E-Eye, E-Eye, Oh!

Well, we're up to patching Jack's right eye 8 hours a day...which is okay, but it means he'll have to wear it to school. I guess it'll be better now that he's more adjusted and the other kids probably won't pick on him...if anything they'll think it's cool!

The good news is, he's not totally convinced Jack has a visual field cut. Since he is new to Jack's case (our other PO left July 2005) he didn't see Jack when he visually neglected things on the right. Now Jack doesn't miss anything. The Dr. mentioned a new type of VEP testing done with electrodes that is in trial at the hospital. He said it should be available in 6 to 8 months and Jack would be a good candidate for this type of testing. He said it's hard (as we all know) to determine functional vision in pre-verbal children. While Jack detects things and is very accurate we still don't know how he processes higher level things and part of that will come with time. I think his hand eye coordination is amazing (for having CVI AND CP) and doesn't look too much different than his peers (other than he only uses one hand, but vision wise I mean). So it's very promising that the Dr. isn't ready to say he has a permanant field cut!!!!!!!

He gave us a prescription for sunglasses for Jack so he can have his indoor glasses and his outdoor glasses too! I asked about transition lenses and he said he doesn't think they'll be dark enough to make Jack comfortable outside. Do any of your children wear transition lenses?

He still has not ruled out surgery to correct the lazy eye/neglect/eyes turning in...so we see him back in 5 weeks for another look.

While we were at the UPC, I took Jack for bloodwork to check his medication levels...he wasn't too happy about that but they are sooooo good there it was over and done in a flash! He even got a cookie monster sticker and everything!


Just wanted to update everyone! Thanks for reading...

Fatty McButterpants

Ever since Jack's three year check up and the weight loss we've been boosting calories like crazy this past week. Last Sunday Jack weighed 24.4 lbs and a week later Jack weighs 25.4 lbs! THAT'S AN ENTIRE POUND THIS WEEK! It's a BIG DEAL! We are very happy! Let's hope it continues!!!!

No More Tears...

Guess who was tear free this afternoon at school?

The stroller did the trick. I parted ways with Jack in the lobby and his teacher ushered him along with the rest of the students.

Keep up the great work Jack! We love you and are so proud of you!!!

Oh, and Jack wanted me to remind you to...

A Little Overwhelmed...

On Friday Jack had his 3 year check up at the pediatrician. This was supposed to be a WELL visit and it turns out Jack had a double ear infection. He was prescribed Amoxicillan...poor guy!

He lost a pound and is down to 24.5 lbs...and to think we were ALMOST at 26 lbs! He's fallen off the charts again. The ped asked if the feeding team has ever mentioned a feeding tube. My heart sank. They have never mentioned a feeding tube and I think at this stage Jack takes soooo much orally that I'd be hesitent to get one. We see the feeding clinic at the end of April...and I hope to get him on higher calorie formula called Resource and see a better gain.

The great news is, he IS growing...he's 37.5 inches at that's 50 PERCENT!!!!! He's never been that high on the charts ever!!! WOO HOO!!! He's my tall, lean, string bean!

She did write us a prescription for diapers. In PA if your child is disabled and is over three years old, medical assistance will pay for diapers. That will help so much because we're no where near ready for potty training.

One thing that sort of ticked me off is I brought the form for disabled parking permission and she gave me some trouble with it. She said his neurologist or developmental ped should fill it out. It just needed one check mark and a signature. I know she probably thinks we don't "deserve" disabled parking, but it sure would come in handy when I am by myself. Or think, Jack's on the verge of walking solo with his walker and HE will need disabled parking!

Jack is having a difficult time when I drop him off at school. He cries (a heartwrenching-tear-my-heart-out cry), and it's chaotic with all the kids running around and yelling and crying and then they go right into a loud song time. i think it's too much for Jack to handle at this point. I think he's overwhelmed, overstimmed, and sad that mommy left too. The next activity is book time and Jack usually settles down by that point.

His teacher came out to talk to me today right before class was over and she asked if I thought it would be a good idea to bring Jack to school 15 minutes later than everyone else. My gut reaction was I do not want to do this! I told her I was thinking of putting Jack in his stroller (they use an umbrella stroller with Jack various times during the day) and seeing if that wouldn't make him feel better and more secure than being handed over to strange people. I said I would like to try that first before we start skipping the first part of class.

