Thursday, July 30, 2009

The Princess' Eyes

We took the princess to the eye doctor yesterday for her follow up exam. Ricky was able to take off work and go with me to this appointment (finally). This was the only doctor he had not met so far...he was glad to go and I was so glad he was with me once we arrived.

Before I tell of the appointment, I should tell our sightings...we have noticed she has been turning her right eye inward for awhile now, hence the repeated visits to the eye doctor. Now for the past couple of weeks, we have noticed she is also turning her left eye inward but it is at the same time as the right eye. We have been thinking it was getting worse instead of better even though we have been putting drops in her left eye once a week (this is supposed to be like patching the eye but she won't keep a patch on her face so we had to go this route. It makes her left eye really blurry so that she is forced to use her right eye. It is supposed to make her right eye stronger). So here is what we learned at the visit...

Laney did great for Dr. Eyeballs. He said it was the best reading he had gotten on her so far. He saw her right eye turning inward lots of times and said to us that he thinks it is getting more pronounced. We agree. So since her vision is great and she is not far-sighted, glasses or bifocals are not an option for her. (that is good and bad...lol. if she had vision problems, glasses would be the first thing to try and it usually works but since no vision problems, we can't try that route) He said sometimes they will try a botox injection but that is a temporary fix and he doesn't think we should try that and neither do we. She is way too young to start cosmetic surgery...LOL! His recommendation is that she have surgery. I almost cried when he said it even though in my heart I knew we were headed that way. The thought of my baby girl having surgery is just scary. I know we have been so blessed and fortunate that she didn't have to have heart or intestinal surgery but it is still hard. We have had ear tubes but that was a hard day for me too. I can't imagine what other parents go through with the major surgeries. We are so thankful we haven't had that (yet...you never know what the future holds). So below I will post an explanation of what is wrong with her eye and some information about the surgery. He said he anticipates her having the surgery within the next 6-12 months. (we have to wait until she is using both eyes equally and a few other things he mentioned but I forgot.)

*Laney has what is called strabismus but the type of strabismus she has is called esotropia (this means her eye drifts inward).

*Having eye muscle surgery will strengthen the eye muscles which changes the alignment of the eye

*The surgery is considered outpatient and she will be put under general anesthesia. She will get to come home the same day. There is no patching of the eye required afterwards. We will only have to use antibiotic eye drops (this is the normal protocol...something could always change or go wrong)

*The surgery consist of Dr. Eyeballs making an incision in the tissue of her eye called conjuctiva to get to the sclera (wall of the eye) to reach the muscles that are attached there. He will then cut the tissue and reattach in a different location (this is called recession).

*Dr. Eyeballs will cut on the eye itself, not the skin around the eye and the eye is NOT removed from the socket during this procedure.

I got all this information from this website: http://www.childrenseyefoundation.org/getdoc/7efd480b-4e92-42a5-84ec-9b813054ae95/Patient-and-Parent-Guide-to-Strabismus-Surgery.aspx

It has lots of information so check it out for more information. I gave just a bare bones overview explanation of what happens.

Dr. Eyeballs wants us to start putting the drops in her eye every other day for now instead of just once a week. We return in 4 weeks for a follow up and they will dilate her eyes at that exam to recheck her vision and so forth again.

Tuesday, July 28, 2009

Time

Time...it just seems to evaporate in front of my eyes. I have great intentions of all the things I need to get done but most of them never come to be because I simply run out of time. Where does it go???

I have now signed up for classes at the local community college. I aim to get my Associates Degree in Early Childhood/Special Needs. I am taking 4 classes this semester along with trying to work some as a substitute teacher and Logan will be in 1st grade and of course all of Laney's therapy and doctor appointments. I will be busy but I am confident I can handle it...hope Ricky's up to the challenge of me being a zombie...LOL.

Laney goes back to see her eye doctor tomorrow. Ricky took the day off to go with me this time since he has never met this doctor (he has at least made an appearance at all appts so far except this one). I am a little worried because her eye seems a little worse and the other is turning in alot now as well. I don't know what all this means but I am anxious to see what he recommends. I am not sure if I will get a second opinion right away because Laney goes to the Down syndrome clinic in November for evaluation by all specialist (they are all at one place and it takes the whole day almost...so I am told) and I may just wait until then. I guess we will decide once we here what Dr. Eyeballs has to say about it tomorrow. (Side note...I am giving all her doctors nicknames because it will be much simpler to blog about it that way and of course I don't want to use their real names without permission).

She is trying really hard now to walk. She will take steps but only holding on to your fingers or cruising. She is too scared to let go yet. I am hoping she will be able to take a couple steps at the Buddy Walk this October. Just a few steps is all I ask...

We got the report today from her developmental evaluation last week. It shows she is having some mild to significant delays but as I understand from the lady that came out, some things are dependant upon others and if she can't do something just yet, then she can't do the things that come after it. Once she learns to do certain things, her scores will come up because she will be able to do more. I know that makes no sense but it is the simplest way to explain it. For example, if she can't walk yet then of course she can't run so she doesn't get those points and it counts towards her delay. They said she is really high functioning it appears and they think she is doing really well. I struggle with these test because they are so conforming. Of course no toddler is going to perform on command...they never do. I just try to keep that in mind when I get results.

Logan is getting closer to his 6th birthday and starting 1st grade. I am more upset about him starting 1st grade than I was him starting kindergarten. Strange huh. I told Ricky earlier today I just might cry when he starts this year because now it is "for real". He gets letter grades instead of just and "S", "N", or "I". He only ever got "S" of course but you know what I mean. Now he has to start reading books to take test on them, not just for the pleasure of it. All big changes coming this way; let's hope I am ready for them.

