Jack has always been social -- no news there, right? Do you believe he's getting even MORE social? Our little man LOVES to go out to eat. I think restaurants are his favorite thing in the world right now, (right next to swimming and swinging of course). He's such a good baby when we're out even though he LOVES commanding attention at the dinner table by 'talking' over everyone else...almost to say "HEY -- DONTCHA WANNA HEAR WHAT I HAVE TO SAY??" too cute! We always have such a good time! Jack's been eating mostly table food these days -- I am amazed at how he loves to eat. He loves to feed himself and make a mess for mommy and daddy! The dog has learned to sit by Jack because eventually there'll be something yummy heading to the floor! Jack now says DA-DA -- but we're not exactly sure if he's talking directly to Jason, because everything is DA-DA...Jack where's the puppy? DA-DA-DA, Jack's where's mommy? DA-DA, Jack, where's daddy? DA-DA!! Ha ha ha...he's such a great little guy! I have updated the Favorites part of the webpage -- check out all of Jack's new favorites!

Bright and early tomorrow morning Jack has an appointment at the CP Clinic at the medical center. We see an orthopaedic surgeon for an evaluation and will probably speak to a case manager to discuss Jack's involvement in the program. Wish us luck -- I will update when we get home. Hope everyone's having a great week so far!

We had Jack’s neurology appointment this morning…

The neurologist was a very nice and gentle man – he was very willing to answer all of our questions…Jack liked him instantly and decided he was going to jabber his entire life story to the doc! It was too cute!!!

Seizures: At this point since Jack’s only had one episode, and it was mild – he does not want to put him on medication. Since Jack is showing abnormal readings from his EEG this puts him in a higher risk category for future seizures. The doctor said since Jack’s first seizure was mild this is an indication that future seizures would most likely be mild as well. If he has more seizures it’s likely he’ll prescribe anti-seizure medicine. We are to report any episodes to him.

CP: There are many different types of CP. It is diagnosed and named for the affected muscles. He diagnosed Jack with Spastic Monoplegia Cerebral Palsy…basically meaning abnormally tight muscle tone affecting one limb. In Jack’s case it is his right arm. The neurologist does not notice a significant difference in Jack’s legs – which we are monitoring. If it is eventually obvious that Jack is using his entire left side (arm & leg) better than his right side the diagnosis would be Spastic Hemiplegia CP. At this point this is not the case. To read more on CP and the different types, copy and paste the following link:

http://www.ofcp.on.ca/guide.html#06

There are several different management options we will explore. Currently we are involved in the most important – THERAPY!! We’ve been lucky to have been receiving services for over a year now. This has helped Jack so much! We will see an Orthopedic Doctor to discuss further management options like braces, Botox injections or even surgery. Since Jack is so young at this time, he will probably do well with braces. I think botox and surgery are for older children.

We see the neurologist again in 4 months.

All in all the appointment was very informative and given such daunting circumstances we feel very lucky both the seizures and the CP are mild. Jack continues to amaze me every day – there is no limit to what he can do!! Thanks to all of you for thinking of us and being there during the last few weeks. Please don’t hesitate to ask any questions. Jack is sacked and sleeping since he decided to stay up most of the night last night – and then decided he wanted breakfast at 4:45 this morning!?!? He’s been awake ever since…so he’s taking a much needed rest and I should too!

We took a mini last minute vacation to visit he beach this weekend and boy did our little family need that. For two days there was no appointments, runaround or phone calls. We got to be a 'normal' family doing a 'normal' summer activity...Jack enjoyed himself so much -- it was exactly what we needed!! We had a wonderful time!! I just added a vacation album to the photos section!

They called and told us we have a NEUROLOGY appointment Tuesday, 7/13 to discuss the EEG results...soooooo after all of that drama it's FINALLY settled! Thank goodness.

JACK WAS DISCHARGED FROM THE NICU FOLLOW UP CLINIC!!!!! His neonatologist feels Jack is doing well enough and is involved in all the appropriate programs that he no longer wants to see him!!

It was a relatively uneventful appointment -- we didn't really learn anything we weren't already aware of and working on. Jack will still be followed by his opthamologist, neurosurgeon, neurologist and Early Intervention.

It's sad in a way because we became close to the NICU staff and it's bittersweet that we've outgrown them. He asked that we stop in to visit so he can see Jack every once in a while.

