Hello! Jack's 18 month check up went very well. His pediatrician is happy with Jack's growth and development...one task we must work on is weaning Jack from his bottle! It seemed like it would be impossible because Jack refuses to drink much of anything from a sippy cup -- but we've made progress this week. My goal is to have him off the bottle in two weeks so when his occupational therapist comes back from vacation we have a HUGE surprise for her! Wish us luck, and please if anyone has any tips send them our way! Jack had his hearing tested last week -- he passed with a perfect score! He was such a good boy and cooperated very well for the test. We finally started speech therapy 3 weeks ago and so far Jack likes it. We have a lot of excellent therapists and we're very grateful for their help. As part of speech therapy we are starting to teach Jack simple sign language for babies. It's not clicking yet and Jack just thinks we're silly but eventually when he catches on it will help ease his frustration when it comes to communication. The theory is it will allow him to ask for things and communicate with us and by easing the frustration and boost his pride and words will come sooner. So far we've been working on: eat, hungry, drink, more, want, all done, daddy, mommy, puppy, kitty. I will let you know how it's going and of course when Jack makes his first sign! We had a great time at the beach -- I will post some pictures today! Unfortunately -- Jack had a cold for our trip -- it started a few days before we left. We spent a lot of time relaxing and going for walks on the beach -- we all loved it! He's feeling much better now.

He can belly crawl much faster but still tires out very quickly...and he needs constant enticement, begging, pleading, and PRAISE! He can hold the following positions if I physically place him there: hand and knee position, sitting (very well now), Standing while holding on to the couch, kneeling at the couch. He just has to work on moving on his own!!! He can't yet transition to any of these positions or get himself in these positions. We can get him to pull up from kneeling to standing but it doesn't come automatically...we are working VERY hard!

He can feed himself cheese curls, crackers and cookies as well as diced table foods. He used to be a big stuffer/shover but now he takes his time and takes perfect little bites.

He's teething like mad -- has some huge bumps towards the back of his mouth (molars?? eye teeth??) and he's not sleeping as well. We are approaching RSV and FLU season again and will need to be careful not to expose Jack to anyone that's sick. We aren't under 'house arrest' this year, we can go out but we'll have to pick less busy/crowded times to do our shopping or dining out. So we ask if you are sick or if anyone in your household is sick to please let us know before visiting with Jack. I think that's about it! As always he's my perfect little man -- playful and silly and quite cute (although I am a little biased!)

Hello everyone! We've been having such a fun summer. We've done play dates, a tumblebees class, swimming, picnics, cookouts, family reunions, the beach, long Sunday drives, and even a trip to Chocolate World. Jack's doing very well on his new medicine for seizures -- it made him sleepy the first few weeks but now he's back to his usual schedule. He's trying new foods every day -- most recently a veggie burger! Lots of good stuff packed in those. He's getting more teeth too. Right now he's got 4 on the bottom and 3 and 1/2 (ha ha) on the top and many more on the way. This is causing him to be a little cranky and wake at night, so hopefully they'll come through soon. The new format of this website doesn't allow paragraph breaks in the journal area -- so forgive me if it seems to ramble! Jack is getting physical therapy, occupational therapy and speech therapy once a week -- add that to all of our other appointments and we're one BUSY family! Jack has his 18 month checkup soon...I'll be sure to post an update! I am also adding some new pictures this afternoon!

Jack is now 17 months old!!! Such a big boy! Happy 17 month birthday Jack Riley!!! We've all been doing very well. Last week Jack got another haircut -- he was so good. He sat very still and laughed each time the scissors snipped -- too cute! He looks like such a little boy with his new hair cut. Jack's getting the hang of moving on his belly -- he does a sort of Army crawl now (of course it's when he feels like it!) we're happy he's moving! He can say Dada, Mama, Baba, and can snort like a piggy -- Thanks to Grandma Josie -- ha ha! He's eating VERY well and tries something new every day...Jack's the kind of guy who needs to taste a new food several times before he likes it. Recently we had several discussions with Jack's Dr's regarding anti-seizure medication. We were told even though it's technically okay to wait to put him on the medication, it's much healthier for him to be on the medication at this time. So we met with the neurologist again and he prescribed Tegretol. Jack started 1/3 of his dose earlier this week...over the next 3 weeks we are to slowly increase his dosage until he's at his therapeutic level of 3 ml 2 times a day. It makes him very sleepy so he's taking extra long naps right now. The doctor said the sleepiness should go away after he adjusts to the medicine (in about 2 weeks). Other than being a little more tired we haven't noticed any other side effects. He's such a little trooper! We hope everyone is enjoying their summer as much as we are! Be sure to check out Jack's new pictures posted this morning!

I was that the Dr. we were going to see at the CP Clinic "lacked bedside manner" MAN, was that an understatement. First -- the facts. They took x-rays of Jack's hips and legs which looked normal. He examined Jack and diagnosed him with Spastic Hemiplegia Cerebral Palsy. He said the spasticity is mainly in his arm but Jack has very tight hamstrings on the same side as well. Add that to seizure activity and a right visual field cut and you have a 'classic' case of hemi CP. I had suspected this was the case, even though his neuro felt it was mono (one limb).

Oooookaaay, now the bedside manner thing. He was rude and condescending -- and did not speak to us AT ALL. He would ask us a question and then give his opinion into a little taperecorder. He spoke to the wall into his recorder -- not once addressing us directly -- unless it was to smirk as if to say you're an idiot. I had a list of questions -- he let me get through about 2 of them and basically ended the appointment.

He wants to see us back in 6 months.

I am upset because to me, this clinic was 'IT' as far as getting answers and information. I do have many other great resources (Jack's therapists, other docs, etc.) but this was sort of the final place to put all of the pieces together. I may try to see if we have a case manager -- or if we are going to be involved in the full program as Jack gets older.

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