told he won't see out of his eye again. Probably the most difficult week of my life for sure. I think as a mother, you think you do everything you can to protect them from EVERYTHING. It always seems to be the little inconspicuous things that you miss. Like a night light cover for instance. That's what he poked his eye with. A stinking night light cover!!!! I cannot tell you how the guilt has affected me. It has been like a ton of bricks resting on my chest. To think if I had only removed the stupid thing; this nightmarish roller coaster would have never started. But as I have been reminded these past few days, that is how satan wants me to feel. God on the other hand reminds me that I am not alone in my sadness for my child. That He too went through turmoil and sadness for His son. So slowly, day by day, I am picking myself up off the floor, thanks to my family, my rock of a husband, and of course my God. 

We are seeking out second opinions for Landon's eye. We have an appointment with a second retinal specialist on Monday morning. We live in Houston; a major city with the largest medical center in the country. I found out Wed. that there are only 2 retinal specialists that will deal with children in this huge city full of medical professionals. That seems crazy to me. But it's okay. We may have to fly to Rochester University in NY to seek out specialists there. Where ever the wind takes us I guess. If anyone has any suggestions or knows where we can find a pediatric opthamologist that specializes in detached retinas or corneal transplants please let me know. Thanks for letting me vent!

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

John 10:10