I guess my guy is growing up!!

EEG/Seizure update...Ahh, finally I spoke to someone willing to give me peace of mind (for now anyway) they DO NOT want to wait until August. They are in the process of scheduling an appointment ASAP. This is good news. The sooner we see a neurologist the sooner we'll know what we're dealing with. They are going to let me know by the end of the week. Thanks to my family and friends for listening to me the last few weeks. I honestly don't know what I'd do without all of you. THANKS!

Well I am no further with any more knowledge than yesterday. I am so frustrated right now!! The EEG office (neurophysiology) says since Jack's never been seen by the actual neurology department they are NOT ALLOWED to release information to me. They said I should talk to his ped's office as the ball is in their court right now as far as getting him in sooner than August for a neuro appointment. AARRRGGGHHH!! Time for the next round of phone calls! Tomorrow is another day!!! Jack is fine -- no seizure activity since that very first time several weeks ago. He's been fine ever since which is why I think the abnormal results were such a shock! On a much lighter note, Jack has become quite the little swimmer! He loooves the water so much. He has a small innertube and when he's in it he swims across the pool all on his own (with mommy inches away of course). He cries when it's time to get out of the pool. I need to remember to bring my camera so I can get some pictures posted of our little fishy! Thanks for your thoughts the past few weeks -- they mean a lot!

Well our results are back and it's not good. Jack is showing seizure activity...the nurse at his ped's office didn't say much and the office where he got the EEG is closed for the evening. She said we'll more than likely see a neuro sooner than August. I am shocked. I didn't think it would be abnormal. I don't know why but it was just a feeling I had. And to think I had to FIGHT for him to have the test in the first place!!!!! I asked the nurse if Jack was in any danger and she said no, but if he were to have a seizure to take him to the medical center. Please, please keep us in your thoughts.

Thank you all very much for your support. I am sitting by the phone this morning waiting on a return call from the Neurophysiology department...hopefully they will be able to explain the results much better than the nurse from our ped's office.

I have a book that has an entire chapter related to seizures. From what I read it sounds like medication can definitely control seizures, change in diet or no intervention at all. I have my ever ready list of questions -- hopefully they will call back soon.

Jack had his EEG today and well, we won't know the results for a WEEK!! and the technician wouldn't tell me if she noticed anything 'odd' so we're in for one of those nail biting weeks.

Jack HATED the test -- it was painless but he hates being held down -- which I had to be the meanie to hold him tight to the table :( Although I wouldn't have wanted anyone else doing it -- I feel like he hated me because I was doing this 'awful' thing to him! The glue they used smelled like gasoline! They put many little probes all over his head, neck and chest...it lasted about 30 minutes and then they 'oiled' up his head to remove the probes. He screamed the entire time :( I felt so sorry for him! He's usually such an easy going kiddo!

I am hoping for good results -- please keep us in your thoughts this week. I must run, the man NEEDS a BATH!!!! Will post another update soon!

Hello! We had a very special day recently...we just celebrated ONE YEAR since Jack's NICU discharge. He came home May 28th, 2003. It's so amazing how much Jack has grown since then! We're very proud of our little man. Jack was evaluated for vision therapy last week. The vision team was very helpful -- they spent about two and a half hours with Jack and feel he's doing EXCELLENT!! They said his CVI is very mild and he's using his vision VERY well. They were totally impressed by Jack's ability to locate and pick up tiny pieces of white rice off of his white high chair tray. They plan on working with him once a month to improve his vision on his right side. All in all it was a productive meeting. About a week and a half ago I was feeding Jack in his high chair when he started acting 'funny' and scared me a little. I thought he may have been having a shunt malfunction so I called Hershey and they said it could have been a small seizure and felt it was NOT a problem with his shunt. They did not feel he needed emergency care...just a trip to the pediatrician. His pediatrician ordered an EEG scheduled for June 15th. We pray it shows normal results. He's been perfectly fine ever since and pray it continues that way! We're enjoying a nice long holiday weekend -- I hope everyone else is as well!

How's everyone enjoying this summer-like weather? I can't believe how warm it's been. This morning we went for a nice walk lathered in sunscreen and adorned with hats and sunglasses -- you would have thought we were in the witness protection program -- ha ha. It sure beats the cold winter weather, so I am not complaining!