I guess I just don't want Jack to miss any part of school. He's fine after he's there a little and loves the other kids, loves the shrieking and yelling and even the other songs they sing throughout the afternoon.

I think I'd like to try and see if it won't get better before I start bringing him in later. I also wondered if it was possible for someone to take him into the smaller classroom while everyone's getting settled.

I love the school and the teachers, and I know she was concerned for Jack...it's not like she was saying "hey, we don't want to deal with your crying kid, so bring him in later" or anything!

I think Jack will come around eventually. I also don't mean to be a mean mommy but I don't think it's hurting him letting him cry for a little...you know? I don't want to run and make accomidations for everything he's not used to or we'll end up creating a little monster! LOL!

I hope he can get adjusted soon! I will keep you posted.

Jack's First Day of School!

Jack had his very first day of school yesterday!!

We got there a little early and sat with a few other moms and kids until it was time to go back to the class room. We found Jack's little cubby and hung his coat and bookbag. There's a little Teddy bear with Jack's name on it hanging in his cubby and his is closest to the class room door.

Miss C. took Jack and said "Okay Jack say bye-bye to Mommy" and they headed into the class room. I was able to see through a small window (the kids can't see out, but we can see in). They all sat in a circle and Miss C. said "We have a new student today, his name is Jack" and some of the kids said "HI JAAAAACK!!!!" and then she got out an Elmo doll and said, "And today is Elmo's first day of school too." I thought that was so cute! I guess Jack didn't feel so scared because it was Elmo's first day too! They started with a song (and Jack CRIED) and then they read a book (and Jack CRIED). They then went on to choose an individual play time activity...Jack chose blocks (and CRIED)...after a few moments Jack got busy and stopped crying and I was able to talk to the other teacher Miss L., the physical therapist, and the speech therapist. Then I left to go home. The house felt so empty without him here!!

When I went back to pick him up they were all out on the playground. I went inside and waited with the other moms and dads and watched through the window as they sang their good bye song. Jack looked so happy! His teacher brought him out and said Jack had a very good day. He played with toys and had a lot of fun. His teacher said he had a choice of pudding or applesauce for snack and he ate BOTH LOL!!!!! And had some water in a little dixie cup. He even painted his first painting ever! He painted brown mud on a little paper pig.



There were about 14 kids between the two classes. The kids and teachers go back and forth between the two rooms and their are about 4 aids that help out with the kids too. There were children with all different abilities. I would say Jack was somewhere in the middle. It was so awesome to see him among his peers.

As we were getting ready to leave a little girl was heading toward her mom and she said "Mom, I made a new friend today" and the mom asked what her new friend's name was...the little girl said "His name was JACK!" So Jack made his first little friend already.

I am excited to see how he does today when I drop him off. I hope he's as excited as I am! I will let you know...

OH NO!!!!

Last night Jack was acting kind of tired and when I was getting his jammies on I noticed he felt really HOT. I took his temp and it was 102.5!! I gave him a dose of Motrin right away and he went to sleep finally around 10 pm...he was up an hour later and I rocked him until 12 am. This morning he woke up at 4 am with a fever of 102.6. The poor guy is supposed to start school today. We've been up since 4 am and he slept from 7-7:30 am.

On Friday I had a horrible fever and chills and stomach issues. I really think he caught whatever I had. I was totally down for the count. By the next afternoon I was feeling much better. But now this morning I've had terrible stomach issues again -- all morning!

So far Jack just has the fever, no runny diapers or vomiting or cold symptoms. I know he can't go to school today (he was supposed to start at 12:45 pm) and I am so dissapointed that he'll miss his first day. I am not running him to the ped quite yet, only because I am hoping his fever is gone this afternoon (like mine was). If not, I will take him in to be seen. He's so sad and grumpy right now, and I know how badly he's feeling since I could not get off the couch on Friday.

Please send +++ thoughts our way that he gets well and can go be a big boy (a healthy big boy) at school tomorrow or at least this week sometime.

I will keep you all posted. I must go and call the school.

HAPPY THIRD BIRTHDAY JACK RILEY!

Happy Birthday to my sweet boy!!!!

Three years old today! Wow, I can hardly believe it! We love you little man!!!!

Be sure to wish Jack good luck tomorrow -- he has his first day of SCHOOL!!!!