Thursday, July 23, 2009

Loganism

I was browsing through some new blogs I found last night (while Laney was napping) and Logan came in here...this is the conversation that followed...

Logan: "Moma, who is that little kid?"
Me: "Just a little boy on a blog I found. He has Down syndrome like Laney."
Logan: "Like in that book we read?"
Me: "Yes, like that ."
Logan: "He kinda looks like Ben." (ben is the boy in the book we read.) "What is Down syndrome again?"
Me:"Down syndrome means that they have an extra chromosome."
Logan: "What's a chromosome?"
Me: "It's what makes us who we are."

Anyone out there reading this have any suggestions on how to explain to my very inquisitive almost 6 yr old son what a genetic disorder is? We have read books about Ds but he ask more difficult questions...aka...the chromosome question. How do I explain something I didn't learn about until high school to my 1st grader?

My Life

Logan's Tball trophy...He is so proud

She was sick the day of his trophy get together...can't you tell

batter up...at his last game

this is just too cute!

she found herself in the mirror...she was kissing herself

Tuesday, July 21, 2009

Summary

I know it has been a few days since my last post. We have been busy. This past weekend we went to Atlanta to see some baseball games. It was really nice and we all had fun. We got to see Greg Maddux's number retired and some fireworks after the game and then on Saturday, we toured the CNN center and got an autograph from their rookie pitcher. The kids enjoyed it as well. I will post some pictures as soon as I upload them from my camera.

Yesterday, Laney had a developmental evaluation and a visit with her caseworker. They tested her cognitive development and her language skills. Per the test they used, she is at a 13 mth age equivalent for her cognitive abilities and at a 11 mth age equivalent for her language abilities. Last week at therapy, they tested her using the Peabody test and she is averaging 11 mth for Physical Therapy and 14 mth for her visual motor skills and 7 mth for her grasp. She is doing really well overall and it is hard to hear these numbers from these test because she is a toddler...she has a mind of her own. Some things we know she can do the correct way but she is stubborn and won't do it when they want her to so that affects her scores sometimes.

Logan has decided he doesn't want to play soccer this Fall but he wants to play golf. What a strange kid he is...LOL. I can't believe it is almost his birthday and he will be 6 yrs old and starting 1st grade. He is growing way too fast.

Thursday, July 9, 2009

Memory

Well, I am such a nerd!!! I was so excited about making the cupcakes in ice cream cones that when I finished I totally forgot to take a photo. I am so mad at myself. They were so pretty. I made them red, white, and blue since it was July 4th and everyone seemed to like them especially the kids.

That night after the birthday party cookout and swimming, we took the kids to see some fireworks. We were so close to were they were shooting them from that we kept feeling the ash fall on us. The kids were tired but they made it through and after it was over, Laney passed out. She liked them until the finale when it was really loud. Before they started, they had bands playing and they even did a small re-enactment of the battle of Kings Mountain. It was awesome! They even had the canons there and let me tell you...LOUD!!! They fired off their muskets too. I have never seen a re-enactment before and now I really want to see a full on one done maybe at Gettysburg or somewhere like that...you know, one of the big battles back then. (If you can't tell, we like history here)

I took a few pics that night but haven't uploaded them yet. I will try to do that soon. Logan has had a tball game every night this week and we have one tonight as well. None tomorrow but we do have one really early Saturday morning and that is the last one. Tuesday they will get their trophies when we all meet at Dairy Queen. He is really getting the hang of this ball thing now though and he also says he doesn't want to play soccer this Fall but he wants to play golf. We shall see. Currently he is pretending to be a Ghostbuster and we all have to pretend to be different people from the movie...thanks Ricky for playing the video game and letting him find out about that...haha.

Laney is doing really well. She is walking while holding on to your hands now and when she is tired she will sometimes turn around and look at you and say "UP". It is so cute.

Last, I want to share with you some funny things Logan has been doing lately. Last night at the tball game, we switched dugouts from the one we normally use and after he finished running the bases, he started to the wrong dugout. We all started yelling at him to come to our side and he looked right at me and held up his thumb and first finger to make the "looser" symbol. We all died laughing and we asked him what that meant and he said "winners, duh". Too funny. Also, last night when Ricky was leaving to go back to work, he gave me a kiss and Logan jumps up and says "alright, enough with the kissy kissy". Don't know where he heard that from but it was hilarious. He says some of the funniest things. This weekend they are going to "Grammy's" house and I told him that last night when he was going to bed. He responded with...

Logan: "Am I spending the night?"
Me: "Yes"
Logan: "Do I have to behave?"
Me: "Yes"

I then shut the door and busted out laughing.

Friday, July 3, 2009

Wonder

Well, this is me of course...lol

Logan playing outside

Laney...she wanted me to pick her up

they play so well together

see...he is a great big brother

this is mostly how Laney spent her time at the yard sale fundraiser

family photo at yardsale fundraiser

Logan taking a break at the sale and wearing Laney's sunglasses

me and Laney at the yard sale
Just wanted to share a few pics with you since I am finally getting around to uploading them on the computer.
The kids are both doing well and loving going swimming everyday. Laney is being devoured by mosquitos even though I am spraying her with repellant. So sad and I know they itch but we are trying all sorts of things to find something to help. Any ideas, email me or post a comment. Logan is learning how to tell jokes now...they are really cute too.
Tomorrow is July 4th and we are having a cookout/birthday party for my FIL whose birthday is this coming Wednesday. Busy day. I have made a cake I saw in a book. They are supposed to be Liberty Torches but I am changing it up a bit and just making them with red, white and blue icing and putting tiny flags on top. I will post pics after I get them finished. I will just say so far too cute...they are baked in ice cream cones. Can't wait to share them with you.