Jack has an evaluation for vision therapy in about two weeks. His Early Intervention coordinator called to set up the appointment and started reading from Jack's Ophthalmologist report. I was extremely upset to learn Jack was diagnosed with CVI (Cortical Visual Impairment). His ophthalmologist said NOTHING about it at Jack's appointment in April. I called Jack's pediatrician and had them make a copy of the report from the ophthalmologist. I let my mom watch Jack while I ran to pick it up. There it was in print...lots of big huge words, several paragraphs, then the Impression Statement: Optic Nerve Atrophy, possible field cut to the right secondary to his brain injury, Cortical Visual Impairment. Cortical Visual Impairment basically means that his eyes are fine. The problem lies in his brain. In plain English, his eyes for the most part can see but his Visual Cortex (a part in his brain that affects sight) may not fully register in his brain what he sees. This is a condition that can be temporary; vision can come and go as it is related more to brain processing rather than the eyes. We really don't know what this means for Jack. The only thing we were told about how he processes vision, is we'll know when he can read the eye chart (uuuugh, I know, it's more 'wait and see'). What we do know is that he CAN see. Right now Jack is using his vision well. I hope to learn more from the vision therapist. I called the Medical Center and requested copies of his entire hospital stay plus visits to specialists. Who knows what else doctors may have not told us! Jack is amazing and getting diagnosed with something does not change the perfect little man that he is, but it is important that we know all there is to know. It may open up new avenues of treatment or therapy. Please keep Jack in your thoughts and let's hope he continues to do well with his vision. Please let me know if you have any questions. You can e-mail me at ang_wilhelm@verizon.net

I know several of you are having problems with the video feature of Jack's new website. I have e-mailed the owners of babababies.com and hope to get an answer SOON! Being able to easily share video with everyone was a huge factor in why we chose to do business with bababaies! I will keep everyone posted on the status of playing videos. I will be adding some more pictures in the next few days! Thanks for reading.

Jack had his very first playdate this week! He had so much fun with the two other babies! This was Jack's first road trip. He did very well for the 1.5 hour drive...He loves his new friends! This was a special trip for me as well. I grew up with the other moms and this is the first time we were all together with our children. It was a very special day!

We also celebrated Jack's daddy's birthday this week with a nice party at Grandpa Bob's. Jack had a great time! He had his second taste of birthday cake and loved it as much as the first!!

Poor Jack is teething pretty bad at the moment...he's got teeth coming in every which way! At least he'll get a lot of them at once...poor guy.

Forgot to mention...for the longest time Jack's only had his two bottom (center) teeth...he's finally got another one for a total of three on the bottom...I can see at least three more top/bottom ones coming in!

Well, Jack is doing very well! He's such a sweet baby. He's learned how to give kisses...although it kind of looks like he's about to bite off your nose! ha ha. It's too sweet! He's even started giving them without being asked...melts my heart! He's also into giving 5's and waving bye bye. He's vocalizing and jabbering all day -- he's going to be quite the motormouth!

We've been able to venture out! HOW EXCITING!!! We've gone to the grocery store and for some reason this has become Jack's favorite place...he checks everything out and shrieks with delight at the produce...he also starts kicking his legs and squealing when we pass another shopper...after they've gone by he crams his neck to see where they went, almost like he's wondering why in the world we didn't talk to that person. Ahhh, the simple things. We went out to breakfast this past weekend and Jack was such a good boy! He had a good view of the waitress station and was fascinated by the clanging plates and commotion. We purchased something called the Floppy Seat Cover...it's the BEST invention ever. It's a big soft cushy cover with leg holes and a seat belt. It covers shopping carts and restaurant high chairs making them comfy and germ free for Jack. When it's not in use it folds up into a carry bag. I recommend this to all parents of babies and toddlers!

Jack's therapy is going very well. He gets OT (occupational therapy), PT (physical therapy) and we are in the process of adding ST (speech therapy) and VT (vision therapy). He's wearing something called a "Joe Cool Splint" for a few hours during the day to help with coordination of his right hand. It really seems to be working. It's a soft rubbery bracelet with a loop for his thumb. His OT suggested it and we've been using it for about a month.

