Wednesday, July 30, 2008

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.

Thursday, July 24, 2008

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


Sunday, July 13, 2008

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.