Jack recently had an eye exam this month. He does not need glasses at this time!! We're happy to not have to deal with that yet...we were told Jack has something called a field cut in his visual field. He has no peripheral vision on the right side. He's already compensating for it by turning his eyes and his head. The doctor feels this is why he's not using his right hand as much as the left...it's mostly out of his field of vision. The eye doctor said this is something (at least in infants) that he's seen improve and even go away over time. This is why we've decided to get a vision therapist on board. Over all Jack is doing well. We have a few big appointments coming up in the next few weeks...we'll keep you updated. Thanks for checking out the new site!

Hello everyone! Welcome to Jack's new website! Please add this page to your favorites...the old web address will be discontinued some time in May.

We're very excited to be working with lots of new features. Take a look around -- you'll discover lots of new things.

There are lots of new pictures in the Photos section, be sure to check all of the albums!

Brand new to the site is VIDEO! They may take a few minutes to load on your computer, but once they load you won't have to wait next time you open that video.

The journal contains all of the entries from the old website...unfortunately the guestbook does not, so we need some new entries!

The milestones and favorites are built in to the website by the owners of babababy.com so we're filling in the information!

Enjoy and don't hesitate to e-mail us with any questions!

Well, Jack sure did ENJOY his first birthday party! His great-grandparents, grandparents and uncles came to celebrate. We had lots of food, cake and presents. What a great day! Jack even had his very first taste of yummy cake! I think that was his favorite part J

Jack recently got his very first haircut by his Aunt Tribby! He’s such a dapper little man now. Click HERE to see lots of new pictures!!

We’re taking advantage of the beautiful weather and heading out for a nice long walk. Thanks for checking in on Jack’s site!

HAPPY FIRST BIRTHDAY

HAPPY FIRST BIRTHDAY

JACK RILEY!

WOW! Jack’s first birthday, can you believe it?? We sure are celebrating today! We’re having a small party on Sunday with Jack’s grandparents – we’ll be sure to take plenty of pictures!

Thanks to all of you for being such a tremendous support system this past year. We are truly blessed!

We are soon going to ‘unveil’ the new look of Jack’s website! Lots of new exciting things to add!! So stay tuned!!

Happy New Year everyone!

We’ve added lots of new pictures, and something new in the reflections portion as well. We were overdue for some work on the website….

Jack’s got lots of new things to share!

· He’s almost 18 lbs!

· He’s got his first tooth, and three more on the way out!

· He’s sitting and standing - holding on to something or someone!

· He’s moved on to stage 2 baby food…more variety and more texture…yummy!

· He’s off of his special preemie formula!!

We are just so proud of our little guy! He’s growing and changing so much – can you believe he’ll be a YEAR OLD in just over a month?? We can’t!!

We’re still under ‘house arrest’ until April due to RSV, cold and flu season…but we find lots of fun things to keep us busy! You won’t be able to find us at home this Spring!!!

Jack recently had a CAT scan to check on his hydrocephalus and shunt – and it all looks great! His neurosurgeon only wants to see him back in 6 months!!! BIG news!

THANK YOU to everyone for donating money towards the Rocking Chair Gift For Jack’s NICU! We now have exactly enough to purchase the chair! We plan on giving the gift some time in March or April (so Jack can come along to present it). We’ll be sure to take lots of pictures! Thanks again.

I will most likely be putting together another team for the March of Dimes Walk America this year. Jack will be able to participate too! Please e-mail me if you’re interested in joining our team! ang_wilhelm@verizon.net

Wow – time is just flying by!! We hope everyone had a wonderful Thanksgiving…I know we sure did! Jack is doing very well these days. He started eating solids…what a sight! He HATES carrots, loves sweet potatoes, and doesn’t mind squash or peas. Soon we’ll move on to the good stuff! Yummy fruit!

Jack had a check up at Hershey with his neonatologist. He was his doctor during the roughest part of Jack’s NICU stay -- A time when we honestly did not know if Jack would pull through. Needless to say he was extremely impressed at how well Jack is doing now! Jack was hamming it up too – laughing and smiling and pulling on the doctor’s stethoscope. It was too cute! He will see him again in 6 months. The doctor discontinued Jack’s apnea monitor! They came to pick it up yesterday. Last night was our very first night without the monitor. Of course Jack did a-ok but we didn’t sleep very well!

Jack is now over 16 and a half pounds and 27 inches long. He’s a mighty big boy! Growing and growing and growing! It’s amazing to look back at his first tiny little diaper or his tiny preemie clothing. Hard to believe he was EVER that small.

Hi everyone!

We can’t believe how much Jack is growing and changing! He’s doing very well all around. He’s somewhere around 16 pounds and 27 inches now – we’ll know for sure when we go to the pediatrician for a check up and another RSV shot this Thursday. We know he’s getting bigger because his clothing keeps getting smaller and smaller! Can you believe he’s wearing size 12 months now?!?!?

He’s definitely teething…the poor guy is drooling and biting on anything and everything he can get his hands and mouth on. He’s even waking more at night and not eating too well the last few days. We hope those little teeth come in soon so he can get a break!

His physical therapy is going well. He can sit for almost 30 seconds all on his own! He also just started holding himself up on straight arms and knees. He knows he wants to get somewhere so he launches himself forward and crash lands on his little nose…then laughs and does it again!

He’s ‘talking’ much more as well. He says ooohDA….ohhhBA and lots of mmms and ooohs and ahhhs. He’ll look at you and concentrate really hard and just start telling you whatever is on his mind. He’s such a happy baby, very pleasant and a fan of the ladies as well!

Jack started occupational therapy last week. She said Jack is doing a great job eating and she doesn’t see any problems with is ability to take the bottle or eat from a spoon. She’ll continue to work with him twice a month as we introduce new foods and textures. She’ll also observe and track the development of his fine motor skills – like picking up, holding and manipulating toys and other objects.

We’re getting excited for the holiday season - can’t believe it’s already that time again! This will be a fun time full of a lot of firsts for Jack. We think he’ll just love looking at the Christmas tree and all of the lights and shiny ornaments! Oh, and all the presents too!

Thanks to all of you who keep reading this website! We hope everyone is doing well. Can’t wait until spring so Jack can come visit you!

HAPPY HALLOWEEN!!

Jack is doing very well. He is now 15 pounds! We can hardly believe how BIG he is now! He’s almost 8 months old. He’s continuing to eat very well and loves his oat cereal!! We think he may be teething as well – lots of drooling and chewing on his hands and fingers.

Jack had his first of seven RSV shots – it went well except his legs were very sore for a few days! We remain indoors now avoiding shopping centers, grocery stores and crowds. We did however get out of the house a little bit yesterday! Jack went to visit his great grandma Olga and his great grandpa Chuss. Everyone had a wonderful time. Jack was laughing and smiling at them!

The next few weeks are pretty much appointment free with the exception of his physical and occupational therapy. December is a busy month for Jack. He’ll see his neurosurgeon, his neonatologist and his pediatrician. Jack is also scheduled for a baseline CT scan. We are not sure what the procedure involves – we’ll get more information when we get the letter in the mail. We do know they want to do them every so often to make sure his shunt is continuing to work well.

Thanks to everyone for your donations towards the Rocking Chair for Jack’s NICU!! We will probably have the chair ready to be delivered to the NICU by Jack’s first birthday in March. We will keep you updated!

Good morning! Hope it’s not too windy out there for everyone!

Jack is really doing well! He’s changing and growing so much – he’s becoming such a big boy!!

Jack was discharged from his eye doctor!!! No more terrible eye exams (for those of you who aren’t familiar with the eye exams they do on preemies it’s a horrible exam for those little ones to go through – we’ll spare you the details). The eye doctor says his preemie condition called ROP is all cleared up! Jack still has optic nerve damage, but that has been stable ever since they first discovered it. Jack’s eye doctor was optimistic about Jack’s prognosis. The doctor is pleased that Jack is right on track visually for his age - tracking objects, following people from across the room, etc. Jack will have a regular eye exam in 6 months to tell if he’s near or far sighted. Chances are since both of his parents wear glasses, Jack will need them some day as well.

Jack is eating very well and continues to enjoy his cereal…he tried to have a drink of water with a sippy cup but it was too difficult for him – we’ll have to find a different cup that makes it a bit easier! He’s taking 5-6 ounces of formula now! Such a big guy!

We had a quarterly review with early intervention last week. His physical therapist said she’s very impressed with how far Jack has come since he first started therapy. She says he’s doing things at about a 5-6 month age level – which is advanced for him because he’s only expected to do things on a 4 month age level right now. As time goes by Jack will close the gap between his real age and his adjusted age. Doctors say this usually happens by the time they are 2 to 3 years old. Jack was approved to start occupational therapy twice a month in home (just like his physical therapy). We are happy because this will help Jack learn so many new things.